Reflection
It occured to me this morning just how odd life can be.
For years Labor Day Week-end meant one thing.
Telethon.
Now that word Telethon didn't stand for what you think.
It didn't really mean... Raise lots of money for Jerry's Kids.
Not to me atleast.
Sure,It meant, I'd work my butt off to raise that money to help the best way I could.
The difference is the motivation.
Telethon meant
I got to go to KAKE,
Stay up ALL Night,
See all of my best camp friends,
Relive that one week in the summer when EVERYTHING was perfect.
We'd talk about it the whole two months between camp & telethon.
Then we'd gather in the studio to watch camp clips,
or stories of our friends lives... I'd feel touched.
Now when I watch it as the Adult they pushed away.
I watch those same clips without those warm feelings of the previous camp.
Instead of warm and touched, I feel sick.
Not because I'm not a part of it but, because I can truly see threw it.
MDA started out as a good organization but, somewhere along the way...
The lost it.
Every plea was about a cure.
A cure would be great for the future but,
What about those of us who already live with it day to day?
MDA should remember those who have MD and buy
Wheelchairs, Ramps, Lifts and other assitive devices intead of focusing soley on Research.
That's only half of my whole rant...
The other can be summed up in one word.
If you know me you'll understand.
MDA needs to lose the PITY plea.
Sick...Sick...Sick
posted by Gina @ 6:27 PM
5 Comments
5 Comments:
I haven't watched the Telethon in years. I realized a long time ago that the focus was too one-sided. Even in high school I remember thinking, "A cure is great, but that will only help the kids born after the cure is found. What about the rest of us?"
Remember when MDA had their Person of the Year (or whatever it was called) award -- the award that recognized the achievements of people living every day with MD? I remember when I got it that I was so happy that they recognized that we didn't let the disease dictate our lives, that we weren't people to be pitied.
It's sad that they stopped doing that.
They irritate the crap outta me--The attitude that people with M.D. do not have enough to contribute to help at camp?! So lame . . people with M.D. that are willing to work at camp are just what those kids need to inspire them and show them just how successful they can be (teachers, scientists, etc. ) They lose, and the kids lose out on seeing the successful people that MDA doesn't want them to see
I watched about an hour of the telethon in my area yesterday. In that hour, I learned that my wheelchair is an extension of my body. Good to know. So glad I have a fifth limb.
I also saw no mention of adults whatsoever. In fact, all the focus on the "kids" leads the average viewer to believe that we never become adults. Grrr...
What really disgusts me is that we were used as Jerry's pawns for raising money for so many years because we were cute little kids. We didn't know any better. We were just there to hang out with our summer camp friends and be on TV. What kid doesn't want to do that? Had someone told me we were merely used to look cute and pitiful, maybe I wouldn't be so disgusted now.
One more thing: The telethon needs to get rid of Jerry altogether and get some better entertainment. The current lineup is too geriatric. A better spokesman, a more modern image and a better attiitude toward people living with MD would help MDA a lot.
Amen sisters!!!!
I guess I started participating with the Telethon when they were just starting the "pity, poor pathetic little kids who are going to die if we don't get the research."
So I can't really say that they have always done the Pity routine but only what I have witnessed.
But really were the goodwill ambassarders ever adults? Yes I know theres a seperate teenager and adult but they don't show the teenagers and the adults as much as the cute little bubbly ambassador.
When they demoted the volunteers to having to lift up to a certain weight, I thought that was the most lame statement.
Gina, Susan, Jennifer, Nick and anyone else diagnosed with some form of Muscular Dystrophy, you were the people I looked up to knowing that I actually had a future with my physical disorder.
Being diagnosed inapropriately and having not a rediagnosis, I didn't and don't know what my future would hold and seeing you ladies and gentlemen really brought me to having a big chance in doing anything I was willing to do.
And MDA was that strike that hard stab that made a jump to those in real life that not everyone is going to give us acceptance for who we are.
But thats contredicting. That's a hypocracy. Those who say we have open arms to welcome those with MDA boot out the adults who need the wheelchairs, the opportunities to educate youth with MD that they have a chance in civilization. Or not even make appointments with the adults at all.
As soon as camp was over, they didn't schedule appointments for me. Two years after I called to see what's up, but they accidentally had the wrong zip code? But it has been the same since I was 10 years old? And I haven't gotten an update appointment since. Its not like they would have any new information anyway but they made it at least a twice a year goal before.
I do understand and comprehend the difficulties now as an adult that there's something going on. And that MDA does not want to admit that people with MD can grow past the age of 21.
Until they know how to write with good grammar and understand what they are talking about in their local newsletters and actually realize I exist other than asking money from me and sending me Quest magazine and they have some amazing treatment for fact or a amazing cure that might actually help adults stop deteriating(and i'm not talking about just me), I might put my head up a little high to see whats going on.
Otherwise I'll just shake my head in frustration and use labor day to remember the friends and my grandfather I have lost of Neuromuscular disease.
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