Saturday, August 15, 2009

Here is a message I received a couple of days ago from a from a postcard member, twistingoak

It was in response to a post I had made on the postcard forum, about how much personal information I am willing to reveal in my profile. I have a link to my blog there, but not much else.
One of the benefits of having a blog and an online hobby, is I get to read so many stories of people who have there own challenges to deal with . It makes me feel less "alone" in my struggles. I am more aware of how life isn't a made for t.v. fantasy were everyone is rich, beautiful, and their only problems are worrying about their relationships and what shoes they are buying next.

So thanks twistingoak for allowing me to post this:

"As a transgendered,asexual, atheist, who is currently disabled by medically intractable epilepsy, I entirely understand what its like for you

When my epilepsy came out of remission last year, requiring me to use government aid just to get my medicine (initially $3,000/month) I actually had people angered at me because I had PAID MY OWN way through two college degrees, earning straight A's in both, without any help at all from my family, instead of deciding to be a life long Mcdonalds employee when I graduated high school. No doubt these same people would have thought it amazing if I hadn't become disabled by epilepsy and got to enroll in the elite doctoral school I was planning on being in this year (best in the US for my major). And would be getting $30,000'/year stipend, and free year round apartment and meals - and 97% of the graduates of that program have a job that makes at least $75,000/year. Yet I get harassed because I chose this path when I had absolutely no reason at all to suspect that I'd ever be disabled, even if my epilepsy happened to return as an adult- and there was a less than .3% chance of that happening.

When I was seeking out my family history to see what was wrong with me last year, I discovered numerous people with MS (my new seizures were manifesting in ways I never experienced before, mainly needing to sleep 20 hours on a good day). It does anger me that relatives I always considered lazy because they didn't work, didn't do much, and always bought our presents at the dollar store, were all relatives with MS. I would have had a much different, and greater, opinion of them if the family hadn't hid the fact they were disabled from me. In particular my grandmother who never did anything more active than playing bingo which caused me to look at her with some disdain when I was younger because I could see all these opportunities that I thought she was choosing to stay away from. It wasn't until after she died that anyone was willing to tell me she was sick and couldn't do those things. She was also allergic to all of her medication options (in my case I'm allergic or had side effects necessitating immediate removal to all but one drug). And many people were always after her to eat healthy foods like "fruit" - I am currently on a special diet, that is much like the one she ate. I can drink all the rootbeer in a day I want, but I can't have more than 2 small strawberries in a week. If it isn't full of fat, it shouldn't be part of the food I eat"

1 comment:

Diane J Standiford said...

I have been told that *I* reveal too much, used to bug me but at 52--$%^&* ;em! Thanks for both of you sharing. Looking back at my relative's lives has always enriched mine.