Me and My MG
As the debate over health care reform rages through the nation and politicians posture over each other and resort to schoolyard antics, there are those of us who don’t find humor in the situation.
There are those of us to whom this may be considered a life-or-death issue.
I am they.
I don’t talk a lot about this, except to a few people close to me (and I’m sure they wish I didn’t), but in 2004 I was diagnosed with a disease called Myasthenia Gravis. And while June is MG Awareness Month, June is a rather “full” time for QSaltLake, so I tend to ignore an issue that affects my life.
And, while this column is about health care, it would probably be helpful for me to give you the Readers’ Digest version of what MG is. So here it goes, courtesy of myasthenia.org:
Myasthenia Gravis comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under-diagnosed and the prevalence may be higher.
What it means is my immune system is bored and a bit overactive, and it attacks the receptors on my muscles that accept the chemical signal from the brain that says, “move.” So, they don’t.
It feels, at times, like I’ve already run a marathon and now it’s time to walk. Or, I’ve already done 40 sets of pull-ups, and now it’s time to wash my hair. Sometimes it affects one or both of my eyes and I cannot focus. It can affect any muscle that you can clench at will, which is about everything but your heart.
Mostly, if I take pills developed to increase the amount of chemical the brain sends down to my muscles, I can get by just fine (except when it hits my eyes, for some reason).
The long and the short of it is — I cannot get health insurance like most people. Though the pills I take are only $60 a month, some people die of MG because it hits their lungs and, therefore, insurance companies won’t touch me with a 10-foot pole.
I currently have no options to get insured. I am self-employed, have a limited income, and contrary to popular belief, am not yet of retirement age.
I have talked with many people who are in the same boat. One pays nearly $1000 a month on group insurance and is just waiting to turn 65 so he can get onto Medicare.
Others, like me, simply cannot get insured and ignore chronic illnesses since they cannot afford the ongoing care. A young friend waited too long to go to the emergency room to care for an infected tooth and died at the age of 24.
He died of a tooth infection.
Another friend died when he ignored an illness for lack of insurance as well — Eric Tierney. It turns out he had Hepatitis.
He was 26.
So, when I hear people say they are against a public option for health care, they are telling me, my 64-year-old friend and, if they were alive, my 24- and 26-year-old friends that we don’t matter. As long as they are covered, everything is fine.
Whatever happened to compassion? Where is this country’s supposed “Christian values?”
“Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”
We are in this economic mess because of greed. Greed bred corruption. Since when are greed, corruption and schoolyard antics the American dream?
So, forgive me if I take it personally when you say you are against Obama’s efforts to get everyone in our country insured because it may raise your premiums or cause you to make a change or two. You are saying, perhaps to my face, that my challenges don’t matter.
You lie. Q
I would like to get a hold of you Michael, I am Eric's sister and am trying to locate the cd that has his interview with Tori Amos that he did for his article in the September 2005 issue of The Salt Lake Metro. My email is email@example.com My parents have been trying to track this cd down for some time and I would love it if I could get a copy to give to both of them on Mother's Day. Also, thank you for keeping Eric's memory alive and continuing the fight! Much love and respect, Carey Tierney.
Sent a PDF of the issue to your email address. Please tell me if you do not get it, as it is a large file. Thanks, Carey.