Take Medication, Or Else.

Last night I discovered a woman of my acquaintance had been arrested under a mental inquest warrant–someone close to her (we know who it is, but to preserve this woman’s privacy, I’m concealing certain details to prevent her from being identified from this post) had gone to the police and claimed she had a mental disorder and was not taking medication for it.

From what I know, this warrant is a means to force one’s relatives to get treatment for mental disorders. You’d suppose that this would require a lot of proof, both of the diagnosis, refusal of treatment, and a danger to someone, right? Apparently not. The woman I referenced above is completely able-bodied, and has not threatened or posed a danger to anyone–but that did not prevent Louisville Metro Police from sending two squad cars to this woman’s home, arresting her, and detaining her for several hours before discovering–whoops!–she had no mental disorder.

So, apparently the word of one person is enough to get someone locked up for presumably refusing to take medication. I received a text message today, the sender said:

“Still I could see it if they claimed she was psycho or dangerous, but _____? Please!”

I responded thusly:

“I can’t. Everyone has the right to choose to take medication or not. That right is meaningless if people who have conditions for which medications are available aren’t allowed to refuse.”

I cannot describe how angry it makes me to see such blatant evidence of disregard for the rights and humanity of those of us who are differently abled–and even those who are thought to be differently abled. To know that the entire time I refused medication, I was one phone call away from being arrested, thrown in jail, committed, and forced to take medication frightens and enrages me.

Unfortunately, I cannot find any information via Google–as in, the requirements to obtain a mental inquest warrant, what happens to the person the warrant was gotten against, or if it can be challenged. This information is something that I, and the PWD community in general, need to have. But ultimately, this is something that should. not. happen. No one has the right to force medication on another. Everyone has the right to refuse medication, to refuse treatment.

Advertisements

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.

A Question We Must Ask Ourselves

For years I refused to take medication. Now I do. I won’t go into the journey I took from not taking any medication whatsoever, for any reason, to taking medication for my epilepsy. That’s another post for another day.

I will say that it was a hard decision to make. It was a hard pill to swallow, both figuratively and literally.

All medication has side effects. No medication is a cure.

But the abled tend to forget that. We disabled should be dutiful broken bodies and take what is given to us.

On paper, or a computer screen, my side effects aren’t “bad.” There are many that are much worse than mine.

But.

But they’re still something that I wouldn’t have to deal with if I weren’t on medication. And these side effects are something I’m going to have to deal with as long as I’m on medication.

The side effects and risks are something we have to weigh against the benefits of the medication. Is it worth it? For me, is the constant dry mouth, the drowsiness, and the certainty of partials and seizures were I to suddenly stop taking the medication worth its benefit of guarding against potential partials and grand mals? Not to mention, the “side effect” of having to remember to take two doses of medication, the actual swallowing of the pills, and the injuries I’m sure to suffer from the said partials and grand mals (the ones I’d have if I were to go off of the meds for some reason).

Like I said, the labeled side effects of the medication aren’t as bad as many others are. The higher number of labeled side effects increases the burden of both the decision and the consequences of taking the medication.

Then you have the actual financial cost of the medication, and the trip to the pharmacy. Sounds like no big deal; if you’re able-bodied, have a car, and money isn’t an issue.

These are questions we must ask ourselves to decide: is it worth it?

I’ll say it again: drugs are not cures. We’re not considered “healed” if we take them. We not considered “normal” if we take them. The things that are taken away from us by society for our conditions are not given back once we take drugs. I’m still an epileptic regardless of whether I take drugs or not. My meds do not “fix” me, my brain, my “abnormal” brain waves.

I ask myself every time I wake in the middle of the night with a bone-dry mouth: is it worth it?

I ask myself every time, the many times a day I have to run to the bathroom for all the water I drink to keep my mouth moistened: is it worth it?

I ask myself every evening I calculate just how late to take my evening dose so I don’t dose off before I want to: is it worth it?

I ask myself every time my schedule messes up my dosage schedule and I have a series of partials: is it worth it?

I don’t know.

Tales of Epilepsy: Refusing Treatment

For a long time, I refused any kind of treatment for my epilepsy. For a period of my life, I hated any kind of drug, even aspirin or acetaminophen, and refused to take anything. And I got endless harassment for it. It was my decision. It was my body, and my choice whether or not to pump chemicals into it, and I chose not to. I knew well the consequences of my decision—I knew that it left me open to seizures, should the circumstances, and my body’s reactions to them, be the right combination, and I chose not to take medication anyway.

I was foolish, people said. I wasn’t taking care of myself. Didn’t I know all of the bad things that could happen to me if I had a seizure at the wrong moment? I was being immature, people said. I should take medication. I didn’t like drugs? Well, I should suck it up and take them anyway. I was being selfish. How dare I!

I quickly saw it wasn’t about me for these people. It was about them. They would worry about me going away to college with untreated epilepsy. I inflicted my epilepsy upon others. My body, my neurological disorder, my choice to reject medication, and my seizures were mine. I made my decision, and I had to live with it. I had to live with my epilepsy every day. Not them.

Every partial, every seizure was an opportunity for friends, family, EMTs, ER staff, and random strangers to lecture me on my choice, and to attempt to cajole me into taking medication. I was already struggling with the loss of control over my own body. I was struggling with memory loss. I struggled with the injuries I’d gotten from falling down stairs, knocking my head on the concrete, the soreness from my body tensing up and then jerking about. I struggled with the indignity of pissing myself. I struggled with the humiliation of the lonely walk from the cab, the ambulance, to my bed, knowing I looked like hell, wasn’t quite fully aware yet, and very few actually cared enough about me and my well-being, to actually ensure I was alright. I struggled with the knowledge that I could not ever fulfill my dream of being an officer in the United States military because I had abnormal brain waves on an EEG, and these people were taking advantage of all of that to get me to do something I did not want to do, had chosen not to do, because they wanted me to do it, so I would not inconvenience them.

Sure, there were some good arguments. I could hurt someone else. My life would be much easier if I took medication. I—can’t actually think of anymore than that. But what no one considered is that I considered all of that already, and I still did not want medication. I had my reasons. They were even more intimate. Sometimes, I would get so frustrated I would blurt it out, in a desperate attempt to shut them up. Sometimes it worked. Sometimes I got, “So? Get over it already.”

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.

Are Drugs Worth It?

For years I refused to take medication. Now I do. I won’t go into the journey I took from not taking any medication whatsoever, for any reason, to taking medication for my epilepsy. That’s another post for another day.

I will say that it was a hard decision to make. It was a hard pill to swallow, both figuratively and literally.

All medication has side effects. No medication is a cure.

But the abled tend to forget that. We disabled should be dutiful broken bodies and take what is given to us.

On paper, or a computer screen, my side effects aren’t “bad.” There are many that are much worse than mine.

But.

But they’re still something that I wouldn’t have to deal with if I’m not on medication. And these side effects are something I’m going to have to deal with as long as I’m on medication.

The side effects and risks are something we have to weigh against the benefits of the medication. Is it worth it? For me, is the constant dry mouth, the drowsiness, and the certainty of partials and seizures were I to suddenly stop taking the medication worth its benefit of guarding against potential partials and grand mals? Not to mention, the “side effect” of having to remember to take two doses of medication, the actual swallowing of the pills, and the injuries I’m sure to suffer from the said partials and grand mals (the ones I’d have if I were to go off of the meds for some reason).

Like I said, the labeled side effects of the medication aren’t as bad as many others are. The higher number of labeled side effects increases the burden of both the decision and the consequences of taking the medication.

Then you have the actual financial cost of the medication, and the trip to the pharmacy. Sounds like no big deal; if you’re able-bodied, have a car, and money isn’t an issue.

These are questions we must ask ourselves to decide: is it worth it?

I’ll say it again: drugs are not cures. We’re not considered “healed” if we take them. We not considered “normal” if we take them. The things that our taken away from us by society for our conditions are not given back once we take drugs. I’m still an epileptic regardless of whether I take drugs or not. My meds do not “fix” me, my brain, my “abnormal” brain waves.

I ask myself every time I wake in the middle of the night with a bone-dry mouth: is it worth it?

I ask myself every time, the many times a day I have to run to the bathroom for all the water I drink to keep my mouth moistened: is it worth it?

I ask myself every evening I calculate just how late to take my evening dose so I don’t dose off before I want to: is it worth it?

I ask myself every time my schedule messes up my dosage schedule and I have a series of partials: is it worth it?

You tell me.