Tuesday, March 26, 2013

For my sister on her birthday...

I was having some difficulty coming up with a topic, especially since it was a down in the dumps day.  Normally I talk about days where things don't go right, and how I still try and make something good of my time.  Not today.  I'm not sure if its the bipolar depression or the MS version or perhaps they met up somewhere and joined forces, but its a downer. 

Maybe because today would have been my sister's 65th birthday.  Someplace in the 76 posts already done, I've talked about her.  Her name was, and remains, Barbara Jane Martin Canfield. She died of cancer in 1991.

I don't have many pictures, a handful, really. My brother has a few.  Barb's family the rest that survived.  My mother tossed out lots of stuff because it was painful to see so many reminders of Barb around her.  In her own grief of a parent losing a child, and then trying to work through that pain in the fog of her own bipolar disorder, with no professional guidance, only made it even more difficult. She has my sympathy, my forgiveness, and my asking of forgiveness for my own sins.

Let me tell you about Barb - she was called BJ, Bezh, and amongst my cousins, No-nee. I have no idea what that last one means but that's who she was.

She was born 65 years ago this day to Marge and Lou Martin of Troy.  She was the middle child.  My brother Bob was born in 1945 (sorry, Bob, you are NOT a baby boomer), and then I was the little surprise in 1956 (but so cute and adorable).  Barb and Bob were much older than me which of course made them the perfect babysitters, which they so loved (not).

We moved to a big house in Lansingburgh, a section of Troy, New York around 1958.  The house was historic and had cubby holes and pantries and back stairways to hide in.  A perfect place for a little kid.  Barb is already 10 at this point, and by the time I can call up a few thoughts of life at The House, I'm 5 and Barb is 13 and we are in the 1960s.  I had that big house and toys and a dog, and I was fine, and Barb was busy being a teenager.  Now and then she would bring me to downtown Troy for lunch and a run around the toy store. One thing I was aware of was that Barb smoked a lot.  But I thought everyone did (father, mother did, but my brother and I never did) and if you look at the pictures from the 60's house parties, you'll see full ashtrays, and less stuff in the peanut bowls.

So Barb lived her life and I did mine.  She graduated from Lansingburgh High school in 1966, and was voted the best dancer which she was.  She had go-go boots (Wikipedia that, if you need to).  She dyed her hair blond. She had various clerical jobs around the area, even worked with our Mom at one time.  She dated guys, all kind.  I recently found a newspaper clipping from 1964.  Barb had written on it BM & KS Forever.  Nope. She dated another guy, and then another, then the third one's brother, and she married that one.

And what a wedding.  It is still The Wedding.  I could write about it, but this wedding must be performed with actors, alcohol, actresses, lots of vomit (fake, please) and cigarettes.  It remains the focal point of all Martin weddings, perhaps all weddings.  Book me in your town, or for my Russian readers, a stay over in your dacha, and I will regale you with this story.   And Barb was the star attraction.  Mostly because she did not run out of the church screaming.

The following spring Barb gave birth to her first son, Robert, three years later came Kevin, and finally Kristen in 1980.  Now for readers of this blog, 1979 is known as not the best year in family history, as my father was losing his battle with a brain disorder, and there were financial consequences and a whole heap of crap as well.  I thought Barb having another baby would be a tonic to a tough time, a celebration of life after so much misery.  And Kristen brought that sunshine.

And Barb kept smoking.  I am no expert, but there has to be a connection between all those cigarettes over the 30 or so years she smoked and the cancer that would claim her eleven years later in 1991.  There were cookouts and fun times in between, to be sure. I have two pictures of Barb from my wedding in 1985, one she is dancing with the rest of the family, in a kicking line.  The other is just a picture of Barb, a niece, and Barb's daughter Kristen outside the Chapel where I married Jackie.  Kristen looks just like her own daughter Karly.

And then it was gone. She was gone.  She kept up the fight after the diagnosis, did the chemo, lost the hair, lasted 10 months and died in September 1991.  Her family watched their rock crumble and turn to dust and spirit, and they have lingered waiting for advice from that spirit, but they were given unconditional love as the final gift, which will have to do. I hope I too can receive it for not making it to the hospital to say goodbye. 

What's happened to Barb's family after her passing is not up to me to write.  But here's some things I remember.

She bought me some goldfish from Woolworth's, and a fishbowl and food.  The fish's names were Winklin', Blinklin', Nod and Owen.   The last name was because the pet store guy liked my sister and tossed in Owen, even though he was silver and seemed to be blind in one eye.  Owen was the pet store guy's name.  That's all he received from my sister. We all chipped in to change the water and feed the fish so they lasted a year or more, especially Owen who just kept on and on.

Barb and my mother had some big fights and in the family annals was the time when Barb said something to annoy my mother (Hint: do not annoy bipolar people) and my mother hit Barb over the head with a cookie jar.  Fortunately it was a Tupperware cookie jar (green and white), so it kept its shape while crashing into Barb's head.  No damage of course, except to the cookies within.

Barb flew out to Denver to see a boyfriend who was in the Service, and on her way back home her plane was rerouted, and she ended up in Chicago.  She called our Mom to come up with an answer to this dilemma.  Mom said, "Stay there. Get a room. Come home tomorrow." So Barb did that.  The airline rented a hotel room for her and she stayed in that room, did not leave, did not undress, did not get under the covers (luggage on the plane), but sat on the bed all night and looked up every Martin in the Chicago area phonebook.  We are not related to any of them. 

I think Barbara Jane Martin Canfield had a good life, a happy life.  I wish it could have been longer, but it wasn't. It would have been great for her to see her grandkids, but maybe she does. I am grateful she was here, and I'll tell her that next time I visit her grave.  If there is an after life, I know I'll see my mother and Barb at the Celestial Colonie Center.  We'll have lunch at Friendly's and go to Sear's.  Maybe I can get goldfish that lives forever.

Monday, March 18, 2013

Hearing Shakeszzzzzzzzzz (Part II)

Last week I told you about my ill fated trip to a local production of Shakespeare here in upstate New York.  I arrived too late to get a seat so I sat on the steps that led to the theater, and listened, but that proved futile and I left.  This past Sunday ol' do or die Tom made the trip again to beautiful Cambridge, New York and this time I left home 30 minutes earlier, and got there soon enough for a ticket and a chance to stroll the Battenkill Book Store for a few minutes.  Jackie had opted not to go so this gave her some time to relax without yours truly sucking up all the oxygen.  She gets to watch some DVR'ed shows and I get to sit with other devotees of the Bard.

At least for half the show, anyway.

I'd brought my paperback collection of Shakespeare as I like to follow along. I got a corner seat up in rafters with a klieg light shining next to me that would light up my book pages. Peachy! and snacks right next to me. Shiny! And the play started, and the light went out next to me. So much for the book. Everyone around heard the words of the actors easily.  I did if they spoke slowly.  This is the "Scottish Play"(the one that starts with Mac-) so it starts with the Three Witches and they all have one or two lines, and that was fine.  Then came the main players and they spoke so fast - to me- that it was hard to decipher what was being said. I've seen the play performed before so I knew the basic story, and should you be interested I recommend:

And it does not have a thing to do with my being a Star Trek fan.  Anyway, no matter if it was Patrick Stewart or whomever as the Thane of Cawdor, the wordsranalltogethermakingitverydifficult to understand, and there was, for some reason, this hissing sound around me like I had sprung a leak and would at some point go as flat as a Goodyear with a nail in it. My mind would give up now and then and not even pay attention to what was going on on stage. The hissing sound continued at intermission (when I left for home - why sit and hear gobbledygook when I can go home and turn on MSNBC or Fox News and hear it?) and on the drive home and even right now, on a Monday afternoon.  For the last few months I'd been getting a constant popping sound in my ears when I was laying in bed and it could prevent me from sleeping or wake me up.  And it is a change of pace from hearing the voices from the air vent.
Per the Mayo Clinic:
Tinnitus (TIN-ih-tus) is noise or ringing in the ears. A common problem, tinnitus affects about 1 in 5 people. Tinnitus isn't a condition itself — it's a symptom of an underlying condition, such as age-related hearing loss, ear injury or a circulatory system disorder.
So this will just be another thing to deal with.  I will not stop going to performances. I just have to be aware of this change and adjust accordingly.  Then I'll see what MS has in store for me after that.
Having MS is like being in a boxing match, except you're Joe (or Josephine) Palooka and MS is the Heavyweight Champion (whoever that is) or Rocky and Apollo Creed in the first match. Jab and run, jab and run.  Wear him down as he wears you down.  See who falls first, and then gets up
I'm giving another reading this Saturday at the Library in East Greenbush.  This time one of my mystery stories.  Looking forward to it.
We're nearing 3000 visits. Thank you.

Friday, March 15, 2013

Hearing Shakespeare, Living in a Closet, and Money Money Money!

I've got a lot of things to tell you about today, instead of one long story. So here we go.

1. Last Sunday I was driving to Cambridge (NY)to attend a presentation of MacBeth by a local troupe. Jackie had opted out, and I was glad to let her have some time on her own. The only new wrinkle is that I have to have my cell phone with me at all times, in case I fall down, forget where or who I am, or need to check a score (Mets fans are masochistic enough to want to keep up with failure). The drive to Hubbard Hall in Cambridge is a real stretch of back roads and horses and cows, with the occasional llama. I've done the trip many times but this time it took well over an hour and by the time I found the Hall, the play had begun and the main door shut. Ten minutes late and no way to get in. Oh, well. Now, class, here is what I did. I could hear the Scottish play from outside the door, the opening scene with the witches. So I sat there on the step and the Bard's mighty words. Bipolar reactions could be anything from tears to yelling and pounding on the door to numbness. Me, I knew the play would be held the following and vowed to leave the house at least a half hour earlier. The drive through the small towns and farmlands was soothing as was the fact the Mets were winning. A coffee beverage in the round slot next to my seat, and all was well. Also the fact that Hubbard Hall was built in 1880, and watching Shakespeare there is like watching the play over in the same place 100 years ago. I will get to it.

2.Fast forward to Tuesday, and I've got water therapy at a local center(see previous post). I left earlier than I usually do, and was heading south down the Northway (I-87) in a good mood and in my Saturn, with a reminder to get gas after class on the way home. I slowed down once I got to exit 11 (my center is at exit 9) and settled for a few minutes wait as a lot of cars and trucks, I guessed, were getting on. My class began at two PM. So I waited and waited, and waited some more, and we all stopped moving. 2PM, 2:15PM (maybe if everyone starts moving right now, I can get there)2:30 PM (hey, I've moved a few feet) and suddenly it was 3:30 pm (and as my window of opportunity fades like the sun behind the mountain) now almost 4 PM and finally we move. There's that bizarre angry part of me that says when I get stopped by some traffic problem, I want to see carnage. Busted up cars. Small fires. TV cameras. How dare you inconvenience me! Peasant! I am the great and powerful Tom! And my gas gauge is on empty! Out of my way, I have to walk around a pool and move my arms and legs. By five PM, I was home and the only actual complain is the fact that I sat seat belted for three and half hours and drove two miles, causing back spasms. But a number of people were injured in the crash, and one died. While I was sitting in my car I was listening to a Buddhist lesson on my iPad. Its always good to be reminded of patience, compassion, awareness. I hugged my wife tight when I finally got home.

3. Wednesday we met our financial advisor and started the talk that no one wants to have....death. Our adviser has been with us for a long time, and is there in good times and bad, and she has had a rollercoaster ride in her own life as well. We could speak easily of the fact that I am not as well as I was the last time we were all together, that I stammered, talked slower and would occasionally stop in the middle of a sentence and forget what point I had if any.  We started the talk about transferring assets, long term care insurance (for Jackie, not me - too late for me) and look toward other changes as time goes on.  One thing I have sworn since Jackie and I married, is that she will not be in the financial mess my mother had.  Jackie and I have worked hard to put a few dollars aside.  My parents tried but my mother's mental problems, especially after my Dad died, made it impossible, and she would not listen to anything I said. She was wiped out financially, and after her death I had to handle the mess. That and my time working in the Medicaid unit of Albany County demonstrated to me how essential it is to make sure you've got everything in order.  Wills, health care proxies, living wills, protecting assets, setting up pensions, annuities, it is needed - check it out.  I'll discuss them in another post, but at my last breath I'll know my wife will be fine financially. If she screws it up after, well, too bad.

MS is considered a disease of the young, but the average age of diagnosis is 40, a disease that affects women mostly (men do get it - trust me - or ask my father - only you can't) and you can live a full life with proper treatment and support - unless there is none available.  What you can do is determine for yourself what life may and can be, and how you, and the ones you love, can keep a legacy going but the only true legacy, as Captain Picard said, is how we live.

More soon. Thanks.

Thursday, March 7, 2013

How to be Normal, Part 2 - Naked in a small cold room

I am back in water therapy, an hour in a warm pool (90 degrees F) so that I can stretch muscles and move everything around to stay loose for another few days.  The physical therapist is welcoming, and my fellow back hurting, muscle cramping, rebuilding themselves cohorts keep things lively with conversation, perpetual teasing, recipes for good food.  My schedule for a normal week is now two days of therapy, one hour of bipolar support group, and a writing class (which is just as much therapy as anything else mentioned). This gives me three days to be with my wife and others for activities from dining out to movies to ball games, a chance to be, uh, normal.

But it is all so thin, that line we walk, and my goodness how the smallest thing can knock it off stride.  Yes, I'll get to the reason for the title in a moment.  Tuesday I was scheduled to have therapy at 2 PM.  I pulled into the parking space, and saw that one of the other folks in my group pulled in at the same time.  She told me to go ahead, and I opened the door to the health center and walked toward the pool area.  I was stopped by the reception people.

"You can't go back there, sir."

Uh-oh, said the Bad Part of my brain, here is a terrible moment in your life.

"Why?" I asked, telling Mr. Bad Part to shut up.

"The therapist had a family emergency and needed to go home. She'll be back for the 3 PM class. You can wait an hour, can't you?"

You know why she said that?, asked Mr. Bad Part.  Because you don't have anything else to do, like a job or sump'n. 

By this time my therapy cohort had arrived and we discussed options and said we'd be back near three.  As a courtesy, the health center gave us Dunkin Donuts gift cards and held on to our swim gear so we would not have to lug it back. Very kind.

Just all part of the plot to destroy you, said Mr. Bad Part.  Deeper into depression.  Whoosh City.

No one seemed to notice my mumbling as I made for the door, and drove off to Dunkin Donuts, while my cohort headed for Walmart.  I had an iced coffee, read the paper, checked e-mail, and then ran an errand.  Soon it was time to return to the health center.  I pulled in, then waited for my cohort, and we both walked in together.  Everything all right? Yes.

We went to the changing rooms, her to hers, me to mine. Only guy in the pool today, so the room was my own.  I got my trunks on and headed out. Exercise, Exercise, Exercise.  I lasted a half hour and then just took a seat. Wiped out.  Hmmmm.

If I could get in a comment, said Mr. Bad Part.  I'd like to point our that it is now 3:30, normally when you are home.  Energy and all the pills you take have done their job for Tuesday and they clock out at three.  Your brain is winding down, and you know what that means.

I left the pool, grabbed my stuff, and walked to the changing room.  I slid my swim shorts off and heard them plop on the floor. I blinked my eyes, and stood standing before my locker.  Why am I standing here naked? What do I do next?  It was just for a few seconds and then my brain rebooted and I got dressed, and got out of there.  I made it home and plopped on the couch.

I was lucky. There was no other person in the changing room, or would there be, and it was just for a few seconds.  Mr. Bad Part made it clear that this could be what waits for me as it did my father.  Maybe yes, maybe no. We shall see.

It is our choice to battle, to learn, to fight back, and maybe not win, but to make our losing as unpleasant as possible to our foe.  Mr. Bad Part should rue the day he ever crossed paths with us, and also used that lousy cartoon to represent me.  I've got less hair in some places and lots more in others.

Thanks for reading.  More soon.

Friday, March 1, 2013

Year 4 Telling Someone, Y & R style.

The scene opens with two harried young adults rushing into their parents' beautiful apartment, and then seeing their father slowly escorting their mother down the steps of a staircase that sweeps from an unseen above.  All are well dressed, reflecting the wealth of the vast Newman empire.

And boom.  Mom, that's Nikki Newman, tells the children that she has MS.  The children were stunned, and husband Victor Newman looked down at the carpet (demonstrating his emotional range) and then planted a quiet kiss on Nikki's forehead.  Everyone swore to be there and there was a hug between Mrs.Newman and the kids.  Victor looked at the carpet. Twice in one scene. Wow. He must be upset.

I'd like to congratulated the Young and the Restless daytime drama for their taking a chance with this story line.  Granted its something to do with an aging character that the younger demographic that all TV programs crave as viewers (18-35 years) may not associate with as well, and Nikki, whose age is over 50, needs a story line.  The Nikki and Victor relationship is one of the great stories in daytime drama (or soap opera) history, or so my wife tells me.

I did note a few things.  First, Nikki looks like she hasn't slept in a week, that exhausted gaze that MSer's of every kind can associate with.  Yet she doesn't mention exhaustion.  The daughter asks Nikki if she has gotten a second opinion.  "Yes, yes, Victoria, I've had all tests," Nikki responds.  She does not mention what kind of tests.  Let's assume she's had at least one MRI and a spinal tap (these are too yucky to talk about on TV unless you're Dr. Oz, I guess,).  The son Nick says that he knows very little about MS, but his father notes that "We are learning something new everyday."  He must be reading up on the latest from the MS Society, along with the request for another donation.  Victor should get with all the other wealthy people on all the daytime dramas.  We'd have this and everything other disease wrapped up next Thanksgiving.

"What caused it?" asks Nick.

"They don't know," says Nikki.  "For some reason it affects women more than men."

"How are you feeling?" asks Victoria.

"I get numbness, tremors in my hand right now..."

Victor chimes in.

"Thousands of people around the world can, with the proper treatment, and the proper medication, can live normal lives."

True enough, unless you have of the versions of MS for which there are presently no treatments, and no medications, like I have and thousands of others do, as well.  But I do accept cash donations, too, Victor.

One of the good reasons to give Nikki this form of relapsing remitting MS is that it can conveniently strike or disappear from the story line as needed.  All the actress has to do is check her script.  Alas, we don't get a script and conditions will determine good and not so good days.

Ms. Thomas, the actress who has played Nikki for many years, saw this as a chance to educate and inform viewers, and kudos to her and the rest of Bell Productions for doing so.  For some of us the hug at the end of the scene means most  when you can't take a pill to make things go away. Support from family and friends is crucial.  Take a look at the scene from Y & R when Nikki and her friend (and ex-husband) Jack talk about her condition on Feb 21 2013

No matter how you share the news of this diagnosis (I actually called my wife from the doctor's office parking lot and told her.  I knew what she would do.  She'd look up MS and find out what she could from websites. When I got home, we both had the basics to begin the ongoing conversation,) some you tell will offer help and support, but most have no idea what you're talking about, and will think it's all in your head. Actually its in your head and spine, unless its not, like me, and then you have to explain that and watch eyes glaze over.  And PSAs from the Osbournes gives very little.

Look, both the Newmans and the Osbournes are very wealthy (Yes, I know Nikki and Victor are just TV characters) and they can give their loved ones everything they might need.  There are studies showing that as income reduces access to care for MS decreases.  Might be a bit of a "well, duh" but there's not much out there anyway.  Pick your neuro and whatever treatment that person subscribes to (and gets support from Big Pharma for).  Ooops, don't have relapsing remitting MS? Oh, well. Keep a good mental attitude.  Here's a lollypop.

The one true supporter you have who will do the best job for you is your reflection in the mirror. And that Invisible Support System that has been in place since the beginning of time that lives in your heart.  Be well.  Fight on.

Здравствуйте, Россия!

More soon.