One man's philosophy is another man's bellylaugh.

Jeff L. Howe

Jeff L. Howe
Location
Strasburg, Pennsylvania,
Birthday
April 19
Company
Visit the website: jeff-howe.net
Bio
Jeff Howe is a bonsai enthusiast and harmonica player who has very good reason to believe that the Universe tastes like a cheap buck-fifty melon. He is a product of Walled Lake and a former Poetry Slam Champion of Milwaukee. He once shook hands with Rocky Colavito, opened for Leon Redbone and took a piss next to Mose Allison (no hands were shaken). All things considered, his best single day was July 4th, 1987 when he marched in the Marmarth, North Dakota parade in the morning, discovered a rare dinosaur skull in the afternoon, and then sat in playing harmonica with a drunken cowboy band until way past tomorrow. It's been downhill ever since. Jeff is a misemployed geologist who specializes in interpreting rock outcrops at 70 miles per hour. It's a gift. His daughter loves cows. ................................................................................................................... FOR MORE STORIES, PHOTOS AND HARMONICA RECORDINGS VISIT: jeff-howe.net

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MARCH 4, 2012 11:39AM

Live-Blogging Parkinson's: So NOW What Do You Do?

Rate: 15 Flag

Fortunately, realization came to me slowly rather than suddenly.  There was no revealing moment of great suspense: no shocked faces, no crying loved ones, no wine glasses dropping suddenly to the floor.  Instead it came to me in small increments of understanding: a problem, the possibility, Google searches, increasing probability, tests, diagnosis, more appointments... 

Because this process took place over a period of a couple years, I was a little better able to work through it in my mind, having little glimpses of intermittent quiet between the stages in which to absorb it.   

But it still occupied me twenty-four/seven.  I was quiet a lot. I was sad.  I pondered the situation and weighed the options.  What does this mean?  Do I spend the rest of my days pitifully shaking and staring off into tomorrow like Muhammad Ali?  Will I lose my mind?  What happens when the pills no longer work?  How much time do I have?  Is there nothing ahead of me but deterioration?  Is there any up side?  Maybe I don’t even have PD… maybe I have something else?  Would that be better or worse?    

And for days, weeks, months, that’s what you do.  You try to look at it from all angles, hoping that you’ll stumble upon an angle that you haven’t’ thought of yet.  You feel alternately happy and yet sorry for yourself:  “Why me?  Why now?  Why didn’t this happen to the boss or Jerry Sandusky or Mohammar Ghadafy instead?” 

You write down all of the things that are changed… some forever.   Priorities are rearranged, belongings are gotten rid of, money is marshaled and options are cast out in full view like a spilled bag of marbles.  “… if I had it to do over again, what would I do..?” 

“… if I had it to do over again….?” 

And then you realize that, in a way you DO have it to do over again.  Apart from the Parkinson’s part, what happens next is largely a clean, open slate.  Sure, life has always been an open slate but now the game has a name and it has a time limit.  The world is no longer your oyster, that’s a younger man’s game.  But that’s OK too because you’ve had some oyster…not a lot, but enough from time to time to know what it tastes like if only in isolated little bits.  You’ve been there, you’ve sampled it; on occasion you even rolled in it.   

So how do you react?  After the initial shock wears off and you finish the trying-to-make-lemonades-out-of-lemons bit, you finally muster up all of the “well this is a fucking, rotten, ill-timed, inconvenient, pathetic, unfortunate thing to happen” that you can find and then stew in it in self-pity. That one takes a while. 

But at some point you start sticking your head out the other side and looking for something positive. I’m still somewhat shocked but grateful that I’m finally at a point of having an understanding of the situation. Oh, don’t get me wrong, it’s STILL a shitty situation, but rather that fret over what I’ve not done in my life, I’m trying to get to work GETTING the things done that I can… as many as possible. 

Look at it this way:  you didn’t just die in a horrible automobile accident or get murdered walking down the street.  You haven’t been told that you have terminal, inoperable cancer or that you are about to be eaten alive by vicious, flesh eating beetles.  Granted those things might yet happen but at this point you only know that you HAVE PD.  You probably have a few other things that are racing to kill you… we’re all dying of something.  But at least you know what you have.  You can make plans, put priorities in order. 

I’ll tell you one thing, this focuses my priorities.  I’m no longer pondering old age and wondering how I’ll ever save some money to die on.  I’m now more inclined to focus my energy on hustling to get my art out.  It will outlive me. 

The biggest realization for me is that this, right now, this time right here is probably about as good as it’s gonna get.  At least physically, it’s all downhill from here.  All of my life I’ve had the trusted fall back fantasy of Someday, that rosy in-the-future place where I’m rich and famous, and content, living on a tidy farm Up North along the Betsie River.  But I know that, even should those fantasies finally come true - I’ll be nothing but an ever crippling old man to enjoy them. 

To live with this Parkinson’s you need to realize:         

1. You won’t be getting any better        

2. You don’t have to go downhill getting worse.

3. It may be the end of a lifestyle but it’s not the end of your life.   

Now get back to your corner and resume your sulking. 

 

© 2012, Jeff L. Howe, all rights.

 

This post, plus harmonica recordings, a graphics (not graphic) slide show, and posts on exploding babies, meatballs and the invention of sex can be found at jeff-howe.net.  Go there now.

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How do you get those babies to explode? Trinitrotoluene baby food? Or can you put something in the meatballs then inject the meatballs into the babies. But if you get a bulimic baby it will regurgitate the exploding meatball before it can do its job. Life is full of these perplexities. Good thing we have a Prez, Obongo, who's packing explosives in his fly....see my latest post 'Obama Opens Fly To Iran...'...wink
And for the rest of us, we could get eaten by flesh eating beetles tomorrow. Thanks for the reminder to live life while ya still got one to live.
Jeff,
For what it's worth I empathize. No sympathy here - I've got neuropathy in my hands and feet from type II diabetes and I'm looking at the inevitable onset of Alzheimer's. I know what's coming and have already experienced the first symptoms. If I'm lucky I've got another ten or maybe even fifteen years before I'm completely debilitated. Don't know how much time you have before PD takes your life over, but I hope you have the chance to do what you need to get done.
JMac
JMac: My time frame is about the same as yours. Keep in touch.
Good live blogging, Jeff.
A friend my age was diagnosed with MS about 5 years ago ( we're pushing 60 ) & already she's in a wheelchair. Fortunately her husband has the time to look after her, drive her to her little gallery each day & bring her home at night.
So she chats with visitors & sells a few pictures each week, & loves the upside.
I didn't know there could be an upside 'til she pointed it out.
Taking nothing for granted ~ 'priceless.'

ps. Rolling around in oysters ... not so sure.
I had breast cancer when I was 35, a time when I had two young daughters and was still carrying the belief that life is infinite. I don't wish disease on anyone, but knowing that I had life for today but not forever changed me for the better. I was less anxious, more open, and more appreciative of what makes a good life. My mom had been diagnosed with Parkinsons about five years earlier. She went on to live into her eighties and I'm still here finding some joy in each day.
As Kim said, take nothing for granted. Live the upside. Day by day.
Good minute by minute accounting from a guy who probably always knew every silver lining has a black cloud around it.
From the moment of birth, we are all living on borrowed time. It's too bad most of us have to get slapped in the metaphorical face to live our life as if every day was our last -- or at least that every day truly matters.
Nice written Jeff. I especially liked "The world is no longer your oyster, that’s a younger man’s game. But that’s OK too because you’ve had some oyster…not a lot, but enough from time to time to know what it tastes like..."
Bless you, Jeff. As Eleanor Roosevelt said, "Yesterday is history, tomorrow a mystery, today is a gift." Helping care for my mom with dementia for the last ten years has taught me this, "There's no time like the present." Hugs and good karma.
Excellent attitude Jeff. One reason I write, or I'm learning to write, is to leave something behind. I'm a lot closer to the end than to the beginning and now, as long at they have this thing called the internet, I'll live. In hundreds of stories that I have written, along with my poetry and even my political thoughts and some things I wanted to people to know. I hurt to much to worry about tomorrow, so I'll worry about that tomorrow.
We ll crap.
Yeah yeah...I know...other people have issues too, but for the one you are facing, I am sorry.
Put on your list that you also inspire others. Cause that's what you did here.

If a person where to ask me, "What does courage look like?" I'd tell them to read this.
I still do my share of sulking.... Like now for instance.
Chicago Guy - Wow. That's a powerful thing to say. I'm putting that one in the Bank. Thanks. Actually, through this blog I'm meeting a whole new group of people. I've suddenly become a part of PD society. This part is actually kind of fun.
i've envied you for being a terrific writer for three years almost. and *now* i get to be jealous that you're handling this with such grace? pffft. actually, i'll take my sarcastic hat off and say i'm with kim and roger. and you, of course, sulky corner-sitter or not. you're a pal and you've got this covered, jeff.
Just a little anger there...