How To Fight When You Can’t Leave Your Bed
I suffer from ten chronic illnesses: bipolar type II, BPD, OCD, ME/CFS, fibromyalgia, IBS, interstitial cystitis, chronic migraines, hypothyroidism and hidradenitis suppurativa. I became bedbound for the first time this year.
How do I explain this life? It is so antithetical to what most people think of as a life that I don’t know how to approach it. I’m tumbling down the rabbit hole, I’m in a never-never-neverending story, so far out into Narnia my coat has rotted and all that’s left is the cold. When illness comes and reaches out a hand and says come on this adventure with me, you can’t say no. You can’t say actually, I’ve read a lot of books like this and usually you’re safer off at home. You have to go with her, and accept what she does to you. You have to become part of the story.
Before I got sick, I was a goddamn sunshine barrel of energy. I did everything at once and twice on weekends. After I got sick I did that too, but suddenly there were consequences. I think all of us have that moment in our lives when we feel our bodies slowing down, when things start to creak in the evenings, when we can’t manage to walk quite as far. And I think that moment is hard for all of us. But mine came at the age of twenty-three, and I wasn’t ready for it then. Heck, I’m not ready for it now.
Over the past seven years my life has shrunk like an old birthday balloon. It’s retained its wonder and charm, or perhaps I’ve just retained the power to find wonder and charm in it. But every day I can do less than the day before, every day things that were manageable are suddenly not, and I have to give up this thing I care about, or that thing I believe in, to keep myself well enough to find the wonder and charm at all. Seven years ago, I was an active and frankly manic student with dreams so hot you could turn them into a laser. Three years ago, I was an exhausted barely-graduate running hard up against trying to have a career when your body is as functional as that of someone with congestive heart failure or late-stage cancer. And then we move past the word exhausted, because I might as well call the sea wet. It’d be true, but it’d be so far from the whole truth you’d laugh at me. So these days I am what I guess I’d call a writer, generally bedbound, because something as simple as adjusting my pillows can leave me gasping for air for several minutes. I go out for doctor’s appointments, therapy, the very rare social engagement to keep myself sane. But for the most part, my life is here. When I write, I write here. When I fight for disability rights, here is where it gets done. I don’t want to say it’s hell. There is still so much joy in my life. But it’s fucking hard to handle.
How do you give back to a world you cannot be part of? That’s the question that’s been roiling around my head since the US election. Before I got sick, I practically hoovered up the world, running back and forth as fast as I could just to try and fit it all in. I didn’t think about giving back; I was caught up in the joy of taking, of sampling every possibility on offer. I cared, of course I always cared, but in a terribly haphazard way. But now I’m sick, and if being sick did nothing else for me it taught me to grow up a lot. Now I love this world with the strange force of a mother, I love it so hard tears come to my eyes, and now the taking’s been taken away from me all I want to do is help. But how do you help, how do you give back when you can’t even leave your bed? When you live every day with the reality that you suffer from illnesses that probably won’t see cures in your lifetime, when you live every day with neglect and marginalization and stigma? How do you give back when you can’t see a space there for what you have to give?
I’ll tell you how you do it. You do it anyway. You do it and you do it with love, because the world you’re fighting for isn’t theirs, it’s yours. You do it because if all you can have is this bed and this body and this pain, you’ll fill them with memories of the stars. You do it because it keeps you feeling alive, more alive than medication ever has. You do it because there are other people out there suffering just like you and if you fight hard enough maybe they’ll feel it. You do it because it’s all there’s left to do.
I wanted to explain my life to you. I wanted you to come away with a better understanding of what I do and how little I’m doing it with. I don’t think I ever got around to that. But if I’ve learnt anything, it’s that stories and illnesses are strange places to live. I got caught up in one seven years ago, and it’d take me seven more to try and retell it. It took me on an adventure from the person I was then to the person I am now, and it left me a little sadder, a little wiser for it. But in any story worth telling there’s someone ready to pick up the pieces and fight, and there’s noone else in this story, so that’s who I’ve got to be. I’ve got to stand up and fight, even when I can’t stand up, even when I can’t stand to have light in my eyes or noise above a whisper or any touch at all, I’ve got to stand up and fight, because I’m all I have. And because I know who I am, I say my weapons are wonder, are joy, are compassion, and if I can’t fight by standing up and marching then I’ll do what I can.
