Crossposted at Epileptiblog
Fourteen years ago, I woke up in the hospital. I was a senior in high school, and I'd just come home from a trip to audition for a drama scholarship. I'd felt awful during the entire trip. I'd had a bad cold, and I couldn't sleep at all. I'd finally come to my own home and I'd fallen asleep in my own bed. But I woke up in the dingy little hospital that served our county.
My mom told me I'd had a seizure. I was confused and tired and sore, and a little bit panicked. This had happened before, but it had been so long ago. I hadn't considered that it could happen again. When I was six, I'd woken up in that same hospital after a seizure, too. After tests and tests and tests (it seems like a lot in my memory, but I was just a little child), we found out I had a cyst on my brain. I'd had surgery. It was gone. I was fine. Or I was fine until my senior year of high school.
I was terrified in the following couple of weeks. I wondered if somehow the cyst had come back. I wondered if I would have to have surgery again. I wondered if I would die. I don't remember things very well (thank you, phenobarbital!). I remember my friends trying to cheer me up. I remember that I would sometimes start crying during class, and my best friend, with whom I had most of my classes, would take me out into the hall and sit with me until I felt ok. That's how I ended my senior year.
The doctors did eventually tell me that they'd discovered I had a bit of scar tissue where the cyst had been. It was probably causing my seizures. And they gave me meds. And when the meds didn't work, they gave me more meds. And if they continued not to work, they gave me different meds. Meds that made me sleepy, meds that made me sad, meds that made me gain weight, meds that made me lose weight, meds that made my hands shake, meds that made me forget words, meds that made me unable to concentrate. I had so many meds. For eight years, I tried so many different meds, and the doctors kept saying they'd find something that would work or a dosage that would work. And when I would get so sleepy I couldn't drag myself out of bed, they'd say, "Have some caffeine. Drink a diet coke." And when I was drinking two liters of diet coke a day but still couldn't keep my eyes open, they'd ask if I really wanted to get well.
Well. Of course. But things take their toll. Epilepsy tends to breed depression, and depression and epilepsy can be a pretty awful combo. The prevalence of suicidality in those with epilepsy is astounding (read this. It's worth it, and I'll wait here while you read). And I was not exceptional. As my seizures worsened and became more frequent, I got more and more depressed. The body that I'd once felt so confident in became my enemy. I never knew when it would attack. So I attacked it. I developed an eating disorder and I made a couple of suicide attempts. Every day for about five years I was angry and I was sad and I did not want to live.
In time I overcame the eating disorder with the help of an amazing therapist and because I worked damn hard. I had brain surgery two years in a row (2006 and 2007) to try and get rid of that pesky little clump of rebellious brain cells that was causing so much trouble, but neither time was successful. In 2007 I also got a VNS. I had high hopes for it, but every time it went off, I was in excruciating pain. I had the doctor turn it off less than a year later.
I'm not sure how the change happened. It was early in 2008. I was getting caught up in the excitement of the political season. Over the years I'd become much more liberal, but my community (I still lived about five miles from my parents) was extremely conservative. I felt out of place in my town, but I was finding people o line with whom I felt like I could connect. This hadn't happened in years. I'd cut myself off from other people for so long, and suddenly I was noticing people I understood and who understood me. It felt like a miracle.
I'd been religious all my life to this point. I went to church, read the Bible (while taking notes) cover to cover a few times, I prayed all the time. But things were feeling wrong. Every time I went to church, I only cried. I would go into the restroom and cry through the meeting and then go home. Just entering the building soon became a trigger for my eyes to fill with tears. I finally had to admit that I'd lost faith. I had to admit that I'd rather not believe in God than be angry at him/her/it.
And it helped. It was disruptive. Things boiled over in my family and with some of my friends for a bit, but they calmed down eventually. And that was the beginning. That's when I realized I could start removing things from my life if I found they were making me unhappy. I could remove them and I didn't have to feel guilty about it. With epilepsy, there isn't always a lot I can control. But I can control some things. Finally letting go of the things I couldn't control was epic. Finally taking control of (at least some of) the things I could was astounding. I wasn't helpless. I didn't realize that before. Figuring it out was so good.
Things are good. They aren't perfect, but I wouldn't know what to do with perfect. My apartment is messy, and some of my relationships have frayed ends that need a bit of repair. I probably have a really bad credit score. But I'm attending college again. I have an adorable messy apartment. I moved far away from my parents, but we still talk because moving helped our relationship immeasurably. I have wonderful friends. I have a special someone who makes me very, very happy. I have two wonderful and obnoxious cats. I am happy more often than I am sad, and when I am sad, it isn't that dragging, dreadful depression. I haven't felt suicidal in years. Everything is beautifully, wonderfully imperfect. Things aren't how I planned them, but they are so very much better.