Shit TAB Say: Part Two

Yesterday, someone I know was angry at his significant other because she had let him sleep in. He felt like half the day was gone! All that time, wasted! He slept only two hours later than he would have liked, but two hours was too much for him.

Welcome to my world, I said.

Sleep is vital for our health–moreso, for differently abled people with conditions like, say, epilepsy. Sleep deprivation can cause of number of problems: lack of energy, lack of focus, slower reaction time, and the longer we go without sleep, the worse the effects become. For epileptics, the time we’re able to go without sleep is shortened, the effects come on much quicker. There is also an additional consequence of sleep deprivation for epileptics: seizures, partials and grand mals.

When I refrain from setting an alarm, it is pretty much guaranteed that I will sleep much later than I want. If I’ve incurred a sleep debt, alarms wouldn’t keep me from continuing to sleep, either. If my alarm goes off before my body is rested, I cannot get out of bed. I’m too exhausted to move.

That’s a lot of “time wasted.” That’s a lot of days “half gone.”

Much less time to do what I want and need to do.

Thoughtless comments.

It’s funny. TAB have much more time to consider the perspectives and experiences of others. And yet. It occurs to me that TAB are wasting a lot more time than I am.

Entitlement of the Able-Bodied

Today, my brother and I were talking about my recent post. His response to it was basically “Yeah, but some people need to know.”

Hmm.

Do they?

And who is they, exactly?

Do I have a legal obligation to share private medical information? No. Could it be a moral one? I don’t think so.

While others may be frightened or feel helpless while watching me actually be unconscious and helpless on the floor–I don’t believe I’m under a moral obligation to assuage an aspect of fear that others may feel if I have a seizure in their presence.

You see, no matter whether or not bystanders know I have epilepsy, I’m told it is incredibly scary to watch. The unknown is frightening, yes, but being helpless to prevent or stop a seizure is also frightening.

And, um, people? I’m the one that actually is helpless while having a seizure. You may feel helpless, but you are still conscious and have complete control over your body, yes?

Right. So forgive me if I’m not exactly sympathetic to your plight.

Despite that fact, I have on numerous occasions, been subjected to the indignation of others who felt they had a right to know. Not only that, but my failure to disclose my private medical information was a failing of mine, a betrayal of the highest order. And they. were. pissed.

I’ve been lectured, berated, abandoned while semi-conscious, told I’m no longer welcome in the home of a friend, threatened, and more.

That does not endear me to trust you with knowledge of my disability.

You are not entitled to anything. I am not morally, legally, or otherwise obligated to tell any one person a damn thing about me.

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: Internalized Ableism

Today, when my body finally dragged itself from the dregs of sleep, the first action it took was to grab my phone and check the time. Three-thirty, it said. Panic exploded across my mind. What?! I exclaimed to myself. How can I have slept so late? The day’s half-over! Then, the mantra began. Lazy. Lazy. Lazy. I’d completely forgotten that twelve hours previous, as I made ready for bed, I’d deliberately not set an alarm, so that my body could get as much rest as it needed. It was tired. I was tired. My epilepsy was taking advantage of it. Around midnight, I jerked. It was a partial seizure. It was a reminder that my epilepsy was still there, that my body was tired, and I’d forgotten in the midst of a long conversation with a friend to take my nightly dose. It had been a long week.

Lazy. Lazy. Lazy. I heard the mocking voices of everyone I knew in that mantra.

Why do I do this? I’m not supposed to sleep late, remember? I’m supposed to be a dutiful broken body and pretend like I’m not broken for the benefit of others–so they’ll not worry, so they can pretend I’m just like them.

I was tired, so I slept. But I never fully recover because as soon as I wake from that wonderful, restful sleep, I beat myself up for daring to take care of myself. It’s either beat myself up for it, or allow the rest of the world to do it for me, and fight against that, too.

Only in an ableist world is it acceptable to struggle to simply take care of my body’s needs. Only in a world where there is only one acceptable state of being for a body to be: “normal” is it considered “lazy” to take as much time as I need to ensure my body’s health.

Do I do it to myself? Sure. After years and years of dozens or hundreds of family, friends, acquaintances, teachers, employers, peers, and the random solicitor telling me it so, it’s difficult to forget. Every day is a battle.

The Deck of Ableist Cards

Last night at work, several co-workers and I were talking about the amount of sleep we get each night. I mentioned that I needed 9-10 hours of sleep a night, and I didn’t even get to finish my sentence before a co-worker burst out laughing. “Nine to ten hours?” he mocked. “How old are you? I’m forty years old, and I’m lucky if I get six! When I was your age, I was good to go on four!”

Blink.

Blink.

“I have epilepsy,” I said. “If I don’t get enough sleep, I’ll have a seizure.”

The wave of silence crashed over our group. Yon co-worker lost his jeering expression, but wasn’t in the least bit apologetic about mocking me.

In an ableist world, where neurological abnormalities and physical impairments are an oddity, more a butt of a collective joke rather than something that real people have, have to live with, and have to deal with, where we’re an inconvenience at best and leech on society at worst, this is what we have to deal with on a day-to-day basis.

Last night, I was slapped with the lazy card. Which card will it be today?

Why Repealing Healthcare Reform is a Bad Idea.

As the health care debate emerges again, I’d like to give the participants a unique perspective: I’m an epileptic woman that works full-time, has health insurance with a lot of strings attached, and (of course) pays taxes.

Here’s what my epilepsy means as far as healthcare: I have a monthly prescription that I have to take. Otherwise, seizures! Inflicting my disease upon others! Inconveniencing others! Every few months, a doctor’s visit, and depending on the doctor’s whim, perhaps an EEG at the nearest hospital the next week. If I’m unfortunate enough to have a seizure in public I have to deal with EMTs, perhaps an ambulance ride, the Emergency Room, and doctors and nurses rushing about to give me tests to determine what is wrong with me, all the while ignoring my feeble, half-conscious self informing them exactly what is “wrong” with me.

This gets expensive, folks, even with insurance. With or without it–it’s a nightmare.

I remember my college days, sprinkled with seizures, and the inevitable aftermath of my insurance company claiming I’m no longer covered, leading to the hospital sending me bills that were not mine to pay, then to collections and the night-and-day harassment of those lovely people. Then the calls to the insurance company, the feigned “oh my! We don’t know what happened! We’ll get you right back on the policy!” and the grasshopper chirps when they were asked to pay their share of my hospital visits.

My insurance paid four dollars of my monthly prescription.

After every doctor’s visit, I would inevitably get a call from the doctor’s office. “Ms. Wick, the insurance company says you’re not on the policy.” I would sigh, tell them that I am, that I will call the insurance company and that to please file again. Like my calls about the hospital bills, the insurance company would say, “Oh! My! I don’t know how that happened!” Unlike the hospital bills, they would actually pay their share. Does this make it better? No.

That insurance company? A national, well-known insurance company. Many of your probably have policies with them.

Post-college, I began my full-time job, and got a new policy with a different health care company. I hoped for better service, hell, service period, for the money that I gave them. I knew when I was filling out the paperwork, however, that it would not be much better. Right there on the paperwork, the insurance company declared its unwillingness to actually provide the service for which it was being paid for: pre-existing conditions would not be covered for a full year. After that? Who knows. My previous insurance company certainly did not declare that it would pull the crap with me that it did.

I haven’t yet used it, save to refill my prescription. They pay more than my previous insurance company did. But my doctor’s visits? The annual EEGs? The Emergency Room trips? It remains to be seen. I do not have much faith, however, when right in the paperwork they tell me that they will not pay for conditions that are the entirety of why I am enlisting their service, for an entire year.

Imagine paying a mortgage on a house for a full year before you are allowed to move in. Imagine paying tuition at a university for a full year before you are allowed to enroll in classes. These things are outrageous. They would not happen–because they are so clearly thieving. In what other industry would it be acceptable to pay for a service and then to not receive it? It is acceptable in the healthcare industry only because we have allowed it to be so. “Obamacare” is the first step to Americans actually getting service that they have paid for. It is setting a corrupt market right. A market that should not exist in the first place. Healthcare should not be a business. However, right now, in the “best country in the world,” it is. So we must fix it.

To properly manage my epilepsy, I must go one of two routes: The first, and the easiest is to go on medication. I need health insurance for this. I need a job for both of these. The second: to prevent seizures without medication, I must keep stress at the lowest level possible. Ten or eleven hours of sleep a night is a must. I can manage with nine, but ten would be ideal. Why? Stress and sleep deprivation are the two things that trigger my epilepsy. It’s hard work, and takes a lot of thought, balance, effort, and planning to achieve those things, and even so, I still may have a seizure every now and then. So far, I’ve been unsuccessful. Getting ten hours of sleep a night and still being able to accomplish things are impossible. Throw in a need to be low-stress, and it is a laughable endeavor.

I pay my taxes. I pay my insurance premiums. I deserve to get what I paid for. I’m not “an epileptic.” I’m a human being. I’m trying to earn my place in a devastated economy. I want no handouts. I want to work. The only job that the health care bill will “crush” is mine if it’s repealed. Take away my access to healthcare, you take away my ability to work.