Wednesday, September 30, 2009

Wasting away again in listserv ville

I fell today getting into the shower.

Sort of.

I didn't hit the ground or anything, just slipped and scrunched up my foot getting on to the shower chair. But I never was in any danger.

I am wondering now when the first time I fell in the shower was. I had no grab bars until I moved back to Virginia 10 years ago, but I suspect I fell at least a bit before then.

The day I left Winston-Salem for Virginia, I was headed to the car and Mom was in the parking lot but not next to me. And SPLAT! I fell right flat on the sidewalk. I forget why or what happened. All I remember is being unable to breath and trying to get my breath back.

I began using a wheelchair full time when we got to Virginia.

At my apartment in Falls Church, I used to put a man purse on my shoulder, and using a walker I would head down to the mailboxes to get my mail. I could do it unless someone walked by and said hi, which would startle me so bad I would fall and they would feel guilty.

I used my walker a bit at my condo in Herndon to walk to the back of the condo from the living room. It was a narrow hallway so it was hard to fall, but I found a way. I also used to stand to do my dishes in Herndon. This worked but left me one hand to do the dishes so it took forever. I also was able to stand mainly by locking my knees, which my therapists were not too happy about.

These days I stand mostly to transfer or in the swimming pool.I do miss it, but I think I have demonstrated a fairly strong degeneration in my condition over the years. And there is so much more if needed.

Why, you might ask, am I proving to you that my Friedreich's ataxia is getting worse? Simple, because I am a wimp.

I wrote a while back about how I missed the crazy flame wars on the INTERNAF, the ataxia listserv, that used to pop up over tiny things. Now, Pudding-heads can say whatever they want and no one cares. I quote: "... i said to myself this is no life [using a wheelchair] as i always had been a active sportsman and look at me now." He goes on to say how the disease is not degenerative and that anyone who just sits in a chair will have issues. He says he can walk now, slowly, after exercising two hours a day.  It is not perfect, he says, but "it's much better than wasting away in a wheelchair."

Oh my god, fuck you.

If I was brave, I'd post the preceding paragraph on the mailing list.

2 comments:

Anonymous said...

Wow -- things have calmed down. I remember the good old days when saying Merry Christmas was enough to ignite a flame war that went on for weeks. Well, some people will always be asses. One of the first people to drop off a meal for us during the great darkness also left a pamphlet about curing cancer through positive thinking and organic food.
See you in a about a week.
JTG

Matt said...

Someone else even referred to the guy later and praised his exercise routine.


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