Misfit, Anaïs Chartschenko

It gets better is a great slogan for battling depression unless you know it doesn’t. Sometimes it gets much, much worse.

That’s the trouble with reading studies that gather data about suicide and pain, or more precisely, suicide and Ehlers-Danlos syndromes. They don’t include an appendix; an okay-but-now-what section. They just have dismal facts about my future should I choose to become one of those statistics. Part of it isn’t up to me. I will get progressively worse pain and symptoms. The suicide part is up to me.

Four in the morning is a good time to think about suicide. Muscles spasm, weird electric strings sing along my spine branching out from my pelvis shooting down until they find the end of my right foot where they double back for more. More until I wonder how much time has passed. I’ll reach for my phone. Distraction. It’s been three minutes. What. The. Hell.

I try all the tricks. CBD. LDN. Heat. One pillow, two. A mountain of blankets. It doesn’t matter. Once the electrical storm hits, it is waves to be endured. How to dull it?

More experience. Thoughts. More electricity. Brain activity. I think about thoughts being formed. Where they go. Most of the time it isn’t that profound. It’s blurry. Underneath. I feel like I’m on drugs somehow. But I’m not. I’m on me. On pain.

So I try to feel the feeling. What is happening exactly? Puzzle it out, so I can describe it later. As if that will help. I know what we google in my doctor’s office on Pubmed doesn’t come close to describing… It’s all in numbers and statistics, and they don’t have it handled.

It says some fucked up shit if you read those studies. So sometimes, maybe, don’t.

You can swim in anxiety of becoming that number instead of the electrical storm. But that is a number that isn’t fixed. It isn’t even accurate as EDS is not diagnosed as it should be.

I can swim in the waves. I tell myself that. But three minutes becomes four minutes and I start thinking if it’s bad now, how is it going to be in five years, ten years? Twenty? What will become of me? I think about the years stretching on and on and how it is definitely going to get worse, and yes. I think about suicide.

I said I would tell my doctor if I was serious about it. I’m not serious now. I’m a flirt. I think about it as another distraction to numb out the fire of nerves lighting up. I think about it as a reward, like I could just stop it. But I won’t.

Morning comes, and I roll out of my suffering. Test each limb to see if it subluxed and if it did, I writhe around to knock it back in. I put on my braces, especially my thumb braces so I can drink my coffee. Another distraction. Some days are all distraction. Some days aren’t so bad.

I think about all the stuff we don’t know yet as a medical team. We’re in the gray realm of possibility. There is hope in possibility, as long as there is breath. If there is no breath, it’s over. That hope is snuffed out. So I try to live in possibility.

That gray scale, like the gray sky out my window. Like the gray brain fog that descends on a bad day where I can’t write, can’t do anything at all.

I don’t think it is depression, exactly, to know it gets worse. To know it deep in your bones. To feel it as another part goes wrong. Once it goes wrong it never goes right again. It’s another adjustment.

The studies don’t say what to do with that information. I see medical professionals on twitter talking about how chronic illness makes people suicidal but then… nothing about what comes next.

Here’s what Dr. Tom said. Just don’t.

I like it. Simple. To the point. We laughed. Gallows humor always works on me.

Just don’t do that.

Instead. I think about it like waves. They come up, they go down. I learn to adjust to each new pain level. I learn to adjust to my limits. I learn my new body. I learn to laugh at things that are horrible, because if I don’t laugh-

If I don’t laugh I can’t do this, and I have to do this because it is my life, and I only have one.

I’m an artist, for what that’s worth, so I shape my pain into books. Into song, into paintings. I shape it into places more comfortable to look at than the mess of my body. I deal with it externally.

Keep going because the other option is not existing, and that is coming soon enough as it is.