Why are my legs so weak. What is happening. How much more can I write about illness, a boring and common experience. My own illness seems to be defined by what it’s not, what it makes impossible, or, more murkily, less possible, a distance it keeps reestablishing between you and what you thought was yourself or your life. Absence, distance, alienation, boredom. You weren’t there, you didn’t go. A kind of friction between you and the social world you’re meant to live in, where maybe you can’t get to your job, if you have a job. Illness is the opposite of a job. Good luck.
Illness is a job—repetitive, just busy work, doesn’t care about your experience, someone is making some gross money off this.
I am so bored to have, after 20+ years of chronic illness, the same questions. I guess I must have thought that, whether I got better or worse, I’d have new thoughts. Something transcendent, a new diagnosis maybe, a new recognition. I have had new thoughts, but I’ve also always had the same old thoughts. Same symptom, same episode, same feeling, same question, again, again. Same anger, same shame. Do you think you have something interesting to say about it? Do you think you’re better than other patients because you’re a writer? Do you have a blog?
Illness’s questions are angry and ugly and boring and scared. It’s been suggested that healing would not be angry or ugly or boring or scared. Healing is calm and hard and enlightening and rewarding and smells like lavender. Illness is old and healing is new. Illness is always happening again. Healing or wellness are what can stop happening, which is very sad and annoying. Illness is boring and wellness doesn’t even have to be interesting because you don’t even have to experience it. No friction. You’re just there, present, in the fresh interesting world.
When I was a teenager I had anorexia nervosa and then I got better. I healed. It’s the only illness I’ve ever had that I’ve recovered from, other than like a cold. Everything else stepped on stage and stayed there, chronic. Beckett is the only writer. My neurological issues have never had a good name like Godot. There are names you can use but they don’t work that well, they don’t convey to a general audience what’s happening, how much it affects daily life, how much you’ve tried to fight it. But why did I think names could ever do that for anyone? Sometimes, like at a job, I want the name of my illness to say something like: I’m different than you. I have less time. I have a weird life. Could you answer your fucking email.
I’m not, like, correct. I’m sick.
I liked recovering from anorexia because, first, recovering let me do everything in my life I’ve done since I was 16, I survived and stopped thinking horrible thoughts all day and having to be in the hospital, and second, because to get better from anorexia you can be angry. Anger helps. Many people don’t get better and that is not their fault, I’m not saying they weren’t angry enough. Just that for me, because of good luck, anger was one tool that worked. One day, weighing like 88 pounds, feeling like shit and running circles around a track by yourself, you think, this is so fucking stupid, who is doing this to me, am I doing this to myself? When I was young and on sports teams where there are lots of eating disorders, I used to think that the one lucky paradoxical thing about this illness is that if you’re stubborn enough to get that sick—to lose that much weight that fast and give your entire life over to it—you might be, good news, stubborn enough to get better, which is even harder. Every single thought you had that made you good at being anorexic made you bad at not being anorexic and living. You have to reverse all your thoughts. One by one, day by day. This is very difficult. It’s quite hard. But if you were strong enough to make yourself follow those sick thoughts, all the way down into hell (this is what I thought then), you might also be strong enough to turn around and walk all the way out.
You don’t have to do it perfect. You can live with a few bad thoughts in the mix. You can live in the regular messy place that’s not hell.
That’s not what everyone would say about that illness. It’s not “right,” it’s just what it was like for me, at least then, I don’t know if I agree now. It’s different for everyone. When I was young somehow I understood that vital fact of difference already, even though that doesn’t seem like something young people would know, and I keep forgetting it since. If I had a friend in the grips of an eating disorder, I’d know to think: I’m here but I can only help so much. Everyone has to go through it, the getting better, on their own. What she has to do now may be common but it is very private. Her healing belongs to her, it takes her shape. I can’t offer her my healing to use, though I wish I could. I can just be here.
I would never, even to myself, have used the word journey. I fucking hate that word. I’m not trying to get somewhere. I’m trying to be here. I want to be here with you guys. I don’t want to be fucked up, alone on the track running toward hell, or shut up in the dark, not able to walk across my house, in the dark, in my bed, for days or years. I just want to be in the mix. Hi, I’m here. I’m real. I didn’t disappear. I’m still happening.
Yesterday I was retelling, to myself and others, an anecdote about my least favorite neurologist. He specialized in difficult mysterious neurological illnesses, though not the illnesses I turned out to have, which became an issue in our relationship. I think when you’re a young femme-looking woman/person with a mysterious worsening illness but lots of A-OK test results, there’s a general sense that maybe you suck. You’re weak and defeated and maybe you are exaggerating, maybe you don’t want to try, maybe you can’t handle the world. In fact you are stubborn and sad and alive and very very angry. You try not to seem angry and are so successful that, to your face, while he types, the neurologist says, I’m going to describe you as blandly cheerful, is that all right? Anyway sometimes when a doctor’s treatment plan isn’t going well, it’s not working, they step back and reflect with you. This moment can be beautiful or ugly. This time this neurologist hastened to reassure me that even though we couldn’t figure out what was going on, and that’s frustrating, he believed I was sick, this was real, and he would keep trying. That sounds nice but wait. He noted that he had about five patients like me, who were very sick but he just couldn’t get to the bottom of it. One of them, he said, was a cop. He was a big tough guy, the neurologist said, before all this happened. This was obviously meant in contrast to a little sick girly wimp like me—like, we all know he’s not making it up, he’s trying hard enough. (And why is this fucked moralizing view of illness so hard to kill?) I wanted to say to him (I was very angry): I know I’m not making this up. This is my life. I don’t need to see a cop with my problem to know my problem is real.
But—and this is what makes me angriest—that’s not true. I needed that cop. I wanted my illness to be recognized and named and seen and respected like it would be if that sad cop had it. I wanted people to see me like they saw him, to say to me whatever they said to him, to help me like they’d help him. (I’m sure I’m pathetically exaggerating how well things would actually go for him, masculinity being more trap than shield.) Why did I believe in this sad cop more than I believed in myself? That’s so fucking stupid. Who did that to me? Am I doing this to myself? What would feel like healing? I guess these remain, about illness, my biggest questions.
Remaining questions
"You don’t have to do it perfect. You can live with a few bad thoughts in the mix. You can live in the regular messy place that’s not hell."
"I just want to be in the mix. Hi, I’m here. I’m real. I didn’t disappear. I’m still happening."
🔥🔥🔥🔥🔥🔥🔥
♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️