Saturday, April 27, 2013

Holy crap! I forgot to blog! Oh, title, I need a title. Ummmm, New levels, that's it. New Levels.

Wow, I've been working on a bunch of things when I'm up to doing anything, and not working on anything when my body says "oh, no, not today, bubbie."

Like today.  I signed up for a yoga class that would meet every Saturday morning in Troy during April and May. I have been to exactly zero of them.  My wife and I attended a yoga class at the same place a few months back.. That was fine because, first, my wife could prod me into going, and second we headed out for a nice breakfast after class, and third, since we two were the only ones in the class, the yoga instructor could adjust things for the slightly slower of her students (me)  Could I set an alarm and get up on time? Yep. The latter half of this week has been very slow.  The energy levels are just not as usual.  Just because I went home.

I've been writing stories about growing up in Lansingburgh (part of Troy, NY) for about six months now.  My stuff, along with a lot of other folk's recollections about the 'Burgh from the 1940's until the 80's, have been anthologized into two books so far.  My stories run the gamut from the day I was born  to the house where I spent my childhood to where I played baseball. The amazing part of the stories of the other contributors is how we all shared the same experiences of growing up in what for us was a small town, and that for many of us all we needed was there already in the 'Burgh or in Downtown Troy.

To write these stories I have had to go back the Burgh first in my mind and then with a camera so I can see what the places I wrote about look like now.  The pictures end up in the book. But I can see the house where I grew up, or house(s) and think of the good and also the sad things that happened there. Down the streets to the schools I went to.  The ballfield where I played.  Where historical figures of America strolled the avenues, not knowing they were going to be historical figures.  People like...
 Chester A. Arthur, 21st President of US
 Herman Melville, Author of Moby Dick
And Loretta Young, but she was kind enough to sign the picture for someone so you have less guesswork.

These folks are long gone now, as is most of my family.  My parents are in Oakwood Cemetery at the top of the hill, my sister lays in a smaller graveyard down the hill.  Relatives still above ground are scattered.  But in my mind when I go to the back to the Burgh, for me it is 1973.  No one is sick, I'm in high school wondering about college, and will the Mets get back in the pennant race?  Everything is potential, no idea what's coming.  Scary, but also the sky is the limit.  And when the sky came crashing, and then did it again and again, you learn to pick up what is left and keep on going. Another day, you open your eyes and let's see.

Richard Cohen, Meredith Viera's husband, has MS and has also written extensively on coming to terms with disease and mortality, including his own.  In a recent book, he interviewed, and pretty much moved in with, 5 families dealing with everything from cancer to ALS. And these people just keep on going, living their lives as best they can, denying immediate demise for some later date, and enjoying what can be enjoyed with family and friends, and a support network (both internal and external).  The book is a few years old now, and circumstances change (he says not knowing if all the folks in the book have since died or not) but it is inspiring.

For the past year or so I've been in a writing group at a book store down the road apiece.  The writers are congenial, talented, and the laughs come easy.  Now we are in a break and brought my stuff to a new group in Troy.  I seem to be spending more time in Troy over the last two years than I have over the last twenty five, even when I worked there.  Of course, in my head is 1973 Troy, but I can also see a new generation is trying to forge new businesses.  They have to up their game, as the saying goes.

My writing with this new group has to start fresh and I can not depend on old stories to get me through with this group. Gotta up my game, take the time I get each day to go for more.  Will it poop me out? Yep.  But the next day I can rest some.  I know where things stand, like the people in Mr. Cohen's book.  Do I have a health problem? Yep. Will it kill me? Not really, but it can open doors to other things, and meanwhile turn me into a peanut with a baseball cap on my head.  Anything you can do about this disease? Nope, just keep moving. Keep moving. Eventually I'll fall into a hole and dirt will be pushed over it, but that's always been part of the deal anyway.

Mr. Cohen is still moving. The three people whose pictures are in the today's blog are not moving anymore, but in their time, they  lived as best they could. President Arthur had Bright's disease, and he did his best especially in the latter part of his Presidential term to keep things going while combating the exhaustion.  Chester just upped his game for the whole nation.  Imagine if we all did that.

Later. Thanks for reading. Move.

Wednesday, April 17, 2013

Notes from the Battle Front

The title does not reference Afghanistan, Africa, Tatooine, or anywhere else our brave troops battle the dark forces, and, even worse, the stupid people who will cause death and pain because they can, or because their version of a deity said so, or both.  Nope.  These are the MS and BP battle lines.  No one can see them, and the only map is what made be found on MRIs.  But we fight nonetheless.

I've spent quite a few hours recently in support groups for both MS and BP, and I think I've talked about them before, but the groups change to reflect the minute.  The two worlds collide along many lines, so its like you are fighting (or I am) two wars at the same time, and who you are fighting are Allies of a sort, but each one is looking for the advantage for themselves.

Some of the folks in the bipolar group take medicines I use for MS, and guys in the MS group take some of the bipolar meds,and mostly both are mood stabilizers (the meds,not the people). The MS group guys are mostly on the A/B/C or T group (all the possibilities are listed here ) but there are we hardy few who take no pills or  treatments because we there's no point at least in MS for us to waste time on them.

For the human factor, the people in both groups amaze me with  their acceptance and heartiness.  Both of these diseases can get to you and depression is their specialty.  Yet we press on.

Bipolar group meets in a local church and there are normally (to coin a phrase) four of us, and oddly I am the youngest most days. We get the occasional one shot visitor, whose story, if they share, are usually darker than our own, as they are still searching for the light out.

I live in a world of government work, and good pensions, and my wife in the health field. The economy never actually touched us.  In group, you hear it from others each time.  How are they surviving with lost jobs, homes, and health insurance, struggling with changes internal and external? I heard it certainly in my job from some of the poorest folks.  But this is a middle class neighborhood. This can happen to us?  There are a lot of hugs.  Not much in the way of answers, but we listen and understand.

In the MS men's group, time is marked by how many men are using walkers, canes or stumbling around.  We meet in a nicely paneled medical waiting room that has comfy chairs and coffee and cookies. It's after hours so we have the place to ourselves.  So that many guys in one room in the Northeast US means it's Yankees versus Red Sox (with the odd Mets fan - in my case very odd - here and there) but we all have MS and that we all share.  That and liking the cookies, and the coffee, and therefore needing to use the bathroom and you can see how guys struggle with just the trip there, those who will accept the help of an inanimate object rather than human help. It hurts male pride.  I was in my water therapy yesterday, and was changing back into my civvies when the dressing room door opened and in came a young man on crutches for his hour in the pool.  I'm used to opening doors for folks all the time, but this young man did not appreciate the help.  Son, I know you're macho, but you'll be glad of the help along the way, and pass it on.  I am lucky. I can walk fairly well without assistance, though I can sympathize with some of the guys who have memory problems.  One guy could not remember the name of his doctor that he had seen earlier in the day.  I still can't remember the name of my grandniece, and I've been trying for six months.  This can also show that my family is distant in more ways than one.

We do get interesting questions.  Is Indian or Chinese food better for you? What is tumeric? and With the passing of Annette Funicello, who is the patron saint (aka Celebrity Voice) of MS?

Is it                                                                          
Teri Garr

We can also add Jack Osbourne or the actress on the soap The Young and The Restless who plays Nikki and has MS (on the show).  It seems our group here is sort of on the "C" list celebrity type.  I'm open to others.

But bipolar, now we do OK:



Catherine Zeta-Jones

The support groups are basically white people.  One time in BP we had a gentleman from the middle east, but he might also be part of the "dabbler" bunch as he visited only once.

Both diseases tax your mind and body.  But you are not alone.  We're here hoping you'll come visit. There's a cookie waiting. 

Tuesday, April 2, 2013

Year 4 - Exhaustion as a true art form.

I've been channeling a lot of Burgess Meredith lately.  Now I'm of an age when the name Burgess Meredith is mentioned, I think:

Right, the Penguin from the original Batman TV series.  No disrespect meant to Danny DeVito from the movie, or whoever voiced him on the various Batman animated series.  For me Mr. Meredith is the Penguin.  And I'm not even talking about that character.  Mr. Meredith's other iconic role (aside from Of Mice and Men [assignment: rent and watch] ) was as Mick, the trainer in the Rocky movies.  This guy:

"You'se got fight this guy harrrdddd, like you did the last time! Dat was beautiful!"
And there I am, trying to do one handed mental push ups, while "Gonna Fly Now" is playing in the background (which, when you've tinnitus, is not always helpful). 
Last week I wrote about my late sister's 65th birthday, and how she touched our lives.  The following day I was in my home town of Troy, NY  to attend a meeting of Facebook friends who lived in our area of Troy called Lansingburgh (aka: the "Burgh").  Over the past year I've become more involved with the group as I've added to its published book pages a number of articles about Burgh life, and more in the next tome on its way later this year.  I've spoken with classmates from high school and got caught up on the Burgh's highs and lows.  Now in my mind, it's always 1973.  I live at home with my folks, no one is sick, I'm getting ready to be a senior, and playing baseball.  That's the Burgh I know, and what I am grateful for.  Life has moved on in this small area of the State, ain't no doubt.  But in our Facebook gang, we can hop in our time machine and go where we will.
Toward the end of the luncheon, the stories were being swapped around and I added in my favorite story of my sister's wedding.  When the laughter turned to another yarn, I was approached by some folks and asked how my sister was doing. Thud. Not the fault of these nice people, but I had to talk about Barb's passing again.  I was mighty glad the luncheon was over, and I headed for home, oddly driving from a beautiful sunny day right into a rainstorm.
I had low energy on Thursday as thoughts remained too far in the past, and then Friday began  with a get together of family and ended with yours truly sharing a drink with a friend from college days, and having to relive my college romance breakup from Someone Else, and then answering questions from my spouse about those days as well.
The first thing to know is that while stress    
can make us feel worse, whether upsetting
our stomachs or knotting our neck muscles,
no research group has been able to prove
any direct cause-and-effect relationship
between MS and stress. Many have tried.

More family over the Easter holiday, more thoughts, and fortunately more drugs. The last few days being a little quieter I've adjusted, but the energy level remains low.  No swimming this week, but we've extended the pool time into May! Plus One! I'm still writing albeit slowly, Plus Two!

"Hit the guy hard!"

My neurologist, who can only tell me to touch his finger there and there and there, said I am doing great as long as I take it slow.  "You're a marvel."

"You got him, Rock!," says Mick.

I've shared a lot of my life over these past few months here and other, and I grow stronger at the broken places for it.

OK, Mick, I'm ready for the sequel.  Bring it on.

(Cue Survivor's "Eye of the Tiger")