Tuesday, November 26, 2013

Thanks for all the memories

Over this recent weekend the USA was deluged with JFK assassination dramas, recreations, books, and the ever popular Zapruder film.  Every person who was even a fetus in Dallas on that day had been interviewed and inculcated or dismissed as someone involved in the conspiracy.  Since abortions are really, really tough to find in Texas, there may have been a zygote or two thinking nasty thoughts, but not that thought. Dear Lord, not those thoughts.  The removal of one man from the world could so  change the future? To take someone from his friends and family for your own personal gain, even if it is as foolish as thinking the nation would benefit.  Buddha was right. Delusions, all delusions.

Mrs. Perry, our elementary school principal, stood in the doorway of our third grade classroom (and when Mrs. Perry stood in the doorway, she was the doorway) and told us President Kennedy had died and we were all going home.  The home part I got, even at age seven.  What I did not know was who President Kennedy was. I thought there were two guys.  The ones above the blackboard..


The bearded guy and the man with the mouth full of mashed potatoes that I saw every school day. Now because someone whose first name was also President had "died in Dallas."

Two more words there.  What is "died"? and what is "Dallas"?

I had no experience, as far as I am know, of anyone dying when I was a kid.  My mother's mom died in May 1961, and I don't remember a thing about it (hey come on, I was 4) or her at all.  Her grave site has no marker (right now). And with my mother and sister gone, and all cousins way off the grid, this is all I have:

She was hard working lady, divorced when people did not get divorced, and as a single mom raised her two kids during the Depression. She had a wide family support system, which is not always the case nowadays.  Frances McBride Van Wert is just a set of pictures now.  But I am grateful for her toughness. It helps.

So Frances did not die, she never was to me as a kid. Same with JFK.  Until his funeral.  I watched the entire procession, about three feet away from the TV tube.  I was amazed at the pageantry (in black and white) and the horses, and the drums. The drums.  Even writing those words brings the sound back into my head.  Bump Bump da Bump da da da da da Bump Bump da Bump.  Over and over. Goose bumps again

And that's when I started screaming. That night, or some night just after, I was dreaming I was riding in the car with President Kennedy. I hear a popping sound and the President's head tumbles on to my shoulder.  He screams something into my neck and I woke up screaming.  My parents had me sleep with them that night.  And I can replay that dream in a second.  I wish MS would find that memory and dump it, instead of the one that knows where my car keys are.

Sometime later my parents gave me a book (Tell Me Why series) about President John F. Kennedy. I kept that book for years.  Questions and Answers.  Where was he born? Who were his parents? What did he do? Why did Jack and Jackie dance to the Tennessee Waltz?  I was grateful for that, as well.  It turned me on to American history. So many stories to tell....

Now that I am eleven years older than JFK was when he died, its amazing how much living he put into his 46 years.  Yes, yes, he had his foibles and we know about the womanizing, blah blah, sell some books, or get them at the dollar store in a few years.  What matters is those two kids lost their dad.  Like my mother Marge lost her mother Frances when Marge was 37, or my two nieces and nephew lost their dad (ages 9, 14, and 16) - there he was, and then he wasn't  The guidepost was taken, whether by assassin's bullet or an aneurysm or the long stretched out death of cancer, and the nation, and my family were never the same.  But you go on, because you have to, and treasure what you got, because that's all you get.  Sometimes its the weight of those memories that slow us down and consider the road we are traveling.

But there were memories, and they remain.  My mother told me that I was very talented, though this may not be what she had in mind:

Yes, I am ironing.  Problem with that?  So early on I was a neat freak.  My mother was always washing and ironing clothes, so I thought I'd earn my keep.  The lady on the right in the picture is my father's mother.  That's a whole 'nother story.

Last year I gave list of what I am and am not grateful for.  I am grateful that my mind, damaged by MS, still lets me tell stories. And that I have my group of angels (some seen and some not) all about me to keep me hanging on. And I intend to hang on.  With only occasional screams.  Happy Thanksgiving.

" The work begins anew. The hope rises again. And the dream lives on."  Senator Edward Kennedy.  2008 Democratic National Convention


Tuesday, November 12, 2013

The 100th Post! Diagnosis Plus Three Years! MS - Year 5! Exclamation Points!

So here we are, 100 posts into the weird world of bipolar disorder and multiple sclerosis/demylination disorder.  I hope it has at least been entertaining for you, as it has been for me occasionally.

So it is now award time...Yes, it is time for the Tommies!

Made from pieces I picked up at Legoland in Disney World (if they are on the ground for five minutes, and no kids pick them up, fair game).

The best way to know if you're bipolar:

Last night you understood the secrets to the universe and this
morning you are contemplating whether the jam goes on top of the
peanut butter or under it.
A tip of the cap tohttp://manicdepressivetalk.com
The best line about MS:
what kind of a medical condition would call its most annoying symptom a hug?
A tip of the cap to: http://yvonnedesousa.com/
The dumbest thing about research:

The Multiple Sclerosis Foundation
The Multiple Sclerosis Association of America
The Multiple Sclerosis Society

They all say the same things, they all want money for research, the money goes to massive pharmaceutical companies that eat cash like a zombie would gnaw your arm off.  Then they want another leg. And they want you to walk, bike, run, push a wheelchair, slide in mud, and get as many of your family and friends to participate as possible and we want their names so we can hit them up for more. A cure is right around the corner. Yep.  Support groups? sure, I go, but no one's cured yet, and all are brave souls to share pain. Stable? Sure, if you have relapsing remitting - I know it still is a tough road - and there are always surprises on the road - you may go a long time between flare-ups.

How about the three groups get together and figure something out? Like Republicans and Democrats. Maybe a concerted effort will speed up treatments and a cure.  It won't come for me, or many others with MS around now, much of a shot for that. But you live in hope, and carry on with how you're doing TODAY.


What have I learned? People are very nice. People are selfish.  Patience is the number one virtue, especially when your wife has a hearing problem. People like to hear your stories, as long as they aren't boring or have to do with the speaker. There are a lot of other people worse off than you.  Enjoy every sandwich.  Disney was right - the world is a carousel of color.  Listen.  Ask for help when you need it, even though you won't. Be prepared. You will forget things. It's okay, your brain is actually trying to rearrange things to keep functioning.  Keep being challenged, whether reading or writing a book.  Everything you did before were lessons to prepare you for this.  I know. I watched my father go through it, and I think I know now what to do and what not to do. Have faith in Someone or Something. The flowers will grow anyway.  That's their job.  People will look at you funny if you park in a handicapped spot, but don't at least drag your foot.  "Nothing wrong with you. Lighten up!"


Some days are better than others, but that's probably true for every sentient being on the planet.  There's not much pain, the fatigue is less, but when its ready to come back, it's like a dynamo. I don't really get overly manic or really down.


I've always noted the beginnings of MS from January 2010, though I knew in the months previous that's something was off. The semi-official diagnosis from the Troy Neurologists was no surprise, though then being told that I did not have lesions on my spine late last year, meant no actual MS, just Demylination Disorder.  Add that to the bipolar disorder, and I'm double disordered.

But I am having a good time. Naps count.


I admire the courage I see in people with MS in all its form. Gives me a special appreciation for the Wounded Warriors coming home from George W.'s wars.  And reading what it was like for the Civil War soldiers on both sides, when suffering was almost a requirement, and a slow death the most likely result of anything like a minie ball going through you anywhere.  Mostly from infection.


January 1, 2014 will start year 5 of MS. For all intents and purposes, I've outlived my father's version of the disease. Yay me.


To quote the country song: I ain't as good as I once was, but I'm good once as I ever was.  Just make it before seven PM, okay?


Who are you people who read this thing every week? Tell me sometime.


I have stories to tell, and much to learn.  John Fogerty gave a great concert Sunday (and if you don't know who John Fogerty is, learn) and the intimate crowd(?) or small group made it more like being at a CCR concert in the early 1970s, like at the RPI Fieldhouse. I want to soak up so much and understand what is possible, because in some universe or another, it is.  Who knows? maybe next time I'll end up there.  Maybe that's the universe where the Mets win every year.

I've heard this from the New York Mets top brass for years - There is a Plan.

"There's reasons for that
There's reasons for this
I can't think of any right now
But I know they exist"   - Bob Dylan "Hell is my wife's hometown"

You decide.


Thank you for participating even with just your eyes scanning the words.


OK, to be fair, this is from the local MS Society....

As a result of your fundraising efforts, we've provided financial assistance for air conditioners, ramps, home modifications, medical services and more for nearly 200 individuals affected by MS. We were also able to offer a variety of support options, along with the program “Knowledge is Power” to nearly 80 individuals newly diagnosed with MS.

Well played, MS Society....

Monday, November 4, 2013

Shipping off to Boston - Not

In one of these posts I may have stated that I am a fan of the Boston Red Sox baseball (and to my readers in the Ukraine, baseball is an American sport where a player throws a hard ball 144.84 kph at another player 18.47 meters away who must then attempt to hit the ball and run to three bases, 27.4 meters from each other in a square, hoping to return to "home" plate where you began, another 27.4 meters away.  In the meantime, nine other players are trying to stop you from doing that.  Really, you've got to see it).  The Red Sox won the World Series last week, crowning them the best team in baseball, at least the version we play here. I was quite happy for that and gave a tip of my Red Sox cap to the City of Boston, as they deserved some good news.

The Red Sox had not won a World Series from 1918 to 2003.  They did in 2004 (Cool fun factoid - in 2005 a movie called Fever Pitch was made and it starred Jimmy Fallon and Drew Barrymore in a story of these two Bostonians falling in love during the pennant race of 2004.  The script had called for the Red Sox to be beaten out by the NY Yankees, because, well, that's what happens. Alas the Sox shocked the movie producers [and everyone else] by winning. So they changed the script and followed the team to St.Louis to win the series in four games. Here's the fun fact - Jackie and I are in the movie, well, our voices are.  On a day we went to Fenway was one of the first days of shooting, Opening day re-enacted.  Big Old Glory on the Monster in left, bands, and throwing our the first pitch, Stephen King.  So that cheering of 30000 fans includes my wife and me).

When the Sox grabbed the title in 2004, they had a parade in Boston with the players, families and staff of the Red Sox rolled through Beantown on Duckmobiles like this:

They bring you to historic and interesting parts of town, and then hit the water so you can see the skyline of the city. We've done it a number of times, but oddly not in Boston.  (Another odd thing - we had duck boats in Albany until a few years back, and whenever the boats would go by the welfare office where I worked, the host/hostess on the boat would have the tourists look to the other side of the street, and shun the building where all the poor people went to get help.)

So anyway, there was the 2004 championship duck boat parade and Jackie and I rose up at about 4:30  AM, and got on a local bus charter and made it to Boston to see the parade and revel with everyone.  

We enjoyed the time hitting pubs and having a great lunch while watching the duck boats splash in the Charles River, and the Sox players waving the Championship trophy. My wife has always told me it was one of her favorite days, ever.

And the real reason we could go? The parade was held on Saturday. We couldn't do anything about the 2007 World Series win because they clinched on a Sunday, and the parade was Tuesday or Wednesday.  Nope. Still working.

So here it was again, our big chance. I called and got reservations for the trip to Boston on 11/2/13.  I told Jackie, who was pleased and raring to go. Until Friday. That was when the slight cold she'd had had erupted into a very bad cold.  Immediately I got buyer's remorse.  In '04, we could trail the team, following the Ducks, and running all the ups and down of Boston hills.  Hills, there are hills in Boston.  Get up at 4:00 AM? No.

That bird has flown the coop and slammed into a brick wall.  I called and canceled, and even verified it with the bus driver when he called me at 5:00 AM Saturday from the bus to ask if we were coming. We watched on MLB.tv.

Next month we've got a bus trip to Radio City.  We leave later and cannot stir too much as we have the show in the middle of the day, so limited walking.  

My wife said "We have to put a little more thought into these trips."  I must agree.  I could get around Disney World well enough because there was no time limitations.  There's always another bus, and Space Mountain won't fall to dust. Relax. Missed the parade? OK, we'll do it again in a few hours. 

Long trips with a lot of driving are just out, the agreement being that I'll do the beginning and the end, and Jackie does the middle. We adjust.

But so help me (deity), if the Mets ever win the World Series again, I demand they thaw my body out at the cryogen stasis lab and plop me in a wheel chair, so I can see one more.  For now.....

And in memory.......