Wednesday, April 30, 2008
According to Orrin Devinsky and B. Vasquez in Behavioral Changes Associated with Epilepsy,
Sunday, April 27, 2008
Coming out as a person with E. has it's problems... In the first place, E. is invisible-in the second place, E. has been so highly stigmatized for so many centuries that coming out can present real problems for those of us to choose to do so. Finally, self-identification as "disabled" is often ignored or suspected by others, even from within the "disability community" to which many of us want to belong.
Back in the day I had a doctor who would not give me a Rx for my seizure control medication. said I had to prove I needed it. Hello. I went maybe two or three months with no problem and then one night had a nocturnal grandmal. Went to the doctor and opened my mouth displaying all the bite marks in the tongue and cheek and asked him could I please have my Rx now?? He said yes but he had to turn it in to the DMV. I politely told him my seizure was due to his neglect and refusal to give me my Rx and if he saw fit to turn it in to the DMV then be prepared to hire a driver for me while I could not drive. He decided giving me my Rx was all he needed to do. I told him I thought so. Yes you see doctors who talk like that but sign a release and tell him to get copies of the old tests and if they are too old then they can be repeated but if new enough it would not be necessary. If you are talking about blood levels I remember being tested every month for the first year I was on my medications. I got monthly blood tests. Kept me controlled after they got everything regulated perfectly for the next 18 years.
Saturday, April 26, 2008
Driving is something most of us take for granted. It’s something we can’t wait to do. Later, it’s just part of what we do.
Driving makes your life different.
When my daughter asked me how I felt about having a driver’s license, I really didn’t have to give it much thought---then I realized something: When you walk from place to place, you gauge everything in terms of strength and endurance---your own. You get only as much stuff as you can carry. You make every ounce count. You never even think of getting stuff that’s heavier than you can jerk and carry. You never get things bigger than you are.
The first time I went to the K-Mart, I got so excited about all the great things and the great prices, I bought a truckload.
After I checked out, and pushed my cart outside to the parking lot, I realized I didn’t have a car. I had walked there. I also realized I couldn’t carry home the things I just bought.
I was mortified to have to call a neighbor to come get me---and my stuff.
Stamina and endurance are re-evaluated once you have a vehicle. The bigger the car, the more powerful the engine, the more you feel enhanced. The more you can do. The more you can buy.
So, when my daughter asked me about driving, I was quick to say that now I could go back to the K-Mart---and buy things that were too heavy for me to carry home. And some things that were bigger than me, as well.
However, driving is a serious source of contention among epileptics. There are some who feel it is a privilege, others who feel it is a right. I have read in sociological studies, that driving is a normalizing act that makes us feel socially equal, if only by having the driving license---whether or not we use it behind the wheel.
Life without a license can be full of added obstacles, of the kind you might never consider. For example, ever been turned down as a job applicant because you had no driving license? I have. I have been told that taking public transportation or depending on a ride from someone else would make me unreliable in the work place.
Ever try boarding an airplane without a driving license? Forget state-issued identification, because there are still many people who question the validity of the state I.D.---but no one questions a driving license!
If you have E. and want to drive, there are circumstances under which it is perfectly legal for you to do so. These conditions are not the same, state to state, but many of us can drive, legally.
Driving is a key to many things in life, but most especially, it can be key to the way we see ourselves as individuated parts of our society's whole.
Friday, April 25, 2008
I borrowed the title for this post from Mike C. at Epilepsy and Life. Double-click the title to read his post there. He chronicles an experience in which he is asked to participate in a study.
Tuesday, April 15, 2008
I used to hear it alot: a kind of playground mind game that travelled with folks my age into adulthood. It goes something like this: which would you rather lose, your eyesight or your hearing?
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When I went searching for images of pain and suffering online, I was surprised to see that many of those images had to do with tear...
E. is a heavy label to live with. The culture surrounding it is one of silence and misdirection. It suggests that there is something about ...