For the last few years, my feet have been causing me consistent drama. I’m in a wheelchair, so they don’t do anything all day, but they still feel the need to go on strike. The sides of my toes break open, and I get sores that won’t heal without help.

When I first went to the podiatrist, she was sure I had a circulation problem, and she suggested that I see a vascular surgeon. Before I went running off to see a surgeon, I asked if they had a vascular test in the office. They did. They attached leads to my toes and ran it. When it finished, I could tell the nurse was confused, so she ran it again.

A few minutes after the nurse left, the doctor came in. She said she didn’t understand it. The sores pointed to a vascular problem, but I had ninety-eight percent oxygen all the way down to my toes.

I told her I understood just fine. My circulation was fine. The simple answer is that I have cerebral palsy, and it does weird stuff to my body. My feet were doing what they were doing because they were cold.

She trusted me, and she waited until summer to see if I was right. When it warmed up outside, my feet healed. Now she knows the answer to my particular problem is heat.

I love summer. Even at ten in the morning, when it’s eighty degrees outside, I’m cold until I go out there. When it’s around ninety, thirty minutes in the sun warms my feet, and they mostly stay warm the rest of the day without any help.

People think I’m cheap because I don’t run the air conditioner. I don’t need it. I’ve had help who couldn’t believe that. So I run it when somebody complains about it.

Everybody knows somebody with diabetes. You can’t throw a rock these days without hitting somebody who is on Ozempic, either for weight loss or blood sugar control, or both. Most of the time, they can manage it as long as they do what they need to do. It’s like my feet in the summer. I don’t have to worry about them breaking open in July because I can go find the sun.

When it starts to get cold outside, the heated socks go on as soon as I get out of bed. I also swap shorts for pajama pants, which are much warmer but only work at home. Shorts and a T-shirt go anywhere, so I never have to change. In pajama pants, if I’m going somewhere, I have to change into nicer clothes first.

Like somebody with diabetes, I can do everything I normally do and still get sores. The only way to handle them is Medihoney or some variant of it. In most cases, that just keeps things where they are, and I do the best I can until late May.

I started paying more attention to my body a few years ago because I knew that eventually it was going to be hard to live with. Most of the day-to-day problems that come with this body have had a fix I could reach. Constipation is one, at least for everyone I’ve met in a chair, and mine was solved by drinking water. So were my congestion and a few other things.

The feet are the first problem I can only manage. Fixing them would take a major step.

Right now I feel good. That isn’t guaranteed to continue, and if I take my feet as an indicator, it probably won’t. That’s scary, because I think I’m doing everything I can possibly do, and I still have this thing that gets out of control when it gets cold.

Age comes for everybody. Most older people around me aren’t shy about the fact that getting old ain’t for sissies. At some point, something pops up that you can only manage.

I will deal with this for the rest of my life. The only answer I can come up with is moving to a tropical climate. Anybody got a house in Hawaii?

It happened to land during a week my massage therapist was already on vacation, so I had nothing on the calendar I needed to cancel. It started Sunday afternoon and I was back to normal by Thursday. My own theory, for whatever it’s worth: I drink about ninety ounces of water a day, on purpose, and I think that’s a big part of why nothing ever really sticks to me for long. I slept in every day, and I skipped my standing frame that week, because rest seemed like a good idea.

I didn’t feel good, and I took everything slower, but I was never stuck in bed. Once I’m up and in the chair, a cold doesn’t stop me. I can blow my own nose. I can ask whoever’s around for whatever over-the-counter medication I want. The list of things I need another person’s hands for doesn’t get one item longer just because I’m congested.

Somebody already gets me out of bed every single morning, cold or not. Somebody already helps me get dressed, cold or not. My health doesn’t decide what I do every day, even on a bad day.

I worked that whole week, just at a slower pace. Calls, messages, the same work I do every other week. I didn’t think to mention I was sick, not because I was being tough about it, but because it wasn’t worth reporting. My nephew knew, since he’s the one who gave it to me. Nobody I worked with that week did, because there was nothing about the week that would have told them.

When people hear how I live, they tend to say that must be really hard. I shrug and say I just work here. I’ve got stuff to do every week, and being sick doesn’t change that any more than it would for the average person.

And still, people slow down when they talk to me. It’s often worse than that. Most people aren’t sure I can speak until I do.

I’m not talking about strangers on the street. I’m talking about doctors who address the person next to me first. Colleagues in meetings who glance at my aide like they’re looking for a translator. Restaurant servers who skip me completely and ask whoever I’m with what I’d like to order, and that one isn’t rare, it happens to me on a regular basis.

I’ve got a favorite version of that last one. Dinner with my parents, years back, a server asks the table what I’d like, meaning everyone at it but me, and I answer for myself before anybody else gets the chance. My dad gets this annoyed look on his face. When the waiter asks what’s wrong, my dad tells him: we just spent the last hour trying to get him to shut up, and you just got him started again.

Cerebral palsy affects movement. It doesn’t decide what you know.

CP is damage to the developing brain that affects how the body moves. That’s it. Whether your cognition comes along for the ride depends entirely on which part of the brain was affected and how severely. Depending on the source, somewhere between half and seventy percent of people with CP have typical cognitive function. A lot of us are just stuck in a body that makes other people nervous.

Mine makes people nervous. I get that. The chair, the way my hands work, the cadence of my speech when I’m tired. I’ve been the most visually prominent person in almost every room I’ve entered for 47 years.

The nervousness doesn’t stay in the body. It migrates up.

People who wouldn’t dream of questioning whether someone who uses a cane can do calculus will absolutely assume a person in a wheelchair can’t communicate. It’s not intentional. That’s kind of the point. It’s baked into how we talk about disability. The visuals of significant physical impairment have been culturally coded as cognitive impairment.

It’s frustrating.

When I clock a guy who isn’t taking me seriously, I’ve got a move. I’ll say something sharp, a little trash talk, nothing planned, just enough that whatever he thought he knew about me stops making sense in real time. Say something a guy in a wheelchair isn’t supposed to say, in a tone he wasn’t expecting, and his whole filing system breaks in about two seconds. It’s not always the nice version of me. It works anyway.

That move doesn’t work on women. You don’t get to come at a woman that way in polite company, and I wouldn’t want to even if I could. With a guy, I’ve got a shortcut: something sharp enough, unexpected enough, to force the correction fast. With a woman, I don’t have that button. So the same assumption, whether I’m all there or not, just sits there longer, because it takes her actually taking the time to find out, and I don’t have a way to speed that up. That’s not a request for pity. It’s just what I’ve experienced, repeatedly, for a long time.

Every time someone decides who I am before I open my mouth, I have a choice: correct them, or let it go. I’ve been doing that since kindergarten.

I’m not asking anyone to feel bad about it. I’m asking people to notice when it’s happening. Notice when you’re waiting for me to finish my sentence versus waiting to see if I can. They’re different waits, and most people don’t know which one they’re doing.

I built a career out of communication. That was not a coincidence.

People ask me a lot of questions about life in a wheelchair. They ask about ramps. They ask about the van. They ask about the chair itself like it’s a motorcycle. Nobody has ever once asked me about the night.

In my bed at home, there’s nothing to grab. Once I’m placed, I’m placed. Some beds have a metal frame I can get my fingers around and actually pull myself over with. Mine doesn’t.

You shift in your sleep a hundred times and never know it. You roll off a shoulder, kick a leg loose, turn toward the cool side of the pillow, and your body corrects it without ever waking you up. I move some too, enough that I’ve woken up completely off my pillow more nights than I can count. What I can’t do is fix it. Fixing it takes an actual turn, and a turn takes something to hold onto. Find a grip and I can do it myself. Miss one and I need somebody else’s hands, and at two in the morning those hands are asleep down the hall or not in the house at all.

So I lie there and do the thing everybody claims they wish they had more time for. I think. At length. Whether I want to or not.

Most folks who work in healthcare or any kind of mobility therapy will tell you that you need to worry about pressure sores. Skin breaking down over the bone because nobody turned me. Hospitals take it seriously enough to put patients on a turning schedule for it, every couple of hours, more through the night. Even that number turns out to be softer than people assume, real studies comparing two hour and four hour turning have come back with no real difference between them, and one review found a good mattress paired with less turning beat the standard schedule outright. Nobody’s actually sure what the right interval is. They just know somebody has to move you.

That’s not my fight, though. Not yet, anyway. I don’t get the spots people assume come with lying still all night. What I get instead is cold feet, and only in winter. Come December I get sores on the sides of my toes, and there’s no fixing that from a bed I can’t get out of. I wear the same socks pretty much year round. In winter they’re heated, whatever it takes to keep my feet from getting cold every hour I’m upright. In summer they’re just socks, no heat, because I don’t need it, except for about half an hour a day when I go outside on purpose, barefoot, real sun, and that alone keeps my feet warm for the rest of the day, every day, like clockwork. Nobody schedules a nurse for that one. I just know it’s coming, and I get ahead of it.

There’s a word that shows up in my head on the long nights. Stored. Not put to bed. Stored. Like the day’s over and I’ve been set down somewhere safe until I’m needed again. That isn’t how the people who help me mean it. It’s just how the arithmetic feels at three in the morning when I’m wide awake and feeling every bit of it, and I want to turn over and can’t find anything to turn with.

It’s the smaller word for a longer list. Getting up because you want to, not because someone’s schedule allows it. A snack at midnight for no reason at all. Deciding, in your own time, to do anything at all with your own body, up to and including the things nobody writes essays about. I’d never actually lined that list up in my head until I sat down to write this one.

I’m not handing you that so you’ll cue the sad violin. I’ve made my peace with most of it. You learn to fall asleep fast, because the window where you’re comfortable is short and it doesn’t always come back. You learn to want very little once the lights are out. You get good at a kind of patience nobody signs up for on purpose.

The world only really pictures one version of this. The daytime one, the chair, the ramp, the blue parking spot, fits in a photo. That’s the disability people think they understand. The nighttime version doesn’t photograph. It’s just hours. Quiet, mostly motionless, uncounted hours that are as much a part of this life as anything I do in the sun.

Nobody’s making a fundraiser out of “missed the grip.”

So the next time you flip onto your other side in your sleep and never even surface, notice it. You’ll do it ten thousand times this year and never say thank you, because why would you. It’s yours. It’s automatic.

I notice every single time mine isn’t.

I’ll be up around six. Somebody comes back, the day starts, and I get to be the guy you see. Until then, I’m right here, more or less where they left me, counting the hours until I get my body back.

Right now I’m at my parents’ house. The reason is simple: My caregiver is out of town for spring break, which forced me to spend the full week here instead of managing things from home.

The timing at least worked out well — it landed right on my dad’s 71st birthday, so we’re getting to celebrate together. That said, if I had reliable support available, my strong preference would have been to stay in my own space this week and keep my normal workflow going. I would have simply made a day trip over for the birthday instead of packing up for the entire week. But without backup options, that independence wasn’t on the table.

Working here has been a clear reminder of the gap between how most people use technology and how it feels for me. I’m limited to my phone with no access to my normal computer setup. While plenty of people live on their phones, it’s a very different experience when you don’t have the manual dexterity to hold one comfortably. Right now the phone sits on the table in front of me because trying to grip it for long stretches isn’t feasible. The small screen and awkward angle put real strain on my neck after a while, and the WiFi here has been spotty at best. I can make it work, but it’s far from optimal.

This is the exact pattern I’ve been talking about in recent posts. Despite multiple people applying for caregiving roles, follow-through has been almost nonexistent. Weekend coverage, short-term help, emergency backup — it all falls through at the critical moment.

That’s precisely why I’m so energized about where robotics is headed. Early home models like the [1X NEO Gamma] are already heading to early adopters later this year, while Tesla’s [Optimus]  ( Yo Elon, can I be a product tester? I’m available and ready to train!) is ramping production in 2026, and others are close behind. Sure, those first versions will need regular recharging, their skills will be limited at the start, and the complete setup I’m picturing is still a few years away — I understand that completely. But mechanical assistance that shows up reliably, follows instructions without flaking, and handles physical tasks consistently would change everything for someone in my position.

And here’s what has me even more excited right now: the custom agents I’m building with Grok this week. These aren’t generic chat responses. They focus on specific tasks, remember my exact preferences, and adapt to my workflow. One helps keep my writing style consistent — even when drafting full articles from my phone after seeing just a few examples. Another creates custom images that match my vision for the blog perfectly. And another brainstorms practical income ideas that fit my life, turning them into step-by-step plans I can actually use. The reusability is powerful. The same agent can shift between these tasks without losing context or forcing me to repeat instructions. This turns AI into a reliable everyday partner that multiplies what I can get done.

Even from this temporary setup, I’ve been able to keep momentum going on multiple projects. That’s the bridge I’m building today. While the search for human caregiving help remains difficult, the combination of advanced robotics for physical support and intelligent, memory-driven agents for writing, visuals, and income generation is going to create a level of independence I can actually count on.

I’m sitting here at my parents’ place, phone on the table, dad turning 71, and still making real progress. The frustration of limited options hasn’t disappeared, but the excitement about what’s coming has only grown stronger.

Progress doesn’t wait for perfect circumstances. I’m using the tools already available to prepare for the ones that will transform daily life. And I can’t wait to see how it all comes together.