The tragedy of this picture, as ridiculous as it is, is that I only have a handful of pictures of that guy.
Dad was not perfect, even before he was affected by HD. He was an often distant, strict person who should have been way more involved in the lives of ALL OF his children. Due to whatever the circumstances were, I never met my grandparents because of him.
People tell me that Dad was a much different person before the two great battles in his life. Viet Nam, where he proudly served and was awarded a Purple Heart, and Huntington's Disease.
Dad's legacy in my life was profound, obviously, I wouldn't be here without him, but the biggest legacy he left us with, when he ultimately lost his fight in 1996 is this.
Due strictly to family history, and nothing that I have done wrong, I have a 50% chance of inheriting a disease that:
...caused people to be burned at the stake as witches in the middle ages due to the chorea--involuntary jerking type movements that are symptomatic of HD
...will most likely cause the victim to become violent, aggressive, depressed and suicidal--sometimes all at once
...will cause the victim lose the ability to speak and reason
...will cause people to stare at the victim
...will shut down the body and mind of the victim until they are unable to do anything for themselves.
...has no cure
...may be passed on to my children--these children:
Oops, that's Rachel Maddow, wrong picture. Should've been this one, of my oldest son, Alex:
Who have no celebrity doppelgangers.
A lot of people have asked me why I have spent almost a year of my life trying to get this Concert of Hope thing together and ready for the public on October 11th at the Meeting Place on Market here in Lima. They've asked me why HD and not something else, something that people know more about, something that it's 'cool' to donate money to help.
The people pictured above (well, not Miss Maddow, who am sure is lovely) matter more to me than anything else ever could, and if I could do a small part to help them down the road--if the IF becomes a WHEN--then this fight will be worth it to me. THEY are why I'm doing this show, why I am donating so much time, energy and effort to put together this concert.
My sincere hope is that we raise a ton of money for HDSA at this benefit concert, and that we raise a ton of awareness for HD. The craziest thing is, when in the process of doing this show, people have rudely tossed my fundraising letter aside, I've been told several things by several people that turned out to be not true, and I have had to downsize this show--twice. However, I have also made contact with a half-sister I only kind of knew I had, and that is awesome to me (everyone say Hi Robin). I've also learned who my true friends are and know who I can trust, if I ever feel foolish enough to do this show again. Thank you to everyone who donated, and will donate, and thank you for helping us to realize this dream. The long, difficult, but not impossible dream of helping those affected--or potentially affected--by HD.
I'm sure I'll edit this a million times, but now, 5 weeks out, it's important to make this fight a personal one. Thank you for joining me in it, even if it's just in spirit. But come to the show, I promise it won't suck.
Here's a good link to the science of the disease: http://maptest.rutgers.edu/drupal/?q=node/401
Huntington's Disease was called "Huntington's Chorea" back when Woody Guthrie was
diagnosed with it in 1952. He inherited the deadly degenerative brain disorder from his
mother, who died from it at the age of 41...when Woody was 15 years old.
After a brave struggle, Woody Guthrie succumbed to Huntington's Disease
on October 3rd, 1967. Two of Woody's daughters have died of the disease as well.
I got this thing called chorea in my head
Wanna walk but I fall down instead
folks say "Woody, he's just drunk again"
but I haven't had a drink since I don't know when
besides...I only drink when I'm alone...or with somebody
My arms felt funny moving all the time
and sometimes my head didn't feel like mine
kept telling myself it was the Ballantine Ale
and them jugs of wine on the writing trail
I prefer a disease you can sober up from
Chorea took my mother so it's been waiting on me
us Guthrie's got brains like them bourgeoisie
if you're not careful you can get lost up there
like a poor man searching for a millionaire
I got more friends than dollars.....but I lose 'em both the same
Sent me to a hospital I opened the door
saw my reflection in their nice clean floor
don't mind seeing someone who looks like me
but I do get nervous when he stares back at me
so I ran...but when you're dizzy you go round in circles
Friends said "Woody it's good you're here"
then they'd slip out the back door and disappear
it's like no quite knowing where you've bled
when you wake up with the sheets all red
I try not to bleed red anymore 'cause they'll call me a commie if I do
A doctor George Huntington....he gave it the name
and all these years later it's still the same
no cure but the patience of the ones you love
and the busy schedule of the Lord above
you can usually count on him....but's he's mighty slow
I'll come clean...it's not fun on the inside
for protections your arms tied to your side
I can hear you and I know what I want to say
but my brain no longer works that way
maybe I said too much already....it's one way to shut me up
If you can't remember how I died remember how I lived
and if you can find it in your heart to forgive
know that the piece of brain that had to fall
never affected my love for you at all
I'm gonna play this thing 'till they find a cure...
