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.

When I was 25, I had a plan for aging. I was going to be famous first. Personal trainer, nutritionist, doctor on call. The whole setup. And I’d stay more or less the way I was for as long as that lasted. It was a good plan. It required a specific level of fame. I got the other kind.

Cerebral palsy doesn’t get worse, but I’m aging just like everybody else. A body that’s been compensating and straining for four-plus decades starts to feel it. There’s a name for it: Post-Impairment Syndrome. The muscles fatigue faster. The pain shows up in places it didn’t used to. The mechanics of a normal day require more than they did at 25.

I knew all of this was happening to me. I just didn’t tell anybody.

Many people in this world are hurting and want you to know it. I understand the impulse. I’m not judging it. But I was not going to be one of them. So I dealt with the fatigue and the pain quietly and kept moving. For a long time, that was the whole strategy.

Around 2012 or 2013, a physical therapist had me get into a standing frame for the first time since I was about ten years old. If you don’t know what a standing frame is, it’s a piece of equipment that holds a wheelchair user upright, vertical, and weight-bearing for extended periods. The physiological benefits are real. The experience of getting back into one after decades was not pleasant. They cleared the room the first few times I went up. I’ll leave it at that.

The process also required medication. Baclofen is a muscle relaxant for spasticity that kids with CP are often started on early now, but it wasn’t standard practice when I was growing up. Baclofen wasn’t even originally developed for spasticity. It was first synthesized in 1962 as a potential treatment for epilepsy, and it didn’t work for that at all. But researchers noticed it reduced muscle spasticity as a side effect, and by 1971 it had found its actual purpose. I didn’t start taking it until my 30s. It helped. I kept taking it for years without thinking much about it.

Then, somewhere around 2022 or early 2023, I ran out. The doctor needed to update my prescription. That took four or five days. After those four or five days, the withdrawal started. Sweaty palms. Not feeling well. The kind of symptoms you see from someone coming off something they depend on.

Somewhere in the middle of feeling terrible, a thought hit me: if my body reacts like this when it doesn’t have something, I don’t need that something.

I stopped tolerating and started experimenting.

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I drink somewhere between 80 and 100 ounces of water a day. I’d much rather have a Dr Pepper. I do this because the nursing home is coming for me sooner than I’d like, and I’m doing everything I can to hold that off. Water. Of all the things I changed, this one moved the needle more than I expected. The difference in daily pain and muscle fatigue was not small.

I get a massage three days a week. Not because it’s relaxing, not because I look forward to it, but because my muscles need it and my body performs better when it gets it. It’s maintenance. The same way you change the oil in a car, not because the car enjoys the process but because you want it to run.

I’m back in a standing frame more than five hours a week. That same piece of equipment I cursed my way through in 2012 is now a non-negotiable part of my week. It still hurts. My body is tight, and not paralyzed. Holding a position that long takes a toll every time. After two hours in it, I’m ready to get out. But the benefits to my bones, my circulation, and my core are worth it. I stopped accepting how I felt as just the fixed cost of having CP.

I’ve also added supplements and gotten more intentional about sleep and food, though maybe not in the way you’d expect. It’s less about what I eat and more about when and how much. The supplement list isn’t complicated: Juice Plus vitamins, calcium, magnesium, vitamin K, and a digestive acid supplement after meals. Not an acid reducer. An acid supplement. Your stomach needs acid to digest properly. I wasn’t getting enough.

None of this happened all at once. It’s been years of paying attention, noticing what works and what doesn’t, and being willing to actually change habits when the data from my own body told me to.

Do I have more muscle control issues at 47 than I did at 30? More spasticity, more involuntary movement? Yeah. Of course. That’s aging with CP, and I’m not pretending otherwise. But in terms of how I actually feel day to day? I have less pain now than I did in my 30s. Not standing-frame pain. The baseline kind. Sitting in this chair for 16 hours and being able to work through it. Going somewhere and actually feeling decent when I get there, without spending every bit of energy just holding it together. In my 30s, holding it together was the whole job.

· · ·

The people who write about biohacking are mostly writing for a very specific audience: young, able-bodied, usually well-resourced, usually male, optimizing for performance from a decent baseline. That’s fine. There’s a market for it. But the conversation rarely includes the person who started below that baseline and has to think about this stuff not as optimization but as a survival strategy.

I’m not here to tell you what to do with your body. Everybody’s situation is different, and what worked for me took years of experimentation and a level of self-awareness I had to develop on purpose, and I’m still tweaking. Most mornings I’d rather have a donut. I don’t. Same reason I drink the water.

I started it because I ran out of medication, felt what that felt like, and decided I wasn’t going to accept it. CP is not something I can fix. If there’s a way to get closer to normal, I’m going to find it.