I’ve mentioned before that there was a period in my life where I refused to take medication to treat my epilepsy. In fact, I refused to take any kind of drug whatsoever. I’ve hinted that there was a reason for that, and some of you may have picked up that the reason was very personal and painful for me to discuss.
I think that I’m ready to share that story.
Several years ago, my parents were going through a prolonged, bitter, difficult divorce, and it impacted me in a very big way. I felt reduced to nothing but a piece of property–something to “get custody of” or a prize to win and lord over the losing parent. As the oldest child, I was the confidant of both parents and my younger brother. I tried to be the peacemaker. I tried to enlist the help of adults close to my family. I tried to shield my brother from the worst of my parents’ fighting, and my own hurt.
In the midst of all of that, I was a teenager trying to figure out who she was, who she wanted to be, and what she wanted out of life.
Because I was dealing with a lot of grown-up issues, my friends didn’t know how to respond or deal with it, much less be there for me, so they backed off. The adults in my life were simply taking sides, and there wasn’t much (proper) attention paid to my brother and I. There was a lot of posturing, of course, as there is in any divorce proceeding where “minor children” are involved.
Civil Air Patrol was my only refuge. I kept my family problems carefully hidden there. I loved CAP, you see, and I didn’t want the one thing that I had that was solely mine, getting infected with my problems. It was the only place where I was happy. But after a couple of years, it wasn’t enough. I had a friend in CAP that I had confided in, and he saw where I was heading. He did his best–but a fifteen year old can only do so much.
I was depressed. I was lonely. I couldn’t be strong enough anymore for everyone: for my father, for my brother, for me, (at this point I was not speaking to my mother, or even seeing her.) and for everyone else that needed to vent. So I stopped being strong for myself.
And I started spiraling further and further into depression and misery. I kept it to myself–I’d only allow myself to be weak at night, in the privacy of my room, in the dark. I wanted to die. First I cut up my arm. Night after night, I’d cut and bleed, but I didn’t die. Next I tried to starve myself, bulimia-style, because I still couldn’t have anyone know that I was suffering. I had to stay strong for my family. I shed pounds. More boys started hitting on me. I snuck off to the bathroom at school to purge my lunch. I’d get up from the family dinner every night and headed straight for the bathroom. In my fog of depression, I thought I was being slick about it, but my younger brother knew, as I discovered years later.
At some point, I decided it wasn’t happening fast enough, so one night I took a bottle of acetaminophen–a hundred pills–with me to bed. I managed 43 before I got full from the water and drowsy, and I laid down on my bed. But I didn’t die. I woke up a few hours later and spewed more vomit than I thought a stomach could hold, and hurled it much farther than I thought possible, too. It covered two walls and my comforter. I was too weak to do much but take the comforter off the bed and lay down again.
A couple hours later, Dad came in to wake me for school. He thought I had a stomach virus, and no way was I going to disabuse him of the notion. He gathered up my comforter and wiped the walls and declared I wasn’t going to school that day. My existence for the next two days consisted solely of my vomiting in between long periods of unconsciousness. I was too weak to do much but pull myself along on my belly to the bathroom, hoping I could get there in time. When my brother got home from school that day, he brought me a grocery bag and hung it on my bed post, so I need only roll over to expel my stomach contents before passing out again. I’m fairly certain it was he who changed it for me while I slept.
The third day, Dad declared me well enough to go back to school. I couldn’t eat, and I was still very weak, but I wasn’t vomiting anymore, so I went. Eventually, I had to eat. There lay a dilemma. Was I going to purge? After those three days of hell, I had no interest in vomiting ever again. My throat was raw from all the stomach acid. My stomach churned at the memory of the sensation of vomiting. I couldn’t do it. There ended my bulimia.
Moreover, I couldn’t hear the sound of a pill bottle rattling without getting extremely nauseous. I’d feel sick if I even imagined the texture of a pill. There was no way I was ever going to be able to take pills ever again.
I stuck to it, too. It was years before I could hear the rattle of a shaken pill bottle and not feel sick. I still cannot take anything but capsules–I had taken pressed pills all those years ago, and if I took one now, it would not go down my throat without a hard fight. I have had terrible menstrual cramps, and I would deal with that pain because the alternative was too sickening to bear.
Then my epilepsy flared up. It was thought that I had had juvenile epilepsy–the type that you have as a child but you grow out of. I refused medication. As I’ve shared before, I got a lot of shit for it. But I didn’t budge. The sensory triggers were still too much. My physical reactions were still too much. I couldn’t. I wouldn’t. And it was my choice.
Well, it should have been, anyway.
I shared in a previous post, how that choice was taken away from me:
“My professors were outraged that I hadn’t told them while on a study abroad trip. So much so, in fact, that when I had one, they threatened to send me home if I didn’t take medication. I had very little choice. So I did. I took medication that had just been released in Europe, that hadn’t even been considered by the FDA in America, which I knew nothing about. When I forgot to bring the medication on a weekend trip, I was lectured, reduced to tears, forced to remain on the bus while the rest of my classmates toured a chateau, and forced to take a Xanax. I wouldn’t be allowed to join our group on our next stop, Auschwitz, if I didn’t take the Xanax. What choice did I have? None. So I did. I took a drug that I didn’t, and still don’t, even know the name of. I took a pill that I knew would do nothing for me because my professor thought it might, and that was all that mattered. My knowledge of my own disorder, my own body, didn’t matter.
When I got home from the trip, and that new drug ran out, I got on medication. Once I started, I couldn’t easily stop—my body adjusting to the lack of drugs would mean more partials and more seizures while the drug was purged from my body. I’ve been on medication ever since. It’s been a year and a half since my person was disregarded, my choice disrespected, and my agency taken from me. Everyone is happy I’m taking medication. They’re so pleased that I got a little keychain pillholder for emergencies. They’re satisfied that I’m being the Responsible Broken Body. Everyone is happy, but me.”
I was thousands of miles away from home. My professors dredged up this horrible experience, from one of the darkest periods of my life, to demean and belittle me for a choice they thought was trivial, though they saw my decision to conceal it from them as a great sin, a terrible betrayal. My right to silence, to privacy, to protect myself from triggers was nothing. They never asked. I might have told them. I liked and respected both of them. I might have told them, had they respected me. Had they only asked.
I had my reasons for refusing to take drugs. Damn good reasons. But the reasons don’t matter–the choice does. I’m sharing my story because it illuminates very nicely why “such a little thing,” according to the abled, is actually a big thing. A pill on a countertop, sitting by itself, isn’t a big deal. But put a PWD and an abled-bodied person with that pill, with the abled-bodied pushing the pill on us, and it becomes a big deal.
We have our reasons for the choices we make, and it is our place, not the able-bodied, to decide them. We know our bodies. We know our conditions. We know our past and the experiences that have influenced our choices.