I'm with Stupid

People are so funny.
I was at the Rehabilitation Institute this afternoon for a Peer Volunteer in-service meeting, and after we got done viewing the videos and worksheets Carrie, our volunteer coordinator, put together for us, she opened up the meeting to see what we'd been up to over the past months, in terms of how our visits were going, what was bugging us, etc.

I was going to bring up a new experience with hidden disabilities, and then, a fellow volunteer, "Mr. G," I'll call him, said that he thought there should be handicapped parking spots only for people in wheelchairs, because he "never sees anyone with a disability at Target."

Gasp. This from my own "community!"

Now maybe the meaning behind his statement is legitimate. Maybe he feels as if he can't find a spot and doesn't see many other people using wheelchairs to get around. I can understand that. But that does NOT mean that every "upright" citizen is a non-disabled individual. Just because some of us in the disabled community don't look it doesn't mean there aren't issues there.

I was so pissed. I don't ever park in those spots, realizing that someone else with a far greater disability than my vision problems or seizure-tasticness might need the spot, but the fact of the matter is that he was being just as discriminatory and ignorant as any of the people who prevented the ADA from becoming a reality decades ago. In that moment, he was one of the people who he had just berated moments ago.

I'm putting together a presentation to orient people to the idea of hidden disabilities and educate them on avoiding situations exactly like this one, so this whole discussion totally surprised me. We had been talking about the 18th anniversary of the Americans with Disabilities Act being signed into law on July 26, 1990, and how shocking it is that only for 18 years have the disabled been "given" their right to equality. And then there he sat, generalizing, in saying that my ability to get around without obvious distress meant I couldn't park in that spot, should I need to. I would never assume what a day in his chair is like, so how could he even make that sort of statement, about what a day inside another's eyes or ears or mental cognition could be?

I'm having a hard time putting this presentation together, mostly because I don't know where to begin in terms of disability education, I don't want to be redundant, and I also don't know who to target as an audience.

I was thinking it would be those people who are completely ignorant to the idea of any disability, but now I see that I'm going to have to include those who already know what discrimination is like. Having spent some time mulling it over this afternoon, now instead of still being entirely fired up over it (although a little peevey still, yes), I've come to the conclusion that no matter how far anyone struggling for equal rights has come, there are always more people to reach. Even within the front lines, as it turns out.

Mortality calling

You could set your clock to my seizures. If you needed a clock that went off with a buzz and a bang of misfiring electricity once or twice every six months, that is. I don't know what kind of clock that would be, or what use one would have for such an instrument, but with that sort of accuracy, you could, at least, be reminded of your own mortality. In the form of your half-birthday, I mean.

Seizure news

Seizures are symptoms of a brain problem. They happen because of sudden, abnormal electrical activity in the brain. When people think of seizures, they often think of convulsions in which a person's body shakes rapidly and uncontrollably. Not all seizures cause convulsions. There are many types of seizures and some have mild symptoms. Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity on both sides of the brain. - National Institute of Neurological Disorders and Stroke

It begins with my head.

Soft and warm and frayed, like an old electrical cord that’s been plugged in for too long, the sensation moves under my scalp like a magnetic liquid. It dances down into my face, fills the elastic fabric of tissueswith its activity and moves into my arms and torso. At some point it shows up in my eyes and causes flashbulbs of red and yellow to go off in the dead space where I no longer see. It’s actually still just buzzing in my brain, not sparking in the orbs of flesh capped with brown corneas, but because my eyes get weird during the seizure, it feels like there's something going on in my eyes, too. Running in rivulets of electrical currents along the scar tissue where parts of my brain were clipped out, the seizure happens because of misfiring neurons, internal communications gone awry along my optic nerve, damaged and dead.

Most seizures last just a few seconds, without much harm done to the body. But anything that goes on for longer than 5 minutes is considered a "medical emergency" and should be treated.

It took me almost two years and the concern of a friend to consider my random electric activity a "medical emergency," but once I finally admitted to myself that something else might be wrong with my brain, the presence of seizures in my life became even less of a medical concern than it had before.
I went through the testing, the ups and downs of chemical effects on my brain and body from new medications, and finally in January, my body and I reached an agreement about meds.

When I left the hospital after brain surgery nearly four years ago, I vowed to remain "drug-free," meaning no synthetic substances. I didn't want to ingest a pill (or pills) on a daily basis, and the thought of some external influence controlling or affecting my life was not in the plans. But then again, neither was brain bleed and stroke that had put me in the hospital in the first place, but seizure is common after this. So In January, having found a neurologist and a plan that fit into my twenty-something lifestyle, I hopped on the medication bandwagon again, and have been rolling with it since.
I'm lucky, in that my seizures are only "partial," meaning that I don't convulse, fall, etc. With more than 3 million seizure patients in the US alone, there are so many sterotypes of the "typical" seizure patient out there, and one of the best things about sharing this information with people for the first time is the look they give me when I explain that my little yellow pill controls my seizures. I don't like being on meds, but at least they work for me.

In the May issue of Molecular Pharmacology.
The World Bank report "Investing in Health" (1993) states that, in 1990 epilepsy accounted for nearly 1% of the world's disease burden. Epilepsy commonly affects young people in the most productive years of their lives, often leading to avoidable unemployment. - World Health Organization


Click here for information on finding a doctor who can help you or a loved one (or a not-so-loved one, I don't care), or Here, for my own doc.

Seizure-tastic

Before I started having seizures, I thought my life post-stroke would remain relatively normal, i.e., I would have the vision loss, the memory issues, the numb left side, but nothing more.
And then the seizures came.
For a while, my neurologist wasn't sure that's what they were. I was on meds, then off, until my last fuzzy episode, on the 8th, when I had another seizure while caucusing in Iowa.
It wasn't "bad," they never are. I don't spazz out and fall down or bite my tongue, or do much of anything, really. But I get weird lights going off in the dead space of my visual field (on the left side) and I get sort of spacey and blank. They're called partial seizures, because only one part-- the part that was cut and bled and scarred after the brain surgery-- of my brain goes haywire.
There are more than 2 million people who suffer from epilepsy, which is classified as a condition once the individual has had three or more seizures. I've had 5 now, due to my stroke three years ago, but in 70 percent of the cases, the cause is unknown.
I wouldn't say that I'm too thrilled by the upheaval of this additional medical ills membership ranking, but I knew it was possible. When I left the hospital in 2005, my neurologist told me that if I was going to get them, they'd probably start up at around the 2-3 year mark. Right on time, they began before I moved to Chicago, although I blamed the weird feeling of my first one on dehydration caused by drinking too much.
Alcohol, stress, periods, low blood sugar, poor nutrition-- all of these things can cause seizure activity, and I've found over the past year and a half that stress seems to by my trigger, although the Epilepsy Assoc. says there really are no set triggers to this disorder. If neurons want to backfire, or just fire randomly, as it were, they will, it seems.

So now, with a new vial of oblong yellow pills gracing my counter, I'm ready to jump back into the world of the medicated and see how this drug works out.
My last medication was called Keppra, and it made me crazy. Side effects of epilepsy drugs include nausea and sleepiness, but for me suicidal emptiness was all I felt. No sadness, no fear, just plain emptiness. There was a two hour window of crazy productivity for me in the afternoon, but it wasn't worth the pain of being so barren. I got off the drug as soon as I could.
The neurologist who provided the recent second opinion on my condition said that I'm one of 30 percent who feel that way with that drug. Well, good to know. Now if only modern medicine could figure out a cure for this chronic, socially stigmatized condition.
I don't know if these things are going to get worse or not-- that's what the meds are supposed to control-- but I do know that like the rest of the medical hi jinx in cahoots with my body, this is just one more thing to deal with, damn the torpedoes.
I'm not sure what the new pills will do, but the Trileptin is lying in wait, yellow salvation or sadness, I 'spose. For those who do actually suffer at the impulse of this disease, I'm in awe and appreciation of. I'm lucky to be complaining as I am of the way this is shaking up my life, which is to say, not too much. It gives me something to be thankful of, I guess, keeps me from getting complacent or once again taking the crazy things we call life and health for granted.