F**k you, Mars
I love The Martian, I’ve said this before, and while there are many reasons it is the allegory for life with a chronic illness that truly touches me. It is easy to see what we’re doing in our daily lives, trying to maintain our physical and psychological wellbeing, as climbing a steep hill. Difficult, but manageable. But in that context it’s then also easy to see the times we stumble and fall not as a consequence of the difficulty of the task, after all it’s difficult but manageable. Instead we see our stumble as a commentary on our characteristic flaws, our lack of resilience in the face of challenge. We can see the tumble as evidence that this is something other people could manage better.
But MS isn’t difficult, this is the black run on a ski slope during an avalanche. We’re not climbing a hill, we’re trying to grow a garden on Mars.
In The Martian, Mark Watney is forced to do the impossible. Mark gets left behind on Mars and is left with limited resources living in the Hab, a building breaking down around him. Mark manages the situation with characteristic humour but there is a moment where he realises that he isn’t going to make it, that he doesn’t have enough food, enough water, enough… anything… to survive.
This is MS. When you see your brain scans light up like a clear night sky. When everything starts to go south on you. Everything starts to fail. You begin to see the foundations of your life begin to crumble. You realise that you might not make it. That this might be it. I don’t mean that you’ll die, but I do mean that you might no longer be able to truly live.
Mark sits at his computer and slowly comes to a new realisation. He has a choice, either he can accept his fate or he can work the problem. He gets to work, solves one problem, solves the next, and the next, and he realises that if he can just solve enough problems that maybe he can survive against all the odds. That’s what I have felt like I’ve been doing, identifying each new problem as it presents itself, working the problem, finding solutions, defying the odds. You know you’re just giving yourself the slightest chance and that it could all go wrong tomorrow, but you do what you can, with what you have, where you are.
But here’s the Martian rub. Even when you do everything right, things can and invariably will still go wrong. When you’re growing a garden on Mars sometimes the Hab explodes.
Last night, the Hab exploded. I was on my way to bed. I did everything I usually do, meeting the challenge of sleeping when you have brainstem lesions, doing my mindfulness, taking my melatonin and my mirtazapine and my CBD, taking time to relax before bed. I went to bed, lay down, and nothing happened.
We’ve talked about insomnia before, and while insomnia generally sucks wholesale ass, this is something else. Tonight I cycled through my insomnia plan five times, finally getting to sleep at 7am.
It’s a weird experience lying on the couch, listening to Shon Faye, and to the Friends Per Second podcast, waiting to start to fall asleep before you head back to bed, and finding that you just don’t. Usually an hour is all it takes, but after 90 minutes I was tired but not falling asleep. I made the critical mistake of rushing the second step of the plan and I hurried back to bed, and so another cycle of the plan followed. 8 hours passed listening to podcasts and to Shon. I feel like I’ve woken up during hypersleep, doomed to be conscious during these silent hours while to everyone else the time passes in an instant.
Why has this happened? I have no idea. I have no way to see inside my head right now and given my limited information there are really only three options that I can see. The first is stress. Trump’s election, the terror he is visiting on both disabled and trans communities in the US, as well as here at home as he shapes public perception, are causing me some upset to put it mildly. I’ve been receiving some hate online and the insomnia started shortly after, so maybe the problem is simply stress plus pre-existing brain damage. The second is a pseudo-relapse. I could have a minor infection somewhere I’m not aware of and that’s causing the symptoms to flare. The third is the true fear, that this could be the start of a relapse.
What is hardest is knowing it is happening, knowing what it could mean, and having no way to predict what comes next or to stop it. I don’t know if I’m going to wake from my few hours of sleep tomorrow with a new symptom, some new nightmare I now need to manage. I don’t know if this is just some kind of blip and tomorrow I’ll be fine. And I don’t know how to be ok having that little predictability in my life, especially when my world is quietly on fire like this. How am I supposed to sit and watch TV under this kind of threat?
After the Hab explosively decompresses, Mark Watney duck tapes the seal. He kneels down counting potatoes, listening to the wind outside pull and push at the duck taped wall. With every gust his whole body tenses, the existential threat of Mars just a thin sheet of plastic away. Mark tries to concentrate on the task at hand, his attention constantly pulled by the temptation to panic at the sound of the wind.
The wind is blowing. I can hear the plastic.