I passed my father last week, even though he had passed long ago.
We had, or actually I had, counted that the time of his injury at General Electric (10/9/75) as he beginning of his illness, and that one moment changed the family dynamic so much that those few of us who remain could be living in separate galaxies for all the communication there is. My father died on 10/19/79. That's 1461days.
I count my version of the disease from December 5, 2009 and here I am now four full years with this version of MS - Demylination Disorder - or whatever I want to call it. Since however many millions on the planet have this disease in some form or other, we should be free to call it whatever we want. The MS Society and their money toadies would rather keep things as they are, and their coffers full. Anyway, since my legs gave out at the end of my spectacular Michael Jackson tribute at my office's Holiday Party, its been 1500+ days.
Yay, me.
But how long did the disease(s) just sit in my system, or my father's, just waiting to strike? My neurologist said that a severe shock to the system can trigger the disease. I suppose that watching molten steel setting you on fire would count. I was about to write that I wondered what my father thought at night in his bed, but I never really did. I was too scared. I would never know when he would just walk around the house at three in the morning demanding to be fed. Even writing those words brings sadness. I am ashamed at some of what happened.
One night in1979 he was sitting at his assigned chair in the kitchen and was watching something on the television. He was wearing a flannel shirt, jeans that were now way too big, and slippers. His hair was long and disheveled. He smelled like lightly spoiled milk.
I came into the kitchen and grabbed a soda, ready to dash back to the other end of the house. I was 22, graduated from college,with no job, and blamed the guy sitting in the chair.
My father said he'd like to ask me a question. Great, I thought.
"What?", I said.
"What's wrong with me? Why am I like this?"
I had been doing some research at the Albany Medical Center in their library and some kind librarians showed me some books on neurology. I looked at symptoms and compared to what I saw every day. It moved me to Creutzfeld-Jakob disease. It seemed to fit the criteria, and when my father was finally hospitalized, that was on the diagnosis sheet (Yes, I peeked.) But I spared no pain when I told Lou Martin.
"You've got Creutzfeld-Jacob disease. You've got about six months."
And I only had to deal with him for six more months. I popped my soda can and left the kitchen.
I've left my mother out of the action here because she was at bingo most of the time. We were the three bears - one crazed and scared, one angry and scared, and the other one crazed and angry and scared. We lived in separate dens, each nursing wounds that would not heal. But the roaring would always find a way to start.
This is my penance. My parents are gone, and I carry both their burdens within me. I have grown compassionate about all those people, here and gone. May they find peace. All of them. Me too. You too
