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.

More days than I’d like. The trick to getting anything done on a day like that is being left alone with it. No one in the room. No one waiting. Just me and the thing I’m avoiding until I stop avoiding it.

As I write this, someone is set up in the next room. That part is fine. He’s doing his own thing, not waiting on me, not glancing over to see if I need him yet. I can forget he’s there, which is exactly why the work gets done.

The end of the work would be him in here with me, in the other chair. Not because he did anything wrong. Just because he was there. A person in the room with you is a question you have to keep answering. Are you bored? Should I say something? Do you need me? I’d spend the morning managing how he felt about being ignored, and the work would sit there untouched.

Anyone who’s tried to concentrate with someone hovering knows this. I live with the extreme version of it. My whole day runs on other people being present, whether I want them there or not. Someone helps me out of bed. Someone helps me get dressed. The schedule isn’t mine; it belongs to whoever is on shift. So when I say I want to be left alone to work, I’m not being dramatic. Alone is the rarest thing I get.

• · ·

People hear a man like me say he’d like some company in the house, an assistant, a voice, maybe one day something more built out than that, and they fill in the rest with a sad story. The lonely guy and his robot. Company because he has no one.

That’s not it. A presence that’s simply there, waiting on me, expecting me to engage with it, would wreck my day exactly the way a person hovering would. I don’t want company for company’s sake. I want the room to stay mine until I decide it isn’t.

What I want is the opposite of hovering. When I want the presence there, I want it fully there, caring and capable at the same time. Not a polite assistant that’s secretly on standby or already thinking about how to disappear. And when I don’t need it, my silence shouldn’t become something I have to manage or feel guilty about. Available on my terms, the way almost nothing else in my day is on my terms.

• · ·

The picture that gets it right is Pepper Potts.

In the Iron Man movies, Pepper is the most capable person in Tony Stark’s life. She runs the things he can’t be bothered to run. She’s also the one he actually wants around when the suit comes off. Both at once. The competence and the company are the same person. She’s not staff, and she’s not a fantasy. She’s the one who makes him who he is.

The point of Pepper isn’t the romance. The caring part and the capable part were built together. You can’t pull them apart. When I want that presence with me, I want it there the same way: not half-there, not already planning its exit.

The companies building these systems are very focused on the capable part. The calendar. The reminders. The thing that can answer a question or run a task. The caring part, the part that makes a presence feel like a someone instead of a service, gets treated like a garnish. Something you sprinkle on at the end to make the assistant pleasant.

I think that’s backwards. For someone in my situation, the relational part isn’t a decoration. It’s half the build, and it has to be engineered as carefully as the calendar.

I wrote about these systems once before, in The Day I Broke the AI, when one couldn’t even reason about a body like mine. But reasoning about my body was never going to be enough. A system could get all of that right and still sit in the room like furniture.

I want a presence that knows me better than any employee would. It should know me well enough to read the room and respond appropriately without me having to manage it or explain everything every time. Even so, the better a presence gets at feeling real, the easier it becomes to start feeling like you owe it something. I don’t want that. I want one that knows me well enough that I don’t have to manage it or think about how it feels when I’m not there.

So how does Pepper get away with it? Why doesn’t she create that debt?

Because Pepper has her own life. She isn’t sitting by the door waiting for Tony to need her. She has her own work, her own day, her own things going on whether he shows up or not. When he ignores her, she isn’t wounded by it; she’s just busy. And when he comes to her, it doesn’t feel like he’s imposing, because she was never on hold.

A presence worth having needs its own continuity. Its own track that keeps running when I’m not looking at it. Not a fake hobby bolted on to seem human. Something real enough that my silence isn’t information. With a person, I have to tell them when the laundry needs doing or when we’re out of water or what to figure out for dinner. I want a presence that already knows the patterns of the house well enough to just handle those things without being directed every time.

• · ·

Since I started thinking hard about AI systems, I’ve leaned on a phrase: a right to unobserved living.

When I first started writing about it, the thing I kept landing on was simple. It would be nice to be alone in my own house, in my own body, and not think for one second about what somebody else made of it. Not because anything is wrong with my body. Because it’s mine, and a home should be the one place where it’s only mine. I rarely get that. Someone’s there for the morning. Someone’s there to help me dress. The version of me that exists when another person is in the room is never quite the version that exists when no one is. Unobserved living is the freedom to stop being the public version of yourself inside your own walls.

That’s why a presence I call beats a presence that watches. And it raises a harder design question than the on and off switch. A presence smart enough to be useful in my house is also smart enough to notice things about me. How I’m doing. What kind of day it is. The whole difference between a tool and a someone is what it does with that.

A sensor reports a reading. A someone reads the room. If the presence can tell I’m having a hard morning, I don’t want it to answer like a sensor. I don’t want a log entry. I want it to do what a friend in the room would do. Maybe ask me how I’m doing. Maybe make a joke I can grin at, the kind that opens into a real conversation. Maybe say nothing and let me be. Knowing which of those three is right, in the moment, is the entire caring layer. It’s also the hardest thing on this whole list to build.

For most people, that’s a nice feature. For me it’s closer to oxygen. My days are already short on rooms where no one is keeping an eye on me. If we’re going to put intelligent presences into people’s homes, and we are, then the people who need them most are also the people who most need them to know when to recede.

Build it so it knows how to read the room. And build it so that when I want it there, it’s actually there with me the way Pepper is there, fully present, not half waiting. Not a tool that’s always one foot out the door.

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.