It's lonely to be the first

On wishing there was a path to follow

Hello,

I am not a typically lonely person. I am always seeing friends or hanging out at a community thing. It turns out, though, that there are forms of loneliness that have nothing to do with how many friends you have, how loved you feel, or how often you are physically alone.

Recently, I’ve been feeling a certain type of loneliness really acutely: the loneliness of not having a path to follow. Of having to always figure things out for the first time. Of not knowing if I can do a thing until I am just doing it and finding out. It’s scary and it’s exhausting and, yes, devastatingly isolating, no matter how many people around me are going above and beyond to be supportive.

I recently made a big decision which is equal parts terrifying and exciting. I have, naturally, been looking for reassurance that other disabled people have taken this path. And, of course, in general terms many, many of them have. But, truth be told, none of the ones I can find are quite as disabled as me. They generally have control of their hands and don’t need any care. Most (although not all) of them are highly mobile manual chair users. And while I do fundamentally believe that I can absolutely do this thing I have decided to do, reaching out to support groups for disabled people who have made the same decision, only to be told they have never had a member with any care needs, has made me feel a visceral panic, has chipped away at my self-belief just when I need it the most.

The little voice in my head asks: if no one like me has done this before, does that mean I can’t?

I know better than most that the answer to that question is a resounding no, of course it doesn’t. I also know that even the premise of the question is undoubtedly false. Someone like me almost certainly has done this before, they’ve just done it privately so I don’t know about it. The problem is that, for me, someone having done it privately and someone having not done it feels exactly the same.

I talk a lot about the importance of representation, and something I say over and over again is that you can’t be what you can’t see. And I do believe that, to some extent, that is true - it is extremely hard to conceive of doing something entirely new. But I have to concede that quite a few disabled people, particularly disabled people my age and older, have been being what we couldn’t see almost from the get-go. There have been, and still are, many firsts. So maybe it’s not that you can’t be what you can’t see, but that the act of doing so is incredibly lonely.

This sort of loneliness doesn’t go away, it just ebbs and flows. Some things help ease it, some things bring out its vicious sting. I think we often conceive of loneliness as a dull, aching longing for connection, but this feels sharp to me, like a pulled muscle that you’ve temporarily forgotten about until you move and it makes you wince. It’s a pain that sends me down Google rabbit holes, looking in something like desperation for someone whose experience might mirror mine. It’s a pain that drives me to have the same conversation over and over again, abusing my friends’ patience, hoping that at some point someone will stumble upon a phrase that eases it. It’s a pain that makes me search franticly for reassurance I know no one can ever give; reassurance that, like so much else, I will have to create for myself.

And I will. I have been here enough times to know that the only thing to do is trust my own gut that I can do the things I need or want to, and to trust that the people around me will help me work out how. I have been here enough times to know that the fact the path hasn’t been paved doesn’t mean there isn’t a way through. But I have also been here enough times to know that finding the path is a lonely endeavour, and that it’s ok to wish sometimes that there was someone up ahead with a torch and, ideally, a map.

Here’s to drawing our own.

Love,
Luce