I Always Have a Choice

I can’t control what happens next. But I can still influence it.

This post is about how acquiring disabilities can make you feel like you’ve lost control over your life, and how to deal with that feeling.

I want to thank my Substack friends for their likes and supportive comments on my last article because, honestly, I wasn’t sure how it would come across.

I worried that talking about “possibility” after acquired disability might sound naive or privileged to people whose disabilities currently give them far less access to society than mine does — often because of ableist attitudes and a lack of accessibility. I think a lot about how fortunate I’ve been as a disabled person, that:

• Regardless of how I felt about moving back to the town where I grew up, I’m surrounded by people who’ve known me for years and look out for me.

• I have a very supportive family.

• I live in a rent-controlled building that’s either within walking distance or a short cab ride from most things I need weekly, with people willing to help me with out-of-town rides when necessary.

• I live in Canada, where most of my health costs are covered, and where disability support — while flawed — still offers protections many disabled Americans don’t have access to.

• I’ve worked some jobs I genuinely enjoyed since becoming disabled (alongside the crappy ones I took because no one would hire me to do anything else.)

I’m fully aware of how differently things could have gone. And I would never want to shame anyone who’s struggling to see possibility in their future, because I remember what it was like to be there — after the stroke, yes, but also before, during some very dark periods of my life.

When Control Disappears

Thinking more about that last post, I think the shift from “What is life now?” to “What are the possibilities?” is difficult after acquired disability because so much suddenly feels outside our control.

Even after 25 years, seizures still scare me when I feel them coming on (I don’t always) because I don’t know what will happen during the time I lose. If I’m especially frightened, I start wondering whether I’ll wake up again. Since I live alone, that feeling can be terrifying.

And because accessibility is still so inconsistent in Canada and the US, that loss of control starts seeping into everyday life. The concert venue’s website says it’s accessible, but the elevators are out of order. An airline classifies a wheelchair as baggage and forces the owner to use a chair she can’t propel herself in just to get to the baggage counter and deal with the situation.

Suddenly needing support with bathing, dressing, or eating — these are profound losses of personal control that are incredibly difficult for people to navigate.

It’s hard to imagine possibility when even the dignity of basic agency can sometimes feel out of reach.

Influence Instead of Control

So how do we move from the fear of “I don’t know what happens next” toward rebuilding some sense of control?

For me, it came from realizing that while I couldn’t control what happened next, I could influence it.

That meant:

• identifying decisions still available to me

• separating assumptions from realities

• recognizing areas where choice still existed

It’s another kind of reframing. Even when it looked like life had been completely decided for me, some choices still belonged to me.

I decided, once the option became available, that I wanted to join the group that did early-morning walks around the halls of the local high school during the winter so I could keep walking regularly. I decided to join a gym when I could. I decided to apply for jobs even when I was fairly sure I wouldn’t get them because, honestly, if you don’t apply, you’re guaranteeing the answer will be no.

And for a long time, none of those decisions changed very much externally.

I’ve known for years that to get my life closer to the way I wanted it, at least one of three things needed to happen:

• I had to get my driver’s license back.

• I had to get a job that allowed me to comfortably support myself and put money into savings.

• I had to move to a larger community where it would be easier to get to Toronto to see my doctors.

Any one of those things could drastically change my life. None of them are things I’ve successfully made happen yet, for a variety of reasons — although I’m closer to the second than I’ve ever been before.

I don’t have complete control over my life. But I do what I can to influence what happens next.

Anyone can do that.

The Choices That Remain

What decisions are still yours to make right now?

Where are you waiting for permission that you don’t actually need?

What would you try if you trusted yourself more?

Thinking in these terms — and acting on the answers — helps bring back the sense that we’re participants in life instead of being swept helplessly along by it, even if progress toward our goals is still painfully slow.

I keep reminding myself:

“I always have a choice.”