Tuesday, May 8, 2012

Walking with Mom and Dad

Fourth entry.

Both of my parents have been gone for over a decade, my father for more than thirty years.  And yet they never leave me because I have their diseases.  My mother was bipolar.  My father had primary progressive MS.  We did not know that then.  We (or I) just knew there was something wrong with them, but, at least in my mother's case, she was always like that.  My father, on the other hand....

So time for some ancient history.  Toss your mind back to the Ford Administration, the 1975 World Series, and just a different planet.  My father worked in the foundry at General Electric in Schenectady, New York.  On October 9, 1975, my 19th birthday, there was an explosion at GE and my father, age 55,  was caught in it.  He spent time in the hospital, did some therapy, and went back to work and then was out of work and retired out the following year.  In the midst of all this were the shadows of suits who had my father sign papers that made it easy for them to dump him on the side of the road.

The day my father retired was also the day my dog died.  Childhood was definitely over.  I was sent into a three year career as an uninformed, uneducated and embittered caretaker of this poor man who faded before our eyes.  I lived in terror of his midnight rambles around the house, his shuffle step, his inability to understand what was going on around him.  He asked me once what was wrong with him, and I told him that I thought he had some kind of dementia.

Dad, I know now.  I'd say, "Lou, you've got Primary Progressive Multiple Sclerosis."

"What the hell is that?" he'd ask.

"It's a disorder of the central nervous system.  Your brain has been invaded."

"Invaded? by who? The Japanese again?"

"I don't know.  It's just there.  They are there.  They're going to make things miserable for you."

He'd nod.

"How long?"

"Completely up to you.  The disease will mess with your walking, making a leg sort of trail behind you, and your thinking will get a a little shaky, and you'll have bowel, bladder, and pain problems.  These can all be treated.  But there's no cure, and nothing else that can be done by the professionals except research.  Meantime, you've got to keep moving, exercising, and using that brain. Don't give it an inch."

He'd turn away and watch Little House on the Prairie.  The conversation ends and I walk away.

"Can you catch this?," he'd call.  "Or someone?"

"I don't know."  Fade out.

There seems to be a genetic disposition for this form of MS, which hits after the age of 40.  I've done some genealogy studies of the Martin family, and there's not a great track record for long lived Martin guys.  In fact my brother, presently 67, is the longest lived Martin so far.  I hope to continue the trend. Hope to.

So at the time of my father's developing MS, there was little to nothing known  about the disease, and so my father's maladies were or were not handled depending on what was going on.  My mother was working and I was going to Siena College, and we handled things the best we could, both having no idea what we were dealing with.

I graduated college in 1978, and instead of getting a job, ended up being my father's caregiver, from making sure he ate to cleaning up his messes when he missed the bathroom.  Lou entered the hospital in August 1979 and died two months later.  There's a lot more to this, but for right now, the thought was slammed into my head that I might be next.  I watched my brother age.  He made it through.

Uh-oh.  October 9 2011.  I turned 55. I did not need an explosion to know there was something wrong with my legs.  I was diagnosed PPMS.

My mother's family had a history of depression and bipolar disorder, and that has been passed along to yours truly, and I believe perhaps the next generation.  I decided early on that I was not interested in having children, more than anything to stop the spread of the disease my father, and possibly his father, had.  The shadow of bipolar is also too haunting for me.  Now both demons live in this body, and I must deal with them.  No cures, and both trigger depression.

No.  Nobody else.  The line is drawn here.

I will do what I need to do to stay focused, stay involved, and still in live in awe.  Drugs? sure. Therapy? fine.  Drop ten pounds? Sign me up.  Can't work? Fine.  I'm busier than I've been in years.

But this ends here with me.

And yet it doesn't.  This weekend my wife and I completed the MS Walk in Colonie.  We did one mile.  We did not have a group so did not get have an official picture taken.  Jackie and I were group enough, for there unseen were my parents who passed on this last challenge to us, and also those unseen angels that keep me moving, thinking, and loving life.  Yeah, we had quite a crowd.  Quite a crowd.

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