I used to have a wooden sign that said in German: Biegen nicht brechen. Bend, not break. Like a tree in the wind, I bend but don’t break. Or that is my intention. I need to find that sign because I need to be reminded of that again.
When I was 14, few days shy of 15, I learned a big word. Over time, I mangled my memory of it and it isn’t the right word anymore. But it meant giant cell bone tumor. I learned other big words: ilium and encapsulated. I bent a lot that year. And the one that followed. I grew up a lot, too. I tried briefly to be a brat but didn’t like it that much. It just wasn’t my style.
When I was 25, I learned another set of big words: Ehlers-Danlos Syndrome. With it came hypermobility, sublux, and hyperelasticity. And I learned about morbidity and autosomal genetics.
I’ve learned about other things, other big words over the years. Some have been just breezes that ruffled a few leaves. Some have broken a few branches. One or two have been winds so strong, I was almost toppled.
I am 48 and have learned yet another big word. I lost some branches. I bent so low, some roots were exposed. The new words are epidural lipomatosis. Also known as a mass in the spinal column. In my case, it is at L4 (the 4th lumbar vertebrae) Theses fatty masses are very rare. Even more rare in females. They are usually caused by steroid use, obesity, or Cushing’s disease (which I do not have, thank God). I was told to live with the pain. That I had to lose 100lbs before the pain would go away. That until the spinal cord is compressed more and the symptoms much worse, there is no course of action other then treat the symptoms (which he was leaving up to my GP to handle). Of course, I was depressed as hell. A hundred fucking pounds? Was he nuts? That would put me at a weight less than what I was in college! The summer where all I could afford was bloney and bread. It wasn’t going to happen which meant I was stuck with yet another set of pain for the rest of my life.
I don’t think many people can understand the level of pain I have on a regular basis. And I hope no one ever does. But the idea of yet more added to it and I didn’t know if I had the strength any more. My back alone is like a Bingo card. C4-7 (compression, stenosis, impingement) , T2-4 (compression), L4-5. Bingo!
A family crisis pulled me out of my own funk this weekend and made me think outside my own head for a few days. Which gave me a chance to see the entire picture better. I broke the problem into chunks and will deal with it that way. It’s the only way I can, really. Else I’ll break.