Nineteenth Nervous Breakdown

I don't know what go me on this thought process, but I'm thinking about my neurological issues that really did create the situation with {D}. It was the first breakdown that lead to me making the decisions I was making that would lead to the next breakdown which would lead to hopefully the final breakdown. The Rolling Stones wrote my damn song. 

My neurological condition is currently questionably diagnosed as “some rare form” of ALS. I’ve been diagnosed with MS by Johns Hopkins. The Cleveland Clinic says it’s not real and that I’m a hypochondriac. My current neurologist has no fucking idea. I guess I could go hit the trifecta and try Mayo, but honestly, I’ve given up on ever getting a real diagnosis.

What we do know: it’s progressive. I’ve been sick since 2009. Oh, to go back to those years when it was simply me dropping things, not being able to feel my feet, and my toes moving on their own. Then it progressed to gross motor movement. Dyskinesia is what the doctors call it—my body and muscles doing their own thing sometimes, completely out of my control. Unless you listen to Cleveland Clinic, but that doesn’t explain it happening in my sleep.

This evolved into dystonia, which is full-on contraction of muscles. My entire body locks up and I can’t move. I can’t speak because the muscles in my tongue are affected. My facial muscles go haywire and I end up with grotesque, distorted expressions—things you couldn’t possibly create on purpose.

The first time it happened, I was calmly hysterical. I was at work. I didn’t want to go to the hospital, so I pretended everything was fine, but inside I was terrified. For me, the hospital always means: stroke assessment, then MRI, possibly a spinal tap, then doctors wringing their hands not knowing what to do. Sometimes they keep me for observation—days, even a week—especially during the bloodlettings where they put a line in my jugular, take out my blood, strip the white cells, and replace it with synthetic. We did that three times for a week at a time at  one point, all day. I can’t even give blood anymore.

I don’t do the ER anymore.

I’ve been battling this illness—whatever we call it—for 15 years. I’m the only one who knows what it feels like. When my body froze, I knew that was going to be the end game. I’ve tracked it, watched it progress. I’ve seen at least 20 neurologists. They tell me it won’t kill me. Unfortunately, I know better. In the end I won’t be able to move or speak. My brain will still function, but I won’t be able to communicate or walk or type. I’ll just be stuck in a body that has been fucking with me for years.

I didn’t take that well. I still refuse to accept death like that. I went the sex, drugs, and rock and roll route after that trying to die like a rock star. That’s how I ended up in that situation with {D} that night.

I’m still not okay from that. Every time it surfaces, the terror starts all over again. The terror of a death like that. Slow. Painful. Isolated. It really is the worst possible nightmare.

I deserved a happy ending. I really did. I’ve been through so much—I deserved a good life. I deserved happiness. But I don’t get that. I get this.

I’ve stopped taking care of myself. Nutrition has boiled down to bare sustenance: mostly soda and fast food. I don’t get out of bed much. I don’t even brush my hair unless I’m leaving the apartment—and that only happens maybe once a week.

I guess that’s the experiment now—how little I can care for myself and still stay alive. So far, the results are bleak but conclusive: you don’t have to do much to keep a body breathing. But keeping a soul alive? That’s the part I’m losing.