Countdown to His Death - The Day

Today is October 19, 2015.  Louis Francis Martin died at Samaritan Hospital at 6:45 PM October 19, 1979.  I was not present.  My mother, brother and his wife, and my sister were by the side of the bed when Louis, the emaciated, toothless, babbling version, with his arms reaching out in the air above him, like he was trying to get the waitress's attention. Breathing slowed to a pace that allowed his soul to move. And then it did.

I was home, sitting in my room.  I had gone the day before, October 18 on a solo visit.  What I remember from that visit was taking one of Lou's cold hands in mine, and asked him if he knew me. He nodded. And then he said something I didn't get, and that was all.I kissed his forehead and walked out of the room.  The next time I saw him was in the casket at the funeral home.

But there were years in between to review.  Like 1977.  All I can remember about that year was that Jimmy Carter was inaugurated President and then the next day he began his downhill slide to doom, Reggie Jackson hit three home runs in a World Series game,and  my mother still worked in Latham.  I ended my junior year at Siena, and, after not going to Cape Cod ever again, began my senior year.  I had college friends by now and was able to go on dates and have fun, which had been rare.  Girls, okay just a few, thought I was funny and kinda cute.  This was a revelation.  But then I'd go home, and the situation would be the same.  We tiptoed around it, and except for the occasional blow up, all would be serene.  I'd play some baseball and hang out with a friend whose father was also ill. My friend and I agreed that we would inherit our father's diseases and still visit each other in our wheelchairs.  He's in his already.  Not my turn yet.

1978. The Red Sox lost to the Yankees in the playoff game at Fenway. I graduated from Siena and did not have a graduation party (maybe by my request, maybe).  I  have one picture of my parents standing in front of Siena Hall.  They are about three feet from each other and have all the emotion of the Royal Guardsman at Buckingham Palace.  I had a few pictures of me with friends, and went to dinner with a friend.  Lou stopped me on the way to meet my friend told me "I know we don't talk much, but I am proud of you." And I walked away, mumbling something about "too late now."

I was a 21 year old asshole.  And I would pay for that, as I should have.

From June 1978 until Lou was hospitalized for the last time, I was his full time caretaker.  Christmas 1978 brought a surprise snow storm and we were hitting the shovel and the snowblower for a while,  Lou was back in his element of supervising a crisis, but it did not stop me from slamming Lou with a fluff of snow.  Instead of a snowball returned toward me, I was given a look that would chilled my blood if I wasn't already freezing. We moved the snow away and went back in the warm house.  The idea was for us to go to my brother's home for Holiday dinner.  Lou by this time was no longer able to drive and that had been my duty to inform him of this. We got him into his car, passenger side, my mother in the back seat, yours truly driving (yes, I got my license) and we drove on to the snowy streets.  Until Lou opened the passenger door as the car was moving, and said "I 'm going to Barbara's (my sister's).  She's nice to me.

My mother lost it.  She screamed repeatedly "Get in this car! Get in this car!" Lou continued to shuffle along in the snow.  I pulled the car over, told my mother to stay in the car, and went after my father.  My mother joined me and we got him back in the car, with a promise that we would go to my sister's house right after visiting my brother's family.  Lou calmed down some once we got him back in the car and my locked the passenger door.  When we arrived at my brother's home family came out to help move Lou around and into the house.  There he saw familiar faces of grandchildren and friends long back.  We were able to have a decent day and even did get Lou to my sister's.  Home and we got my father into bed and then we collapsed.  1979 was going to be brutal.  My mother had that far away look in her eyes, she would start feeling depressed and begin the ranting again, this time I was the consumer, and would be for the next 22 years.

The year was brutal.  Lou would run away. We'd go find him usually talking to the bus mechanic about how the buses were running.  Time became distorted for him and he'd get up and want his breakfast at three in the morning, and if he didn't get his eggs and bacon, the dining room chairs would begin flying.  We could soothe him most times.  Most times.

Oh, yeah.  I can understand why some of you are asking where are the medical people?  Lou's doctor gave him some blood pills.  The Mental Health unit said they had no reason to think anything  difficult was going on, maybe a psychiatrist could provide some meds. For me, sure!  I'll take them as I wash Lou's crap off of his butt and clean him up in the shower.

Lou was finally hospitalized in August of 1979 and remained there until he died on October 19, 1979. So he has been gone for 36 years.  His death certificate says renal failure, arteriosclerosis, and pre-senile dementia. Lou was a smoker for many years, and working man meat and potatoes guy.  No big concern for us, that's all we knew.  But from his gut there must have resided many a bad news blood cell waiting for their chance.  But there was no heart attack, no stroke.  Just this fast decline.

Way earlier I said that my friend and I talked about how we might be when we hit 50.  As noted my friend is in a wheelchair and I'm not. Yet.

No, I do have what my father had, but it fits as Demylination Disorder, a sort of MS. My father would fall asleep at the kitchen, and then his muscles would jump. I do.  Constant brain fog. Yep.  Odd sleep habits. Gotcha.  Rawer emotions. True.  Pains and numbness of extremities.  Oh, yeah. And it showed up around age 55?  Like October 9 1975.  Lou Martin had just turned 55.

Lou Martin lived 21,561 days.  He went to war, came back and raised a family, liked a beer in the summer and his home grown tomatoes. I could have been a better son.  I am trying to be as good a person as he was.

As of this day I, Thomas Martin, have been on this planet for 21,560.  If dealing with my father's illness gave me any solace was that when my turn came, I'd pull more life out of days and be here. HERE.

I'll let you know Wednesday the 21st how it went.

I am living Stephen King's scariest dream

I just finished Stephen King's interview with Terry Gross on Fresh Air (yes, I am a snooty NPR listener on occasion).  Mr. King said that he is always being asked about childhood traumas that might have created within all those weird, wild, and wonderful nasty boys and girls that have filled thousands of pages of print, and thrilled millions of movie goers.  I've got bunches of his books on my shelves  some he was kind enough to autograph.  And I've seen most of the movies, and TV shows, and liked a few quite a bit.  The network version of The Stand was very close to the book, and had a good cast. So that's that.

What intrigued me most was when he was asked what frightened him now.  Mr. King said:

So here's the movie that scared me the most in the last 12 or 13 years: The movie opens with a woman in late middle age, sitting at a table and writing a story, and the story goes something like, 'Then the branches creaked in the ...' and she stops and she says to her husband, 'What are those things? I can't think of them. They're in the backyard and they're very tall and birds land on the branches.' And he says, 'Why, Iris, those are trees,' and she says, 'Yes, how silly of me,' and she writes the word and the movie starts. And that's Iris Murdoch and she's suffering the onset of Alzheimer's disease. That's the boogeyman in the closet now. ... I'm afraid of losing my mind."  (Fresh Air/May292013/NPR)

That movie Mr. King is referring to is Iris that debuted in 2001.  The film chronicled Ms. Murdoch life with her husband from their early days through Ms. Murdoch's battle with Alzheimer's disease.  When you make your living with words, the idea that gradually the words you use to make that living are going to be drained away from you like a swirling eddy can be terrifying, or should be. It's like telling a  uh, you know, a tree chopper downer guy person and he's got that axe, Monty Python and yeah, lumberjack, that's what it is. Lumberjack.  It's like telling a lumberjack to cut down a tree and by the way, here's your spoon. This just actually happened.  I could not remember what a guy who cuts down a tree is called (or lady who cuts down a tree).  Then it came.  It's like Stephen King not remembering what the Gunslinger's first name was (Roland).  I am using this time of my life to tell stories of the town where I was born, and other fun things.  I need words, and they are slipping away.  The lesions on my brain are slowly drilling down like government contractors searching for shale oil, not giving a frack what is in the way.  That may have been a political statement that snuck out, or a Battlestar Galactica reference. I'm glad I remember Battlestar Galactica (both versions).

The good thing about words is that they are plentiful, and are all over the place.  A person can remind you of a word, or its in a reference book, or you come across (and down) them on crossword puzzles.  This is a ritual that my wife and I have had for the last few years, since I got the MS diagnosis.  She starts the crossword puzzle, will ask me about spelling, and when she has done as much as she can, gives it to me and I must finish it, even if I have to look things up.  We finish them.  We even do a decent job on the Sunday crossword.  This is a prescription every one with an brain disease has to do.  Get your brain rewiring itself. It actually is built to communicate with your body and other beings. It does not matter if you are sitting depressed on a couch watching duck Dynasty, part or most of that grayish white stuff in your head is workingRead, write, listen to music.  It's your brain and you live in it.  All I can do is work it the best I can.  Stephen King and I live in words.

But sometimes a symbol can make things a bit difficult.  Like this sign:

The New York State Department of Transportation has decided, in its taxpayer serving wisdom, that rotaries or traffic circles or roundabouts or whatever they are called where you are is a lot better idea than stop signs or stoplights (red lights).  As my once dinky village of Malta is now home to one of the biggest computer chip plants ever with jobs for everyone with at least two doctorates or a cleaning position if you've just got a Bachelor's degree, New York is bending over backwards to keep these large corporations happy by installing these:

Your local traffic is interrupted while it is built, though these folks do a nice job of getting the construction work done and then get out of your way, but I do wish we were given more than a one page sheet of info, and let's face it, this is from the government and unless it says "Here's your refund!" or "Fork it over, Bucky" do you really read these things?  Nope.  You drive out from your home and get to the same intersection you've been at for 20 years, and suddenly you notice that cars are mad-dashedly trying to go where they always went for 20 years around this new brick and concrete minipark with trees, bushes and grass on it, and good luck to you joining the fray.  By the way, when we had a red light, we didn't have to pay someone to mow its lawn!

And there are the accidents caused by poor drivers, moronic ones who think that because people drive that way in the movies, they can to, and the totally oblivious to everything but me me me crowd.  Eventually folks learn how to go about  these latest intrusions.

Unless you are me.  Or my father.

Poor Lou.  Every year we'd go to Cape Cod in the summer for two weeks and if you've ever drive to the Cape, you know that at least in the 1960s and 70s, there were these monstrous rotaries in front of the two Bridges that gave you entrance to the sun and fun place you waited 50 other weeks to enjoy.  But we would work with my father and get him around the thing (eventually).  Sometimes we went around the rotary a few times, at both Bridges, but eventually we'd make it and then he had to drive straight over the bridge and not look down (afraid of heights).  Sometimes he would ask me if there was any way to drive to the Cape and not go over those bridges.  But I always said that unless our name was changed to Kennedy, there was little we could do about easier access.  My wife never understood why when she and I would drive in the later 1980s around the rotary near the Sandwich Bridge I'd say "Marge, get me outta here!" and grab the steering wheel so tight you could see my fingerprints embedded on it.  Just a shout out to Dad, dear.  This happened to before he got what I have.

Which brings us to Monday, Memorial Day 2013.  We were driving to the local Veteran's Cemetery to place flowers on my wife Jackie's parent's grave.  We've done this many times before.  I took a left on to the main Malta street (in fact pretty much our only street) called Dunning.  This road takes you down to Saratoga Lake and then off to other places.  So we drove on and I saw a rotary.  In fact, I saw this one, though not up in air:

Whatever part of my brain handles rotaries/roundabouts must have been fighting off a lesion because the rest of me had no clue how to operate in this.  I drove around and around, trying to figure where I was and where I had to go.  They could have charged for a carousel ride, I went around so many times.  Jackie is trying to handle these things as best she can, remaining calm and trying to help. Eventually I pulled over, looked, and saw where I had to go and made the turn and all was fine and dandy.  I told Jackie I rarely drive that road heading north and so it was new to me.  Maybe yes, maybe no.

Mr. King, I am losing words, but I try to find new ones.  I am losing skills, so I have to double my efforts and do what I can.  The more I do, the less chance I will face the dark times as soon as my father did.  For now, I'll be reading Mr. King's latest while I sit on the Dennisport Beach on Cape Cod, like my Dad did.  Just don't get near me on the rotary, OK?

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.