Why I Didn’t Take Them: Epilepsy and Medication

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.

<trigger warning>

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.

You don’t.

Experiences of a Divorced Kid: the Spy

The period between when parents separate and they move on, which may or may not be when the divorce is finalized can be a tumultuous period for the kids. I remember feeling almost like a spy—you had one identity you put on for the parents, for the judge, for the relatives and family friends, for anyone who knows about the divorce. Then, you have who you really are—the feelings you feel but can’t express, the things you want to do or be but outside circumstances prevent them.

You feel alone. A soon-to-be Divorced Kid must be very careful about what he or she says to anyone. Because, the kid quickly learns, everyone has picked a side: your Mom’s, or your Dad’s. You don’t have a side all your own. You’re supposed to pick one, too. Maybe you did, initially, but then everything became so complicated and muddled, and you can’t distinguish truth from fiction anymore. You spend every spare moment of the day, and the minutes and hours at night before you can finally fall asleep trying to figure out truth from lie. Until you can figure that out, you can’t trust anyone. Everything is suspect.

That is a horrible feeling—not being able to trust your own parents. But you can’t let that show, see, because Mom and Dad have become like hound dogs sniffing out these things. If they find out you’re suspicious of them? You’ll be grilled for information, for dirt on the other parent, or else cajoled into admitting why you don’t trust them, and forced to listen to that parent’s virtues, and the follies of the other. If the judge or outsiders find that out, that’s even worse, because you fear social services being called, and their being called is just one step from being taken away from your family—and that’s the worst fate of all. Being taken from everything you know and being put with strangers? And just think of how angry your parents would be at you.

All you want to do is talk to someone—but you quickly learn, that anything you say to anyone might make it back to one parent or the other. Family will listen a bit, then rail against the parent they oppose, then take that information to either the parent they side with, or directly to the judge on court day. Your teachers will do the same—tell a parent, or the judge, especially if you were ordered to go to a different school by the judge. Friends will either not understand, will distance themselves from you, or tell their parents, who will tell yours. You don’t want your feelings to become ammunition in the courtroom. You just want to be, to learn, to live, to love your parents and them you, unconditionally, without “the divorce” coming in between you.

If you’re lucky, you have That One Thing—yes, that thing that is yours, only yours. It’s safe from “the divorce,” whatever it is isn’t going to change or be taken away from you. It may be a sport, an organization, whatever—but no one in it knows about “the divorce” and you have no intention of telling them, either. It’s the one place you can be most of who you are, where you can relax, and put truth and lie, fighting, side-picking, and subterfuge away for a bit. You still can’t talk to someone about it, but here, it was your choice to do so. A powerful choice, because it’s one of the few you get to make in “the divorce.” It’s relieving to take that burden off your shoulders for a bit, but the dread at leaving, at getting into the car and it settling back on your shoulders is awful. There goes the identity-switch, too. Time to be a spy again.

A Message From a Divorced Kid.

Recently, I heard a story about a family. This family, you see, is on the verge of splitting. The couple is teetering on the edge of separation and divorce. Alcohol, separate sleeping arrangements, and fighting are part and parcel of their family life. Caught in the middle of this situation are two teenagers. Hearing this family’s story is eerily like my own. While I felt compassion for the couple, my thoughts throughout the telling of this story were with the teenagers.

Throughout divorce proceedings, you always hear about everyone’s concern for the kids. Frankly, I say bullshit and poppycock. It’s not about the kids. It’s about the parents, the property, the he said, she said, the money, parental rights, visitation rights, custody, child support, and a number of other things, but it’s not about the kids, no matter how much the adults involved pontificate about it.

The kids are stuck. They’re not adults. They have no rights. They have no choice. No choices, but to go along with whatever their parents decide. Or the judge. Or the lawyers. Or a therapist, or social services worker. Unlike the adults in this situation, they can’t just say “screw this,” drive off, and start anew. What should be their safe haven, their home, becomes little more than a prison.

No matter how much they speak out, rebel, or fight for their rights, their wants, their needs, someone else always knows better. “It’s what’s best for the child.” Let me tell you, as a divorced kid, that phrase makes me see red. The behavior of every adult involved with a divorce makes me see red.

In this story, and in mine, we weren’t children. We saw everything, no matter how many doors you closed in our faces. We heard everything, no matter how many ceilings you put in between us. We know what this means. We brace ourselves for the next week, the next day, the next minute, because we never know what’s coming next. We see the anger, the frustration, the hate, and feel afraid for what former lovers might do to the other in revenge.

We aren’t children. And our parents took advantage of it—using their children to vent frustration, to pass along messages, and to poison the mind of the child against the other parent. We know. We know the other didn’t throw a vase at you last night, so to speak, because we could hear it all. We know you didn’t refuse the screaming match, because we could hear you over our stereo, our TV, and the hands covering our ears.

When parents divorce, they don’t treat their children as people, with their own thoughts, feelings, desires, and humanity. We are a prize, the ultimate victory over the ex, mere possessions. Divorced parents everywhere pretend they are the one exception—you’re not. And us kids? We can see that, too.

This isn’t a tirade against divorce, let me make that clear. My family would have been a lot better off had my parents divorced a lot sooner.  From what I know, the same is true of the family I spoke of earlier. No, this is a tirade against the way divorce often plays out, and the way that children are treated. No matter how much adults think they’re shielding the children in the middle, they’re not. We are people, and people in the middle, at that. We see, we hear, we feel, and we hurt. We dream, we pursue, we want, and we need. Remember that.