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.

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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.

What Would a War on Date Rape Drugs Look Like?

Today I found this article. In it, the police speak about their stepping up on stopping crime during the holidays. But one snippet of the article jumped out at me:

“Operation Saturate has already seen drug dealer Leighton Foster, 21, jailed after he was caught with a £7,000 stash of the date rape drug GHB.”

When do we ever hear about police busting a date rape drug ring? Never.  So it was great to hear on that level—that there’s now that much less GHB on the street, and potentially, fewer women being assaulted.

But then, I asked myself, what would the American War on Drugs look like if it were a war on date rape drugs?

I pretended it wouldn’t be racist and classist like this one is. The more I thought about it, the better it sounded—why aren’t drugs that are slipped into nonconsenting women and men’s drinks, in order to commit a crime that is harmful to that non consenting person, given more of a priority? If it were, would it be possible that we would have a more constructive dialogue on rape and sexual assault? Might our dialogue be more focused on questioning, blaming, and prosecuting the one doing the raping rather than the victim? Might the reporting of rapes go up, since police would ostensibly take rape more seriously? Might we even be able to educate the masses on acquaintance rape?

Things might be a lot different.

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.