Saturday, October 24, 2015

The Countdown To His Death - Aftermath

So on Wednesday October 21 2015 I awoke or the radio alarm clock did the awakening for me, but nonetheless, it was nonetheless Tom's 20562nd on the planet.

Now, of course, I have no reference point for the MS I carry, nothing and no one to see where that person is in the progression of the days.

I have met only one other person who is both bipolar and MSed.  She was a very troubled young lady who had just been released from jail.  The decisions she made were not the best, obviously.  She seemed to have her stuff together or as we BDers know, we think we do.  In the BD support group her attendance became sporadic, and then she disappeared.  The group ended last summer.  I do hope she is doing as well as she can.

So I'm in new territory, and more exhausted from trying to adjust to it.  My speech is slower. Balance is off just a little more.  There's pain right around both hips as I walk, which gives me about a two block stretch before I have to stop and lean against something.  And all the stuff I forget, which I'd be glad to list if I could remember what it was.

Excuse me.  It's time to walk into another room of the house and then ask myself what did I need from the room I was now in. Since I can't remember....

OK, that was a nice break. I couldn't remember why I was in the room, so I moved a book from a table to a pile of history tomes.

A study by the American Academy of Neurology(AAN) found that bipolar disorder occurs in 13 percent of people with MS and in less than 5 percent of people without MS. There are about 400,000 people in the USA who have MS (according to research at multiple  So if we do the math, then there 55,000 people out there who are bipolar and have MS as well.  You could put all 55000 of us in a football stadium, but we'd have to use walkers and scooters and chairs (oh, my) pack into elevators (and to save ourselves more trouble and complaining, its a domed stadium, so weather is not an issue).  But try and move us around.  We will but very slowly.  Careful with those hot dogs and soda (unless you are cutting down on sugar).  You know you will drop something.  Soda cans just slip out of my hands.  And then all that noise.  And did you see the line for the bathroom? Both sides? And then the team we sort of root for gets intercepted at ten yard line and the player runs all the way for the touchdown that wins the game for his team, not ours. General Depression sets in.  Throughout the stands you hear "This is all my fault.....I'm so sorry....Run into me with that scooter one more time, lady, and I'll - Ow! Hey!...Did I take my meds today?...Why am I here?..."

If you take the estimate of the AAN and divide it by the number of states in the US, you get 1100 BP/MS people per state, which wouldn't fill a minor league ball park. Yeah there's more MS in the northern areas than in the south.  So the 1100 number is slightly skewed, I admit.  Still, wouldn't it be nice to head for an empty ballpark (in the spring) and while we smell the green of the grass, and the sun warms us, we talk about life hacks that can help.

BP/MS folks, well, what can I say (or type)?  We are .00016% of the US population.  We've been given a gallant quest to survive and thrive best we can.  Now I have to make it on my own.  This is Tom's disease now.

And here I go...Whoops sorry didn't see that...or that....I said I was sorry..

14000+ visits. Thanks.

Monday, October 19, 2015

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.

Sunday, October 18, 2015

The Countdown To His Death Part III

Lou was on fire, flames on his trousers, his shirt melting into his skin.  He did what a lot of people do.  He ran. His co-workers ran as well, grabbed him and tossed him into the sand, rolled him like dough, and doused the flames. The ambulance was called, and Lou went to Ellis Hospital.

That's what they did

I do not know those guys' names, except Stanley, the Polish guy from Cohoes.  Lou would pick up three of his fellow workers on the ride from Lansingburgh, to Schenectady, and then home after their shift with a six pack of Schaefer beer along for the ride.  Lou would many times have two cans left, one for him, and one for his wife.  I'd be in bed (going to school and college), but could usually hear some conversations, even the arguments. A lot of arguing, or my mother would be in one her rants 

My father could face molten steel 5 nights a week, but he had few responses for his wife as she went on about how terrible her life was.  When the rants began from the kitchen, I'd pull up the covers up over my head and wait for them to stop.  

I never knew that families could enjoy each others company, and that it could be done without booze until two in morning every single Thanksgiving, Christmas, birthdays .  I have working class roots, as you can see, and the dysfunctionalism I was watching every day  was being repeated in a lot of houses all around me. And it started to sink in that this was not right. I had some friends who had the all American family, though maybe they hid their challenges better. Why couldn't we be like the Partridge Family, instead of All in the Family?

This question just became larger in 1976 when summer came. I had just completed my sophmore season at Siena, and spent most of my time, when not doing yard work, playing ball on a local field. When the game was done, I'd go back to my house, grab a cold drink, and read on the back porch. My dog would come out to join me. She was 11 years old and slowing down a bit. She'd scratch at my bedroom door late at night if she needed to go outside. Sometimes she made it, sometimes not, but she always (in her way) asked for assistance if she needed it. The stairs were harder for her to climb, even stepping up on to a storage box on the back porch for her favorite view to be able to look down on three yards (we lived on the second floor) and see where the cats and birds were. I was worried, and the time was coming for annual vacation to Cape Cod. The dog never went with us, a neighbor would spend time with her, make sure she had water and food. One of the happiest moments of each year for me was to pull up to our house and see my dog standing up in the window barking happily that we had come home.

But in 1976, she didn't want to do much. I was scared, really scared for her. So Iasked my mother, because she made the decisions, if we could A. Take Cookie (the dog) with us or B. I would stay home, be with her and help her get around. Decisions made – No and No. So my friend agreed to watch Cookie again.And we went to Cape Cod. My father couldn't remember how to get there. We had the same vacation every year, two weeks in Dennisport on the lower Cape. My mother could not stand giving Lou directions so I quietly guided him as well as I could, and we arrived at our bungalow. My sibling's families would join on us for a few days each.

Lou had his routine on the Cape from the first time we went. He'd get up early, drive to the local store, get the newspapers and some pastries, and everything would be ready when the rest of us toddled in to the kitchen. For a change of pace in '76, Lou would get up, drive to the local pastry shop, pick up the newspapers, and then be gone for an hour. He'd drive by the bungalow where we were living. We'd be in the front yard of the house waving at him. He'd wave back and keep driving. Eventually he'd pull in and say he was taking a tour. The rest of us would roll our hours and say nothing. Oddly, Lou was not very upset about Marge doing the driving home. She did a good job, though white knuckled on the Massachusetts Turnpike. Who wouldn't be?

We made the turn on to our street. Butterflies in my stomach. No one, human or animal, was in the window. I ran to her secret cool spot in the cellar, behind the washing machine, and she was there curled up, but the white spot of fur at the edge of her tail waved like a solitary sad pom-pom after the game was lost. Her kidneys were failing, fleas infested her. She had no spark. She died two days later at the vet. But before she left us (me), I rolled down the window in my sister's car as we drove to the vet, and Cookie stuck her head out and took in the smells, her tongue lolling out tasting life a sweet final time.

And then she was gone. And I cried.

Lou told me that he had cried after my sister and I took Cookie to the vet. I believed him. My mother dismissed it. “It was her time.”

And then Lou was “retired” by GE a few days later. I think, and I have no way to back this up, but whatever the Suits had him sign at the Hospital after the accident allowed them to “Retire” Lou and others. No party. No watch. Just leave. Oh, he got a GE pension and Social Security Disability and this allowed me to have a few dollars as a dependent in college. My mother would drop me off at Siena in the morning and Lou would pick me up in the afternoon. That was it.  That's the only thing he had to do.  He wasn't in a foundry, or a Freihofer Delivery Man or in the Pacific in WWII.  He'd walk from the back window to the front window, look out on the same scenes, until the news came on.

So we ignored the approaching storm. To our peril. And my Best Friend was gone.  I was alone.

Saturday, October 17, 2015

The Countdown To His Death, Part II

When the phone rang around 9:30 that night, I was probably reading for some college course, or playing a dice baseball game, or watching TV.  It was a Thursday night and, if I was watching anything on TV, it would probably have been Ellery Queen, a classic mystery show on NBC that starred Jim Hutton and David Wayne.....
Jim Hutton and David Wayne
Jim was Timothy Hutton's father (and if you don't know who Timothy Hutton is, just Google him) and David Wayne was the Mad Hatter in the Batman TV series in the 1960s.

So my mother (Marge) hung up the phone and called me to the kitchen.  My dog, seeing me heading to the kitchen, tagged along hoping someone will drop a cookie in her direction. Marge told me that the Men at GE (General Electric in Schenectady, NY) had called to say that there had been "an unfortunate incident"  in my father's building at the Schenectady plant.  He was taken to Ellis Hospital and would my mother come get him? Okay, let's look at the issues.

1. Neither of us know where Ellis Hospital is.
2. I do not have a driver's license (age 19) and would not get one for another year.  And what good did it do if I could legally drive? See number 1.
3.Marge calls my older brother who live about ten minutes away, but he was watching over his two little girls, and his wife was out.  I was placed as child care person so Marge and my brother went to find Ellis Hospital.
4. I'll just place one thought here.  As I was sitting in my brother's kitchen, the TV sound turned down, I wondered what was going on at the hospital, or would happen when we got Lou home.

Two hours of silence penetrated my brother's kitchen, the girls sleeping in their beds upstairs. Sometime in here my sister-in-law arrived and I gave her what updates I had, which was very little.  My brother arrived and drove me home.  We lived on the second floor so as I made the climb up the stairs, I may have wondered about the future or where my dog was.  Then I twisted the gold knob on our gleaming white apartment front door and walked into the hell that awaited me.

He was wrapped in bandages and gaused like half a mummy.  He had burns all over his body, and this man, who nowadays would have been helicoptered, lay upon his bed while his wife of 33 years rubbed salve on his wounds.This would be our job for the next twelve hours.  Put the salve on, keep him cool, let him rest.  My dog sat in her official spot in my parent's bedroom, sure at this point that no yummy would be coming, but she wanted to watch the Tall Things doing whatever they were doing   and sniffing the salve and seeing that the Alpha Male was hurt but we weren't licking the wounds

We all collapsed, my mother to the front room couch (she never slept in the bed except one night ever again), I to my bed, my dog moving between what had just become Lou's bedroom and my own
looking for a peaceful place to rest.  We could hear my father moaning at any movement.

We were awakened by the phone in the early morning.  The Suits from GE were calling to see how their, that is, where their patient was.  Marge told Mr.Suit, that Lou was right at home, thank you. The Suit was miffed and said Lou should never have been released from the hospital. The Company would send a limo to bring Lou back to Ellis Hospital.

Here I've got to say that this was one of my mother's best moments.  She told the Suit "No. No you will not do that.  Ellis doesn't seem to know what they're doing.  Leonard Hospital is where he is going so I can keep an eye on him."

And that is what happened.  We packed Lou up and sent him back to the Hospital, just one with a different name.

And it was from here that the skin grafts began, the recovery slow ascended, and on one mysterious day, the Suits fell upon Lou when there was none of the rest of us around, early morning, and had Lou sign papers and then more papers.  To this day we have no idea what he signed.  The medical bills were paid, and Lou still got his check every week.  He worked through the pain and did go back to work. Tough guy from Troy.

But that was the first sign that things were changing.  Here's what we (or I ) think happened. My father was a foundry worker, the man who poured the molten steel into a mold fashioned in the sand below all the foundry guys shoes in an open door factory.  The molds were made in the form of the exterior of a turbine, which powered all kinds of things from trains to mega buildings.  He took me there once to where his foundry was, and showed me around.  I saw a lot of sand (silicate) and large dark machines that shadowed the floor into dark pools of night.  

He took me to his corner and told me how the molten steel was transported by a set of cranes from the melting area to the pour area and into the turbine molding area where the liquid metal would slide down into the sand supported mold.  It was Lou's and his partner's job to make sure everything went right, guiding the mega bucket of steel to its proper positions, watch the pour, and then adjust and cool down the metal so that it could take the proper form.  This is hard, grueling work, and Lou was good at it.  GE knew this too. That's why they sent the limo (and covered their ass).

For any of my Troy NY area readers, Lou would moonlight at Wheeler Brothers Foundry during layoffs and strikes.  They knew he was good as well.

What did I think of all this GE crap? I was bored by it.  Our tour was empty buildings and sand, and I could not wait to get out of there. Remember please I was a teenager in the early 1970s.  And I did say and do stupid things.


Since I am not using Word for this, Bill Gates' minions will not allow me to draw graphics in writing I am using.  Now that that's over.... The picture shows what we think happened.  Lou was in the wrong place at the wrong time.  He should be standing with his buddies in the open space area, but that night, for whatever reason, he was against the wall.  And the steel was poured, and there was a bubble of air that rose to the surface of the molten brew and popped.  Right on my father, and he began burning.

 Next time 1976.  And the long goodbye begins.

Monday, October 12, 2015

The Countdown to His Death. Part 1

This past weekend included my 59th birthday.  It consisted a nice dinner with my dear wife and her sister on Friday. a trip to Broadway to see "Allegiance", and then an amazing lunch at Foley's, the baseball pub Mecca on West 33rd Street, including a wonderful chat with the owner of the pub, who is well known as a baseball fan and collector.  We shared stories of the New York (baseball) Giants, and favorite books about the long gone team.  Then Sunday I soloed to the Ulysses S. Grant Cottage up in the Adirondacks (the smaller version - if you know upstate New York and the Northway used to travel non-stop to Montreal, it's exit 16).

The colors on the trees were worth the trip, especially since I missed the turn to the Cottage.  But I finally found the correct entrance and then I arrived, of course, too late to see much.  I did hear, however, as I reached the cottage (panting) the song Ashokan Farewell (known from the PBS series The Civil War) and watched a Union soldier and his lady waltzing to the music.  Most folks had headed for their cars, but I strolled warm yet cool weather, looking over Civil War books and talking baseball with another history lover.  Following cruising the written history, I took the path to the expansive Lookout area....

The Path
Looking North
Looking South

General Grant asked to see this view shortly before he died, and he got the chance.  I'm fairly sure that when he looked south, he did not see the Target distribution center, though he did know about targets.

So I sat on a bench that can barely be seen in the Looking North picture, opened my notebook, and wrote two lines.  Book 2 begun.  Felt great.  Birthday good.

But I told you that to tell you about  this....