Living the Could Life

How to Travel Easily with a Disability

Robert and Theresa — Tue, 25 Aug 2026 15:53:40 +0000

Reprieve

Traveling with a disability, and feeling age proud, are core foundations of Living the Could Life. We packaged an overview of some episodes using Google Notebook. We run out of spoons, too!

The first part of this broadcast jumps around a bit. However, it is entertaining and full of helpful information.

Take a listen to learn more about Traveling with a Disability, staying age proud, and taking advantage of traveling tips.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript (Transcribed by TurboScribe. Go Unlimited to remove this message.) [Speaker 3] Welcome back to Living the Good Life. Today we're doing something a little bit different. We are proud to announce that we recently finished our 20th episode of Living the Good Life, so we are going to do a bit of a review of all the episodes. Our friends at Google Notebook compiled a bit of a talk based on our previous audio that we sent to them. We're going to do it in two parts. There will be a part about travel, and we were talking about several different kinds of travel, and so as not to make it too long, there'll be a part one and part two. [Speaker 2] Imagine you've just spent like 12 absolutely exhausting hours traveling. I mean, you've navigated the chaotic airport terminals, you've squeezed into this shockingly narrow airplane seat, you've somehow wrangled your luggage into a taxi, and finally, finally, you arrive at your destination. [Speaker 1] Right, you're just running on fumes at that point. [Speaker 2] Exactly. So you approach the front desk of your hotel, you confirm your reservation for a fully accessible room, you grab your key card, and you ride the elevator up. You swipe the card, push open the door, and the bed in front of you is 30 inches off the ground. [Speaker 3] Oh, wow. Yeah. [Speaker 2] And for a wheelchair user, that 30-inch mattress might as well be glued to the ceiling. So today, we're really tearing down this pervasive myth of the ADA checklist, and we're completely redefining what travel actually looks like for real bodies. [Speaker 1] It's such a phenomenal topic, to be honest, because it forces us to really re-examine the built environment that we interact with every single day. I mean, most people just assume that if a space is legally compliant, it's functionally usable. [Speaker 2] Right, which makes total sense on the surface. [Speaker 1] Right. But what we're going to explore today is how architectural compliance routinely, and I mean routinely, fails human reality. And more importantly, we're looking at how travelers and certain segments of the travel industry are radically adapting to those failures. [Speaker 2] Yeah. Okay, let's unpack this, because the mission of today's deep dive is to go through this incredibly rich, just eye-opening stack of material from the Living the Good Life series. [Speaker 1] It's a fantastic series. [Speaker 2] It really is. The sources we have in front of us are this massive collection of highly detailed travel logs, hotel accessibility audits, remote expedition reviews. I mean, we are going to be tracking journeys that stretch from the ancient bicycle-choked cobblestones of Amsterdam all the way to the rugged Alaskan wilderness, and even into the massive inland seas of the American Great Lakes. [Speaker 1] Yeah, it's a huge geographical spread. [Speaker 2] Totally. But we aren't just looking at tourist hotspots here. We're looking at how people explore the world when they are navigating what our sources refer to as body disruptions, which, by the way, I think is just a brilliant umbrella term. [Speaker 1] It really is. It covers physical disabilities, chronic illnesses, mobility limitations, neurodivergence. It's very inclusive. [Speaker 2] Exactly. We're looking at how people travel at a pace that honors their actual bodies, rather than just constantly fighting against them. [Speaker 1] What's fascinating here is that this material operates as so much more than just a set of travel itineraries. It's really this profound exploration of geography, of human empathy, and the hidden mechanical layers of accessibility that most travelers never even realize exist. It challenges the very baseline of what makes a physical space welcoming. Because, as you pointed out with that hotel room example right at the start, a space can legally invite you in while simultaneously putting up physical barricades to your actual comfort. [Speaker 2] Right. Before we can embark on these grand sweeping adventures to the Alaskan wilderness or whatever, we have to look at the absolute baseline of travel, because the foundation of any trip anywhere on Earth is a hotel room. [Speaker 1] 100%. [Speaker 2] If you cannot rest safely, if you can't use the bathroom safely, if you just cannot recharge your physical and mental batteries, the destination outside that room honestly doesn't matter. The museum could be spectacular, but if your launch pad is compromised, you never get off the ground. [Speaker 1] That's a really crucial framing. The hotel room is the foundational infrastructure of travel. And our sources reveal this massive, just pervasive blind spot in the modern travel industry, which is the deeply ingrained idea that ADA, the Americans with Disabilities Act, that ADA compliance is synonymous with comfort or even true functional accessibility. [Speaker 2] And they're not the same thing. [Speaker 1] Not even close. [Speaker 2] This totally blew my mind as I was reading through the audits, because I think, like a lot of people, I just assumed ADA regulations were this comprehensive safety net, like they had it all figured out. [Speaker 1] Yeah, that's the common assumption. [Speaker 2] But the sources make it crystal clear that ADA compliance is merely the legal minimum. It is a rigid architectural checklist. It's a set of measurements. It is absolutely not a guarantee that a specific room will actually work for a unique human being navigating a specific body disruption. [Speaker 1] Right. And if we connect this to the bigger picture, the ADA requires structural modifications, right? Like widened doorways to accommodate the width of a standard wheelchair or the installation of grab bars near toilets, visual alarm systems for the hearing impaired. And those are vital. [Speaker 2] Oh, absolutely vital. [Speaker 1] They're legally mandated baselines, but the law doesn't aggressively regulate the nuanced functional details of living. Like it dictates the width of the door, but it doesn't necessarily dictate the specific layout of the furniture once you actually get through that door. [Speaker 2] And that is exactly where the concept of compliance falls completely apart in the real world. Let's go back to that 30 inch bed example. You know, you might look at a high bed and think, oh, that feels luxurious, like sleeping on a cloud or whatever. [Speaker 1] Sure. [Speaker 2] But break down the actual physical mechanics for us. Why is a 30 inch bed in an ADA room such a catastrophic failure in design? [Speaker 1] It really just comes down to basic biomechanics and physics. So a standard manual or power wheelchair seat typically sits about, let's say, 19 to 20 inches off the ground. [Speaker 2] OK. [Speaker 1] If an individual with limited or zero lower body mobility needs to get out of that chair and into bed, they have to perform a lateral transfer. They're relying entirely on upper body strength, leverage and momentum to slide from the chair to the mattress. Now, if the bed is relatively level with the chair, say 20 to 22 inches high, that transfer is a horizontal movement. It's manageable. But if the bed is 30 inches high, you're suddenly demanding that this person perform an uphill pivot transfer. [Speaker 2] So they're having to lift their entire body weight, essentially dead weight, like 10 or 11 vertical inches using nothing but shoulder leverage. [Speaker 1] Precisely. Biomechanically, it's an impossible ask for a lot of people. The bed becomes a literal wall. The room is legally compliant because the door was wide enough to let the chair in. But the user is fundamentally trapped in their chair because they can't get into the bed. Wow. Yeah. So the hotel checked the legal box, but they completely failed the human being. [Speaker 2] And the sources outline a whole catalog of these hidden hazards. Like they talk about the roll-in shower that has a surprise three inch lip at the entrance to keep the water in. [Speaker 1] Oh, that's a classic one. [Speaker 2] Right. And to a walking guest, a three inch lip is basically invisible. You just step right over it without thinking. But think about the front casters on a wheelchair. Those really small wheels at the front. A three inch lip stops them dead. [Speaker 1] It acts like a parking block. [Speaker 2] Exactly. A three inch lip is not a roll-in shower. It's a barricade that requires you to pop a wheelie over wet tile, which is incredibly dangerous. [Speaker 1] Or consider the equipment that's actually provided. The sources detail this all too common scenario of the wobbly, unstable plastic shower chair that a hotel just sort of tosses into the back of a closet. [Speaker 2] Oh, yeah. The flimsy ones. [Speaker 1] Yeah. It isn't anchored to the wall. It isn't medically rated. It's just a cheap plastic stool sitting on slippery, soapy tile. I mean, that isn't accessibility. That's just a massive liability waiting to happen. [Speaker 2] My personal favorite, and by favorite, I mean, the one that made me want to pull my hair out was the thermostat. [Speaker 1] Oh, right. [Speaker 2] The sources described this fully certified, supposedly wheelchair accessible room where the thermostat to control the air conditioning was placed six feet up the wall. Which is just, it's absurd. It is. If you're sitting in a chair, you literally cannot reach it. You are trapped in a room where you have zero autonomy over your own environment. Or the people on the door, also drilled in at six feet high, you hear a knock and you have absolutely no way of verifying who is standing on the other side of your door. [Speaker 1] It just highlights a profound disconnect between the architects who are drafting the blueprints and the actual end users experiencing the space. I mean, the architect drew a box that said door, but they didn't think about the sight lines of the person opening it. And this unpredictability, this constant friction of arriving at a hotel and wondering which crucial element is going to be wildly misconfigured is exactly why the sources pivot to a really surprising defense of mid-scale chain hotels. Specifically, they highlight brands like the Holiday Inn Express. [Speaker 2] See, I really have to push back on this a bit because I have always viewed those massive standardized chains as just painfully bland. [Speaker 1] A lot of people do. [Speaker 2] Right. Because if you're traveling to, say, a vibrant historic city, isn't staying in a copy-pasted room across 2000 identical locations, just sacrificing the magic of travel. You're trading the cultural immersion of a cool local boutique hotel for a beige box that looks exactly the same whether you're in Ohio or Florida. You're trading wonder for boredom. [Speaker 1] From the perspective of a traveler without a body disruption, your critique is entirely valid. It is a sacrifice of local flavor. But this raises a really important question that the sources bring up. What is the psychological and physical cost of a surprise? [Speaker 2] The cost of a surprise. [Speaker 1] Yes. Because for a traveler navigating chronic fatigue or a visual impairment or neurodivergence, a charming boutique hotel often translates directly into a maze of exhausting, unpredictable variables. [Speaker 2] Okay. I see where you're going with this. [Speaker 1] Yeah. Unpredictability drains energy. Predictability, on the other hand, is accessibility. When a traveler with these specific needs walks into a standardized chain hotel, the layout is a known quantity. They instantly know that the bathroom door slides to the left. They know the bed is uniformly 22 inches high. And they know the light switch is exactly where their hand expects it to be on the wall. [Speaker 2] So they don't have to solve the spatial puzzle of a new room. [Speaker 1] Exactly. Every single ounce of mental bandwidth and physical energy you save by not having to hunt for an outlet or rearrange furniture to make your chair fit or figure out some bizarrely designed modern shower. That is energy you can bank and spend on actually enjoying the vacation the next day. [Speaker 2] That makes so much sense. It's all about cognitive load. If you're already burning massive amounts of energy just navigating an airport or a new city in a body that requires constant management, the last thing you want is for your bedroom to be an escape room puzzle. You need it to be a frictionless environment. [Speaker 1] And the sources share this brilliant historical anecdote about Ray Charles that perfectly illustrates this exact dynamic. [Speaker 2] Yes. I loved this detail. Because Ray Charles, one of the most famous musicians in the world, could have afforded to stay in literally any luxury penthouse on the planet. But he famously favored staying at holiday inns, particularly back when they were one of the very first chains to aggressively enforce identical standardized room layouts across all their properties. [Speaker 1] Because for a traveler with total blindness, that standardization was the ultimate luxury. He could walk into a holiday in Seattle or a holiday in Miami, and his mental map of the room was instantly flawlessly accurate. [Speaker 2] Right. He wasn't stressing about tripping over a randomly placed modernist coffee table. [Speaker 1] Exactly. Or feeling along unfamiliar walls just to find the bathroom door. The architecture was predictable, which meant his autonomy was guaranteed. [Speaker 2] It really reframes the idea of what luxury actually is. Luxury isn't always high thread count sheets. Sometimes luxury is simply the absence of friction. But the sources are also very pragmatic here. Even at a chain hotel, how do you guarantee you're actually getting that predictable, accessible room? They point out some serious red flag language to watch out for during the booking process. [Speaker 1] They absolutely stress that travelers cannot rely on vague adjectives. The primary advice is to demand nouns and numbers. [Speaker 2] Right. If you call a front desk to confirm your reservation, and you ask if the room is accessible, and the clerk says, oh yeah, it's pretty accessible, or it should be fine for a wheelchair, the sources say you need to hang up and run. [Speaker 1] Pretty accessible is hospitality speak for. The front door is wide, but good luck getting your chair close enough to the bathroom sink to actually wash your hands. A traveler with a body disruption cannot survive on pretty accessible. They need quantitative, verifiable data to ensure their safety. [Speaker 2] So you don't ask, is the bed okay? You have to ask, can you take a tape measure and tell me exactly how many inches high the top of the mattress is from the floor? You literally have to force the hotel to quantify their compliance. [Speaker 1] But even with rigorous pre-trip verification, the travel industry is chaotic, right? Rooms get double booked, pipes burst, miscommunications happen. So what do you do when you show up at midnight, exhausted, and the hotel has given your specifically required accessible room away? Or they try to put you in a room with a massive step up to the bathroom. [Speaker 2] This was a piece of advocacy in the sources that I think everyone, disabled or not, needs to know. They outline a specific legal protocol known in the industry as the ADA walk. [Speaker 1] It is a critical tool of self-advocacy. If a hotel cannot provide the specific disability accommodating room that you booked, confirmed, and paid for, they can't just shrug their shoulders and say, sorry, we're full. [Speaker 2] Right, they can't just kick you to the curb. [Speaker 1] No, it is their legal and financial responsibility to rebook you at a comparable nearby hotel that does have an accessible room available. And they must cover the cost of your transportation to get there. [Speaker 2] You really have to know your rights. You're not being a difficult guest or a Karen for demanding the basic foundational requirement of your stay. You are simply holding the corporation to a binding legal contract. [Speaker 1] And we really cannot discuss the foundation of accessible travel without addressing a massive, often completely invisible demographic that the sources shine a very bright light on. The caregivers. [Speaker 2] Yes, the spouses, the adult children, the partners, the dedicated nurses. Caregivers are fundamentally the human infrastructure that makes travel possible for countless people with severe body disruptions. Yet, as the sources point out, the travel industry almost never designed spaces with the caregiver in mind. They're basically an afterthought, if they're thought of at all. [Speaker 1] Think about the physical toll of caregiving in a space not designed for it. The sources highlight the critical need for lower beds, not just for the traveler transferring from a wheelchair, but for the caregiver. If a bed is too high or too low, a caregiver who has to physically assist with turning or lifting a partner is risking severe lumbar back strain. If the caregiver blows out their back on day two of a 14 day trip, the vacation is over. It becomes a medical emergency for both of them. [Speaker 2] And it isn't just the physical strain, right? It's the psychological space. If you're traveling as a caregiver, you are essentially on the clock 24 hours a day. [Speaker 1] Absolutely. [Speaker 2] The sources emphasize the need for rooms that offer separate sleeping spaces or even just a heavy curtain or a partial architectural divider. Caregivers need a basic sense of privacy to decompress, to read a book with a light on, to simply have a moment where they aren't visually monitoring their partner. [Speaker 1] Furthermore, they require logistical proximity. An accessible room should ideally be located close to the elevator banks. Why? Because it's often the caregiver who is making multiple trips to haul heavy medical equipment or making quick runs to get ice for medications or pushing a manual chair. [Speaker 2] Right. If you stick the accessible room at the very end of a quarter mile long carpeted hallway, you are taxing the caregiver's physical endurance before they even get to the lobby. [Speaker 1] Exactly. [Speaker 2] So if we conclude that land-based architecture, no matter how many ADA laws we pass or how rigorously we measure the beds, will always have these unpredictable friction points from narrow doorways to exhausted caregivers, what's the solution? How do we bypass the friction of the land entirely? [Speaker 1] The answer the sources provide is fundamentally a geographical workaround. If the land is hostile, you bypass the land. You take the hotel with you. [Speaker 2] Which brings us to the second major revelation of this deep dive, the floating resort, cruising as the ultimate adaptive travel hack. [Speaker 1] It represents a total paradigm shift in how we approach accessible travel. [Speaker 2] Now, I have to be completely honest here. Before reading these sources, I had a massive, deeply ingrained prejudice against the cruise industry. [Speaker 1] A lot of people do, yeah. [Speaker 2] I always pictured it as the absolute worst aspects of mass tourism. Like thousands of people fighting over buffet shrimp, forced bingo games by the pool, overwhelming noise, and just a general feeling of being trapped in a floating shopping mall. I completely wrote it off as unauthentic travel. [Speaker 1] That is a very common perception, especially among travelers who prioritize rugged, independent exploration. But when you look at cruising through the lens of body disruptions, the narrative flips entirely. The sources argue that a modern cruise ship is structurally the most enabling environment on the planet. [Speaker 2] And they back it up with some incredibly compelling architectural evidence. The term they use that really stuck with me is the zero trip environment. [Speaker 1] It's a great term. [Speaker 2] If you're a full-time power chair user, or someone with cerebral palsy, or even just someone who is six weeks out from a knee replacement surgery, terrain is your absolute biggest enemy. On land, you're constantly battling curbs, potholes, tree roots, pushing up sidewalks, steps into restaurants. [Speaker 1] But a cruise ship is an engineered bubble of accessibility. There are no curbs on a ship. Ramps aren't these hastily added wooden structures in a back alley. They are gently graded, seamlessly integrated parts of the deck design. Hallways are wide and perfectly flat. Doors to public spaces are universally automatic. [Speaker 3] Wow, yeah. [Speaker 1] And crucially, there are massive vertical elevator banks located at the forward, midship, and aft sections of the vessel. You can traverse a city-sized structure for 14 days and completely bypass a single set of stairs. [Speaker 2] But I still wrestled with the psychological aspect of it when reading this. Let's say we dock in a beautiful Mediterranean port. Everyone rushes off the ship to go ziplining or take a grueling walking tour of ancient ruins. But my body is just done. I've hit a wall, my pain levels are spiking, and I physically cannot leave the ship. What about the FOMO? The fear of missing out? If I have to stay behind, aren't I just trapped in a floating hotel room while everyone else is experiencing the world? [Speaker 1] This is exactly where the sources introduce the concept of energy autonomy. And it is a brilliant psychological reframing. Let's compare the land to the sea. If you're staying at a land-based resort in Cancun and you have a flare-up of chronic fatigue, you have to stay in your room while your family goes down to the beach. You're lying in bed staring at a drywall ceiling. You are entirely removed from the experience of travel. [Speaker 2] Right, you feel like a burden and you feel isolated. [Speaker 1] But on a cruise ship, your room is the experience. If you need to rest, you don't feel like you're missing the destination because the destination is moving past your window. You can lie in your bed, open the balcony door, feel the sea breeze, and watch the ocean, the fjords of the islands slog by. You're still actively participating in the journey, but you're doing it entirely on your body's terms, without expending a single calorie of energy. [Speaker 2] It's literally a built-in escape hatch that travels with you. Think about the logistics. If you're in a crowded city and you suddenly get overwhelmed, whether it's pain or sensory overload, you have to figure out how to escape. You have to find a bench, call an Uber, wait on a busy curb, navigate foreign traffic, and finally get back to your hotel. It is an exhausting process just to find relief. [Speaker 1] It really is. [Speaker 2] On a ship, you can go down to a massive, loud, Broadway-style show in the main theater. You can push your boundaries and participate in the fun. But the moment the lights or the crowd become too much, a dark, quiet, safe room containing your own bed and your own medications is literally a five-minute frictionless elevator ride away. You never have to negotiate with a foreign transit system to find your sanctuary. [Speaker 1] And that concept of sanctuary extends far beyond just having a quiet bedroom. What is truly fascinating here is the unseen medical infrastructure of these modern ships. [Speaker 2] This was wild to me. [Speaker 1] For travelers navigating severe chronic conditions, or even individuals with terminal illnesses who are looking to take one last meaningful trip with their families, the idea of being hours away from a major hospital is paralyzing. It creates a baseline of anxiety that ruins the trip. [Speaker 2] Because if something goes wrong on a walking tour in a small village, you're reliant on a rural clinic that might not speak your language or have your medical history. [Speaker 1] Exactly. But modern cruise ships are designed as floating cities, which means they require city-level services. Down on the lower decks, usually hidden from the general passenger areas, these ships have incredibly advanced medical centers. [Speaker 2] And we are not talking about a school nurse's office with a first aid kit, some aspirin, and a cot. [Speaker 1] Far from it. We are talking about highly sophisticated mini-hospitals. They're equipped with ICU-level stabilization gear, defibrillators, advanced cardiac monitors, full x-ray machines, and pharmacies. They're staffed by international teams of doctors and nurses who live on board. They even coordinate with specialized third-party medical companies. For example, there is a company called Dialysis at Sea that brings nephrologists and dialysis machines on board specific sailings, allowing patients with end-stage renal disease to receive life-sustaining blood-filtering treatments while they cruise the Caribbean. [Speaker 2] That is staggering. The sources even note a detail that is objectively grim. But for some travelers, it represents the ultimate realistic relief. These massive ships are equipped with on-board morgues. Now, no one wants to think about that on vacation, obviously. But if you're traveling with a terminal diagnosis, the psychological safety of knowing that clinical intervention and dignified handling of the worst-case scenario is literally under your feet cannot be overstated. It completely down-regulates the nervous system's alarm bells. You can finally relax because the safety net is traveling with you. [Speaker 1] That down-regulation is key. And it isn't just about acute medical emergencies. For neurodivergent travelers or individuals prone to severe sensory overload, the cruise industry is actually pioneering some incredibly thoughtful accommodations. The sources highlight that several major cruise lines are now achieving certifications from organizations like Culture City. [Speaker 2] What does that actually look like in practice on a ship? Because ships are notoriously loud. [Speaker 1] It looks like intentionally designing environments for differing sensory bandwidths. Let's use an analogy. Imagine trying to tune a delicate radio to catch a faint signal, but someone is shining a massive strobe light in your eyes and blasting an air horn. Your brain's processing bandwidth is entirely consumed by filtering out the violent noise and light, leaving zero bandwidth for actually hearing the radio or enjoying the environment. That is what a standard casino or dining room feels like during sensory overload. [Speaker 2] Wow, that's a great way to put it. So to counter that, the ships are creating designated low-sensory zones. These are quiet lounges where background music is strictly banned, the harsh overhead lighting is significantly dimmed, and the crowds are controlled. It gives the brain a place to reset. They also offer sensory bags at guest services, which include things like noise-canceling headphones and strobe reduction glasses for people prone to visually triggered migraines or seizures. They're integrating closed captioning on all the screens and braille on the elevator buttons and cabin doors throughout the ship. [Speaker 1] They're also providing something profoundly important for certain medical conditions, which is climate control autonomy. [Speaker 2] Yes, this is a massive issue for travelers undergoing active cancer therapies or individuals dealing with severe thyroid imbalances or menopause. Their internal body temperatures can wildly, violently fluctuate from freezing to sweating in minutes. [Speaker 1] Oh, absolutely. [Speaker 2] If you're on a tour bus, you cannot force 40 other people to blast the AC just because you're having a hot flash. But on a ship, you have a digital thermostat in your cabin. You have total, undisputed control over your immediate environment. You can drop the temperature to 60 degrees if that is what your physiology demands in that moment. [Speaker 1] And we must mention the culinary infrastructure. For individuals with severe gastrointestinal disruptions, Crohn's disease, celiac disease, or life-threatening food allergies, traveling often devolves into what the sources call restaurant roulette. [Speaker 2] That is the perfect term for it. Trying to explain the absolute severity of a cross-contamination peanut allergy to a busy waiter in a foreign language is a terrifying, exhausting nightmare. You are gambling with your health at every meal. [Speaker 1] But on a cruise ship, the dining room operates on a pre-vetted system. When you book the cruise, you register your specific dietary customization with the accessibility department. When you sit down in the main dining room, the maitre d' and your dedicated wait staff already have a digital profile of your needs. [Speaker 2] That's so smart. [Speaker 1] Your food is prepared in a dedicated allergy-safe galley. It removes an enormous amount of daily friction and anxiety. You can actually enjoy the food instead of interrogating it. [Speaker 2] So we have thoroughly established that the cruise ship is the perfect, highly controlled, floating base camp. The architecture works. The medical safety nets are in place. The food is safe. But a base camp is useless if it doesn't go anywhere. Right. The destination absolutely matters. And this is where the sources throw us a massive curveball. [Speaker 1] We aren't going to the predictable Caribbean islands or the crowded ports of the Mediterranean. [Speaker 2] No. Instead, the sources take this floating base camp somewhere completely unexpected. [Speaker 1] A quick but important note. The information shared in this podcast is for general educational and entertainment purposes only. We love sharing our insights. But please remember, this content does not constitute medical, health or professional advice. Every body and every situation is unique. You should always consult with a qualified medical specialist or health care professional before starting any new program, making lifestyle changes, or acting on any information you hear today. Your health is your responsibility. So let's keep it safe. (Transcribed by TurboScribe. Go Unlimited to remove this message.) Show Notes

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Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Finding the Perfect Care Giver

Robert and Theresa — Tue, 18 Aug 2026 12:43:00 +0000

Who Will Care?

Finding the perfect caregiver for those with a new disability is no easy task. There is so much to be considered. Both the caregiver and the receiver have special needs.

In this episode, we offer a few suggestions for finding the perfect caregiver - one who understands the enormity of the job and who can commit to assisting.

The receiver of the assistance also needs to understand what a huge undertaking the caregiver assumes.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript Robert: Welcome back to Living the Could Life, where we explore real-world travel for real bodies, adventures that are meaningful, doable, and full of wonder. Today we're talking about something that doesn't get discussed enough, how to choose the right caregiver or the right care receiver before you commit to the partnership. Theresa: Because caregiving is a relationship, and like any relationship, it can thrive or it can fall apart if the fit isn't right. Robert: We're going to talk about expectations, boundaries, physical capability, emotional readiness, and what both people should add before saying yes. Theresa, you've seen this firsthand. What happens when the caregiver isn't the right match? Theresa: Well, a lot. And sometimes you just have a default caregiver, so you have to make it the right match. Right, Robert? Well, you have to make it work. Yeah, you've seen it too. Robert: Yeah, yeah. And sometimes you really have no choice and you just have to get through it. Theresa: Like, as in our case. Not quite. Well, but still, sometimes a caregiver, when you choose one, you have to be careful, just because maybe they're all excited and they have good intentions and they want to help you, but maybe they just don't understand what it takes. Say that you need to be, have transfers done, or a lot of physically demanding help. Robert: They just don't. Theresa: Right. They may not have the physical strength to do it. So, sometimes they could also have the wrong attitude, and those are definitely the people you don't want, because they can't be resentful, they have to be patient, and they cannot have a savior complex, because that just doesn't work out. It actually makes the person who is receiving the care feel not so wonderful. Robert: And the care receiver can feel unsafe, guilty, or even like a burden. Theresa: Exactly. The partnership ideally has to be balanced, respectful, and realistic, and that doesn't always come immediately. Robert: Let's talk about what a person needing care should ask before choosing a caregiver. Theresa: First, if you need transfers, mobility support, toileting assistance, those are not small tasks, so the person should be physically able to do what's required. And even if there aren't any of those highly physical tasks, I know if I fall down sometime, or trip, it's helpful to have somebody pick me up. Robert: Secondly, do they understand spoon theory? This is the theory of energy management, energy budgeting that we talked about earlier, because if they don't get the idea of energy budgeting, they'll push you past your limit. Theresa: Right, we're going to talk a little bit more about spoon theory later in this session, because we found it's something that really works, and it's practical. Third, do they communicate well? You need someone who listens, doesn't take things personally, and doesn't guilt trip you. Robert: Or, do they respect eponymy? A caregiver should support independence, not override it. Theresa: Exactly. And then finally, do they have the emotional bandwidth? Caregiving requires patience, flexibility, and resilience. And it's not just the care receiver who should ask, the caregiver also needs to ask some questions. Robert: Now, let's look at what should caregivers ask themselves? Theresa: First, this matches what the recipient should ask. If you want to be a caregiver, you need to ask, am I physically capable of this? If you can't safely lift, transfer, or support mobility, you shouldn't take the role. And of course, it depends on the person you are helping with caregiving. Robert: Second, do I have the right temperament? Caregiving is not for people to get easily frustrated or overwhelmed. Theresa: Third, do I understand the duties required? Things like ADLs, and that's activities of daily living, medication routines, travel, logistics. It's real work. Robert: Or, do I have enough spoons myself? Caregivers can burn out fast if they don't manage their own energy. Theresa: Right. And finally, can I communicate honestly? You need to be able to say, I need help. I'm tired, or I can't do this safely. Robert: Let's look at travel now. Travel adds a whole new layer. Theresa: Oh, that even for people without any kind of disability or body disruption. That's always true. Travel requires physical stamina, patience, problem solving, and the ability to adapt when things go sideways. Robert: Care receivers should ask, can this person handle airport stress? Can they manage mobility equipment? Do they stay calm when plans change? Can they advocate for me if I'm overwhelmed? Theresa: And caregivers should ask, can I manage transfers in unfamiliar environments? Can I handle long days with unpredictable spoon costs? Am I comfortable asking for help from airport or hotel staff? And do I understand accessibility needs well enough to plan ahead? Robert: Let's talk about red flags now. Theresa: For care receivers, the caregiver gets irritated easily. They minimize your disability. They ignore your spoon limits. They make you feel guilty. They don't follow instructions or they totally forget their duties or they're physically unable to help you safely. Robert: For caregivers, the care receiver expects you to be available 24-7. They don't communicate their needs. They refuse adaptive tools. They ignore your boundaries. They expect you to just know what they need. Theresa: And really, it is like a job. It's like going to an interview. I highly recommend, especially if we're going to travel, do a short day or even if you're not traveling, just spend a day with them at home and see what it's like. And if you can't do it, you would know from the start. And that works better for both people involved. Robert: That sounds like a good idea. It's kind of like we to do our chase downs or we'll be kicking lawns with ISIL students. And we take them out for a weekend or something to see if they could manage it, to see if we could manage them. You see they have the right equipment. So you could use the same idea. Theresa: Right. It is a learning experience and you don't have to necessarily be an expert the first day. I think whether you're on the receiving or the giving end, it's a new skill to learn and things change often. Robert: OK, let's talk about Swoon Theory again, but this time from a psychological angle. Theresa: Swoon Theory isn't just about physical energy. It's about predictability. People with disabilities often live with unpredictable bodies. Pain spikes, hot flashes, waves of fatigue, sensory overload. Spoons give structure to something that feels chaotic. Robert: And caregivers need to understand at spoon level, our moral judgment. You're not lacing us. Theresa: Spoon Theory helps caregivers avoid pushing someone past their limits. And that's the same for the care receiver, too. The caregiver also has a certain number of spoons. It also helps care receivers communicate without guilt. Saying I'm out of spoons is a boundary. It's not a failure. Robert: There's also a psychological safety component. When both people use Swoon Theory, it reduces misunderstanding. Theresa: Right. Because instead of arguing about why someone can't do something, you're acknowledging the reality of their energy budget. Robert: Let's talk about expectations. What psychological traits matter in a care partnership? Theresa: For care receivers, you need someone who listens, someone who doesn't take things personally, someone who doesn't guilt trip you, someone who respects your autonomy, and someone who can regulate their own emotion. And for caregivers, you need a care receiver who communicates clearly, who tells you what they need, who doesn't expect you to read their mind, and who respects your boundaries, too. And I think you need to keep personalities in mind. Just because somebody needs care or you want to be a caregiver, it doesn't mean that you will get along or that both of you are nice people. It's something to take into consideration. Caregiving is not a place for passive-aggressive behavior, martyrdom, or silent resentment. Those things will quickly destroy any partnership you have. Robert: Let's talk about misunderstandings. They happen. How do you resolve them? Theresa: First, if you've thoroughly evaluated each other and have come to acceptable terms, you should be able to assume that you both have good intent. Most conflicts come from miscommunication, not malice. Robert: Second, use I-statements. I feel rushed when I need more time to... I'm overwhelmed when... Theresa: And third, back to the spoons. Check the spoon levels of both people before discussing anything emotional. If either person is out of spoons, the conversation will go badly. Or, clarify duties. Robert: A lot of conflicts come from mismatched expectations. Theresa: And fifth, schedule check-ins. Once a week, sit down and ask, What's working? What's not? What needs to be adjusted? And what do we need more support with? Care partnerships thrive when communication is proactive and not reactive. And keep in mind, you may have more than one caregiver. And the same if you are a caregiver. Maybe you care for other people a few days a week or once a month or you just help out. Let's give our listeners some best practices. For care receivers, be honest about your needs. You can't expect your caregiver to magically know what you need. And I think that's especially true with people who have invisible disabilities. Don't minimize your disability. And don't push yourself to make the caregiver comfortable. Although, on the other hand, if you've talked this out, you shouldn't push your caregiver either. Respect your boundaries and their boundaries. And communicate spoon levels early in the day. Robert: For caregivers, learn the person's patterns. Ask before helping. Don't assume. Keep instructions simple and calm. Don't rush. Take breaks. Advocate when needed, but don't override the timing. Theresa: And for both, it's helpful to build routines. Celebrate even small wins. Laugh together. Take rest without feeling guilty. And remember that you are a team. Robert: Your relationships are care partnerships. Succeed when both people choose each other intentionally. Communicate honestly. And respect each other's limits. Theresa: And when misunderstandings happen, as they always do, you resolve them with compassion, clarity, and a shared understanding of spoon limits. Robert: Thanks for joining us for our discussion of caregiving. We'll see you next time. Theresa: And next time, we will be delving into traveling with a caregiver and go more into hopeful tips for doing that. See you next week. (Transcribed by TurboScribe. Go Unlimited to remove this message.) Show Notes

Music

Links to Referenced Resources

TSA Cares

Spoon Spending Chart

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Caretaking for the Newly Disabled

Robert and Theresa — Tue, 11 Aug 2026 13:15:50 +0000

Who Cares?

When disruption affects your body, you may need some times for caretaking for the newly disabled. It's not always the easiest especially if you were independent prior to the bodily change. What does the caretaker need to know? How can they effectively assist you?

What do you need to do to help them assist you? It all depends. We briefly look at some of the situations that you may not have thought of. A sympathetic and trusted caretaker can make your recovery or adaption less stressful.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript Robert: Welcome back to Living the Good Life, where we explore real-world travel for real bodies. Adventures that are meaningful, doable, and full of wonder. I'm Robert. Theresa: And I'm Theresa. Today, we're diving into a topic that affects millions of families but often doesn't get nearly enough airtime, and that is caregiving for someone who's recently become disabled. Robert: Whether the disability comes from an accident, an illness, or a sudden change in mobility, the early months are intense for the person adapting and for the caregiver learning a whole new world. Theresa: So today, we're going to talk about that. I think we're both experts on the subject, at least for my type of disability, which is a hidden one, but we will talk about practical stuff like ADLs, which are activities of daily living, and also the emotional and logistical challenges. And that includes for travel because that's what we are concentrating on. And yes, we will absolutely talk about spoon theory, which is something we learned about researching for this podcast. First, I think it was personal care. I had to look at everything carefully. I have been pretty independent, traveled solo a lot of my life, and assume that I could still travel without a caregiver. That pretty much was a disaster. And it's not good when you have flight changes or you can't see well enough to see if your flight has changed or where the gate is. Fortunately, when that happened, I did have the app, but I just wanted to reconfirm so they didn't have to walk all the way to a gate that might be the correct gate. Because walking through an airport is like walking through an obstacle course. There's too many people. There's too many distractions. It's hard to see. Because I have an invisible disability, people don't see. They don't see me from behind. I don't believe one of those times that I was wearing an eye patch because I thought that was only for driving. And I guess that's true because that's true because I was on a group tour and people asked others why it was taking so long to walk on ice or why it was so slow. And that's because I had to check out everything because I don't have depth perception. I don't have peripheral vision. So then that's when Robert became my caregiver and I'm lucky to have somebody who helps me. I had to change routines. You know, he reminded me to put my glasses on when I was going out or grab a patch. He also had to understand my ADLs. Now everything takes me at least twice as long getting dressed, brushing my teeth, using the bathroom, going outside. All of that took extra time. Robert: And these are the ADLs Theresa's talking about. Things like bathing, dressing, eating, toileting, transferring and mobility. Theresa: And fortunately for me, a lot of those things I can do myself with extra time. I don't cook anymore. I turn on the wrong burner and I'm afraid of burning the house down. I don't use knives. Robert: Yes, you definitely don't use knives. Theresa: No, but sometimes I've cheated if I'm really careful. Because when you're not here, but I cut a piece of cheese and that's about it. And I'm very, very careful and it's scary. But for me, I didn't grow up with this vision loss. And when it happens suddenly, you're not independent anymore. You can't drive anymore. You can't do anything. You figure out how you want to get help. But on the same hand, for me, because I've been dependent, I feel ashamed of my disability and guilty having to ask people for help because it's so opposite of how I lived before. And I guess part of that is, do I need equipment? And I did get a cane because I have no depth perception. Stairs are very difficult. They can look just like a boardwalk and a boardwalk can look like stairs. And then I can get, you know, I'm suddenly frightened in out of it. I have to decide what's safe. I have to preserve dignity. And even though my disability is mostly invisible, when I wear a patch, people stare, look at me funny. I know one time there was maybe, I'd say, a 12 or 13 year old just staring at me as he walked out into the parking lot from a store, which I don't usually go to anymore. But he crashed into a light pole. And because I'm mean, I guess I thought, that's what he gets. Like, don't stare at me. And at least I'm outside. Robert: And then there are the rude people who will pass by and say, Arrrrgh. Theresa: Oh yeah. I've had, because I wear a patch, but for me, the thing to do is say, hey, matey. And don't let them, I mean, I would never consider saying that to somebody unless it was an actual pirate that I would run. But yeah, sometimes there's new things I had to get used to. Robert: And there's been a huge emotional adjustment for both of us. And that's true for both the caregiver and the person who has that sudden body disruption. Theresa: Yeah, definitely is, like I said, I didn't think I needed anyone to take care of me and it makes me feel guilty and dependent, which I just don't like that. Like I said, I'm very lucky because Robert has taken care of me and he's really good. I think if you don't have the disability, sometimes it's hard to understand. Like even for me, without being able to see, there's things I have to look at everything now and it's exhausting. So Robert tries to model and pretend that he can't see either. So he knows what might be hazardous to me. And it can be exhausting for a caregiver as well, because it's just a totally different way of living. Robert: And that exhaustion can lead us right into spoon theory and energy management. So let's talk about spoon theory. It's one of the most helpful frameworks for understanding energy limits. Theresa: And we found out about this while researching topics for this. I had never heard of spoon theory until a month ago, and it really does make sense. We did another podcast totally on spoon theory, so you might want to go back and check that out. That theory came from Christine Miserandino, who has a disability and she was trying to explain to a friend how much energy it took. So the idea is pretty simple. You imagine you start each day with a limited number of spoons, but everything you do, whether it's big or small, costs you a spoon. When you run out, you're done. And that doesn't matter on how much you want to keep going. And that's something very difficult, I think, for many, especially if you were active. I mean, I used to ride my bike and I know it's not a long distance, but I used to ride my bike just as a workout, ride it hard 10 miles a day. Hard for me now would be to pedal once and hope I didn't run into a tree or something so I could still actually pedal a bike. But I can't see where I'm going. That makes it difficult and that takes up lots of energy. So no sentry rides for me anymore. Robert: And that's certainly true for someone who's recently disabled. Their spoons may be drastically fewer than they had before. Theresa: And the same thing is true for somebody going through cancer treatments like Robert. And he always thinks he has the energy of a 20 year old anyway. Robert: But I feel like I'm 19. Theresa: Oh, you're down to 19 now? Robert: Yeah, yeah. But I had my radiation treatment and some other therapies. And one of the side effects of all that was extreme fatigue. And it wasn't just for a few days, it's it can be for months or even years for some people. And I think I'm slowly starting to get out of it now. But I really do wake up in the morning with a limited number of spoons. And if I push myself too hard during the day and I'm starting to borrow spoons from the next day, I'm going to crash that next day. And it's going to take me a longer time to recover. Theresa: And that's true when you think you can keep going because you have to remember you have a limited number of spoons, no matter how many you had in the past and could go on and on and on. You really have to evaluate your personal situation. And you could run out of spoons just by getting up and taking a shower. And those things, when you change, instead of taking one spoon, as in the past, they could now take three spoons and getting dressed might cost two spoons. I know for me, getting dressed, I used to be one who could be ready for the day in about five minutes. Now I'd say it's 15 or 20. I have to see if I'm looking at a pair of pants or a shirt. That's something that I could work on. But I haven't gotten to that point, you know, to put shirts over here and the different colors and be better about sorting it out. And then going to the doctor's, that's not fun, interferes with Robert's schedule. So there's another reason to feel guilty that, you know, I'm cutting in to his day when we're both low on spoons. We make it work out. Robert: And you have to be considerate. So instead of saying something like, let's run some errands after your appointment, you should be asking, will you have spoons left for running some errands? Theresa: And I usually like stopping and running errands. Sometimes I'm pretty good at doing it. It depends on what the errand is. I often find myself just sitting in the car while Robert goes into the grocery store. I think it's probably saved us a lot of money because I'm one who likes to look at the clearance rack or look at a different kind of food or think of something different for dinner. It's difficult navigating the store if I do go, which occasionally I do just to do something. I hold on to the cart. Sometimes Robert will park me somewhere. I have to say, even if I'm parked in a corner, invariably there's somebody coming right at me and it's like, I'm out of the way. You know, I'm like, give me a dirty look. It's like, but I moved way over. You know, it's like if I pulled off the side of the road, they still want to come and crash into me. But I think there is some psychological thing about crashing into things or those things attracting you. And then because of my disability, or I actually am not disabled, so maybe I'm one of those fake people, I am impaired, which I can't drive. I have no independence, but until I'm almost totally blind, I am not considered disabled. But I've been watching a lot of people with disabilities who said, if you think you're disabled, you are. I mean, you know yourself best. And I would I don't know who comes up with requirements, but I would like them to see if they'd still consider this an impairment if they experience the same. But I guess it's neither here nor there. But that means if we park far away, I have more chances of getting hit by a car I didn't see. That happens whether you can see or not. Parking lots can be crazy, but I cannot get the little blue tag that you put on your car to park close to the store. Maybe somebody will come up with impairment parking spots and I'd be the only one who had the tag. Robert: Let's go deeper into ADLs. What does supporting ADLs look like day to day? Theresa: It's a mix of routine and flexibility. For example, maybe bathing or showering requires grab bars, which we have all of them ready to be installed in our house or a handheld showerhead. If you've listened before, you know, we recently built a house during part of that is when I lost all my vision. So we've made some adjustments. We have a shower with a handheld and a rain shower in it. The bathroom's made to fit a wheelchair if that's ever necessary. Robert: All of our doors are now wide enough. They're 36 inch doors. Theresa: Right. All of our doors are 36 inch doors. And we just plan that just in case, hoping we never need to use some of the things like a grab bar. A shower is good for anybody, whether you have a disability or not. Robert: And we have the curbless shower, too, so there's no step up. Theresa: Right. And we have, you know, those really tall bathtubs look really nice, but I'm a shorter person getting in and out of them is not fun. Oh, so, you know, maybe if you have other disabilities, say you can't use your hands very well, you might need adaptive clothing or magnetic closures, wide leg pants, slip on shoes. And I think there's a lot more that can be done with things like adaptable clothing. Robert: One of the ADLs could be transferring, and that's moving from bed to wheelchair or wheelchair to car. And it often requires a safe, manageable technique. Theresa: Right. And you don't automatically learn that. You have to practice and see how the person that you're helping feels and what works best for them. And caregivers, they learn safe transfer methods, but it's a technique. And I honestly don't know if there's anybody who provides maybe an occupational therapist. I'm not sure. I'll have to check out to see if they'll come to your house and give you instructions on how to best transfer. Robert: And these mobility opportunities help to support autonomy and that independence looks different for everyone. Theresa: Right. And independence does look different for everybody. And some people will think, oh, you know, if you're in a wheelchair, you can't walk, but maybe you can. Maybe you can only walk a certain distance or maybe you need to take rest breaks. You know, you may be able to walk so far without your wheelchair or with a cane or with somebody holding on to you like Robert always holds my hand when we walk. Sometimes I think I might look like a hostage when he grabs my arm, but nobody's called the police yet. Back to what we're talking about, sometimes brushing your teeth is difficult because of the height of the sink or how far you have to reach to turn on the faucet. Maybe holding the toothbrush is difficult. So there's a lot of things that you have to consider and people want to maximize what they can do. Robert: And you want to try and minimize burnout for the caregiver. Theresa: Right. Because caregivers have their spoon limits, too. Robert: Let's talk about travel logistics. Travel is a huge topic. When someone becomes disabled, travel can feel impossible, but it doesn't have to. Theresa: Right. Not at all. It just requires a lot of planning, flexibility, patience and often a sense of humor. Robert: Let's break it down. What's the first step? Theresa: Well, first step is assessing needs. Do you need mobility aids, medications, bathroom access, rest breaks and your energy level? You know, are you sensitive to sounds or temperature? You should all write that down before planning. You're actually building a separate travel version of your ADLs. Robert: And transportation? Theresa: If you're driving, you may already know how to transfer safely. If I know that there's accessible parking and how long you can sit comfortably. If you're flying, you're dealing with TSA, boarding assistants, aisle chairs, accessible seating, pre-boarding. Be sure when you book your ticket to go to the airline's website and request any special equipment or assistance that you need. Like I always get the wheelchair just for my safety. Robert: Hotels are another big one. Theresa: Accessible room that can be just that it meets a minimal ADA compliance. Which could be there's a grab bar in the extra high tub or there's one near the toilet. So we talked about some of these before. Think ahead. About what you need specifically and call the hotel. And I can tell you that a lot of people who work at hotels, they have not been in every room. And there are some hotels, we'll say like the Grand Hotel, Mackinac Island. We were at the Ritz Carlton in Cleveland. Every room is different. So if you have a specific style room, just ask if they can check and verify, maybe even send you photos. So some of the other things you can ask, is the shower a roll in or a step in? Does it have a chair? Are the beds at standard height? Is there enough room to maneuver your wheelchair and store it? Are the doorways wide enough? Robert: And then there's pacing. Theresa: Travel days require spoon budgeting for sure. Everybody knows that travel is not easy. Although I've heard of people who've traveled millions of times, they've never had a delayed or canceled flight, which amazes me. It's better to be prepared. So build in some rest time, stay flexible and be happy with the small wins, like finding a great accessible place to eat or navigating a new city without stress. Robert: Travel becomes slower, but richer. Theresa: Exactly. It's all about presence, not speed. As a formal fear of missing out person, or maybe I still am, but I can't do that anymore, it's been difficult to cut my itinerary in half or take a rest or just say I've run out of spoons and, you know, go get a rest. Robert: Now let's talk about the emotional side for both people. Theresa: Caregivers often feel guilt, exhaustion or fear of messing up, as do the person being cared for and who can feel grief, frustration or loss of independence. Spoon theory helps, but you still need to remember that communication is everything. Robert: And humor. Theresa: Yes, sometimes laughing together can be the best medicine. And so celebrating progress, no matter how small, even looking at what you did accomplish. Robert: If you're a caregiver for someone who's recently disabled, you're doing one of the hardest and most meaningful jobs in the world. Theresa: Exactly. It's so difficult. And if you're adapting to a new disability, your resilience is extraordinary. Not by choice, but just by if you want to keep living, you have to learn to be resilient and flexible, which is easier said than done. You're learning a new body, a new rhythm and a new way of moving around the world. Robert: Ideals, spoon theory, travel logistics, travel logistics, they're tools, they're tools. But the heart of caregiving is partnership. Theresa: And a partnership is built one day, one spoon and one victory at a time. I've added a caregiver checklist in the show notes. And next time, we're going to talk about how to choose a caregiver and also how to know if you want to be a caregiver for somebody. Robert: Thanks for joining us on Living the Good Life. We'll see you next time. We'll see you next time. (Transcribed by TurboScribe. Go Unlimited to remove this message.) Show Notes

Music

Links to Referenced Resources

TSA Cares

Spoon Spending Chart

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Cruising is the Best Vacation for the Disability Community

Robert and Theresa — Tue, 04 Aug 2026 13:19:22 +0000

20 Reasons Why Cruising is a the best vacation for those within the disability community

In this episode we continue our exploration of the advantages of vacationing by cruise ship. Those with disabilities will appreciate the benefits of traveling in a way that reduces stress, and eliminates changing hotels and dealing with learning new surroundings every day.

We share the last of the 20 reasons that show why if you are cruising with body disruptions and disability that this is definitely a choice that you should consider when making your vacation plans.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript Theresa:Welcome back to Living the good Life. Today we are going to continue our discussion about why cruising is so wonderful for people with body disruptions. Hope you enjoyed the show. Robert: Let's talk about that worst-case scenario. What if it's more than just a flare-up? What if someone actually needs clinical intervention? That's reason number nine. Onboard advanced medical centers. These are not first aid stations with band-aids and ice packs. Modern cruise ships have literal mini hospitals on the lower decks. They are staffed by international doctors and nurses, equipped with ICU level stabilization gear, x-ray machines, lab equipment for blood work, and cardiac monitors. If you have a chronic illness, knowing that life-saving medical care is literally under your feet, provides a level of psychological safety you cannot get at a remote beach resort. Theresa: Having said that, do be aware that these are not full hospitals, and you should always consult with a doctor before if you have a chronic condition, or especially if you have a terminal condition. There are people who want to do one last hurrah before, I guess, their expiration date comes up, like the next week, and they need to be evacuated from the ship. And I can tell you that does not always make your fellow passengers thrilled. So please don't put the other 3,000 or 6,000 or 900 passengers in a position they don't want to be in. Just so you know, just in case you do have an accident or something serious happen, because it can happen at any time, there is a morgue on the ship, and they will take care of you. Which, at that point, you probably don't really know. It does completely lower your nervous system alarm bells to know that you have an option for medical care. And speaking of comfort, let's add reason 10. Climate control autonomy. Many people undergoing cancer treatments or dealing with thyroid disruptions. Oh, do I get to add that to my list too? Great. They can experience extreme sudden shifts in body temperature. And I will say that also happens with menopause. So we don't want to not talk about the women who travel and might have that condition. Oh, in a hotel, the central air can be controlled by a hotel. Cruise ships have individual digital thermostats, and I do want to be honest that sometimes they are set too warm for me. And you can ask to have those adjusted. If you get a sudden chill or a massive hot flash, you can change your immediate environment in seconds. And I'm one who likes to keep the thermostat at meat-locker temperature. Robert: It's all about control over your environment, isn't it? Which brings us perfectly to our next category. Neurodivergence, sensory perception disruptions, and cognitive fatigue. Which many people call brain fog. A giant ship can look loud and overwhelming from the outside, but structurally it offers something unique. Reason number 11, low sensory zones and certified ship. Theresa: And definitely more cruise lines are paying attention to this and some are certified for sensory considerations. And even the kids programs might have something for low sensory experiences. And as I mentioned before, the newer ships have more of these options and they're getting better and better about accommodating people with body disruptions. So there is an organization called Autism on the Seas and cruise lines that partner with Culture City. So as I mentioned, many modern ships are officially certified sensory inclusive and some of the staff is trained in how to handle sensory activities and neurodivergent people, etc. So they could offer things like noise cancelling headphones, strobe reduction glasses, which that's a good thing to have if you have something like migraines or if it might cause a seizure. That would be a good thing to ask for and you may already have your own. For more nervous or hyperkinetic people, they have fidget tools. But most importantly they designate specific areas of the ship as permanent low sensory zones. You just need to be sure that other people respect that zone. So they have quiet lounges or solariums where music is banned and lighting is dimmed. Robert: And for people dealing with cognitive fatigue, early-stage dementia, or visual impairments, Reason 12 is huge. They're predictable layouts. When you travel overland, every day is a new visual puzzle. A new hotel lobby, a new street grid, a new train station. It's exhausting for the brain. A cruise ship is an enclosed predictable grid. Within 24 hours your brain maps it out. State rooms are in the middle, restaurants are aft, entertainment is forward. Once you learn that geometry, the mental tacks of navigating evaporate. Theresa: That's important for people who might suffer from fatigue. Ask your travel advisor for recommendations. And if you're lucky enough to find somebody who specializes in cruising for the disability community, you're in luck. Maybe you want a state room near an elevator. Oh, be sure to check the deck plan before you go. Then you can get a good idea of the layout of the cruise ship. So for those with specific visual or hearing disruptions, Reason 13 is the integration of assistive visual and auditory technologies. From Braille signage on every cabin door, an elevator button, to closed captioning on state room TVs, and safety briefings, to infrared assistive listening devices in the theaters, the compliance with accessibility standards is incredibly high. Some lines even have designated built-in relief areas with real grass for service animals. And if you happen to need a sign language interpreter, you can also find that. Ask your travel advisor because that's something that needs to be requested well in advance of the sailing date. Robert: That attention to detail is remarkable. Now, let's talk about Reason 14, which is one of my personal favorites. Packing and energy autonomy. I call this the FOMO cure. When you're at a traditional land destination, if the rest of your travel group goes off to see a landmark and you have to stay back in the hotel room because your energy is depleted, you feel left out. You look at a blank wall. On a cruise, if you need to rest, you can lie on your cabin bed or sit on your private balcony and you are still looking at the ocean. You are still experiencing the movement. You can see the islands passing by. You are in the travel experience, even while resting your body. Theresa: Oh, and another tip is when everybody is going out and exploring on shore, it's the perfect time to go sit by the pool or find a quiet place that doesn't stress you out because of the noise. You can go relax and have the space. Mostly to yourself. You don't have to worry about finding a chair or finding a comfortable spot. Do those things that make you feel frazzled when everybody's off the ship. It's like your own personal yacht, or kind of. So it is so true that you can get that FOMO, especially if that was the way you used to travel. I would say that was me for sure and it's still hard to change that because it's real. But to be safe, to not fatigue myself, I have to cut back. Same with Robert. He's cut back. It's harsh, but it's better for us to do that. That all leads to reason 15, the built-in escape hatch. If you decide to push your limits, say you go to the high-energy evening Broadway show or the lively main dining room and midway through your body says, we're done. The battery's at zero. You don't have to call for an Uber, wait for a valet, or walk a mile down a city street, although some walking can be pretty far on a ship. You step out the door, walk to the elevator, and in a few minutes you are back your quiet, dark, safe room. You can brave environments that you might normally avoid because you have an escape option. It's close. It's reliable. Most ships do have separate wheelchairs and you could call somebody, ask your waiter, and they will come with the wheelchair to assist you. It's not for your use on the entire cruise, but it is to help you navigate. Robert: We're entering our homestretch here, and I want to focus on chronic pain, aging bodies, and oncology. People undergoing or recovering from intense medical treatments like cancer therapy. Reason 16 is something that offers relief. Hydrotherapy and thermal sweets. Theresa: Oh, those thermal sweets are heaven. If you have rheumatoid arthritis, fibromyalgia, or you're managing stiffness from an old bone replacement, gravity is your enemy. Cruise ship spas almost always feature thermal sweets. In fact, you can book a spa category of stateroom that gives you access to the spa. It's another thing to ask your travel advisor. They also have specialized treatments. They might have a whirlpool, a jet stream pool, ice pool, massage, and all those other types of treatments or amenities like the heated lounger. It's a good place to relax, and again, it's nice to go there when everyone's off the ship. Robert: And getting down to those spas or up to the pool decks doesn't require a hike, thanks to reason 17. An abundance of elevators. On land, a lot of historic hotels might have one tiny elevator that fits two people, or a resort might require walking up long, sweeping outdoor staircases. Cruise ships are designed around massive vertical elevator banks. If you have a bone replacement or severe joint degradation, you can completely bypass stairs for the entire vacation. Every single floor is equally accessible. Theresa: Another tip, if you have fatigue or your joints or bones hurt, request a stateroom near the elevator, so you can just walk right around the corner from your stateroom. So let's talk about reason 18, which is incredibly sensitive and important. Cancer-safe pampering. For a long time, people undergoing active cancer treatments were turned away from traditional day spas because massage therapists weren't trained in the nuances of oncology, like managing compromised lymph nodes or fragile skin. Today, most major cruise line spa providers train their staff in certified oncology, massage, and skin treatments. It allows someone who's been po-prod-ed, po-prod-ed and treated like a clinical medical guinea pig for months, to safely experience human touch and pampering again. And keep in mind, you can find, or if you don't find it, ask your travel advisor to let you know which kind of treatments are available in the spa. Robert: That's comforting to know. And keeping those same individuals safe is reason 19, rigorous hydration and sanitation standard. If you are immunocompromised, the world feels full of pathogens. But cruise ships, especially after the public health overhauls of the last decade, are hyper-vigilant. There are hand-washing stations at every restaurant entrance, continuous air filtration upgrades, and constant visible sanitation of high-touch surfaces. Furthermore, you have immediate guaranteed access to clean water and food prepared under strict public health regulations. It minimizes the risk environments. Theresa: And although the government has taken off some of the restrictions for the sanitary ratings of ships, cruise lines continue to test. It just makes sense for them. So finally, reason 20. It's not a structural feature or a medical protocol. It's a cultural one. When you have a visible body disruption, whether you're walking with a cane, using a wheelchair, wearing a visible ostomy bag at the pool, or dealing with a prominent tremor, or rocking a bald head from chemotherapy... Robert: Tell me what you mean by that. Theresa: Well, the group is diverse. They come from all over the world, all over the country, and whether you're walking with a cane... I know I was on a ship and somebody came up to me. They offered to help me. They offered me their cane to get around, and people can be very, very helpful. So there you'll see bodies of every shape, age, size, and ability level navigating the decks. There's maybe more of a normalization, not that you should really normalize a disability, but there's an acceptance of different types of disabilities and health management. You aren't the sick person or the disabled guy on the deck because there's another one who is. You're just another passenger heading to the buffet or waiting for the show to start. Robert: That sense of belonging might actually be one of the most therapeutic benefits of all. Theresa: I think it is. When your body feels disrupted, finding a place where you can just be you without explaining yourself or fighting the architecture is a true vacation. But having said that, don't be offended or insulted if somebody asks you if they can help or what your disability is. I wear an eye patch and people will assume that I have one disability and they will ask, and they're always polite. So don't just brush them off. Robert: Well, that's our 20 reasons. If you've been hesitant to travel because you feel like your body can't handle the logistics of the world right now, we highly encourage you to look at a cruise. Start small, maybe a three-night weekend itinerary, and see how the environment treats you. Theresa: And that's a good idea if you are traveling with a disrupted body. But in general, I would like to say the shorter the cruise, the more party the atmosphere is. So keep that in mind. And of course, it depends on our cruise line. A three-day cruise on Holland Americas, that is likely to be the big party weekend. Although I will say that people of all ages party. But their prime reason is to get away, not to just party hardy for the next three days. As always, we'll put links to some of the cruising resources we mentioned, like dialysis at sea and places where you could rent a wheelchair or oxygen or other equipment that you may not like to travel with on the airplane or just on your trip to the port. They'll all be in the show notes. Robert: Until next time, keep living the good life and travel on your own terms. Theresa: Bye everyone. See you next week. (Transcribed by TurboScribe.) Show Notes

Music

Links to Referenced Resources

TSA Cares

Book Your Cruise

Spoon Spending Chart

Autism on the Seas

Dialysis at Sea

Wheelchair Rental

Scootaraound

Special Needs Group

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Cruising with Body Disruptions and Disability

Robert and Theresa — Tue, 28 Jul 2026 10:58:00 +0000

20 Reasons Why Cruising is a Great Vacation Option for Those Experiencing Body Disruptions

In this episode we explore the advantages of vacationing by cruise. Those with disabilities will appreciate the benefits of traveling in a way that reduces stress, and eliminates changing hotels and dealing with learning new surroundings every day. We share 20 reasons that show why if you are cruising with body disruptions and disability that this is definitely a choice that you should consider when making your vacation plans.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript Theresa: Welcome back to living the good life the podcast where we redefine what adventure looks like When your body doesn't always follow the standard script. I'm Theresa and I'm Robert Robert: Today, we are tackling a massive topic We talk a lot on this show about the friction of travel the cobblestones that eat wheelchair wheels the airport security lines that exhaust people with chronic pain and The terrifying game of restaurant roulette when you have severe dietary restrictions Theresa: Oh, I understand the restaurant roulette so well I don't have Crohn's or one of those diagnosed diseases Since I've had my gallbladder removed I have Serious digestive problems where if I don't take my one magical pill, which doesn't always work It's best that I just sit in the bathroom all day nothing ruins your vacation faster than a digestive flare-up in a restaurant Especially in a city where you don't speak the language. You can't find a public restroom You don't have a coin to pay for the public restroom or the restroom is down a narrow winding Staircase into the basement, especially bad for people like me with vision loss So sometimes the better option seems to just stay at home and get takeout or something like that But you have to deal with what you have Oh, that's the reality for so many of us dealing with what we call body disruptions Whether that's needing a wheelchair recovering from cancer treatments Managing sensory overload or navigating a joint replacement travel can feel very unfriendly Robert: It really can but today we're dedicating the episode to a travel style That a lot of people write off as old-school or cliche But it is secretly the ultimate hack for adaptive travel cruising and I will Theresa: Admit my guilt. I said that I would never ever No way Not in my life take a cruise because it was for old people novels other things after all we traveled on our own We bicycled across the North American continent. We bicycled in New Zealand and Mexico. We hide think a trail We did all that other stuff. There's no way that I would ever take a cruise I figured I'd have to be playing bingo all day and doing a hairy leg Contest and all that sort of stuff that I had no interest in But I was invited on a cruise that went to French Polynesia and having been in New Zealand in the past I thought maybe I should suck it up and give it a try So I did so we've compiled a rock-solid list of 20 distinct reasons why a cruise ship is Structurally logistically and emotionally one of the best choices and most liberating Environments for someone with a body disruption and we aren't just talking about they have ramps Robert: Talking deep dive mechanics of how a floating resort changes the game Let's start off with the most obvious barrier for so many physical mobility Theresa: Okay, let's do that if you have mobility disruptions whether you're a full-time power chair user or a manual chair or You're just a few months out of a total knee or hip replacement The absolute foundation of a good trip is the terrain. Reason number one why cruising wins? It is a zero trip environment and That has the asterisks because it is the zero step on certain ships Robert: It's an architectural marvel when you think about it Modern cruise ships are built like many cities But without the curbs the thresholds between the interior corridors and the exterior Pool decks are usually flat or have very gentle Integrated ramp automatic doors open with a push of a button or a motion sensor for someone who uses a mobility scooter Just being able to roll from a theater to a restaurant without hunting for a hidden service elevator is incredibly freeing Theresa: And that accessibility doesn't end when the ship backs reason number two for going on a cruise is accessible shore excursions Historically if you wanted to tour an old European city or Caribbean island you had to cross your fingers the local bus could accommodate you. Now cruise lines explicitly vet and Categorize their excursions. They have dedicated accessible features tours that use buses equipped with Mechanical wheelchair lifts. They map out the route so you know exactly what the paving is like before you book but having said that you need to be sure that the shore excursion that you are interested in is accessible and you can always ask your travel agent a person that you should consider Handling your arrangements especially if you have accessibility needs Right. Robert: It takes the guesswork out of it and speaking of heavy gear. Let's talk about reason three medical clearance for equipment People don't realize that you can essentially turn your stateroom into a specialized care room cruise lines partner with specialized medical supply companies if you need a hoist a hospital bed Oxygen concentrators or even a dialysis machine You can have it delivered directly to the pier and set up in your room before you even board The ship's guest services department coordinates the whole thing and actually it Theresa: There is a special access line that your travel advisor can help you with there is a company called dialysis at sea and Some people do their own dialysis, but before you do any of that be sure to consult with your medical professional and contact the special services and Also reach out to the access department of the cruise line. That ties in To reason number four and I do want to make a note here that older cruise ships may not have all the Accessibility as you will find on a newer cruise ship things change ships go into dry dock But you can't usually rebuild the width of a hallway or stairs So always look toward newer ships There are adaptive staterooms on board They aren't just standard rooms with a grab bar slapped on the wall a truly accessible cabin has a widened doorway a rolling shower With a fold-down bench and if there is not a bench you can request a chair They have lowered sinks lowered closet rats Emergency pull cords that connect directly to the ship's medical team and they have easier access into the stateroom itself and Robert: Let's not overlook the sheer physical relief of reason number five which applies to anyone with chronic pain or low energy No luggage hauling think about a traditional Multi-city vacation you haul bags to the car Out of the car through the airport onto a train up a flight of stairs at a boutique hotel on a cruise You tag your bags at the pier in Miami or Seattle From wherever you're departing and the next time you see them They're sitting inside your cabin you pack exactly one, but your room moves to a number of ports possibly in several different countries and Theresa: You never have to change that room and one really nice thing. I want to know about Seattle Ask your cruise line all of them will not tell you they will ship Your luggage to the airport if you are departing from the airport That leaves you time to explore the city unless you really want to spend Hours sitting at the airport and what I really like about the luggage hauling Aspect is not only are you not moving every day? But you know when you change a hotel you have to check out by a certain time Then there's several hours between checkout time and check-in time So you might go and have to sit and wait for your room to be ready at the next hotel on a cruise Your room the entire cruise and you do not have to do any kind of changing Until the end of the cruise and So unpacking is a one-time event and that is really nice especially if you have Joint pains or chronic fatigue You want to save up physical energy? so without having to do that every single day and moving and stressing out about transportation to your next hotel It's really nice that you just unpack once for the duration of your cruise Now, let's shift inside the body and this is your specialty. Robert: Let's talk about internal disruptions digestive issues celiac disease autoimmune conditions Cancer treatments that mess with your internal systems. Theresa: Well, I think some of that's your specialty Yeah, I guess yep as you're undergoing the cancer treatments and I guess it's embarrassing to say not only do I have vision loss I have digestive issues that nobody knows the answer to and That can be very annoying. So this is one thing good about cruising and I admit although I know I have a bathroom in my stateroom I go check out your public restrooms are especially before going to the dining area Just in case and that's something important So if I need a gluten-free diet again I would ask my travel advisor to make a note of that and the travel advisor or I would again Contact the access desk and let them know and do this well before your cruise Don't wait until the day you board although most would help you so the first thing I would do is go see the maitre d tell him or her what my Digestive needs were and ask them if they have a special menu and they could help you choose actually for the entire week Sometimes it's done 24 hours in advance It depends on whichever ship you're sailing with and you can also tell them about allergies Any other medical diets if you need like low sugar Just be sure to ask them early on Don't wait until the last day and say oh there were no choices and most menus already show gluten-free low sugar Vegetarian vegan so they are very happy to help you But the longer in advance you let them know the better and they can also do like low sodium Reno diets pureed whatever you need. They some also do like kosher. Halal. Robert: Just let them know And that's reason number six Pre-vetted dietary customization that takes an immense cognitive load off the traveler You aren't explaining your illness to a new waiter every single night, right? Theresa: And that's a good thing. And especially if you're sharing a table, maybe You don't want everybody else at the table to know about your dietary issues or your health issues or medical issues so what happens if you have a bad day and that brings us to reason number seven, there's 24-7 our room service and bland food access now Hopefully you're not on a cruise ship that serves bland food every day. But if you do need it It's good to know that it's available so if your immune system crashes or My gut flares. I don't have to worry about running out and finding a grocery store or ordering delivery I can press a button on my stateroom phone and at 3 a.m A crew member will bring me plain white rice clear broth plain crackers or chamomile tea it's built into the Infrastructure of all you may have to pay a fee for room service either anytime or during certain hours of the day reason number eight is a Robert: logistical godsend for anyone with GI issues bladder conditions or limited mobility and That's the proximity to clean private restrooms Theresa: Exactly and I mentioned that before if you were exploring a historic city center on land Finding a public restroom can be a multi-hour panic attack There are so many places that say well even here at home Restrooms for guests only and in that case I'd go with my caregiver Also Robert and order something quick to drink and tear into the restroom and hope that it's not one of those One restroom for the world setups, which I don't particularly like but when you're on the ship You're never more than a few hundred feet From a very clean public restroom You'll notice cleaners in there all the time You'll see a checklist on the door of the wall somewhere and even better if you're feeling unwell You have your own private bathroom and that is stacked with all of your own specific Personal care items and that's usually just an elevator right away. So you are never Panicking about finding a restroom. But again, I always like to check out the restrooms Near the dining room near the theater near a place that I frequent often and that's besides the restroom Let's talk about that worst-case scenario What if it's more than just a flare-up? Robert: What if someone actually needs clinical intervention? That's reason number nine on board advanced medical centers These are not first aid stations with band-aids and ice packs Modern cruise ships have literal mini hospitals on the lower decks They are staffed by international doctors and nurses equipped with ICU level Stabilization gear x-ray machines lab equipment for blood work and cardiac monitor if you have a chronic illness Knowing that life-saving medical care is literally under your feet provides a level of psychological safety You cannot get at a remote beach resort Theresa: having said that Do be aware that these are not full hospitals and you should always consult with a doctor before if you have a chronic condition or Especially if you have a terminal condition There are people who want to do one last hurrah before I guess their expiration date comes up like the next week and they need to be evacuated from the ship and I can tell you that does not always make your fellow Passengers thrilled. So please don't put the other 3,000 or 6,000 or 900 Passengers in a position. They don't want to be in just so you know Just in case you do have an accident or something serious happen because it can happen any time There is a morgue On the ship and they will take care of you Which at that point you probably don't really know so it does completely lower nervous system alarm bells to know that you have an option for medical care and Speaking of comfort. Let's add reason at climate control autonomy many people undergoing cancer treatments or Dealing with thyroid disruptions. Oh, do I get to add that to my list too? Great They can experience extreme sudden shifts in body temperature and I will say that also happens with menopause So we don't want to not talk about the women who travel and might have that condition Oh in a hotel the central air can be controlled by a hotel cruise ships have Individual digital thermostats and I do want to be honest that Sometimes they are set too warm for me and you couldn't ask to have those Adjusted if you get a sudden chill or a massive hot flash you can change your immediate Environment in seconds and I'm one who likes to keep the thermostat at meat locker

Remembering that July Celebrates Disability Pride

Robert and Theresa — Tue, 21 Jul 2026 09:52:00 +0000

A short history of of the disability movement

In this episode we explore the beginnings of the disability movement. July is disability month and a time to measure the progress. within the disability community. Some things we take for granted until we need them. Curb cuts are one example. Is it just an update to city planning? It should be, but many of the changes in buildings and in other public spaces is all about the disability movement. It started with a spark and is growing. But, there is still much work to be done.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript [Speaker 2] Welcome back to Living the Good Life, the podcast where we redefine what adventure looks like when your body doesn't always follow the standard script. I'm Teresa, and this month, July, is Disability Month. Our friends will discuss more information about the disability community in general. Thanks for listening, hope you enjoy this show. [Speaker 1] You know, it's funny, when you walk down a city street today and you see a curb cut, you know, those little concrete ramps right at the corner of an intersection? Right. Or like when you grab a handrail in a public bathroom or you press one of those giant silver buttons to open an automatic door, there is this built-in expectation that it's all just, I don't know, civic engineering. [Speaker 2] Yeah. [Speaker 1] Like at some point, some benevolent city planner just looked at a blueprint, stroked their chin and went, hey, let's make this easier for everybody. Right. We tend to view the accessible world around us as this byproduct of natural passive progress. Yeah, exactly. Like it's just the inevitable march of modern architecture getting, you know, kinder over time. Kinder, right. It feels clean, it feels structural. But then, and this is what we're getting into today, you start actually digging into the history of disability rights in this country, and suddenly that little concrete curb cut isn't just concrete anymore. [Speaker 2] No, not at all. [Speaker 1] It is a battle scar. Like when you look at the accessible landscape, you are looking at a world that was absolutely not given to anyone by benevolent lawmakers. Yeah. It was taken, demanded, and fought for in ways that are honestly jaw-dropping. It is the absolute definition of a hard-won revolution, and it completely shatters that illusion of passive progress, you know? Yeah. You realize very quickly that accessibility is not a charity project. It is a profound matter of civil rights. Which is exactly what we are getting into today. Welcome to the Deep Dive. We are honoring Disability Pride Month, which is celebrated every July to mark the passage of the Americans with Disabilities Act back on July 26, 1990. It's such an important milestone. It really is. And for you listening, our mission today is to take you on a narrative journey. We've got an incredible stack of sources in front of us, ranging from a deeply detailed historical report from the U.S. National Park Service to several contemporary advocacy briefs that lay out the modern landscape of the movement today. And as we go through these sources, the core theme that just emerges over and over again is power. Yes. Power. This is a history of fierce self-worth, community, and raw political power. I want to be really clear right up front. It is not a story about pity. It has never been about pity. Okay. Let's unpack this. Because to understand where the disability rights movement is today, and to understand the pride we see every July, you can't just start with the ADA in 1990. Right. That's too late in the timeline. Exactly. You have to look at the radical lengths people had to go to just to force the government to enforce the laws that had already passed. And that takes us back to 1973. Yeah. The Rehabilitation Act of 1973. Specifically, there's this tiny provision buried inside it called Section 504. Right. Our sources point out that Section 504 is incredibly brief. It's less than 100 words long. Which is wild for a piece of legislation that important. It really is. It essentially just mirrored the Civil Rights Act of 1964, stating that no qualified individual with a disability could be excluded from or discriminated against in any program receiving federal funds. So on paper, less than 100 words officially recognized disability as a civil rights category for the very first time. On paper, yes. But here is the critical gap between legislation and reality. A law is entirely useless if there are no practical regulations written to enforce it. Oh, right. Because how do you enforce a vague idea? Exactly. You can say no discrimination all you want, but what does that actually mean for a university or a federally funded hospital? Right. The logistics of it. Yeah. And the organizations that would have to comply with this were pushing back hard. They didn't want to spend the money to retrofit buildings with ramps or provide braille materials or hire sign language interpreters. They argued the cost of compliance was just unreasonable. So wait, they just stalled. Like for years, the government passes a civil rights law and then just refuses to write the instructions on how to actually follow it. Literally for years. It gets kicked down the road from one administration to the next. And by 1977, it lands on the desk of Joseph Califano. He was President Jimmy Carter's Secretary of Health, Education and Welfare, HUW. And Califano refused to sign the regulations. He was actively meeting with lobbyists who wanted to water the rules down. Wow. So the disability community, organized by a group called the American Coalition of Citizens with Disabilities, they give Califano a massive ultimatum, right? They do. They say, sign the regulations unaltered by April or resign. And he obviously doesn't either. Yeah. And that triggers April 5, 1977. The 504 sit-ins. Yeah. Protests erupt at 10 regional HUW offices across the country. But the one that fundamentally changed history happened in San Francisco at the federal building at 50 UN Plaza. And this is where the story gets so intense. It really does. Activists led by these brilliant organizers like Judy Heumann and Kitty Cohn, they marched right into the building, occupied the offices and simply refused to leave. And I want to emphasize this for everyone listening. This wasn't, you know, a weekend protest where people hold signs for a few hours and then go home for dinner. It lasted 26 days. To this day, it remains the longest peaceful occupation of a U.S. federal building in history. But I have a genuine question about the mechanics of this, because I am just marveling at the sheer logistics. Oh, the logistics were a nightmare. Right. How do people with severe, complex medical needs survive an occupation in a hostile building? Because the federal government didn't just let them stay. The sources note the police cut off the hot water and the phone lines almost immediately to try and freeze them out. It's an incredible logistical feat, and it came down to pure, unadulterated solidarity and ingenuity. You had people sleeping on hard office floors, which meant risking severe, life-threatening bed sores. Oh, man. You had people choosing to forgo their personal aids and vital medical equipment from home. And to keep critical medications cold when they had no access to a kitchen or running electricity in certain parts of the building, Katie Cohn literally built a makeshift refrigerator. Wait, how? She taped a cardboard office box around a running window air conditioning unit. That is amazing. There's a true MacGyver stuff right there. Yeah, exactly. And what about the cut phone lines? How did they communicate with the outside world if the police cut them off? Deaf protesters went to the high windows of the federal building and used sign language to communicate entirely in the open with supporters standing down on the street below. Oh, wow. Yeah, they bypassed the phone system entirely. See, that is the defining moment for me in these historical documents, the cross-movement solidarity, because they weren't in that building alone. No, not at all. The broader civil rights community recognized the shared struggle and showed up in a massive way. The Black Panther Party, recognizing the intersection of systemic oppression, they delivered hot meals to the protesters every single day of the occupation. It's such a powerful image of mutual aid. It really is. And the International Association of Machinists Union, the IAM, they stepped in when a delegation of these protesters eventually flew to Washington, D.C. to pressure the White House directly. Right, because once the organizers flew to D.C., they hit a massive physical barrier. There was zero accessible public transit for wheelchair users in the Capitol. Zero. Yeah. The buses didn't have lifts. The subway wasn't accessible. So the Machinists Union rented a massive box truck. [Speaker 2] Yeah. [Speaker 1] And they transported wheelchair users around Washington in the dark in the back of this truck just so they could physically corner politicians in their offices. What's fascinating here is the sociological shift that happened inside that San Francisco building over those 26 days, because up until this point, disabled people were often incredibly isolated from one another due to the very lack of accessibility they were fighting against. Oh, that makes sense. Right? Someone who is blind and someone who uses a wheelchair might face completely different daily barriers. They rarely had accessible public spaces where they could physically gather, share ideas and organize. But suddenly you have this incredibly diverse cross-section of humanity locked inside a federal building together for nearly a month. Exactly. This isolated community was forced into a shared space. They shared stories. They managed each other's complex medical needs. And in doing so, they forged a unified, cross-disability political bloc. They found their common ground. They stopped being fragmented subgroups and became a singular, undeniable force. They realized their struggles shared the exact same root cause, which is systemic ableism. And it worked. The national media caught wind. The pressure became insurmountable. And on April 28, 1977, Joseph Califano gave in and signed the regulations completely unchanged. It's a monumental victory. Yeah. But as we see in the sources, 504 had a massive limitation. It did. It only protected people in federally funded programs. So if you wanted to go to the post office, you were fine. But if you wanted to eat at a private restaurant or work at a private company or just ride a private bus, it was perfectly legal for them to tell you no or simply have a flight of stairs you couldn't climb. Yeah. A huge loophole. To protect disabled people in the private sector, they needed a new law, the Americans with Disabilities Act. And that explains why by 1990, history is basically repeating itself. Right. The ADA is stalled in congressional committees. Private business interests are complaining about the hypothetical cost of building ramps and widening doors. The legislation is just stuck. So the community mobilizes again. March 12, 1990. The Capitol crawl. Gives me chills just thinking about it. Over a thousand protesters march on the U.S. Capitol. And this is the visual that I think perfectly encapsulates the physical toll of this fight. Over 60 activists get to the bottom of the Capitol steps. All 83 stone steps. And they abandon their wheelchairs. Yeah. They leave their crutches at the bottom. And they begin to physically pull their bodies up the steps, crawling to the doors of Congress. It was a visceral, undeniable demonstration of the barriers that society had artificially placed in front of them. For decades, society had hidden disabled people away in institutions. Out of sight, out of mind. Exactly. This action forced lawmakers and the cameras of the world to watch the sheer physical toll of ableism in broad daylight. You couldn't look away from the fact that the literal seat of American democracy was physically inaccessible to millions of its citizens. And among them was an eight-year-old girl named Jennifer Keelan Chaffins, who had cerebral palsy. She pulled herself up those stone steps alongside the adults. And there's this famous, just gut-wrenching quote from her where she declares, I'll take all night if I have to. It broke the legislative logjam. It provided the indisputable moral clarity needed to push the bill forward. And just a few months later, on July 26, President George H.W. Bush signed the ADA into law. Here's where it gets really interesting, though. OK. We've spent this first half of the conversation talking about physical barriers. The steps to a building. The width of a door. The curb cut. But the disability rights movement didn't stop in 1990. The movement evolved. Because what happens when the barriers and the disabilities themselves aren't immediately visible to the eye? This is arguably the most significant evolution of modern disability advocacy. Yeah. The original legal framework, like the ADA, was largely built around physical and apparent disabilities because those were the barriers that could be, well, measured with a tape measure. Right. But a massive, massive portion of the community lives with non-apparent conditions. We're talking autoimmune diseases, chronic pain, mental health conditions, neurodivergence. Right. And as Disability Pride Month really started gaining global momentum around 2015, which was the 25th anniversary of the ADA, you see this distinct shift in the advocacy briefs. Very much so. The focus really began to expand to encompass these non-apparent disabilities, which is perfectly captured by the history of the Disability Pride Flag. The flag is such a brilliant case study in how this community operates. It was originally created in 2019 by a disabled artist named Anne McGill. It featured bright, zigzagging lightning bolt stripes over a dark background. But the version of the flag you see today is actually redesigned from 2021. And the reason it was redesigned is so perfectly aligned with everything we're talking about. It's the ultimate lesson in meta-accessibility. The 2019 flag looks striking, but the community quickly realized that the zigzag pattern, combined with the high contrast neon colors, was actually causing visual sensory trigger. Yeah. As people scrolled past it on social media, the design was inducing migraines and triggering symptoms for people with epilepsy or visual processing disorders. So a flag meant to symbolize the disabled community was physically inaccessible to a portion of the people it was supposed to represent. So McGill didn't get defensive. She listened to the community, collaborated with folks who have visual processing disorders, and completely redesigned it in 2021. She straightened the stripes into a diagonal band, softened the contrast, and reordered the colors so they would be red-green colorblind friendly. Which is just fantastic. And then she placed the design in the public domain, meaning anyone can use it freely forever. And the visual language of that flag is incredibly deliberate. It doesn't just lump everyone together into one homogenous group. Right. It intentionally maps out the distinct experiences within the community. The background of the flag is a faded charcoal or black, which represents mourning. It's a somber acknowledgement of the victims of ableist violence, abuse, and systemic neglect. It grounds the pride in the reality of the struggle. And then cutting across that dark background is a diagonal band of five colors, representing how disabled people cut across all demographics, borders, and identities. Yes. Like you have the white stripe, which specifically represents non-visible, invisible, and undiagnosed disabilities, people fighting battles no one else can see. And the gold stripe represents neurodivergence and cognitive disabilities, like autism and ADHD. The blue stripe represents mental health and psychiatric conditions. The red stripe is for physical disabilities. And the green stripe represents sensory processing, as well as the deaf and blind communities. Exactly. By separating the colors but keeping them united on one flag, it acknowledges that an autistic person's daily needs might look completely different from a wheelchair user's needs. But their fight for bodily autonomy and societal accommodation is the exact same fight. If we connect this to the bigger picture, we are moving from the macro symbolism of a flag down to the micro daily reality of living with these conditions. Because it's one thing to have a white stripe on a piece of cloth. It's another thing entirely to try and survive a random Tuesday when your immune system is attacking your own body. But everyone at the office thinks you look completely fine. And this is where the sources dive into something called spoon theory. Yeah, coined by Christine Miserandino back in 2003. She was sitting at a diner trying to explain to a friend what the daily reality of living with lupus, which is an invisible chronic illness, actually felt like. The best way I can describe spoon theory for you listening is to think of it as a strict, non-negotiable energy budget. A good way to frame it. If you are a non-disabled person, you generally wake up with a seemingly infinite or at least highly renewable supply of energy. You don't have to consciously budget the physical and cognitive energy it takes to get out of bed and take a shower. You just do it. But if you have a chronic illness or a non-visible disability, if you are a spoonie, as the community calls it, you start every single day with a finite number of spoons. Let's say you get 12 spoons for the whole day. And the crucial part of the theory is that every single action costs a spoon. Taking that shower, that costs a spoon. Commuting on a crowded subway. That might cost three spoons because of the sensory overload and the physical strain of standing. Having to explain your invisible condition to a skeptical co-worker who wonders why you're taking a break, that's another two spoons drained just from the emotional labor. So before you've even sat down at your desk at 9am, you might only have six spoons left to get through the entire rest of your day, including making dinner and interacting with your family. It requires this intense, relentless pacing and rebudgeting. And our sources note this is a massive cultural shift right now, especially with the influx of people dealing with long COVID, who are suddenly grieving their previous energy levels and learning how to operate on a stripped spoon budget for the first time in their lives. Now imagine taking someone who is already carefully rationing their spoons and putting them into one of the most high-stress, unpredictable environments imaginable in an airport. Oh, it's a nightmare scenario. Truly. Imagine navigating the sensory nightmare of TSA, gate changes and flight delays when you are critically low on spoons, and your disability is completely invisible to the airport staff rushing you along. You might desperately need a bit of extra time to board, or you might need clear verbal instructions because of cognitive overload, but you don't look disabled to the gate agent. This specific friction point is where we see practical solutions emerging, like the Hidden Disability Sunflower Lanyard. It was created in 2016 by the accessibility team at Gatwick Airport in the UK. It's a simple green lanyard with yellow sunflowers. And the mechanics of it are brilliant. It acts as a discrete signal to trained transit and airport staff that the person wearing it has a non-visible condition. Right. It doesn't mean the person wants to be patronized or treated like a child. It just signals that they might need extra processing time, a bit of physical space, or a slightly different approach. And what makes the Gatwick model work is the training. Airports and businesses actually pay for training modules so their staff understand the behavioral cues associated with the lanyard. Importantly, for the user, it operates entirely on their honor system. You don't have to show invasive medical paperwork to a barista or a TSA agent to get one. But reading through the briefs, I found myself wondering, doesn't a bright green lanyard with yellow flowers kind of defeat the purpose of being discrete? Like it might signal the staff, but it also signals everyone else in the terminal. That is a very real concern, often referred to as lanyard overload. A lot of people do not want to broadcast their vulnerability to an entire terminal of strangers, especially if they are traveling alone. Yeah, that makes a lot of sense. So the system has adapted. You can use enamel lapel pins or discrete pocket cards that you just quietly hand directly to an agent. You can also bypass the physical markers entirely on the administrative side. How does that work? You can register with TSA Cares 72 hours prior to your flight to get a passenger support specialist to guide you. Or you can add special service request codes like the DPNA code, which stands for Disabled Passenger Needing Assistance directly to your flight itinerary under the Air Carrier Access Act. The system is designed to give you options based on your comfort level. These tools are incredible, but they reveal a really fragile underlying mechanic. They rely heavily on public trust. An honor system only works if the public honors it. And right now that trust is actively fraying. Which brings us to the very real systemic crackdown we are seeing right now on pre-boarding protocols. This part of the research genuinely fired me up. I don't blame you. Because we are seeing airlines enforce strict one-companion rules, forcing people to check in at the gate desk to verbally justify their need to pre-board or outright interrogating passengers. And the reason they are doing this is entirely rooted in viral social media trends. It's incredibly frustrating. You have influencers and able-bodied people posting travel hacks on TikTok bragging about how to ask for a wheelchair or claim an invisible disability just to board early and secure overhead bin space. It is the commodification of accessibility. It fundamentally misunderstands that accommodations are not VIP perks or travel hacks. They are equalizers necessary for basic participation. And the result is what I look at as a literal spoon tax. Because able-bodied people misuse this system for convenience, the airlines get skeptical of everyone. So now a traveler who legitimately has an invisible condition, who is already running on a deficit of energy, is hit with this extra tax. Yes. They are forced to constantly self-advocate to perform their disability and to prove their medical reality to a gate agent who is looking at them with total skepticism. It forces disabled people to bear the burden of proof in a public, often humiliating way, just to access the basic accommodations they are linkedly entitled to. This raises an important question. If you are listening to this and you want to help, how do you actually advocate without misusing these delicate accessibility systems? How do you become a true ally rather than just taking up space? The answer from the advocacy briefs is pretty clear. You focus on the systemic level. You support the organizations that are doing the heavy lifting so that individuals don't have to spend their daily spoons fighting gate agents. Yeah. But it helps to understand how these different groups operate because they tackle the problem from completely different angles. Exactly. For instance, if you want to change the culture around non-visible conditions, you look at groups like the Invisible Disabilities Association, the IDA. Their primary mechanism is educational lifting. Kind of. They run campaigns to normalize invisible conditions so that individuals don't have to constantly explain themselves to skeptical employers or family members. And if you are looking at how to build actual political power, you have the AAPD, the American Association of People with Disabilities. Their methodology is about civic engagement. They focus on turning the disability community into a cohesive voting bloc, lobbying lawmakers in Washington to ensure that accessibility is written into federal policy, not just left to the goodwill of corporations. Then you have groups fundamentally changing the philosophy of care, like ASAN, the Autistic Self-Advocacy Network. What makes ASAN so vital is their operating model. It is run entirely by and for autistic individuals. Which wasn't always the norm, right? Not at all. For decades, autism advocacy was dominated by groups looking for a cure or focusing on behavioral therapies that forced autistic people to mask their traits. ASAN flipped that entirely. Their methodology is self-determination, advocating for societal accommodation of neurodivergence, rather than trying to fix the person. And when policy and education aren't enough, you need legal teeth. That's where the NDRN, the National Disability Rights Network, comes in. They provide actual legal assistance. They are the ones who will step in and sue a state agency or a corporation on behalf of individuals when those civil rights laws we talked about earlier are violated. It is an entire ecosystem of advocacy, working simultaneously on education, policy, self-determination, and legal enforcement. So what does this all mean? We've covered a massive amount of ground today. We really have. We started in 1977 with Kitty Cone taping together a cardboard refrigerator and Judy Heumann sleeping on the floor of a federal office building just to force the government to acknowledge their basic humanity. [Speaker 2] Yeah. [Speaker 1] We saw the undeniable physical toll of the 1990 Capitol Crawl. And we've tracked how that radical spirit has evolved to protect the invisible, the neurodivergent, and the chronically ill today, demanding that they be believed and accommodated without having to pay a daily spoon tax. It's a history that proves the world can be reshaped when a community refuses to be ignored. But as we wrap up, I want to leave you with a thought about where this fight goes next. I'll go. We spend a lot of time talking about concrete curb cuts and physical ramps, but right now we are building an entirely new world from scratch, the digital world. As we construct the metaverse, as we integrate artificial intelligence into hiring algorithms, and as virtual reality becomes the new workplace, we have to ask, who is writing the pad? Are we accidentally building digital stairs? That is such a good point. Because if we don't code accessibility into the foundation of these new frontiers right now, we're going to need a digital Capitol Crawl tomorrow. The frontier of disability rights isn't just in physical buildings anymore. It's in the architecture of our technology. And it's up to all of us to ensure the future is built with the doors wide open. (Transcribed by TurboScribe. Go Unlimited to remove this message.) < Show Notes

Music

Links to Referenced Resources

TSA Cares

Being Huemann

Spoon Spending Chart

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Part 2 More Spoon Theory

Robert and Theresa — Tue, 14 Jul 2026 13:09:21 +0000

Finding Your Baseline

In this episode we continue our exploration of Spoon Theory. We have models for you to find your own baseline. In addition we suggest how Spoon Theory and setting a baseline applies to travel. Want to apply Spoon Theory to travel? It's all about conservation of energy. Einstein might agree.

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Transcript

Click Here for Transcript Theresa: Welcome back to Living the Good Life, the podcast where we talk about rebuilding a life after change, the kind of change that shifts your energy, your identity, your body, or your sense of what's possible. This is a short overview of what we discussed. We talked about several types of medical issues, especially that drain your energy. I feel relieved that I do not have something where my mitochondria doesn't convert ATP to energy or an autoimmune disease, although I have been suspected of having one, even though I have some of the symptoms and blood test results that might indicate that. But just to get you up to snuff, we basically talked about how difficult it is for some people to make it through the day. We use spoons as an example of a type of energy currency. Robert: And we talked about where that whole idea came from. It started in 2003 when an advocate for lupus decided she needed a practical way to demonstrate to a friend how her energy allotment worked every day. Theresa: And she used spoons because she was in a diner and that was an easy way to explain. So one thing that we thought about, and this applies to travel because we will be talking about how the spoon theory applies to your travel, is that, I don't want to say in the old days, but when we were both younger, people used to collect souvenir spoons every time they traveled. Robert: And when we took a trip, we were sometimes asked by people who were collectors to see if we could find a spoon from a particular location. Theresa: And we were thinking about that. And because we don't go to souvenir shops very often, we were wondering. So let us know if people do still collect spoons. People put them in wooden cases and you'd see them hanging on a wall in their homes. Robert: And they'd show off their new spoons that they had just gotten from a trip or from a friend. Theresa: And then we realized also when we were younger, when we had our kids, it was pretty common for somebody to buy a spoon for the newborns. Robert: Usually a silver spoon. Theresa: Usually a silver spoon. I think we may still have one. They tarnish because they're silver. Maybe that's something that looks into the future about spoons. Keep track of your energy. Robert: We will give a few examples of people and how they allocate their spoons each day. And it's kind of an interesting way that you decide how many spoons you're going to commit each day to certain activities. Theresa: And it's really beneficial to plan your spoon usage for traveling. Even if you don't have a chronic disease, it's still good because honestly travel can be very exhausting. And let's explicitly define the word baseline because it is vital. So in clinical terms, your baseline is the amount of activity you can engage in daily without triggering a flare-up or post-exertional crash. Finding your baseline is the prerequisite for figuring out exactly how many spoons you have to work with each day. Robert: Let's look at how someone actually calculates and allocates their spoons in real life. It isn't a static math problem because unlike a regular bank account, your initial balance changes every morning. Theresa: Oh that sounds like if you've invested in the stock market, right? So let's create a comparison to illustrate how wildly a spoon budget can fluctuate based on different body disruptions. We'll look at three distinct profiles. A healthy individual, someone with an auto-inflammatory condition like lupus, and someone with a profound neuro-immune disruption like ME-CFS. So we're going to compare the spoons that different people use. We have the healthy person, somebody with lupus or some kind of joint inflammation, and then somebody with the ME-CFS profile. And just to remind you that's basically mitochondrial failure. So the first thing you do in the morning is wake up and cry. Robert: Now the healthy individual has a healthy budget of lots and lots of spoons and it costs them zero spoons. They've had a nice restorative sleep. Theresa: The person with lupus might take two spoons because they have morning stiffness and joint pain. Robert: The individual with ME-CFS has had an unrefreshing sleep. They have severe PEM on waking and it's costing them four spoons. Theresa: So they have a pretty fair deficit, right? Robert: Start. Yes. Theresa: When they wake up. So then they're showering and hair care. Robert: And the healthy individual, it's cost them zero spoons. Theresa: The lupus person, due to their muscle soreness, they have lost one spoon. Robert: The individual with mitochondrial failure, the ME-CFS, is going to suffer some orthostatic intolerance from the heat of a shower and that's going to cost them three spoons. Theresa: And then there's a commute to the office or the workplace. Robert: Healthy individual has done this routinely. No problems. Cost them zero spoons. Theresa: Person with lupus is driving tension. That costs them one spoon. Robert: The individual with ME-CFS, they're going to have a cognitive load of traffic navigation. It's going to cost them two spoons. Theresa: Now say any of these people do sustained computer work and we'll say that's about three hours. Robert: The healthy individual is going to have to pay one spoon for the mental effort. Theresa: The person with lupus may have ergonomic strain on their joints and that's a cost of two spoons. Robert: The individual with ME-CFS is going to be experiencing some brain fog, some sensory processing drain, and it's going to cost them four spoons. Theresa: And then everybody needs to have food, so grocery shopping. Robert: Healthy individual is going to pay one spoon because it was a little bit time-consuming. Theresa: And the person with lupus, the store will have concrete floors, they'll have to carry their bag because they'll have to navigate the aisles and the people in the aisles. That will cost them three spoons. Robert: And finally, the individual with the ME-CFS is going to have a severe neurological crash triggered by this activity and it's going to cost them five spoons. Now you'll see that there's a stark contrast between these activities and the sum of the number of spoons that the day has cost them so far. For a healthy person, that entire sequence costs maybe two, three spoons out of an abundant reserve. For someone with ME-CFS, the same sequence costs 18 spoons. They are deep in biological debt before dinner is even on the table. And this chart will be added to the show notes. Theresa: So how do you actually decide on your spoon usage? It's different for everybody. You have to run a proactive daily audit. Spoonies use a strategy called activity aggregation scoring. You don't just look at the physical act, you break it down into four distinct cost categories. First is the physical cost. Does it require standing, lifting, or walking? Next is cognitive cost. Does it require intense decision making, tracking details, or processing fast-moving information? There's also a sensory cost. Is there bright fluorescent lighting, loud background noise, or a crowded environment? And the fourth is the emotional cost. Does it involve high stakes interactions, conflict, or masking symptoms to appear healthy? Robert: If an activity scores high across multiple categories, like attending a loud stressful professional meeting, it's an automatic heavy spoon task. You cannot pair it with another heavy spoon task on the same day. If you choose to borrow spoons from the next day, you do so knowing you are triggering an intentional mandatory rest period afterward. Theresa: Okay, let's get practical. How do you actually use spoon theory in daily life? Robert: First, you figure out your baseline. Ask yourself, on an average day, how many spoons do I realistically have? What tasks drain me the most? What tasks give me spoons back? What tasks are non-negotiable? What tasks can be postponed, delegated, or simplified? Theresa: Then you need to categorize your activities. For example, low spoon tasks include brushing teeth, microwaving food, or sending a text. And I got better at sending a text, but that used to be about my daily spoon limit. Medium spoon tasks are showering, cooking, errands, and socializing. High spoon tasks are travel, cleaning the house, hosting guests, and going to medical appointments. Robert: And here's the important part. Spoon theory is flexible. Your count changes based on sleep quality, pain levels, stress, hormones, weather, sensory load, emotional labor, illness flare-ups. Theresa: So you can check in with yourself each morning. How many spoons do I have today? And then you try to plan accordingly. Because we all know sometimes we wake up feeling energetic and crash about an hour later. So your spoon necessity or your spoon quantity changes on a daily basis. So how can we apply the spoon theory to travel? Travel is one of the most high stakes, high energy scenarios imaginable. That's due to travel planning, everything involved in traveling. It's a notorious spoon killer. It's a shifting environment filled with sensory overload, unpredictable physical demands, and disrupted schedules. Robert: But having a disability or chronic illness doesn't mean you can't travel. It means you have to build a highly tactical, spoon-centric itinerary. Let's walk through planning a trip using energy conservation metrics. Theresa: Step one happens long before you get to the airport. You need an airport buffer protocol. Most people try to optimize for speed. A spoonie must optimize for energy preservation. This means booking flights at times that preserve your sleep quality. No 5 a.m. flights that require waking up at 2 a.m. That instantly bankrupts your baseline. It's a difficult choice when a later flight could in fact bankrupt you. And probably with everything you need to go through at the airport, you should arrive at the airport earlier than most people might. Robert: It also means swallowing your pride and requesting TSA cares or airport wheelchair assistance. Many folks think, well, I can technically walk 500 yards, so I shouldn't have to take a wheelchair. But an OT will tell you walking those 500 yards on hard airport floors while carrying a bag will cost you four spoons. If you sit in the wheelchair, it costs you zero. Save those four spoons so you can actually enjoy your destination when you land. Theresa: And that's really good advice. I think it's hard for those of us who used to be able to pretend they were practicing for a marathon while trying to make a gate a mile away from where they got off the previous plane have a little bit of, I don't know if you call it embarrassment, about riding or taking a wheelchair. But it definitely does reduce stress. Robert: It also helps you avoid all the other people who are frantically trying to reach a flight carrying their roller bags and not really paying attention to other people. Theresa: And there are so many people who aren't paying attention. I got knocked enough when I wasn't in a wheelchair, but pusher of the wheelchair has to yell at people to get out of the way because a lot of people just don't look. And then there's like the coolest wheelchair I've been in was in Seattle. We usually transfer there, not initially board there. They have remotely controlled wheelchairs and they stop when somebody's in the way and it takes you to your port. That's really interesting. I might have a picture that I could put up on the website. Robert: And it also returns to its base after it drops you off. Theresa: Right. And they said they've had those for several years now. So back to step two of travel. Use the wheelchair. Take advantage of any assistance you can get at airport. Step two is to have a travel cushion day. Say you're flying to Europe. It's a long haul. Most people suffer jet lag and you might be excited. Just like on those days they say you wake up energetic, but your energy quickly fades. So just have a day where you take it easy so that you can recoup. You can still do some things, but you know, don't kill yourself and go to a meeting. And I know some people who work do have to do that, but if it's a vacation, don't do that. So try not to schedule a lot of activities or any activities on the day you arrive and even the day after. The day after must be a designated cushion day spent entirely in the hotel room, resting, rehydrating and resetting your autonomic nervous system. Think of it as paying back the time alone you took out to survive the flight. Robert: Step three is the one major event rule. A standard tourist itinerary says morning museum, afternoon walking tour, evening dinner show. A spoon managed itinerary allows for one anchor event per day. The spoon managed day structure morning, low energy breakfast in the room and medication stabilization. Midday is the anchor event. The museum tour utilizing rented motorized scooters if available. Late afternoon mandatory three hour horizontal rest period in dark room to drop the heart rate and reduce sensory input. Low key dinner nearby or room service if the anchor event ran long. Theresa: And finally, you have to build environmental redundancies. Choose hotels based on proximity to your anchor events to avoid long transit times. Ensure the room has effective climate control, especially for conditions like multiple sclerosis or POTS or recovering from prostate cancer where heat intolerance can trigger immediate relapses or discomfort. Robert: When you plan this way, travel stops being a gamble with your health and becomes a controlling the spoons instead of letting your environment strip them away from you. Theresa: You can see that travel is a high spoon activity. That's even if it's fun travel, even easy travel. So plan with spoons in mind. And one thing that I don't know that we mentioned is be sure that your assistant or your caregiver also plans the same way as you do. So here's a few basic suggestions to help you plan. One good thing is you know in advance that travel is always draining and it really takes a lot of energy. So your pre-trip spoon budgeting. You should try to estimate how many spoons during the trip and the number of spoons every day varies and that's kind of a tricky part because you can't always predict when you might have some kind of incident or problem or get really tired. But try to estimate how many you'll have. Identify the high spoon days and that could be things like your flights, making a tight connection which try to avoid that always if at all possible because that's very stressful. If you're doing any long drives especially after having flown for hours and then any tours that you're going to be taking be sure they're not scheduled too tightly with each other or during the hottest part of the day or anything like that or any that are a fast pace and there are some tours specifically for people with body disruptions and then be sure to build in recovery days or at least a part of the day to recover. To reduce your spoon drain choose non-stop flights which is easier said than done especially if you live in a small community like we do. We always have to make at least one connection. Book accessible lodging. I have mentioned before I believe that we really like apartment style hotels especially if we'll be in one place for several days and it's so nice not to have to change hotels every day because that's very stressful. Use mobility aids even if you don't always need them because if you take them you may not need them. Pre-book your transportation if possible and avoid tight schedules. Robert: Build spoon friendly routines. Morning check-ins. How many spoons today? Adjust plans based on your energy. Keep meals simple. Use sensory tools. Ear plugs. Sunglasses. Theresa: Stimulation toys and even like eye shades if you especially if you take a rest during the day. Robert: Communicate your spoon needs. Tell travel companions your limits. Use spoon theory language. I only have three spoons left today. Theresa: Also plan for flare-ups. Have a backup activity which could mean rest and know where to rest in case you have a flare-up and just have to chill out for a little bit or you know get back so you can move to your hotel. Keep your meds accessible. Allow guilt-free downtime. Robert: So with this all in mind travel can become doable and enjoyable when you stop forcing yourself to operate like someone with unlimited spoons. Theresa: So as someone who thought she had unlimited spoons in the past it's very difficult to ration your spoons for the day and you never know when you'll be back in a place and you have to choose what to do, what's safe for you, what keeps you healthy, what keeps you from falling or crashing. So that's really the spoon theory. It's a simple metaphor that opens the door to understanding, compassion, and better planning. And there are groups online and I'll see if I can find the link to those groups. Robert: And whether you're living with chronic illness, neurodivergence, disability, or just burnout, spoon theory gives you permission to honor your energy level, to plan realistically, communicate clearly, and to travel in a way that supports your body instead of fighting it. Theresa: And I think this can really work for any person. Whether you have some kind of body disruption or not, there's always stressors in your life as well. So consider it. Maybe that your assistant will and should consider it, as I'm sure my assistant in Seeing Eye Guy does all the time. Except for when he needs his assistant. So the next time someone tells you they don't have the spoons for something, remember, it's an invitation to understand a hidden economy of energy. Thanks for listening. We'll catch up with you next week on our next episode. Keep living the good life. Robert: The information shared in this podcast is for general educational and entertainment purposes only. We love sharing our insights, but please remember, this content does not constitute medical, health, or professional advice. Every body and every situation is unique. You should always consult with a qualified medical specialist or healthcare professional before starting any new program, making lifestyle changes, or acting on any information you hear today. Your health is your responsibility, so let's keep it safe. (Transcribed by TurboScribe.) Show Notes

Music

Links to Referenced Resources

TSA Cares

Spoon Spending Chart

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Spoon Theory Part 1

Robert and Theresa — Tue, 07 Jul 2026 12:02:01 +0000

How to Regulate Your Energy Level

In this episode we talk about the Spoon Theory. Keeping your spoons organized is easier said than done. The practice of using spoons to keep track or your personal energy economy is not only helpful to people with chronic illness. Its usefulness extends to those who have experienced later-in-life disruptors.

Don't forget to come back next week to hear the rest of the story. You will learn how to set your daily spoon limit. There will also be some suggestions for applying the spoon theory to travel.

AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.

Transcript

Click Here for Transcript Theresa: Welcome back to Living the Good Life, everyone. Today we're opening up a conversation about an idea that has entirely reshaped how millions of people talk about health, chronic illness, and daily survival. It's a framework that is so widely adopted that it's evolved into its own cultural identity. And so today we are going to talk about spoon theory. Robert: It's fascinating because if you spend any time in chronic illness circles online, you'll see people calling themselves spoonies. But if you aren't initiated, you're probably asking, why spoons? Why not batteries, dollars, fuel gauges? Theresa: And to understand that, we have to go back to a diner in 2003. The concept was created by an essayist and advocate named Christine Miserandino. I hope I pronounced that right. Christine was living with lupus, an autoimmune disease where your immune system attacks your healthy tissues like your joints, your skin, and your organs. She was sitting in a diner with a close friend who looked at her and asked what it actually felt like to have lupus. Not the clinical definition, but what it felt like to live with it day to day. Robert: And that's a notoriously hard thing to articulate. When you look healthy on the outside, people assume your internal battery works exactly like theirs. To demonstrate, Christine looked around the diner, grabbed every spoon she could find from the tables around, and handed them to her friend. She handed her 12 spoons. Theresa: And she told her friend, this is your energy for the day. For a healthy person, energy feels virtually limitless. If you want to go to the store, you just go. But for somebody with a chronic illness, every single action requires a choice. And every choice costs a physical asset. In this case, a spoon. Robert: Christine had her friend walk through a typical day. But right out of the gate, before her friend even got out of bed, Christine took a spoon away. Why? Because her friend had woken up late, or slept poorly, or woke up in pain. Then, getting dressed, that's another spoon. Taking a shower, that's two spoons. Because standing up in hot water causes dizziness. Before her friend had even left the house for work, half of her spoons were gone. Theresa: The epiphany for her friend came at the end of the simulated day. She realized that if she cooked dinner, she wouldn't have enough spoons left to wash the dishes, or drive to see a friend. She had to learn the crushing reality of economic rationing applied to her own muscles, joints, and brain cells. That's the origin of the spoon theory. It wasn't born in a laboratory. It was born out of a desperate need to make an invisible struggle visible to someone who loved her. So now we're going to talk a little about the science behind chronic fatigue and biology. So we'll talk first about energy. Because spoon theory isn't really about spoons, obviously. It's about the invisible cost of living in a body that doesn't behave the way you want it to. Robert: Exactly. For people with chronic conditions, energy isn't just feeling tired. It's metabolic load. It's inflammation. It's neurological processing. It's pain management. It's sensory regulation. It's executive function. Theresa: And the science backs this up. For example, chronic inflammation increases metabolic demand. Pain consumes cognitive resources. Neurodivergent brains use more energy for sensory filtering. Autoimmune disorders cause fatigue through cytokine activity. Depression affects dopamine and motivation pathways. Anxiety keeps the nervous system in a flight, in a fight or flight. Robert: So when someone says, I don't have the spoons, they're saying, my body is already working overtime just to exist. Now let's pivot into the mechanics. While the metaphor uses silverware, the underlying reality is governed by absolute biology. When someone says, I don't have the spoons for that, they aren't being lazy or unmotivated. Their cells are facing a literal energy crisis. Theresa: Exactly. Let's look at the actual science of some body disruptions. For a long time, Western medicine dismissed conditions like fibromyalgia or chronic fatigue syndrome as psychological. Today, we know better. The core of the problem often tracks down to three distinct biological systems. Cellular energy production, autonomic regulation, and neurological processing. Robert: Let's break down cellular energy first. This centers heavily around mitochondrial dysfunction. The mitochondria are the powerhouses of our cells, responsible for converting food and oxygen into adenosine triphosphate or ATP. In conditions like myalgic encephalomyelitis, commonly known as MECFS, studies show that the mitochondria do not cycle effectively. They produce significantly less ATP under stress. Theresa: And gosh, I remember in a physiology class learning about the Krebs cycle and how ATP worked and how it produced energy kind of from a long time ago. Anyway, think of it like this. A healthy person's body can quickly ramp up ATP production when they jog or do chores. Whereas, a person with mitochondrial dysfunction hits a hard ceiling. Push past that ceiling, their body shifts into anaerobic metabolism far too early, creating a buildup of lactic acid. And we know that often triggers pain and cramping. For them, it triggers post-exertional malaise or PEM. And that is a severe crash where symptoms worsen 24 to 48 hours after minor physical or mental effort. Robert: Then you may have issues with the autonomic nervous system, specifically POTS or postural orthostatic tachycardia syndrome. In a healthy body, when you stand up, your blood vessels constrict automatically to pump blood upward against gravity to your brain. Theresa: But in a patient with POTS, that autonomic reflex fails. Blood pools in their lower extremities. To compensate and keep the brain conscious, the heart begins to race violently. Just standing at a counter to brush your teeth can cause a POTS patient's heart rate to shoot up to 130 or 150 beats per minute. That's the cardiovascular equivalent of sprinting on a treadmill all while standing completely still. That burns through three spoons before you've even washed your face. Robert: We also have to address neuroimmune disruptions like fibromyalgia or lupus. In fibromyalgia, the central nervous system experiences a phenomenon called central sensitization. The brain amplifies sensory inputs. A normal minor stimulus like the ambient noise of a grocery store or the physical sensation of sitting in an uncomfortable chair is processed by the brain as noxious or painful. The brain is constantly working on overdrive just to filter out the environment, draining mental spoons at an alarming rate. Theresa: Let's talk about some real life examples of conditions where spoon theory is incredibly helpful. And let's broaden this beyond the usual chronic illness list. Because energy limitations show up in many kinds of body disruptions, even when inflammation or autoimmune disease aren't involved. Robert: One of the biggest factors is cognitive load. When your body or brain has to compensate for a disruption like vision loss, Parkinson's, balance issues, chronic pain, or neuropathy, your brain is doing extra work. It's processing more information, making more decisions, and running more background tasks. Theresa: Right. For example, people like me with vision loss, and I do this, often experience fatigue because my brain's doing the job my eyes used to do. Every step becomes a conscious act of scanning, predicting, balancing, and staying alert. That's a huge cognitive load, which I didn't realize was affecting my fatigue. Robert: Then there's hypervigilance, which is huge for many disabilities. When you have to think about every step you take, your nervous system stays in a mild fight or flight state. That increases heart rate, muscle tension, cortisol, and glucose consumption. You don't need an autoimmune disease for that. You just need a body that's working harder to stay safe. Theresa: People with Parkinson's experience fatigue because the brain struggles with dopamine regulation. Dopamine is essential for movement initiation and coordination. When dopamine is low, the brain has to work harder to perform basic motor tasks. That increased effort drains energy. Robert: For people undergoing prostate cancer treatment, fatigue can come from hormonal changes, sleep deprivation, pain, and the body's healing process. For me, I recently completed, a few months ago, my prostate cancer treatment. My sleep is disrupted constantly, almost hourly, by hot flashes. Even though I'm on certain medications that are supposed to alleviate it, my fatigue is just extreme from the hormonal suppression therapy that I had to go through. And it has been very, very challenging. And there are days when I run out of spoons by by midday, and I have to be very careful. Theresa: Then there are balance disorders. They're another great example. When the vestibular system is compromised, the brain has to rely more heavily on proprioception and vision. Thank God I had my balance disorder before I had the eye vision loss. So with balance disorders, it means that every movement requires conscious effort. It's like walking on ice all the time. Your brain never gets to relax. Robert: We also have pain physiology. Pain isn't just a sensation, it's a full body event. The nervous system fires signals, muscles tense, breathing changes, and the brain tries to interpret and manage the pain. That uses cognitive resources and burns energy. Theresa: Then there's executive dysfunction, especially with ADHD, autism, traumatic brain injury, and long COVID. Planning, organizing, starting tasks, switching tasks, all of it takes more energy. Neurodivergent brains use more glucose during executive tasks, which means they burn through spoons faster. Robert: We also see this in neuropathy, post-surgical recovery, arthritis, migraine disorders, and PTSD. Theresa: And finally, there's sensory processing. For autistic people or people with sensory processing disorders, everyday environments can be overwhelming. Bright lights, loud noises, crowded spaces, the brain has to filter all that input. That filtering process also uses energy. Robert: So when you put all of this together, cognitive load, hypervigilance, motor compensation, sensory processing, pain physiology, executive dysfunction, mitochondrial issues, you get a body that's burning through spoons at a much faster rate than a healthy body. Theresa: And that's why spoon theory resonates with so many. It's not just a metaphor. It's a simple way to describe a very complex reality. And going over this, I've had a lot of these at some point in my life, and I feel like we're now just some of those old people talk about their health issues. Well, it sounds like it. Okay, let's talk about who regulates the spoon. Talk about who regulates the spoons. Is it your health care provider? Is it you? Is it someone you know? Who does that? So who are the professionals that actually treat this? Don't look under spoons in a phone book. Oh, there aren't phone books anymore. Never mind. If you go to a traditional physician, they might prescribe medications to manage individual symptoms, like immune suppressants for lupus, or beta blockers for POTS. But medication alone doesn't teach you how to live within your biological budget. Robert: That's where occupational therapists, or OTs, come in. OTs are the undisputed champions of clinical energy management. While physical therapists focus on building physical strength and movement, occupational therapists focus on function. How you execute the occupations of daily life, which includes everything from bathing to working at a computer. Theresa: OTs don't use the word spoons, obviously, in their peer-reviewed journals, but they use an identical evidence-based framework called energy conservation techniques. They teach patients the four P's of energy conservation. They are 1. Pacing alternating periods of activity with scheduled proactive rest breaks rather than working until you crash. 2. Planning scheduling high energy tasks across the week so they don't pile up in one single day. 3. Prioritizing eliminating unnecessary steps in a task or outsourcing tasks that drain your vital resources. And then 4. Positioning. They help you modify your physical environment to decrease physical strain, such as sitting on a stool while prepping vegetables or showering. Robert: OTs are joined by other specialized professionals. You have neuropsychologists who help patients manage the cognitive fatigue often called brain fog. Brain fog is a real neurological slowdown caused by neuroinflammation or reduced cerebral blood flow. You also see functional medicine practitioners and specialized rheumatologists or neurologists who work collectively to map a patient's baseline. Theresa: And let's explicitly define the word baseline because it is vital. So in clinical terms, your baseline is the amount of activity you can engage in daily without triggering a flare-up or post-exertional crash. Finding your baseline is the prerequisite for figuring out exactly how many spoons you have to work with each day. (Transcribed by TurboScribe..) Show Notes

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Links to Referenced Resources

TSA Cares

Spoon Spending Chart

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Living The Could Life Workbook Primer

Robert and Theresa — Tue, 30 Jun 2026 18:31:32 +0000

A Bit More About the Living The Could Life Workbook

In this episode we address some questions about our guided workbook. The gentle aspect of the book led to a few inquiries about the effectiveness of this 70-dday guide. We wanted to take an episode to dive deeper into the focus of the book and the importance of reading the intro and other parts of the workbook. We talk a bit of acetylcholine, Goldilocks and how relative stress may be.

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Transcript

Click Here for Transcript Theresa: Welcome back to Living the Good Life, where we talk about real travel for real bodies. The kind of trips you can actually take, not the ones that you used to be able to take. I'm Teresa. Today we're talking about how real change happens in the brain, not through force, not through intensity, not through try harder, but through gentle, meaningful challenge. Inside the brain, there's a chemical called acetylcholine. Think of it as your brain's spotlight operator. When something is new, interesting, or requires your attention, acetylcholine turns the spotlight on and says, hey, this matters. Let's strengthen it. For example, if something is too easy, something you can do on autopilot, your brain doesn't bother requiring anything it thinks. Oh, we already know how to do this. So let's make this real with an example. People often say, I do Wyrtle every day. Isn't that good for my brain? And the answer is, it's fun, but it doesn't create any new connections. So acetylcholine barely moves. No spotlight, no rewiring. And my guess is, it makes fewer connections if you learn a second romance language. What do you think? As opposed to a Germanic language. Robert: I guess the grammar is different. Like German, the joke is they always wait for the end of the sentence. Theresa: Right. We should do that for this podcast. Make you wait. Robert: And yeah, I hear people say learning Greek is very difficult, where they say learning Spanish is a lot easier, but when you start becoming really fluent in Spanish, it's still pretty, pretty challenging, I think. Theresa: And I think other languages, like some of the Asian languages or Chinese, which is, I believe, called a tonal language, where, you know, high, high pitch. I know they use the example ma, like there's several different ways to pronounce ma, and it totally changes the meaning. But anyway, I was just wondering about that. I don't know. So, back to language. Your brain can't solve, learn, you know, a problem, the problem of learning a new language with its old circuitry. Acetylcholine spikes, the spotlight turns on, and your brain says, this is unfamiliar. I, I need to build some new circuits. Robert: Between entertainment and transformation. Theresa: Although I do think there's something good about trying to solve Wordo, even though you know how to play that, or do crossword puzzles, or things like that, at least keeps your mind active. Robert: Yeah, I like Wordo. Theresa: I do too. So, language learning is one example of a neuron builder, as we just said, but there are many other neuron builders, activities that reliably activate acetylcholine and support real change, and they're different for every person. Robert: Here are a few. Learning a new motor skill, such as knitting, tai chi, watercolor, typing with a new layout, learning a new sensory skill, photography, cooking with new spices, music training. Theresa: Oh, and you know all about the music training, right? Robert: I suffered through that long, long ago. Learning a new cognitive skill, a new software tool, a new route, a new planning method, learning a new relational skill, asking for help, setting boundaries, practicing micro-connection. Theresa: And, as I said, for some people, some of these are easy. For others of us, I mean, knitting, I remember when our first son was born, or before, I decided I would make a little afghan for him that was knitted, and it was just simple squares. Well, I had rectangles, squares, parallelograms, nothing was the same size, nothing the same shape, and, you know, but I watched people knit, and they make it look like it's the easiest thing ever. The common thread, though, with all these, they do require new maps, new patterns, and new attention. They wake up the spotlight. Robert: And they're all things you can do gently inside your wheel. Theresa: This is where gentle challenge becomes essential. It's the level where your brain says, this is new enough to matter, but safe. And safe is key. It's safe enough that I can stay open to it. Robert: Especially if you're living in a changed body. Pain, fatigue, injury, disability, chronic illness, trauma, aging. Your nervous system is more sensitive to threat. You can't push through. You can't just try harder. Theresa: And speaking of aging, I think, I know as I've gotten older, even not mentioning the vision loss, I have a stronger sense of self-preservation. I become a chicken in many ways. I don't take so many risks, especially with the vision loss, but I'm a chicken now. Which is totally different from what I was. I didn't really consider that in the past. So, you can still change. And your brain is still capable of learning. It just needs a different kind of input. Robert: So, let's talk about the Goldilocks zone. The level of challenge that's just right. Theresa: The Goldilocks zone is where the spotlight stays on. It's where acetylcholine says, strengthen this. It's where your brain can actually learn. Robert: Let's make this real with an example. Imagine someone recovering from spinal surgery. Too easy. Standing up once an hour, no spotlight. Too hard. Walking a mile, stress chemistry shuts everything down. The Goldilocks zone. Walking to the end of the driveway once a day. New, doable, safe, repeatable. Theresa: And when they repeat that small walk with tiny variations, their brain starts to rewire. It's not because they pushed harder, but because they stayed in the zone where learning is possible. Robert: Let's introduce the micro adaptation menu. Gentle starting points tailored to different kinds of disruptions. Theresa: Here are a few examples. Robert: The Goldilocks zone for mobility disruptions. Walk to the mailbox or the next room. Variation. Change the time or add one slow breath. Theresa: Fatigue based conditions. One three minute upright activity. A variation to this is add rest before and after. And if you have balance issues, the Goldilocks zone for you is to stand for 10 seconds with light support. A variation on that is to shift weight or turn your head slightly. Robert: Cognitive fog. Goldilocks zone. Read one paragraph or analyze one item. Variation. Change the time of day. Theresa: And for anxiety or trauma responses, think about doing for the getting in the Goldilocks zone, a 30 second presence exercise. And a variation of that could be adding grounding or increasing the duration by 10 seconds. Robert: Strength or deconditioning. The Goldilocks zone could be one sit to stand or lift a soup can five times. Variation could be add one repetition. Theresa: And again, I want to note, we are not professional medical people. We're not occupational therapists, physical therapists. We are podcasters. So before you do anything, be sure to consult with a medical professional to be sure these work for you. So here's the part that ties everything together. Your final objective is to change to autopilot. Robert: Not because autopilot is lazy, but because autopilot is efficient. It's the brain's way of saying, we've built this pathway. We can carry it on for you now. Theresa: Exactly. Acetylcholine helps you learn the new pattern. Gentle challenge keeps the spotlight on and keeps you from getting frustrated or injured. Repetition with variation strengthens the pathway. Eventually the behavior becomes automatic. Robert: Sustainable change. That's nervous system friendly change. That's change that doesn't require willpower or perfection. Theresa: And some of it maybe requires a little bit of willpower. I mean, if practice does make perfect or good enough, as Voltaire would say. So as you move through the workbook, and we're going to go over that in a few minutes, keep asking yourself, is this new enough to matter and safe enough to repeat? If your answer is yes, you're in the Godelak zone. Robert: That's where your brain does its best work. We'll walk with you through every step of it. Theresa: So let's talk about the workbook now. The workbook guides you and other people who are living in bodies that have changed later in life through illness, injury, chronic pain, disability, or even aging. And it helps you rebuild a life that fits your current reality. It rejects toxic positivity. And one reason for that is that would make me think nothing is worth doing. And since I'm the author of the book, I can reject toxic positivity. It instead offers grounded, compassionate, and sustainable practices. So the tone and philosophy is it's honest. It's non-performative. None of that, oh, just be grateful and our God only gives these burdens to people. Who can bear them? Or any of that other kind of inexcusable messaging. And it's written by someone who has lived through enough of these changes. I can say that at one point I couldn't walk. I still have digestive issues that control my life. And with the low vision, just seeing where those pills are that my life is based on is a bit of a challenge sometimes. The book also focuses on neuroplasticity, emotional regulation, and small doable shifts. It encourages curiosity instead of pressure. It honors grief. And honesty is important. Anybody who doesn't grieve about having these changes maybe should seek some other kind of help too. But it honors your grief, understands your capacity, and validates the truth of the lived experience. Robert: The book is based on 70 days. And if you remember from some of our previous podcasts, the 70 days is based in science. Some people said 66 days. 70 days is a nice round number. The days are arranged in groups. The first days, 1 through 14, is noticing what's true now. The focus is understanding what has changed, naming losses without judgment, identifying current capacity, beginning gentle daily reflection. And the tools you're going to use are the microjournaling, body awareness check-ins, and what's possible today prompts. Theresa: Then onward to days 15 to 28, you can start rebuilding internal safety. The focus there is grounding your nervous system, reducing overwhelm, creating emotional steadiness, and learning to pause without quitting. The tools you can use are breath-based resets, a five-minute return to center practices, and other prompts that build internal reassurance. Robert: These 29 to 42 are reimagining your identity. The focus is who you are now versus who you were. Untangling identity from productivity, reclaiming agency, pouring new self-definitions. And the tool for this, identity mapping, good statements, and values-based reflection. Theresa: As you progress on to days 43 to 46, and good for you for sticking with it, is rebuilding a life that fits. The focus there is designing routines that match your real capacity, and that is easier said than done. Re-entering life gently. Robert gets frustrated with me when I tried to lead the way or do what I used to do when I often traveled solo. It's one of those autopilot things, and I guess one thing is you need to turn some things off about autopilot, because now they can be dangerous. Other things you can do is testing small experiments, and that's really good if you're going on a longer trip. And I think we mentioned in an earlier podcast, you know, try do a day trip somewhere. See how that works. See how you can navigate the area you are in. Take notes of what didn't work so well, so you know for your longer trip what you need to change. And then you can replace the all-or-nothing thinking with one doable step, which I know for us that has been taking a rest and just saying we've done enough for the day. Because the more tired we get, the more likely we are to injure ourselves. So the tools for that would be habit scaffolding, energy-based planning that's extremely important. Don't wear yourself out. Later, we'll talk about the spoon theory. And then weekly micro experiments. Robert: You'll be using tools of future pacing, and swavel plans, and closing reflections. Theresa: And remember, weables wobble, but they never fall down. So what you should gain from going through the workbook, and we hope you gain this, it's a compassionate companion through a difficult transition. It's also a realistic sustainable way to rebuild your life after your body's changed. This daily structure is one that doesn't overwhelm. It gives you a sense of possibility rooted in truth and not pressure. And it's a new relationship with your body, identity, and future. So we have some show notes, again, that gives you some other prompts that you might want to consider. Other short exercises. There is, of course, a link to the workbook. We'd love to know your thoughts. And we will see you again next week. Thanks for listening to The Good Life. Show Notes

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Mentioned

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Guided Immersion with ToursByLocals

Robert and Theresa — Tue, 23 Jun 2026 18:28:50 +0000

A Deep Dive Into South Beach

In this episode we share our experience with our wonderful guide, Ileana from ToursByLocals. It's an ideal way to learn more about South Beach. We delved into the Art Deco heritage of the town. Next time, we are there, we will be more observant noticing the small details of the Art Deco style. We usually stay in an Art Deco apartment and will look out for more details the next time that we visit South Beach

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Transcript

Click Here for Transcript Theresa: Welcome back to Living the Could Life, where we talk about real travel for real bodies. It's the kind of trips you can actually take, not the ones influencers pretend to float through and show their wonderful bodies and new outfits. We're not quite like that. Today, we are heading to South Beach, part of Miami, that's in Florida, but it's not the version you get from a brochure. We're talking about exploring it with tours by locals and why having a local guide can completely change your experience. Robert: And we're not just talking about someone who knows the area. We mean people who live the culture, understand the history, and can point out the tiny details you'd walk right past, especially on an architectural tour, which is one of the most underrated ways to understand this part of Miami. Theresa: And that is so important. I've taken other tours. I was actually on a tour from a cruise ship where the guy just said: “On the left is the ocean,on the right are the mountains.” This advice applies to other tour companies or touring guides as well. Back to South Beach. It's one of the places where you can really get along on your own. You can walk. It's very walkable. You can take the free trolley. You can take a bus. There's Uber and other shared ride services. But to really get a good look at the area, it helps to have a guide or to have done a significant amount of research. So when you go on your own, it's likely you might miss 80% of the local interesting architecture, the local facts about South Beach. A lot of people there, they go just to go swimming, go to the beach, sunbathe, hang out, eat, drink, and party. With the local guide, you get the stories behind all the neon, the Art Deco, the families who've owned and operated restaurants and hotels for years, and the preservation battles behind the Art Deco district. Robert: And let's be honest, South Beach can be overwhelming. Crowds, heat, parking, noise. A local guide cuts through all that. They know the shady spots to stand in, the quiet corners, the clean bathrooms, the places where you can actually hear yourself think. Theresa: And that was definitely good for us, especially for me. When I don't see well, it was nice to know where I can go find a restroom or find a place in the shade. And this is another good reason to hire an independent, private tour guide. So something very important is tours by locals. That's their guides. You're not just getting some random person who watched a YouTube video or an influencer Instagram to tell you about South Beach. Our guide was licensed, experienced, and the guides build their own itineraries. So we took an architectural tour, which was sponsored by Tours by Locals for us, so that we could share it with you. So the first thing to do is head to toursbylocals.com and search South Beach or whichever area you're visiting, because Tours by Locals is in many different cities. In fact, we are planning a trip to Italy and we wanted to check out some castles and it's not easy to get to by bus or transportation. So Tours by Locals was an option for us, although we found in the end, because of our castle itinerary, it was just easier for us who sometimes go off on tangents, not only on this podcast, but when researching and we decided, oh, we should just rent a car for that day, which was frightening, and it still could be frightening, but we're in a rural area, so there's no Ferraris on the highways running you off a cliff or anything like that. So we look for a private guide. Some are very good. For many of them, you can create a custom tour for yourself. But sometimes, you know, we don't want to be with somebody when we argue and complain about the driver and our backseat drivers and things like that. We have a specific object. So in that case, we should reconsider. But we did see some excellent walking tours in the town and this is in Bergamo. They look really interesting and I will say by looking at Tours by Locals, and maybe this is kind of not what they really want you to do, but you can get an idea of highlights of a town, and walk it or explore it on your own, especially if you know you're only going to have like 10 minutes here or 20 minutes there. So it's always up to you. But back to our South Beach experience and how to find a tour by Tours by Locals and Robert's going to explain that. Robert: Let's walk through the booking process because this is where people get stuck. Step one, browse the tour. Go to Tours by Locals and search South Beach or Miami Beach. And you'll see everything from food tours to Cuban heritage tours to deep dives, architecture walks. Step two, read the guide profile. This is the gold. You'll see their background, languages, specialties, reviews, photos of past tours, their personal philosophy on guiding. Theresa: And don't skip the reviews. I mean, it's nice to match yourself with somebody who has the same philosophy or pace or interest as you do. So, you know, look for patterns and, you know, look for specific patterns. Sometimes somebody says, oh yeah, great guide or it was a good tour. You know, maybe you should read between the lines. It is not just ToursbByLLocals. It's for hotels, resorts, restaurants, and a lot of you probably already know that. So you can really sniff out what's a good tour. So look for things like saying they really knew how to pace the walk. And when you book them, you can request a slow tour. You can request lots of bathroom breaks. You can request anything you want. It's your private tour guide. There are some who specifically will adapt to people with mobility needs or keep us out of the sun or we can't walk up a lot of stairs. And of course, you need to know what is their background. Many have degrees in art history or they're on historical committees and they're active in the community. So it's nice to have somebody who really knows about what you're interested in and you can tell them how deeply you'd like to go into the topic. The next step then, and it goes with what I was just talking about, is ask questions. How much walking is involved? Are you going to walk three miles? Are you going to just walk a few blocks or can you walk a block and take a rest? How difficult is the terrain? Can you focus on architecture or less on architecture, more about the history of each building or the design or its past? Are there accessibility considerations, as we just mentioned? And what time of the day is best for the heat, the crowds, the cold, the sun? Whatever is important to you. And then step four is once you find somebody and you can email back and forth, you know, be sure you're comfortable with the person and maybe choose a top three in whatever you want to do. If you're interested in food, what's their background? Are they a chef? Do they review restaurants? Are they a specialist cook in a certain cuisine? So once you figure that all out, you get a confirmation and a thread of what you message with your guide. And from there you can start fine-tuning the plan. And also be sure you know about confirmations, cancellations, reservations, everything like that. Be very specific and don't be afraid to ask questions. Robert: Preparation is where a good tour becomes a great one. Here's what to do before you go. Check the weather. South Beach humidity is not subtle. Wear breathable clothing. Bring water, even on a short tour. Ask about shade break. Guides usually plan them but confirm. Tell your guide your mobility needs. They will adjust the route. Screenshot the meeting point. Self-service can be spotty near the beach. Theresa: If you're doing an architectural tour and have a strong interest, you might want to bring a small notebook or use the notes on your phone just so you remember the building names. You can number the buildings as you take photos or do whatever you want because you may want to come back later and explore more in depth. In addition to that, you can remember the building names, the architects, the stories that make the district come alive, and the little details on the building. Why is taking a tour with a guide from Tourist by Locals? Why is it worth it? So let's talk especially about architecture since that's the tour that we did. South Beach is really an open-air museum of architecture with Art Deco, Streamline, Modern, Mediterranean Revival. Robert: A local guide will point out things you'd never notice. The pastel color palette chosen after the 1926 hurricane. The porthole windows and ship-inspired railing. The terrazzo floors that survived decades of storm. The neon signage rules that keep the district historically consistent. Theresa: And stories about it. Why did they use concrete? What kind of preservation fights were there in the 70s? Remember urban renewal and the like when they wanted to just tear every building down and replace it with something new? Who were designers who shaped that skyline? Which buildings almost didn't survive? You get context along with the pretty facades of the buildings and the interiors as well. Our guide took us inside several buildings not only to use the restrooms or to grab a drink but also to see what the interiors looked like. Robert: Plus the guides know which buildings you can actually go inside and which ones have interesting features inside. Some of the lobbies are just absolutely jaw-dropping. Theresa: And that was really important if we had just stayed on the outside. We could admire the architecture but we would never have considered just walking into a hotel to look at a fireplace or mural or stained glass or anything like that. And if you really further want to enjoy, come back later, stop in for a lunch or breakfast or drink. So now during the tour with Tours by Locos, what should you expect? First, expect a pace that matches your group. I mean this is a private group so really you can let your guide know what pace you want. You don't have to feel like you're too slow to keep up with other people as you would in a large group tour. So that's also a real advantage of having your own private guide. And they are really great about adjusting and that's another question to ask up front. And they can be slower, faster, take more breaks, add more stories, add fewer stories, and just learn about you as well. Robert: And you can expect real conversation. These aren't scripted tours. You could ask questions, request detours, or say, hey can we stop for a cafecito? And they'll know exactly where to go. Theresa: Yes and our guide was great about that and she is of Cuban heritage and I can't remember what we were discussing. I said that Robert came over on the boat because Robert did come over on the boat. Well in Miami that has a different meaning. She asked him if he were Cuban. He came on the boat from somewhere in Germany. Robert: From Germany? No I was two years old. Theresa: Well anyway so he's not Cuban and actually when we went to Cuba they didn't want to let him in nor did they want to let him out. So but anyway it was interesting to talk about her life and her experience. She has many interests. So they're definitely not scripted tours or conversations. You can learn things that you can repeat to your friends or recommend when they go to South Beach. It's a mark of a really good tour. Robert: After the tour take five minutes to jot down what stood out. This helps if you're building a trip report, writing a review, or planning future episodes like we do. Theresa: Then leave a thoughtful review. Mention specifics. How was the pacing, the accessibility, the storytelling, your comfort with the guide, the guide's knowledge. It helps future travelers know what to expect and it also helps the guide. Robert: And if you love the experience ask the guide for recommendations for the rest of your trip. Locals know the good spots. Theresa: Right for example our guide took us to a rooftop bar and pool of a hotel where we could overlook the ocean and most of the town. South Beach is beautiful on its own but with a local tour guide it's a story in itself and you become part of it as opposed to an observer. Robert: If you're planning a trip consider booking through Tours by Locals. It's one of the easiest ways to turn a hot crowded beach day into something meaningful memorable and actually enjoyable. Theresa: And before we say goodbye let's go and talk about a checklist that we made that will be added to the show notes. You can use this for booking your hosted guide, for booking your guide, for booking your Tours by Locals guide, or really I mean this is kind of a universal checklist so you could use it for any type of guide you want to book. So first before you book browse Tours by Locals for in this case South Beach, Miami Beach, or wherever you are going. Then filter out the tour type. It could be architecture, culture, food, history, maybe even castles. And go as we mentioned before read the guide profile see what the background is see what their specialty are see what their languages are especially when you go to a country that does not speak English there are some like I looked at one well they speak Russian and maybe they spoke English as well but be sure to check to be sure. Scan the reviews for the pacing, accessibility, and storytelling. Check the tour duration and the walking distance and it seemed like more of these were many are walking tours but there are some where you drive and you can have an entire day like seven hours visiting the local area. Confirm the price, the group size, and what's included and you can tell them if you want it to be a private tour. And then shortlist two or three of the guides that seem appealing. Robert: Then message the guide. Send a quick message asking how much walking is involved. Can we focus more on architecture? Are there shade breaks built in? Any accessibility consideration? What time of day is best for heat or avoiding crowd? Where exactly is the meeting point? And any other concerns you may have. Theresa: Right and we have gone over most lists before but this is like your handy one page one and a half page information sheet. So finalize the date and time. Add the confirmation to your calendar. If you are traveling abroad where there's a significant time change be sure you have the correct date. Ask for a screenshot of the meeting point and how to contact the guide. If you don't have the guide's phone number it may be difficult to get in touch with them quickly. Share what your mobility or pacing needs are. Are you bringing any kind of mobility equipment? Ask about backup plans for the weather. And request any kind of customization like an emphasis on a certain topic. A slower pace or photoshop since South Beach was very good for photo staffs. Robert: Then prep for the day. Check the weather and humidity. Wear breathable clothing. Comfortable walking shoes. Bring water. Bring a sunscreen and hat. Portable fan optional but helpful if it's really warm. A small notebook or phone app for notes for architectural details. Fully charged phone. And make sure you have cash or card for incidentals, cafe stops, or tips. Theresa: During the tour confirm the pacing at the start again and people learn after you repeat something I think seven times. So ask questions freely. Don't hesitate. It's your tour and that is if you've booked a private tour. But you can still ask other questions. But I think one benefit especially for people who have disruptive bodies is that it is your tour not a group tour. Request shade or rest breaks as you need them. Take note of the building names, the architects, and the stories. And take photos of the details like the tiles, the signage, the motifs, even the structur And ask for local recommendations for from your tour guide for later. Robert: And after the tour jot down highlights while they're fresh. Say building names or locations that you want to revisit. Leave a thoughtful review. Mention pacing, accessibility, storytelling. Bookmark the guide for future trips. Add notes to your travel journal or trip report. Theresa: We'll drop the checklist into the show notes along with information for tours by locals. You'll be pleased that they are in so many different cities around the world. And using that you can prep yourself for your own tour. And we do want to announce that our workbook is now in print and we're going to talk about that next time. Go over it a little bit. So until then, keep living the good life. See you next week. Show Notes

Music

Mentioned

ToursByLocals South Beach, Miami

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Your free checklist for finding a guide who understands your wants and needs.

The Boat Company Saves the Tongass

Robert and Theresa — Tue, 16 Jun 2026 17:55:58 +0000

Part 2: The Science Behind the Tongass and Why The Boat Company Wants to Preserve the Forest

In this episode we share a deeper dive into the Science of The Tongass National Forest. We have combined several bits of research, interviews and personal experience into two Notebook-generated conversations. The convo not only shows the advantages of sailing with The Boat Company, but also delves into the science that illustrates exactly why The Boat Company continues its committed to preserving this large expanse of inimitable space.

Transcript

Deeper Diving Into The Tongass

Robert and Theresa — Tue, 09 Jun 2026 16:32:23 +0000

Part 1: What We Learned Cruising With The Boat Company

In this episode we share a deeper dive into the Tongass Naational Forest. We have combined several bits of research, interviews and personal experience into twoNotebook generated conversations. The convo not only shows the advantages of sailing with The Boat Company, but also delves into the science that illustrates exactly why The Boat Company continues its committed to preserving this large expanse of inimitable space.

Transcript

Click Here for Transcript Speaker 2: So, I want you to imagine that you are sitting on this incredibly green, mossy log in absolute silence. Speaker 2: Just totally off the grid. Speaker 2: Exactly. You are miles from cell service and you think, ah, I have completely escaped the global economy. I'm finally out of it. Speaker 1: Yeah, you feel totally isolated from all of that. Speaker 2: Right. But you are actually sitting right on top of a highly aggressive $2.2 billion commodities market. Speaker 1: Oh, wow. That is quite the visual. Speaker 2: Isn't it? So, welcome to our deep dive into the Tongass National Forest in Southeast Alaska. Speaker 1: It's an incredible topic and I'm really excited to get into the sources we have today. Speaker 2: Same here. But before we get into the hidden mechanics of what is happening under that moss, I really want you to try and picture the sheer scale of this place. Because, I mean, when I hear the word forest, my brain usually defaults to a nice, manageable state park. Speaker 1: Right. Like maybe some paved trails, a little visitor center. Speaker 2: Yeah, a place you can drive across in an hour, buy a postcard and go home. But the Tongass is over 16 million acres. Speaker 1: Which is, I mean, to put 16 million acres into a frame of reference that the human brain can actually process, you are looking at a landmass that covers roughly 80% of all of Southeast Alaska. Speaker 2: 80%? Speaker 1: Yeah. It is the largest national forest in the United States by a massive margin. But it is not just, you know, a monolithic block of pine trees sitting on a flat plain. The geography is completely splintered. Speaker 2: Splintered is a great way to put it. In this episode we share details about a recent cruise to Alaska. The Boat Company is a non-profit cruise line that has been plying the waters in SE Alaska for decades. Is this cruise line appropriate for those of us with body disruptions? Listen to find out.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript Theresa: Some places don't need to be sold, they just need to be shown. Southeast Alaska is one of those places. It's a world of mist, mountains, and water that feels untouched, almost ancient. Robert: And tucked inside that world is the Boat Company, a small non-profit that's been quietly, steadily protecting this landscape for more than 40 years. They don't advertise loudly, they don't chase trends, they simply invite people into a place they love and use travel to help save it. Theresa: Today, we're talking about small ship cruising in Alaska with the Boat Company. Unlike other cruise lines you've heard of, they operate two small vessels, the Leesorone and the Mist Cove, each carrying just 20 to 24 guests. We sailed on Mist Cove. It's intimate, personal, and deeply connected to the land and water around it. Robert: And their mission centers on one of the most extraordinary ecosystems on Earth, the Tongass National Forest. Theresa: And because so many travelers don't realize what the Tongass actually is, and some have never really heard about it, we want to pause here and give it the space it deserves. Welcome to Living the Good Life. I'm Theresa. Robert: And I'm your co-host, Robert. So let's get into it. The Tongass National Forest is the largest national forest in the United States. Nearly 17 million acres of islands, fjords, mountains, glaciers, and old-growth rainforest. It covers almost 80% of southeast Alaska and forms the U.S. portion of the largest temperate rainforest left on Earth. Theresa: Like Alaska, this is a giant forest. Almost everything in Alaska is much bigger than you expect, or at least it was far bigger than I ever expected. This is the forest of giants like the ancient Sitka Spruce, Western Hemlock, and Cedar. They have stood for hundreds, sometimes more than a thousand years. It's the old-growth forest at its best. These trees rise like pillars in a green cathedral, draped in moss and rooted in tongue. Robert: Beneath those trees runs water. Cold, clear, life-giving water. 19,000 miles of salmon streams braid through the Tongass. All five species of Pacific salmon spawn here, feeding bears, eagles, wolves, communities, and entire regional economies. Theresa: You can't go to Alaska without trying salmon. Wildlife thrives here in ways that feel almost mythical. Brown and black bears, the rare Alexander Archipelago wolf, Sitka black-tailed deer, and more than

Choosing Accessible Accommodations

Robert and Theresa — Tue, 26 May 2026 22:27:11 +0000

In this episode we share details about choosing accommodations for people with disabilities. You may be surprised to know that ADA only requests that lodging institutions meet minimal standards to comply. Comfort and ADA may be two totally different things.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript : Theresa: I once checked into an ADA compliant hotel room and it was not what I expected. The shower chair was in the closet, the bed was too high, and the rolling shower had a three inch lip. Robert: And that's when you know this trip just got complicated. Theresa: Today we're talking about accessible lodging, what ADA compliance really means, why it can be misleading, and how to choose a place that actually works for your needs. Robert: And we're also talking about something that gets overlooked way too often, comfort and support for caregivers. Theresa: Welcome back to Living the Could Life. Robert: I'm Theresa Robert: and I'm your co-host Robert. Let's get into it. Robert: We've all seen the blue and green sign from the highway. Holiday Inn Express is the king of the consistent stay. But if you're a traveler with a disability, is consistent always a good thing? Theresa: To some, it's a lifesaver. To others, it's a minefield of almost accessible features. Today we're breaking down what it's really like to navigate mid-scale chain hotels, the psychology of why we pick them, and the red flag phrases that should make you run for the hills. Robert: I used to think these hotels were so bland. It's like they copy-pasted the room across 2,000 locations. Everything is always in the same exact spot. Isn't that boring? Theresa: Well, to you, and formerly to me, it was bland. But then, it's a map I have already memorized. When I roll into a Holiday Inn Express, I don't have to solve the puzzle of the room. I already know the bathroom's here. The bed height's predictable. And I can reach the light switch from the bed. Robert: So the lack of surprise is actually the luxury? Theresa: Exactly. In my world, and for many others with body disruptions, a surprise is usually a barrier. That boring layout reduces my cognitive load. I'll take predictable over pretty every day of the week. Robert: Let's talk about the booking process. I called a hotel last week for a friend and asked about the roll-in shower. And the guy at the desk said, it's pr

Living the Could Life First Season Recap

Robert and Theresa — Tue, 19 May 2026 13:37:30 +0000

About this Episode:

This episode recaps our first season of episodes. We made it! We will continue sharing information on adjusting to later-in-life changes with an emphasis on continuing to travel after such body disruptions.

We have several free downloads of helpful information in the previous episodes and have recently published a full workbook to help you change your habits so that you can successfully adapt to the body that you have today.

You will find that helpful resourse - Living the Could Life: A 70-day Workbook for living Well After Body Disruptions

Transcript
Click Here for Transcript Theresa: Welcome to Living the Good Life. I'm Theresa. Robert: And I'm Robert. We recently broadcast our 10th episode and are celebrating that milestone this week. Theresa: We created Living the Good Life for those who suddenly found that their body's performance doesn't sync with their mental attitude. In fact, you've come to the right place, and if you've been listening to us since the beginning, thank you so much. Navigating disability, chronic illness, aging, or any kind of life change was not in your plans? Please join us. Robert: In our past episodes, we have talked about the two meanings of could, 70 days to change, and also about how to cruise in Alaska and the Great Lakes. Theresa: We've also added several complimentary downloads to help guide you through your personal journey while dealing with later in life body disruptions. Robert: In addition to all this, we have created a full workbook, Living the Good Life, a 70-day workbook for living well after body disruption, which you will find for sale on amazon.com. Theresa: We'll add that link to the show notes. We will be back next week for the start of our second season. Please join us to learn about accommodations, cruising on an expedition cruise in Alaska with the nonprofit cruise operator, The Boat Company. There is a lot more coming in our second season. See you next week. Thanks for listening to Living the Good Life. (Transcribed by TurboScribe. Go Unlimited to remove this message.) Show Notes
Music
Music Credits (click to expand)
Carpe Diem — Kevin MacLeod Licensed under CC BY 4.0 https://incompetech.com

Ascending the Vale — Kevin MacLeod Licensed under CC BY 4.0 https://incompetech.com

Bloom — Pixabay Music Licensed under Pixabay Content License https://pixabay.com/music/

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Cruising the Great Lakes with Victory I

Robert and Theresa — Tue, 12 May 2026 08:14:00 +0000

Part 2 - The Ship

In this episode we share details about the ship itself. How does it work for those with disabilities? What is a typical daily schedule? Which features keep guests returning?

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript Robert: Welcome to Living the Could Life. I'm Robert and we recently returned from a Great Lakes cruise leaving out of Toronto and ending up in Chicago. Theresa: And I'm Theresa. We sailed on Victory One. It's the first cruise of the Great Lakes for the season, so that's very exciting and we're happy to be on board. Robert: We're going to talk about the airport, the hotel, the ship, and we've discussed the itinerary already and we're going to concentrate mostly on accessibility and what it was like to move around on the ship and the rooms, the restaurants. Theresa: And that's correct. If you go and look at a previous, actually one we talked about the Great Lakes in general and there is a part one of this podcast where we mostly talked about the ports on the cruise. So we are going to start from the beginning and that includes, We left home for a short drive of about an hour to the Manistee airport and we took a flight. Robert: I believe it was 21 minutes over to Chicago and then in Chicago we picked up a flight going to Toronto. Theresa: And we arrived in Toronto and going through immigration was fairly quick and easy, but getting, well, getting an Uber was also easy. Getting to our hotel, the Westin Harbor Castle in downtown right near the islands right in the center of town, took a bit of time because a lot of the roads had been closed. The main quick arteries. Robert: The Gardner expressway. Theresa: Like the Gardner. So we had to take just, I guess I'll say not such quick streets. So it took us maybe over an hour. Robert: In what should have been probably a 20 minute drive, I think. Theresa: And then our Uber driver was not so sure of where the hotel was and you can't blame him because we got there and the entrance isn't really that easy to see. He stopped down the street, but you actually have to turn down the next block and there's a parking garage which you go through and up two levels to get to the main entrance of the hotel. Robert: So you can drive the winding driveway up to the main entrance or from the street level you can take two flights of stairs up and then there is around the corner, if you're facing the hotel on the right side, there is an accessible entrance. It's usually activated with a key card, but if you're just coming to the hotel for the first time you can

Review of the Great Lakes Cruise on Victory I

Robert and Theresa — Wed, 06 May 2026 19:08:46 +0000

Part I - The Itinerary

In this episode, we share our opinions of Victory I as she plies the Great Lakes. We pay particular attention to accessibility.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript Hi, welcome to living the good life. I'm Theresa and I'm Robert. We are sadly on the last day of our Victory One cruise along the great lakes. We started in Toronto where Victory includes the first night at a hotel, which makes a lot of sense because many people travel, a lot of our fellow cruisers are from California and areas far away areas that aren't on the great lakes. Robert: Although there are a few of us from the Midwest, we landed in Toronto and we want to focus a little bit on the accessibility needs or if there were any problems along the way. And we found navigating the Toronto airport was fairly easy. A bit of walking to finally get to the Uber pickup. Theresa: There was a lot of construction in Toronto. The Gardiner Highway was close, so it took us a little longer, but we did research the Westin Harbourfront Castle, which is where we stayed. It was a great location. We did find an accessible entrance. It's around if you're facing the front and you are on the street because it's a very strange entrance, like you go into a parking garage and there's an entrance. But if you're on the street facing the parking, you just head to the right. And there is a sign there. But unfortunately, they want you to have a room key. If you don't just hit the intercom button and somebody will let you in. Robert: The main entrance to the hotel was actually two stories up from the street level. So you had to drive up a reasonably steep driveway, I guess, up to the front doors. And that was easy enough to do. And that's where you would also pick up your Ubers or taxis or any other transportation if you needed to get down to the street level on the inside, you could take an elevator down two levels and then come out again, the accessibility door that's on the, as Theresa said, on the right side, and it takes you right out to the street. Theresa: And we had looked for it and had a little problem. It looks like a door for the staff or unaccessible, you know, do not go beyond here. So just look when you get off the elevator. You turn left and then it will be on your right. It's like double doors. It is not Walmart. Nothing says accessible. Robert: Once we got outside and the sidewalks were pretty clear, there were curb cuts at all of the intersections and all the crosswalks. The one thing is you really have to watch out for the bicyclists, because when you're going across a crosswalk, there are bicycle lanes that are also going perpendicular to the crosswalk. So you have to look both ways because the bicyclists come in both directions. And there were enough e-bikes that were moving along at a good clip. Theresa: Right. So that all worked out. There was a registrat

Toronto to Chicago, Cruising on Victory

Robert and Theresa — Wed, 29 Apr 2026 03:04:03 +0000

Alternatives to Ocean Cruising.

In this episode we focus on a voyage that visits all five Great Lakes. For some the idea is curious and unusual. Others understand the draw of these great lakes.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript Theresa: We are currently in Toronto and about ready or getting ready to board the Victory One. Robert: We're on Ward's Island on a dock that's actually facing the Victory One, the ship that we're going to be on. It's docked next to the Viking Octantis. Theresa: And I don't know if you can hear in the background, there are a lot of birds. And I don't know if this is on any flyway. I do know that, well, I guess south of here is Rochester, New York, but when you go west in Ontario, there is a flyway that I believe goes across Pelee Island and then to the south shore of Lake Erie, where there is a very large birding and migratory area. They have a big birding event every year near, well, it's not Fort Clinton, but it's very close to one of Ohio's nice state parks with lodges called the Maumee Bay State Park. Robert: I remember coming here during the 1960s when we would come up for the summers to visit relatives in Toronto. And we're standing on the dock that we often visited and we'll be going back, back into the center part of Ward's Island to the cafe, the Island Cafe. Theresa: Which supposedly now sells beer, which wasn't allowed before. There's Ward's Center and those two connect. And Hanlan's Point. And then Hanlan's Point. We took a ferry right from near the Weston Harbourfront Castle, where we stayed last night. And on Victory, your cruise starts the night before. And that makes a lot of sense, especially if you're flying in, because we know how flights work. And we talked to a few fellow guests at registration. It seems some have come from Central California and they're surprised at how cold it is here. I think it's 50 today and we're thinking that is warm. Robert: It's a nice blue sky. Yeah, nice blue sky, 50 degrees, a very light breeze. Theresa: We've seen one of my favorite birds, but didn't hear it. That is the common loon. And maybe mallard duck, but I don't own my birds so well, especially my ducks. Looks to be that this part of the island is a wetland. So I think if you were a birder, this might be, or a ducker, I don't know. But I think this could be good for birding. Are there a lot of cottages here? Robert: And they've been here for a very long time. I remember when I was 8, 9, 10 years old, we'd come here. This was always a high point of our summer vacation when we visited relatives to come to the islands and the cottages were always there. Robert: We're on Ward's Is

Cruising The Great Lakes

Robert and Theresa — Tue, 21 Apr 2026 17:17:42 +0000

Freshwater Adventures

In this episode we focus on cruising the large inland lakes of the US - the Great Lakes. The ports are fascinating and the ships are smaller and ideal for those whose bodies have been disrupted. You may be surprised by what there is to discover while Cruising the Great Lakes!

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript Theresa: Welcome back to Living the Good Life, where we explore real world travel for real bodies. Adventures that are meaningful, doable, and full of wonder. Today, we're heading somewhere unexpected, the Great Lakes. Not the ocean, not the Caribbean, but a freshwater cruising region that's older than the pyramids and bigger than many countries. Robert: And if you're thinking, wait, cruises? On the Great Lakes? Oh yes, not only do they exist, they've been around for over a century and now they're having a major renaissance. Theresa: And I have always lived in a state with the Great Lakes, so we're fairly familiar with them and have visited all five. So today, we're diving into the history, the ships, the cruise lines, the ports, and the surprising magic of these inland seas. Robert: Let's start with the basics. The Great Lakes, Superior, Michigan, Huron, Erie, and Ontario. They hold 20% of the world's fresh surface water. That's wild. Theresa: And when I was in school, to remember the names of them, we remembered the word homes. Huron, Ontario, Michigan, Erie, Superior. So we could get them all. And some people are really surprised when they see the Great Lakes, but we'll go into that a bit later. And they are enormous. Lake Superior is the size of Austria. Lake Michigan is bigger than Croatia. These are not ponds. You can look at them and think you're on the ocean. The lakes, these are inland seas with their own weather systems. And we can tell you up in our part of Michigan all about lake effect weather. They have their own weather systems, their own tides, even their own maritime culture. Robert: And their own shipwrecks, thousands of them. The lakes have been major shipping routes since the 1800s, and storms here can be brutal. The most famous wreck is the Edmund Fitzgerald, lost in 1975 on Lake Superior. Theresa: Which is why lighthouses in this area are such a big part of the Great Lakes identity. In fact, Michigan, and this may be surprising to some people, it has more lighthouses than any other state. Robert: And that sense of maritime history is part of what makes Great Lakes cruising so different. You're not just island hopping, you're time traveling. Theresa: Right, and there are so many interesting maritime museums along the coast of the lakes. Most of them have a different focus. Some

Traveling With Your Special Needs Person

Robert and Theresa — Tue, 14 Apr 2026 11:56:12 +0000

HAVE A BACKUP PLAN FOR WHENEVER YOU TRAVEL!

In this episode, we share our Plan Z strategy for traveling with a person with special needs. Making a few adjustments helps your travel go smoother. Remember that it is the smiles that count.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript : Robert: Show Notes
Music
Opening Theme “Carpe Diem” by Kevin MacLeod Licensed under Creative Commons: Attribution 4.0 http://creativecommons.org/licenses/by/4.0/ Source: incompetech.com Interlude: "Ascending the Vale" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/ Closing Theme “Bloom” via Pixabay CC0 License (No attribution required) Source: pixabay.com/music
Mentioned in Living the Could Life

Cambria Suites

Living The Could Life - A 70-Day Workbook For Living Well After Body Change

Amsterdam and Muiderslot

Robert and Theresa — Tue, 07 Apr 2026 14:38:48 +0000

Exploring the Low Country With Ease

In this episode, we share tips and tales for exploring Amsterdam and Muiderslot. Amsterdam recently celebrated its 750th anniversary. And that connects nicely with Muiderslot. Do you know the connection?

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript : Robert: Welcome back to Living the Could Life, the podcast where we explore the world at a pace that honors your body, your energy, and your curiosity. I'm glad you're here. I'm Robert and I'm Theresa. Theresa: Today we are taking you to one of Europe's most enchanting cities, Amsterdam, and then on a slow scenic day trip to one of the best preserved medieval castles in the Netherlands, Muiderslot, and I don't speak Dutch, so... Robert: This episode is especially for travelers with disabilities, chronic illness, mobility limitations, or anyone who prefers a gentler, more accessible way to explore. We're talking public transportation, accessibility, highlights of the city, and how to reach Muiderslot by train, bus, or ferry. Theresa: And we'll get into the castle's history as well. It's surprisingly dramatic, plus we'll also talk about what's accessible and what's not at the castle, and where to eat in the charming little town of Muiden. Robert: So, settle in. Let's start in Amsterdam. Theresa: Picture this. You're crossing a 17th century cobblestone bridge while simultaneously eating a cone of hot fries and dodging speeding bicycles. You're not in a museum. You're standing inside an open-air museum. A 750-year-old experiment that's still unfolding. Robert: That's Amsterdam. Living history with momentum. Theresa: You aren't just observing the past. You're actively trying not to get run over by it. Robert: The city is ancient, but wildly forward-thinking. To understand it, you have to start with the ground, or really the water, it's built on. Theresa: Right, and we want to understand how a city built entirely on water mastered its incredibly challenging environment, created world-class art, and and just threw a massive year-long birthday party just to celebrate its own survival. Robert: This isn't just a travel itinerary. It's a look at urban evolution. How does a place go from a muddy swamp to a global powerhouse without losing its soul along the way? Theresa: And it's a fundamental rule of urban design. Geography is destiny, and Amsterdam's geography is its most defining feature.

Cruising in Alaska

Robert and Theresa — Tue, 31 Mar 2026 20:58:02 +0000

Getting Ready to Travel

In this episode, we share tips and tales for cruising in Alaska. There are many options for those of us with body changes. This is the foundation of the Living the Could Life approach.

Transcript
Click Here for Transcript : Theresa: Welcome back to Living the Good Life, where we talk about travel, change, and what it means to build a life that fits the body you have today, not the one you used to have or the one you wish you had. I'm Teresa. Robert: And I'm Robert. Today we're diving into a bucket list giant, Alaska, but we're doing it through a lens that doesn't get talked about often enough. What it's like to cruise the last frontier when you're navigating mobility challenges, low vision, chronic illness, or other challenges. Theresa: We often talk about the two meanings of could. There's the polite permission, could I sit here? And then there's the possibility I still could see the world. Alaska is just the perfect could destination. Robert: Exactly. It's about the science of the could. We've talked about the McGill University studies on neuroplasticity, how our brains can rewire to find new ways to navigate the world. Alaska cruises are built for that. The scenery comes to you. You can sit on a balcony or in a lounge with floor to ceiling windows and have a front view seat to a glacier without taking a single step. Theresa: People often ask, can I really do Alaska with a disability? Robert: And the answer is a resounding yes. In fact, Alaska is arguably the best accessible wild destination on earth because the cruise ships act as mobile base camps. You get the glaciers and the grizzly bears without the vertical hikes. Theresa: Use the 70-day workbook or calendar that is listed in the show notes to practice before your cruise. If you aren't used to a scooter, practice in a local grocery store. If you have low vision, practice using your assistive tech in new environments. Maybe you're on a new med or digestive schedule. See how that works best for you before hopping on a cruise ship. By the time you hit the gangway in Alaska, your brain has already done the could work. Robert: Just a bit of housekeeping before we start. Mainstream cruises in Alaska start at four different ports. Seattle, Vancouver, Seward, and Whittier. The last two are near Anchorage and are usually one way. The others can be either one way or round trip. We will be focusing on round trip Seattle for today. Seattle has many daily flights. It's a great city to visit and the port is convenient to access from downtown. Actually, there are two ports there. Be sure you know which one you're going to. Theresa: What we like to do when in Seattle is grab a city pass and explore Seattle either before or after the cruise. Another thing I really like about the port of Seattle is that when your ship returns to Seattle, you can send your luggage for free from the ship to the airport. All ships do not seem t

70-Days to Change

Robert and Theresa — Wed, 25 Mar 2026 03:35:39 +0000

Getting Ready to Travel

In this episode, we walk through the 70‑Day Change Plan — why it works, how it supports slow, sustainable change, and what it looks like to rebuild your life one honest day at a time. This is the foundation of the Living the Could Life approach.

Transcript
Click Here for Transcript Disclaimer: Before we dive into today's episode, a quick but important note. The information shared in this podcast is for general educational and entertainment purposes only. We love sharing our insights, but please remember, this content does not constitute medical, health, or professional advice. Every body and every situation is unique. You should always consult with a qualified medical specialist or healthcare professional before starting any new program, making lifestyle changes, or acting on any information you hear today. Your health is your responsibility, so let's keep it safe. Theresa: Welcome back to Living the Good Life, the podcast where we talk about rebuilding a life after change, the kind of change that shifts your energy, your identity, your body, or your sense of what's possible. Today, we're diving into something that sits at the center of this entire project, the language of good, the science of neuroplasticity, and a 70-day rhythm that helps your brain adapt to a new reality. Be sure you listen to the disclaimer. At the beginning, everything here that we say is just for education and entertainment. We're not doctors, lawyers, medical professionals. Oh, and by the way, I'm Theresa. Robert: And I'm Robert. This isn't just theory. This is lived experience, neuroscience, aging research, and the kind of gentle, sustainable change that actually works, especially for people navigating body changes, chronic illness, or later life transitions. We're going to talk about Helmstetter, McGill, Yale, habit formation, and the two very different meanings of could. Theresa: And this is a bit of a review. We did talk about the meanings of could last week, but they fit in again with the 70-day change plan. There's probably a point that we all had where we realized we weren't going back to who we were and how our body was before it changed. Your energy changed, your capacity changed, and you kept waiting for the old version of yourself to come back online, kind of like a system reboot that just needed one more time. But it didn't. And eventually, we all have to face the truth. We weren't going back. We had to learn to build a new life from where we were and where we are now in this body with this energy and with this reality. And that's where this whole 70-day idea started to take shape. For example, we recently built a house and are still building it. And my vision changed during that period. So although we were already building a house for aging in place. Robert: And that included things like 36-inch-wide doors to accommodate a wheelchair if that was ever necessary, lighting so that there were no dark areas in the house. Theresa: Walk-in shower, vanities where a wheelchair could fit under, and extra handrails, like double railings on any stairs. I found the basement stairs created a lot of psychological friction, like it was a magnet pulling me into the space. So we j

Could Has Two Meanings

Robert and Theresa — Tue, 17 Mar 2026 23:54:08 +0000

The active could helps us travel with body changes

Living the Could Life focuses on the meanings of "could". One is polite or passive while the other "could"results in action. Learning to travel with a compromised or changed body takes some adjustments, but with small steps, there is still the possibility of being able to travel in an acceptable manner. Traveling with body changes will become the new norm.

Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own.

Transcript
Click Here for Transcript one selected Robert: Welcome to Living the Could Life. Today we are discussing the two definitions of could and how it applies to adaptation. I'm Robert. Theresa: And I'm Theresa. In linguistics and behavioral psychology, there's a well-documented distinction between the two ways could is used. It essentially comes down to modal strength, which we will call possibility, and the direction of the focus, which we will call agency. This takes me back to many years ago when I studied linguistics and actually Robert and I were in the same class. Robert also continued on with linguistics. Robert: Yes, I did. I actually minored in linguistics with a specialty in algebraic linguistics. But back to the topic at hand. There's a moment in every reinvention when you realize you're not trying to go back anymore. You're trying to go forward. And that shift doesn't happen all at once. It happens in small, meaningful increments. Theresa: Today we're talking about how all those pieces come together. Through the way our brains store meaning, through the way we adapt over time, and through the power of one small word, could. Robert: We're bringing in some ideas that help explain why could works so well. That's the fuzzy trace theory. How we remember the meaning of things, not the details. We'll get to that a little bit later. Theresa: Okay, so we are now going to discuss the two different coulds. And we'll be talking a lot about the two different versions of could. There's the polite, hesitant could. The one that avoids commitment. And then there's the possibility could. The one that opens a door. Robert: The possibility could is the one that helps us rebuild after life changes. It's the one that says, I could try this, instead of I should be able to do this. Research, particularly in the fields of neurolinguistics and cognitive psychology, categorizes these coulds as follows. First, the possibility could. The suggestion. It highlights that an option exists in the external world, but doesn't necessarily link it to the person's internal drive. The research on linguistic hedging shows that this type of could creates a mental safety net, because it implies something might not happen as much as it might. The brain processes it as a hypothetical or a gist. The effect is excellent f

About Living the Could Life

Robert and Theresa — Tue, 10 Mar 2026 16:07:32 +0000

About this Episode:

This episode introduces who we are, why we created Living the Could Life, and why we are here. If you’ve suddenly found that your body's performance doesn't sync with your mental attitude, you have come to the right place. Navigating disability, chronic illness, aging, or any kind of life change was not in your plans? Join us.

This is basically an introduction to us and what we hope to share in upcoming episodes.

Transcript
Click Here for Transcript Theresa: Welcome to the very first episode of Living the Could Life. I'm Theresa. If you're here, you're probably someone who's had to adapt your life several times, maybe by choice, maybe not, or maybe you're still figuring out what the next chapter looks like.Either way, you are in the right place. Robert: And I'm Robert, your co-host, the guy who scopes out the area, takes photos of inaccessible places, and who's trying hard to earn his seeing-eye guy vest. Yep, you sure are. Theresa: You should have your vest really soon. You're getting really good at this. The show isn't about pretending everything is fine, easy, or trivial. It's all about adaptation. It's about the difference between what travel should look like, no pun intended, and what it could look like now. Don't expect any toxic positivity from us. We are here to support each other, be realistic, and share ideas. And since this is our first full episode, we want to start with the heart of the brand, where this idea came from, what it means, and why we're choosing to tell these stories now. By the way, we should tell you a bit more about ourselves. I'm Theresa, a travel writer who, in later life, suffered NAION, also known as Non-Arteritic Anterior Ischemic Optical Neuropathy. Basically, it's a stroke of the eye, and I started with that happening in my right eye. But did you know you can still be fairly independent with one well-functioning eye? It took a bit of adaptation, but I did okay for several years, until one day, the vision in the other eye rebelled. Maybe it thought it was being overworked. There was just a 20% chance of the same thing happening in my good eye, the left eye, and I never expected it to happen twice. I had no pre-existing condition that made me a candidate for it in the first place. But that second eye has a blurred tiny crescent moon area. So now, what was my good eye is now my bad eye, and vice versa. I didn't see that coming. Although I lost my independence, my ability to drive, and the ability to do many things that I took for granted, my condition is considered an impairment rather than a disability. Not sure who decides on that classification. It's obviously somebody without this impairment. Robert: I'm Robert, a former high school math teacher, now enrolled in the Seeing Eye Guy certification program. I even have a business card for proof of that. I never expected to be a caregiver so soon after my early retirement due to how COVID had changed teaching. We both enjoy travel, and now I have suddenly started noticing things that I never really paid attention to before. Like finding escalators and elevators, looking for trip hazards, and such. Theresa: Likewise. The idea of this podcast started spinning in our

Trailer

Robert and Theresa — Thu, 11 Jul 2024 01:00:32 +0000

We are in the process of producing Living the Could Life, a podcast for travelers whose wanderlust doesn't let disabilities get in the way. Keep your eyes posted for our official launch date.