September 28, 2008
When I began to write about epilepsy, I had a terrible struggle within myself. I wanted to do a good job and I wanted to bring us all closer together as a community, but I also wanted to try to get past my own self-hating
as an epileptic. I know I am not alone in this, that there are many of us out there who hate the epileptic parts of ourselves.
I hate the pity, I hate the seizing, I hate taking the drugs. I hate the feeling that at any moment I may lose control and make a spectacle of myself or that I will wake up with strangers staring down at me. I hate the whole nightmarish quality of epilepsy and though it seems terrible to say, I don't want to see someone else's seizure, either.
I hate the superstition the surrounds us. I hate the ignorant doctors who know less about my condition than I do and I hate feeling that each time I seize it might be my last time.
I think the quality of an "unknown" end to my life disturbs me the most.
And, the notion that I am some kind of untouchable in society has always bothered me. That has been one impetus for writing my blog, certainly. Because we are neither untouchable, nor contagious to others.
I hate the depression, the clumsiness, the unsteadiness that both the seizure activity brings and the drugs to treat the seizures bring. I am tired of breaking things, crashing into things, etc.
I just had a seizure the other night and so if I sound a little depressive while I write this it is probably because I am... Don't I just hate that too! I mean really!
I can't drive, I don't swim, won't skydive... How much more of a drip could I be???
I lived through the '60's and didn't do drugs, never explored hallucinogenics, didn't get high. Had enough of my own experiences not to want to induce more of them, I guess.
I am bright, capable, and a fairly good writer. This satisfies me. And, I am a grad student, which makes me really happy... But I hate my epilepsy because it makes my brain inconsistent and unreliable.
Will I get over it???
Tune in next week and find out, boys and girls!
September 7, 2008
What does the Future hold for us? What will it be like for folks with E.?
Do we dare dream of a future for ourselves or have we been taught, on some psychological level, to believe that there is no such thing for ones such as ourselves. I say, dare to dream forward!
I think finding meds that can work without disrupting our lives with impossible side-effects could be nice, and a goal for Big Pharma to strive toward.
But, how about simpler, smaller things: Indian writes about marriage and suggests a traditional means for achieving bliss in his piece. Since over half of all epileptics do not enjoy marriage or long-term relationships, it might be worth a shot to seek out Vedic help in this arena, so check out: 5 Marriage Compatibility Essentials.
It may work better than E-Harmony promises to...
Chaoticidealism writes a little off-topic, but a fascinating piece "The Einstein Fallacy" which addresses the notion of looking backwards, into the lives of the famous and trying to divine if they do or do not share a malady with which you are familiar, in this case autism.
She writes that lives of the famous or genius are not predictors of an individual's abilities or potentials and cannot be read as such.
If we extend this into the future, we cannot predict whether or not knowing the infirmities of others will have any value to our own lots in life.
I agree. I submit that we can only learn what they did and learn something about how they handled the stress of being disabled.
Bill Darling at Coral and Opal writes about the future in terms of the Vancouver Olympics. He points to an accessibility discrepancy at the Beijing Olympics at the Canada House location that threatened to make Vancouver Mayor Bill Sullivan's visit nearly impossible. He describes the Mayor as one of the most high profile wheel chair users in Canada, and talks about how officials had to scramble to make the Canada House accessible to him for his visit.
The upshot seems to be that accessibility is an implicit right that we all hope will be corrected in the future.
Wheeling Woman offers her Thoughts On Suicide ... She seems to be saying that while contemplating her own extinction, she is also contemplating her future. Astrid has written a touching piece on her own views of the Future: No More Future. In it, she dares to consider her own death. Her blog, Astrid's Journal, is everything a blog should be---it is beautifully written and breathtakingly personal, honest. I am wishing Astrid a long life and an uncommon Future and am in hopes she will be with us for many more years.
I suppose the thing that fascinates me with these posts, so far, is the notion that we don't seem to express long-range notions of a Future for ourselves. It isn't a criticism, just an observation.
Simon, writing from Ultra-Light Wheelchairs, writes to discuss Beauty and Women in Wheelchairs. Simon is already in the Future. He discusses fashion and female achievements and in support of his male accolades, I have juxtaposed a photo of Michelle Colvard, 2009 Ms. Wheelchair America. Beautiful, certainly!Ettina at AbnormanDiversity writes a fascinating bit about Demand Avoidance and new ways of deriving meaning and social improvement, not just for these autistic ones, but for other ones as well. If, in the Future, we were to take lessons from ourselves and insist the able-bodied word function in the same manner, we might improve life inside and out of the classroom for all of us. I liked this one particularly well...
Grace Young OT writes about a Brighter Future, and I have to say I can agree with both her premises: 1) the Graying of America and 2) the return of war veterans to civilian life. Read her piece and be uplifted by her logic and her elegance!
Along those lines is Dean Moyer who offers us information on the health of one's back. There are treatments that seems to offer relief, and Dean points out both the benefits and the risks. There is hope for the future for people suffering with lower back pain and radiculopathy. This is part four in the series on Sciatica and Epidural Injections and this time we examine the different risks and potential side effects associated with corticosteroid injections for the treatment of pinched nerves. The bottom line is the risks are small and the benefits make this procedure well worth considering.
The most perplexing entry was submitted by artist, Jordan Rhoat. He seeks our help and asks that we sign a petition on his behalf. I'd do it, if I were us.
Penny Richards has graciously passed along a piece by Jeff McNair--- a fascinating, though-provoking piece titled Beginning Traditions at Disabled Christianity. Read the entry. It asks question of folks of good will and fellowship. It wonders aloud about the place of disabled folks at church or within congregations. I really found the piece uplifting in an odd kind of way... and it does address the social Future, for sure.
Finally, Erin at School Psychologist Blog Files talks about the distinctions between two kinds of classifications for the disabled child in school. As children our the Future incarnate, her piece is worth a read...
When I think of Future, I consider a time when Epilepsy and persons with it, will live out loud, and not silent and apart from the rest of us. I know that community makes all of us stronger---look how we have all benefited when we have allowed ourselves to identify with the disabled community!
We have our distinct histories, needs and complaints--- but we share the need and the right to be fully enfranchised citizens of the nation to which we belong. Here is where our Future lies, I am sure, at the juncture of what is most personal and what is most public.
Thanks to all those who sent me submissions and any of you who come lately will also be dealt with...
We cannot know what it will bring us, but we can hope it will bring us punctuality... according to Ivan and others, Blogcarnival has not been working well, so Ivan and the following two were unable to make the deadline on time. So, we will still include them, eh?
Abigail Perry writes about something close to my heart and offers a solution: Overdrafting Whiners.
For those of us with deficits in money management, like me, her solutions and her care are evident. Banks should ask her for advice, but if they did they might lose money each quarter...
Thanks to everyone, late or not, for supporting my there and contributing to this my first carnival... Community does matter and I am happy to count myself among you all...