Three of my brothers were featured in the Detroit channels this year.
Do you know what it is like seeing pictures of your siblings deceased on the TV screen during a cheezy outdated telethon?
Shitty pictures at that because decent pictures of them haven’t been taken since the early 80’s? They haven’t photographed well because their muscles in their face are lax and they take on a skeletal look about them.
Do you know what it is like to have your mother call you up and say, " The boys are going to be on the TV in a moment."
And have your husband totally blank out at her vernacular, reply,
“What boys?”
“The Dead Ones.”
Do you?
Do you know how much it fucking hurts to watch kids being trotted out to raise money for this goddamn disease? A disease that there is no fucking cure for? To have has-been talents hack their way through another painful hour?
It.Is.Nothing.When.You.Actually.Watch.A. Brother.Die. And.Another. Brother.Die. And Another.Brother.Die. And there is still one more to go. And THAT is nothing in comparison when I look in my mother’s eyes. It will rip your heart out of your chest.
It is Not a fast moving death. If people with MD were dogs, they would be put to sleep before it became bad. It would be more humane. But humans aren’t into humane, we are into holding on with both hands and being afraid to let go. It is sick, sick, sick.
The money you donate to MDA helps with wheel chairs, ramps, lifts, chairs that lift you up so you don’t have to try to lift yourself up and probably fall, braces, electric carts, electric wheelchairs, electric hospital beds.
If any of you out there have ever contributed to MDA, no matter how much, you helped buy my late brothers an electric cart, a wheel chair, a lifting chair and a hospital bed. If they were here, they would thank you. If you’ve ever bought one of those Shamrocks at
Jerry Lewis, for all his schtick and whatnot, brought this disease to the forefront of everyone’s collective minds. He was possibly one of the first celebrities to sponsor a cause. And not a popular trendy-cutesy cause like Save the Earth. But an ugly, terrible tragedy.A tragedy that is not self induced. You can’t go to an AA meeting to get better or have an operation to make it go away. YOu can’t out run it, delay it or move away from it. It is inside of you like a parasite that your gene gave you. The shittiest crap shoot of life.
There are alot of horrific genetic diseases out there, ones that make you wince and be thankful to whatever powers that be that you didn’t get THAT disease, but in all my readings, research and listening to medical speak, I have to say MD is possibly the worst, but I’ve had a front row seat in it, so I’m a little jaded.
It robs a person of their muscle control, eventually their bodies deceive them making breathing laborous, walking or even sitting up impossible. Then you are bedridden, exhausted and have a compromised immune system. Colds can be the death of you. Eventually, you suffocate to death. Or, your heart gives out. It’s a fifty fifty shot.
What I wish they would show, and they never will because people cannot handle the truth, is not the cute little kids who are tragically afflicted, but the ones that are essentially on their death beds making pleas to donate. The adults. Yeah, it is too painful to watch.
It’s the fucking story of my life and I can’t change the channel.
