Sunday, December 27, 2015

Time to Say Goodbye - Homeward Bound




In my final blog of the year, I have opted to demonstrate my lack of film experience in showing this version of our new home.  We'll be heading a few miles south of Malta down to Clifton Park, where Jackie had her teens and 20s, or if you will, her life pre-me.

We've lived in Malta since 1/1/89 or 5 Presidents back (Reagan). From here we both did 50 mile a day travel to Albany and back, me from 1989 - 2010, Jackie from 1989 - 2014.  I stopped because I was offered early retirement and took it, as MS had begun to creep its evil self into me.  I might have stayed for a bit longer at DSS but the promotion I had hoped for was given to another, because management thought I was leaving due to illness but never actually asked me, which, since that's what they thought, who am I do judge their decision making abilities? So I worked in my yard, read a lot of books, did some writing, traveled, and got sicker.  So maybe it all worked out.  Even with seeing my old staff at various functions, I had trouble remembering names of people I had known for years.

In the last few years, night driving has been somewhat hazardous (on a foggy night, I just see things [dogs, people] that just are wisps of vapor, except to my brain) and will limit activities, as my wife also has problems driving at night.  It's not that we're stranded up here, but neighbors are distant, even though some are only 50 feet away.  Our nieces and nephew are no longer local, and we have little contact with other family.  Reality.

We are on our own.  And as I'm not getting any better, and I do not want Jackie
stuck in a house that's 30+ years old itself and needing its own rehab from the vagaries of time. So the move to the Condo just makes sense.  (In deep truth I saw my mother flail against the tides of death and financial ruin. Her last years were just sad, with a few bright moments, but totally brutalized by the death of my sister in 1991. Her bipolar disorder didn't help.)  I have done what I can to make sure that my wife will be in good shape financially when I'm no longer available.  A home, people around her (good friend support) and a decent income.

Everything else is up to her.

But I ain't gone yet.  Still I see my yard fading in what I can do for upkeep.  I have energy for only two worlds named Jackie and the novel.

What will I miss? The quiet. Also, since we've both lived in two story homes when younger and here in Malta in a one story town home.  First time for both of us to have "Somebody Upstairs".  At the Bentley, its just a different quiet, with a lot more old people wheezing.  I will miss my yard, but for the last few years what I would have done by May I'm now trying to finish in October.  Nice times sitting on our deck on a warm day, not a hot one. The bunny who visited every day munching on clover and I guess not feeling very skittish around us.

I will not miss the chipmunks and squirrels or the lugging of stuff around the yard finding that I could lift two bricks, and only two, move them barely ten feet and then having to sit for a half hour until trying to move the same two bricks.  You get it.  I work out twice a week, and what tiny muscles have come from that are no help at all.  I get winded just walking to the mailbox.

This is bordering on whining so I'll get out of here. We are venturing to the Final Frontier, and I'd be honored to tell you about it.

Thanks for the 14,000+ visits.


Sunday, December 20, 2015

Holiday Songs for Bipolars and Multiple Sclerosis Battlers

Jingle Bells

(Chorus]
Bi-polar, bipolar
Spell it as you may
A disease
that will not please
when sadness fills your day.

Dragged me to the mall
"See how nice and bright?"
People are so sad
anxiety and fright
Oh take me home right now
To my bed I fly
So silence please
I am diseased
Watched QVC
All night!

[Chorus]

And so I took my pills
and maybe took a bath
and through my flat I walked
through old clothes, kicked a path
I think I'm unemployed
but I don't really care
I am just fine
How 'bout more wine?
Soon be manic, don't despair!

We Four Kinds (We Three Kings)

We four kinds of bad MS are
Spines and brains we love to leave scars
Keep on cryin', MRI trying
There's no cure so far...

[Chorus]

Oh-oh Prednisone, Copaxone too
Veripred please help me through
Sad and tired
caffeine wired
I can pee but just can't poo

We remiss and then may come back
Pro-gressive, well that they'll just  track
Donate money
Don't get funny
Just serve us and then hit the sack.

[Chorus]

Walking still - hey you're doing well
Pain and meds a personal hell
Five years stumbling
Down the steps tumbling
Watching my feet and legs swell

[Chorus]

Saturday, November 21, 2015

Every wedding...

Every wedding has the same cast members.  Since we did not have kids  my wife and I merely attend nieces' and nephew's nuptials along with the occasional co-worker's (or former co-workers as we are both retired), it makes me realize that this entertainment bonanza is precious place to see all humanity in a three to four hour time period.  Think about weddings you have been to.  Maybe not at all of them, but it seems like some of these stereotypes come through the door after two other people turn and go up the aisle.

Yes, I'm starting off easy.  The Bad Dancer (which would be the guy on the right).  You will see this guy on the floor early, especially if its open bar.  He knows none of the expected dances coming later (Electric Slide, Chicken Dance, or Jump On It) but will attempt all of them as he balances his bottle of beer. The man above seems to be holding a taser in his right hand, and is no doubt being allowed to "dance" for fear of bodily injury to the other guests.  By the night's end, our dancer will end up like this:


 And ladies, if you attend a wedding that is in a tent, some one will do this, right?

OK maybe not that bad (or good, depending on your view)

Personally, since any weddings I attend are just for friends  or more and more distant relatives. I'd prefer chaos.  Like the unexpected guest..


Of course, there's this required attendee.....



Please play Electric Slide, Macarena, I Will Always Love You (Dolly or Whitney), and Tears in
Heaven (Clapton's song about the death of his son).  Clapton's song is normally played while the meal is being served  "Would you pass the bread, if I saw you in Heaven?"

At the last wedding we went to the DJ was a known quantity in our area and I think he was the DJ at  Alexander Hamilton's wedding, having been recommended by George and Martha.  And I am sorry, but unless you are Tony Bennett,  once you qualify for Medicare you may want to think seriously about just introducing the wedding couple and the occasional dance move, and leave the singing to the proper people...
  Karaoke!

If the dancing guy in the first picture is still on his feet, he'll be here, not that he'll able to sing much, but he will end his night being sick on stage, or yelling at people in the room, or crying or just stand there until the awkwardness becomes overbearing and he is escorted out of the building and one of the groom's pals will take him home.  By that time, a number of ladies will have strutted on the stage, somebody from the wedding party is always required to participate the later the better. 

Then, with the cake having been brought out and the required smashing of cake into the bride and grooms respective faces (or not)........

Right after the cake has been dismembered by the wait staff, and coffee served , THE question then is asked. "You ready to go?" "Yeah, sure, whenever." The happy couple are already saying goodnight to the more elderly of the attendees, hugs and kisses, backslapping, "welcome to the club, fella! Oh, I forgot! She's got the club now Ha ha".  You wait like a sniper, trying to get a better view of your target who is now hugging her Aunt Bedelia for the third time, perhaps trying disentangle her veil from Bedelia's wig that she brings out for special occasions.  It's time to skulk around tables that contained the incredible talking beer machines, the arms folded on chest middle aged lady whose husband is still at the bar talking to some blonde chicky he'd while getting his fourth scotch of the day, and you wait until we get home, mister...  

At some point you can leave the drama behind and exchange farewells with the happy couple, wishing the best for them as you all play the game...heading to the car and estimating the length of time the happy couple will be that happy couple.  


This picture is from my own wedding in 1985.  There are more pictures someone around here.  Versions of the stereotypes noted above were there at my wedding, too.  It's just life. Now I look at this photo and note the two ladies on my left have since died (Mother, Sister).  We have this frozen moment. 

Life is like an open bar at a wedding.  When you arrive you leap right in and enjoy whats here and waiting for you, looking for fellow feasters, seeing chances for another and then another.  And boy what happened? The bartender seems more critical of your consumption, but it's all free, right?  Sooner or later you'll be feeling sorta strange and telling the groom's father about an unfortunate incident with the groom's sister and things go downhill from there. That's why the gods made cash bars.

You are invited to partake of this feast of life with your fellow human beings.  Try not to be a total jerk, m'kay?

Oh, wait!  the entertainment at a friends wedding was this....Really, it was!

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 sclerosis.net).  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....


Saturday, September 19, 2015

Captain Fatigue vs. Me Episode VII - MS Awakens

I'm sitting on my couch watching a baseball game - Red Sox at Toronto.  The Red Sox are winning, which is nice even though the Sox are sitting in the basement of the American League Eastern Division and won't make the playoffs again.

Oh,well.  Red Sox, lately, it's https://youtu.be/D7nb1bgicME

No. Wait.  They just rallied.  Now they're winning. Whoa, they're giving the lead back. Not again!  Oh, never mind.  They held on in the bottom of the ninth.  Whoa.

The above was not what this post, which I am sorely lacking in keeping, was about how you try and have a regular life, but Captain Fatigue always gets his bloviating way in his never ending attempt for bodily domination.

Like having a party.  This year my wife and I celebrated our 30th wedding anniversary and her 60th birthday, plus a noting that 5 years after the diagnosis of PPMS, I'm still here, still standing (though if no one is using that chair, could I borrow it? Thanks) still doing yard work (for maybe 20-25 minutes an hour then one rest and then.... Hey, there's a Star Trek rerun...I'll just watch a few----------------)  and writing ( though I must admit that what your eyes are moving along with here recognizing symbols for sounds which is transformed by your brain as words is all I've done this week).

We've never thrown a party and invited friends and family.  Aside from our wedding, and a small graduation party for my Master's Degree, rarely does everyone appear in the same city, not even mentioning the same room.

And it was a lovely room at a local winery.  This one:





So we provided the funds, they provided the wine and the space, and after going through three possible caterers in one afternoon, we had the place lined up, and guests invited.  The attendees included family, friends and (former) coworkers.  There begins the first line of trepidation of how the mix will go, who will talk to whom, if anyone would or will it be four groups in each corner, eating pizza on paper plates, and waiting for the polite time to leave.  My wife and I did our best to have the place decorated with balloons, Official Jackie and Tom Memorabilia, and small gifts, plus our scintillating personalities.

It would work out fine, I thought.  Or I thought I thought.  But Captain Fatigue had started his whispering crusade.  And he at the best weapon any MSer has - My Twelve Spoons.  If you're unfamiliar with it check here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Captain: Did you take your afternoon pills?

Me: Um, yes.

Captain: I heard an "Um" in there.  You're not sure. How about the red one, the long red one?"

Me: Yep, got the Amantadine. (I hope).

Captain:  Look, kid, I've only been living in your brain for five or six years now.  You know the ropes almost as well as me, but you'll never know it all.  So for this special occasion, on account of how much dough you blew on this and the stress of putting on yourself this shindig  (Glad I could be of help, hee, hee)I'm gonna, let's see, three hour party, spoons here, there, oh yeah, crisis there, that's a bit more.  OK, this show and dance is gonna cost you around 13 spoons. And the Amantadine will kick out around 7:30 PM.

Me: 13 spoons? I only get 12 a day. Where's the other one come from?

The Captain in his spiffy naval commander uniform guffawed quietly.

Captain:  Look kid, you belong to that Disney condo thing, right? I haven't had time to check where in the brain you're hiding that info now.  Darn Re-myelination. Anyway, you know if you want to do anything special at DisneyWorld, like the fancy schmancy Grand Floridian Hotel, you gotta use your points for the year, and then borrow points from next year.  Same with Spoons.  You want to do something special? You gotta use the spoons. Your cherce, kid. Or stay home and watch the ballgame.  You can make that early morning meeting you've got.  Me, I gotta get down to your digestive tract and pull some levers. I love lever pulling.  Enjoy, kid.  Oh by the way, you will be so exhausted you won't be able to sleep.  Ain't that weird? Nah, that's MS.

Captain Fatigue was right.  The party was great but I could feel the draining begin around 7:30 PM, and for the last hour just plopped in a chair and visited with folks even my own family and we got through the night with no casualties, and everyone went home happy and with a candle.  We packed up and headed home.

I have never been so tired in my life, so drained, but of course not sleepy at all (like tonight as I'm writing this on Sunday morning at 2:30 AM) and so I remained miserable until felt a Spoon or two click into place.  Low grade moving around Saturday.  Jackie was affected by our collective sigh and availed herself of some naps.  I was looking at a crossword puzzle that Jackie had half finished and I could barely read the clues. The puzzle is still on our coffee table.  I swear Captain Fatigue was jiggling every lever he could find - mass itching, toes won't work, and there seemed to be invisible bricks attached to my legs.  I have never in my life had a hangover. Even in my deepest depression, nothing like this.

But tomorrow, technically Monday September 21, is our actual 30th wedding anniversary. And what a long strange trip it has been. But I have my wondrous partner with me still and much to do, whether Captain Fatigue cares or not.

13,000 views? Wow, thanks for sharing the ride.  Coming Next - how to fall down the steps of the New York Public Library!

Wednesday, May 20, 2015

Home Part 2

The picture is gone now. That picture of yours truly holding up his 1967 Whipple School graduation pennant, thrilled to be wearing an actual suit and tie. We'd had a cookout at St. Marks  Church House at 116th and 3rd Avenue, hot dogs and juice, and then everybody went home, which took me all of about five minutes. My sister took the picture (Polaroid Swinger) and it was placed in my memory book until it, and a lot of other remnants from long ago was disposed of. In the picture attached, I'm standing as close as I can remember to where I stood 48 years ago. My wife Jackie and I had a chance to look around the yard of 614 1st Ave, on the Lansingburgh House Tour of May 16th. My old home has many tales of its own, and I was amazed to have a neighbor relate many of them to us, some versions of which may show up in a novel soon. I said to Jackie "See, I wasn't making it up!" This place was truly magic. The other picture shows the back door to 614. See those eagles? My father made them. See that rickety wood thingy? Not us. The house is for sale. My sister and I once agreed that when we were old we'd buy 614 and live out our days there. That won't happen. But it was a wonderful time then and an even better May 16th 2015. Thanks for reading.





#HAWMC Last One, I promise 4/28 - 5/1

I'm once again behind in the posting of my Health Activist Writer's Monthly Challenge entries, so to say I did it all, and so you need not waste much time here, I'll be as brief as possible.

April 28 - Use "health" as an acronym, and come up with words that represent your Health Activist journey.

Help
eat
all
leftover
tacos
here.

April 29- favorite health related products.  Cheeseburgers and chocolate shakes.  Actually, this is my brother's version, but how can I complain?  The guy just turned 70.  And very few to no Martin males make it to 60 (I'm not there yet) in about 130 years of family history.  So I'm off to McDonald's for a Quarter Pounder, chocolate shake, fries, and an apple pie. Get ready, 2036, I'm heading for 80!

Your genetics may very.

April 30 - I wish I would have known at the time of diagnosis.  That even though my brain is fogged, my body spasms on me, I drop at least one thing a day, saw family and friends disappear, life is a beautiful thing if we let it be.

May 1. End of project.  I had lunch with a dear friend from my college days, and we've seen the changes of time beat at us but we remain devoted to literature, writing, baseball and good wine. I was glad I just wrote that last line and am grateful for the chance.

Tuesday, April 28, 2015

HAWMC April 23 - April 29 Revenge of the Sith


This is a artist's conception (found at http://anmazol.deviantart.com/) of Darth Plagueis, the Master Sith to Darth Sidious, who was Master Sith to Anakin Skywalker/Darth Vader who, as far as I am aware, never got around to getting a student.  This is the problem with living forever.  Its easy to let things slide a bit.  Now according to Sith lore, and I can see why the Star Wars Universe is so popular (there's a reason for everything) you can have one master and one apprentice, so what happens is the Apprentice kills the Master, and then gets an Apprentice of his/her own, and it goes on until the hundreds of Sith not yet written about get their own books, and there are people who track this. Must be a neat job.

This concludes the April 23rd entry - write about anything.  In my case, I wrote about nothing.

-----------------------------------------------------------------------------------------------------------------------

April 24th Fitness Friday.  Twice a week, I'm at the physical therapy pool down the road.  One hour of exercise in a 90 plus degree pool. Simple things, keeping arms and legs moving, balance walking, and trying to stretch every muscle as much as I can.  Also it is good to see others facing their own challenges doing all they can to be functional.  Laughing it away.  Never let the problem get in your heart.

But here's a twist. I have a rotator cuff injury.
And I get to do physical therapy!  I always wanted to be a baseball pitcher.  And now at least I get to go through the rehab part.  Then I'll get to start a game soon, or sit in the bullpen as usual.
Kudos to the physical therapy people, there to help, and know far more about your body than you do.
*********************************************************************************
April 25 Wordle.  You may recognize it.  Neat little toy.  What if you could tumble in all your thoughts at the end of each day, and see what you thought about during your waking hours.  What do ISIS members think about?  Probably close to a Sith apprentice, just sitting on some of the sand they'd taken from another guy with not as many guns, waiting for a chance to kill again.  Maybe he thinks of the teachings of the Prophet.  Maybe not.  Or the people in Nepal. Baltimore? Justice or just to grab a new HDTV with the easy payment plan of nothing down and nothing to pay ever.

How much do we think about ourselves, as a person, a sufferer of ailments, lover of life, or despairer, hopeful or resigned to whatever, who cares or does not care, or pretend to care? OK. Lecture done.



*********************************************************************************
April 26.

If you can read this, you are better off then the billions of people who have died, can't see, or can't understand or read.  If you are reading this on a computer of some sort, you have a chance to search out secrets and find delights unavailable to many people for many years.  If you can go outside, go, even for a minute.  See who you share this planet with - even if it is that terrorist on the pile of sand. At least you know where you are.  Wait for night and look at the stars.  See what we are made of.

*********************************************************************************
April 27

Sometimes, when I'm heading out on errands, I'll park in the handicapped parking spot.  The disability chair is on my license plate.  I am eligible for it.  Really, I have the brain lesions on the MRI DVD.  But that doesn't stop people from watching and seeing how I get out of my car.  So sometimes I'll do a Homer:





And then I still get the eye.  Look, I'm not 85 here, though there are days...Once a elderly woman stopped on her way out of Dunkin Donuts and watched my wife and I get out of our car correctly parked in a handicap spot.  "So which one of you is sick? You don't look sick."  

I'm a peaceable guy, but sometimes Bruce Cockburn had it right - "if I had a rocket launcher....."

Wednesday, April 22, 2015

HAWMC - April 20 - 22 The Empire Strikes Back

I have a rotator cup injury, as if I was a big (or little or minor) leaguer or something.  But its as close as I'll get.  Fine.  But I get rehab, like a ballplayer (for physical injury, not the other kind of rehab).

Let's see... Travel April 20.

I would love to go to England or France, or even Russia.  But as close as I'm going to get is Disney World.  I want to take my wife to the Mall of America. Don't know about that.  I promised her a trip to Europe, but its going to be Disney World.  I get tired, exhausted, and having a tough time breathing  after just a short stroll (this may be medication issue) and that's not even great at Disney World.

The old line is familiarity breeds contempt, but I look at it as familiarity breeds content.  At Disney World I know where to go and what to do, so the basics are set. Busses (or the Monorail) do most of the traveling for us and we just get off and go where we want and do the same things each year, with a little variety in resorts we visit (such as Beach Club or The Floridian) and have all the wondrous foods.

The long trips are short ones now, day trips, bed and breakfasts, and back.  Know your limits.  If you are planning to do a lot on your trip, I'd rate the activities on a list of musts, maybes, and probably nots, and do the list.  If you get past the musts and are feeling decent try another but do not overdo it, and learn what overdoing for you.  The medical issues we face renown with one rule - "Slow down or we will slow you down."  Taking your time allows you to view the world.  Remember the Zen rule: Pay attention.  See it. Take it in.  Breathe it in, because (Next rule: Everything is changing) it might not be the same next time.  But take heart in that (next slide, please) everything's connected.

April 21 Reflection.

I admire folks who really can advocate for those who can't.  Working in poverty programs for near on 30 years, I've seen a lot, some good, but more bad.  Before that I took care, as well as I knew how, of my father, who had the same disease as me, so I got a preview of coming distractions.  If nothing else, you learn either total cynicism or compassion.  I know I go between the two, but find more hope in the latter.  Or maybe a compassionate cynic.  I don't expect much from humanity, so I can be pleasantly surprised when the better angels of our nature can win through.  For a species that has the ability to destroy itself a hundred times over, it can still do Mozart, Monet, Ghandi, Lincoln, and Monty Python.  Hope - I am a Mets fan, after all.

April 22 Hobbies

Baseball, the watching and history of it. Cooperstown and just was at Fenway for Opening Day.  As I said above I am a Mets fan, but I have a very deep love of the Boston Red Sox.  Both teams are steeped in history, both have a knack of frustrating their fans.  But we don't win every day either, and if have neuro problems or other invisible (to the world) challenges, a lot of days we don't even want to compete, or show up.  But when you open your eyes, just think "Maybe I can win today." Baseball is the only sport that if you are successful even only 30% of the time, you are consider one of the best.

Tons of books, history, mysteries, baseball stories, baseball cards (Mom didn't throw them out - didn't even know they were there!) and a dice baseball game that I've played for over forty years.  And the computer version.  It's given a lot of enjoyment for a long time, either on my own or with friends.  I dive into the history of the season and what the world was like in that time.  I've developed a deep appreciation of the Negro Leagues, and have met quite a few of the actual players.

Which brings me to the writing.  One of the stories I'm working is about the 1921 Cincinnati Cubans, a group of Havana ballplayers invited to play in the Negro Leagues.  They arrive in the US and and try to adapt to a very different culture, and outside temperature.

And all the other writing. Like this.  Thanks for reading.

Sunday, April 19, 2015

HAWMC April 11 -19 but yesterday doesn't count.

Soooo I've been a little busy, and out of it, and seeing doctors of all kinds, and well, just doing other things - like writing my novel.  So a quick update:

April 11 - Pet Pal - I've written elsewhere about my dogs so a tip of the cap here to the annoying chipmunks and squirrels in the back yard that dash back and forth around the property looking for the food that should be there because Mr. Squirrel and/or Mrs. Chipmunk swear by their small brains it was there before the white stuff came down and covered their ground and they (as rodents) could not move, so they had to sleep for four months.  On a better note, Mr. and Mrs. Bunny show up in the early morning and at dusk to wander around the yard, and eat clover.  Both are used to humans, but keep a good distance.  Some nice moment are the cooler August nights when I'm on my deck, reading, and the bunnies just wander around, taking in the last long rays of the sun.  The guy next store has a bird feeder, so cardinals, robins, etc., help themselves, and we can listen to song. I am glad of it because our front area has bushes and trees that the birds hop around it all year, which is really cool on snowy winter days.  Thank you, Nature.

April 13 - Re-educating family members.  I am not able to dash about like I used to, at least not as long.  They are learning, and I am learning patience with them and myself.

April 14 - I feel best when... I can get some decent writing done, a little exercise, and have just made plans for a future fun time.

April 15 - A Mets rally. Matt Harvey striking out the side.  Big Papi hits one into the right field stands at Fenway.

April 16 - I wanted to tell stories in some form, writing or acting in them.  I've acted and am working on getting my stuff out there.  I did not get to the moon.  But I did sit in the Captain's Chair on the Federation Starship USS Enterprise.

April 17 - I'm still standing, better than I ever did.  (Elton John song).

April 18 - First, I do not look forward to heat, humidity, bugs. No thanks.  I do love sitting at a baseball game.  Inductions at the Hall of Fame.  A few days in Boston, to be near the sea.  *****

Actually, today I had a morning meeting of my mystery writer's group.  It's a bit of a drive but I've been semi-shutin for months and now with decent weather I want to pick up the pace again.  The drive, meeting, and ride home took about six hours, and when I arrived back home noticed that I had forgotten to take my morning pills.  Since I was doing all right, I opted to not take my afternoon or evening pills, to see what I was like before the pills.  Yes its a small sample size, but even so, I learned that I can yawn, something I rarely do now.  I do have some hallucination issues when I'm lying in bed, and the show, while harmless, can go on for hours, if its one of those nights where sleep is being shy with me.  Last night while I lay in bed for two hours, there were a few dancing decorations and then it stopped, maybe ten minutes.  Also I had that "wired" feeling in my upper shoulders.  But I went back to bed around three AM, and had no hallucinations and no nightmares.  And yes, when I got up on Sunday.....

April 19 - I went right back to the pill routine.  But it was interesting spending time with the Old Me. As for stress, it is inescapable.  But I spent six years or so talking with Buddhists monks and nuns and learned a few tricks to relax.  Here is the definition of Zen Buddhism:

Everything's changing. Everything is connected. Pay attention.

Be Here Now. And Now. And Now.





Sunday, April 12, 2015

HAWMC Day of Rest.

OK, this one is easy:

1.



Baseball in person or on the Tube.  

2.

Books, Books, Books and a cup of something nice.

3. 

Yep, that too.  Snoopy and yours truly dream of being the Great American Writer.



And someday I can go outside and work in my yard for about ten minutes.  Then I sit down and look at the yard.

All I need.

Saturday, April 11, 2015

HAWMC 4/11/15 Pet Pal.

I mentioned my dog some posts back, (OK, actually my sister's dog, but my sister was 17 when we finally brought the dog home and Barb was already her partying self, so Cookie moved on to me) and you can check that out.  But this is the one where we are supposed talk about pet pals, so I will note two others, no longer with us, that made me smile and still do.

Summer afternoon 1972.  It was pouring outside and I was just sitting at our dining room table, the one used for Thanksgiving and Christmas, putting a model car together ("Don't get any glue on the table!").  The transistor radio was playing the Top 40 songs.  My father had just left for the night shift, and my mother would be home in two hours from her job, so it was me, Cookie, and this:


The above bird is a budgie.  My grandmother had one for many years, and when Grandma died, we got the budgie.  We fed it, cleaned it, and let it do its thing in the cage, and occasionally opened the cage door and let it fly around the house.  The budgie, called Chico, found my father's bald head a nice resting place.  Cookie would track Chico around the house, but aside from a bark and a lot of sniffing at the budgie by the dog, no violence ever happened.  One day, though, I came home from school and, after dropping my bookbag, hunted around the house for Cookie.  Especially when I saw the cage was open and no bird around. Twenty minutes later, the bird was found, intact and chattering under the dining room (used at Thanksgiving and Christmas only) table.  Cookie was in the midst of her afternoon nap, and whatever had happened between dog and bird that day will never be known.

So it was this feeling of Nixon era detente that came over me at that moment and I can clearly remember telling myself what a great moment it was, that I should remember it. And I do.  Memories fade from me now.  But that one was, and remains,  as clear as glass.

And so is this one...

My wife's family had a farm (e-i-e-i-oh) and on this farm they had a dog. Her name was Lily.  She looked like this:


Golden Retriever.  Away from the farmhouse, and on the expansive acres around, Lily could have a field day running, well, around the field.  One Sunday in September, in the morning I was sitting on the outside couch (its a farm thing) such as this:



Breakfast was over and I was taking in the bright sun and blue skies. Lily would leap over the couch, over the wooden fence and into the tall grass. Running and running, tongue flapping like a pink rag out the side of her mouth. Now and then she'd run back and try to grab a coat sleeve or pant leg because she wanted to show me something.  This was anything from bones (animal) to something I had no comprehension what she was barking and huffing about.  We'd end up back at the couch until we did it all again.

They are gone now. The table, the couch, the animals.  But they are right here in my head, and as MS plays its tricks with my brain, some parts refuse to leave me, but console me.  They are my friends still, and I can be there with them anytime.  It's the brain, people. Use it. Bipolar, MS, whatever your challenge, the brain needs to be stimulated.  You live there, too.



Friday, April 10, 2015

HAWMC June 10 Comfort Food

With MS, you never know when you will be hungry.  Normally for me its when we turn off the lights, and lay our heads down, and I am quizzing myself on what the Red Sox lineup was in 1982 (hint: Yaz and other people), when I will hear:

*be-yoing* *beyoing* *beyong beyong beyong wiiiiiiiiiiing*

(your noises may vary) Oh, well.  Then I doze off, and my tummy has to wait until morning.

My wife will ask "Are you hungry?"  My answer is, normally, "No."  We eat anyway, as I need fuel to keep my sputtering body going at some level.  Well, food and drugs.  Lots of drugs.

But this is the food issue, so......

I have two platefillers that I do on request.  One is a meatloaf dinner and the other is Texas chili. Comfort food in the former, hot and spicy for the latter.  I balance the firepower in the chili with honey cornbread.  Oh, sure I can do the burgers/hot dogs on the grill, even a steak, chicken, or even pizza, as long as I can sit down near the fire.


The above is a picture of the Boston Market meatloaf.  I tweaked their recipe a bit. Much better.

My wife has her comfort meal, too.  Chicken breasts with mashed potatoes with cranberries. Amazing.

Of course, we do desserts.  My wife's cakes are charmingly made, and we both bake cookies.  And breads.  So we do okay.

Sadly, what I can never have again is my mother's rice pudding,  and her apple pie.  The last time I had the rice pudding was Thanksgiving 2000.  She made a bowlful of the heavenly treat and was to go with my wife and I to visit my wife's family in Syracuse.  Unfortunately, she never made it, ending up in a hospital after a terrible fall Thanksgiving morning.  My mother never returned home. Before I went out to Syracuse, my brother and I shared the bowl of pudding.  We both knew we'd never have another.  Or another apple pie.

No matter what your lot in life, savor every bite.

Thanks for reading.

Thursday, April 9, 2015

HAWMC April 9 The daunting challenge

One hundred and fifty years ago today, the army under command of General Robert E. Lee surrendered to the Union forces of General Ulysses S. Grant at Appomattox. Thousands of men, women, and children died from 1861 - 1865.  Then everybody took their guns and went home, trying to go back to the world of Before The War.



Nope.  When the soldiers went home, if there was still one to go to, they saw a different world with new challenges few ever thought of.  

The main word there is home.  As a baseball fan, that reminds me of the George Carlin baseball/football routine:

In Football, the object is for the quarterback, otherwise known as the field general. To be on target with his aerial assault riddling the defense by hitting his receivers with deadly accuracy in spite of the blitz even if he has to use the shotgun. With short bullet passes and long bombs, he marches his troops into enemy territory, balancing his aerial assault with a sustained ground attack, which punches holes in the forward wall of the enemies’ defensive line.  In Baseball, the object is to go home, and to be safe. I hope I’ll be safe at home, safe at home.

We're always on a journey to some place or thing or a desire. But the job was to talk about something I overcame.  So a journey, short but life changing.

I grew up in Troy, NY in the 60's and 70's.  Actually I was in Lansingburgh just north of Troy, but The Burgh is considered part of Troy.  Now this little story begins in Troy in November 2010.  I was sat down by a neurologist and told I had MS, as far as they can tell.  I finally had an answer to the physical and mental problems I'd been experiencing over the last year.  I was not surprised by the information.  See, my father had the same thing at the same age I am.  I was not only naming a disorder for myself, but for him.  And there was little the medical community could do for me.  I don't fit in with how the big drug companies want to place their products.  

So I had to tell my wife.  I called from my car in the parking lot of the neurology office.  I told my wife what I had been told, and I would see her soon.  I took the long way home, which allowed to see some of my home town and local vistas.  It was a raw November day, but I had music on and the time slipped by.

I got home, walked and found my wife on our couch.  She had done what I knew she would do.  She hit in web and printed out all the information she could fine.  We had some knowledge now and could continue our journey.

I have not overcome MS or being bipolar (I have all of my parents' medical issues pack into one body for convenience, but not mine).  Nor will I.  What I will do is get up everyday and enjoy what I can, reading, writing, day trips, etc.  I have the blessing of having a caring wife, and access to others and information my parents just would not have had.

My father died on October 19, 1979 at the age of 59 years, 11 days.  I am looking forward to October 21, 2015.  That is the day I will be 59 years, 12 days.  My father never was "diagnosed" with anything, but my own recollection of his last few years show what I believe to be the same symptoms that I have.  I was his caretaker, mostly.  Same with the bipolar disorder that held my mother in chains for the rest of her days.  One bipolar person taking care of another BP person? Nope. Disaster.  Trust me, it is.

The daunting challenge continues and it is one that I shall never overcome. But I'm thankful for every day and I try to enjoy what I can as much as I can.  Like the baseball game that's on now.  Thank you for reading.  And thank you to my wife's great great step uncle who was in the Union Army, but never left the Wilderness in Virginia in 1864. Rest in peace.

Wednesday, April 8, 2015

HAWMC April 8 Souvenirs

For the WEGO Health Activist Writer's Month Challenge                  #HAWMC

Today's question:

What is an item you have kept with you that reminds you of an important time in your life?

Well, as Rod Stewart said, "every picture tells a story, don't it?"

So here are some....


This picture shows two bookends (Lincoln) and a bust of JFK, and in the background is a baseball jersey.  All made by my sister Barbara who died of cancer in 1991.  I can look at these and see her every day.  And in my grand niece's laugh.



The picture on the left (taken with a Polaroid Swinger - talk about throwback!) is the only one I have of my dog in the 1960s and 70s.  The sketch I found at a craft fair and was amazed how much it looked like Cookie (that was her name) .  This life was the most dominate one of my early days and her loss after 11 years of loyalty and love crushed me for a long time.  I had to face the next years of insanity alone - first my father's neurological problems, and then my mother's decline into depression and death.  I have inherited both disorders.  I could use my dog now.  But sometimes in my dreams she walks into my room and we talk. That's nice.  I still have her walk chain.

OK, that's my first attempt at this.  I have been away for a while, but I shall return.  Maybe even tomorrow.

Thursday, January 22, 2015

Spot the symptom!

Hello and welcome to your favorite MS game show - Spot the symptom! And here's your host, the one thing you need the most, your Brain (B)!

(Polite applause from the non-lesioned part of the audience)

Hi, I'm your brain and first, welcome, and second, legs fold forward, and butt, lower yourself and prepare for contact with a chair. Thanks. Now please say hello to our contestants - the Appendix  (A) and the Right Kidney (RK)! (Crowd: applause.  )

B: Let's meet our contestants.  Right Kidney, what do you do?

RK: Well, Brain, as you know, because you are the brain, I extract waste from blood, balance body fluids, form urine, and aid in other important functions of the body.

Thanks, Right Kidney.  And Appendix, what do you do?

A:Nothing. I just sit there between the intestines.

B: OK. There's our contestants.  Now, here's our first question on Name That MS Symptom -

"The attack may last from minutes to hours."  Yes, Appendix?

A: What is an appendicitis attack?

Flatulence Buzzer! (Crowd: Awwwww)

B: Nope, sorry, appendix.  Okay, let's move on to our next question on Name That MS Symptom.  "When blood flow returns, the area becomes red and then later returns to normal color."  Yes, Appendix?

A: What is a very bad rash?

Flatulence Buzzer! (Crowd: Awwwww)

B: Nope, not this time, Appendix.  Joining in Right Kidney? No? OK.  Here's our third and final clue. "First, the fingers, toes, ears or nose-" Yes, Appendix?

A: Leprosy. I mean "What is Leprosy?"

Flatulence Buzzer! (Crowd: Awwwww)

B: Sorry, Appendix, that's not correct.

A: Whattaya mean not correct? Those body parts are always falling off lepers.  Two thousand years ago you had to kick the lepers out of your village when things started going bad.  There always was a leper somewhere to blame and to cast out.  I feel for them, you know? I mean I look sideways at the Upper or Lower Intestine, and before I know it, I'm snipped and cast out myself.  You don't do anything, they say.  We've moved on in evolution, they say.  Me and the tonsils, always the first to go. Sad.

B: Thank you for playing, Appendix. Right Kidney, do you have the proper response? The answer was "First, the fingers, toes, ears or nose become white, then turn blue."

RK: I think its Reynaud's Phenomenon? I mean What is Reynaud's Phenomenon?

Dingdingdingdingding! (Crowd: applause from non lesioned part of the audience. Lesioned parts of the audience sit sullen like the opposition party at the State of the Union - because they've forgotten they are still in the Union)

B: Yes, that's right, it's Reynaud's Phenomenon!  And no matter how much you put on woolen socks and mittens, it'll still make you miserable, by freezing up fingers and toes. If you're on a beta blocker, like we are in this body, your doctor has to change that prescription.  And a note to me, remember when stepping into that warm pool at the Health Center to go very slowly or the hands and feet will burn like red hot chili peppers.  OK, that's all the time we have because we've just walked into a room   and we have no idea why we did that.  I'm Your Brain, and I will get right on that problem, whatever it was.  Bye !

A: Sure, kidneys get all the glory 'cause they can be given to somebody else and save lives.  Donate your organs, they say.  Be a lifesaver, they say.  But nooooo, not you, Appendix.  Nobody needs another appendix, Appendix.  Get back to sitting between the intestines.  We'll call you if we need something to burst.   Ha-ha, Blah, blah.  Might as well get back there and do whatever it is I do, but I wish the  intestines would stop throwing so much crap my way.  I'm surrounded by it.  Sheesh.

(Raynaud's info from NIH)