Today four mild doctors on the Upright East Side, four Mosi from Mt. Sinai, tell me it's Parkinson's.
No. It's not.
They turn my hands and watch me walk, hold one arm and elbow while making me touch finger to thumb, and they nod and query – did you know you do not swing your right arm when you walk? – and whisper and type, and because they are The Best I get quality eye-contact and bright sentences and a sincere promise to monitor my decay every four months from here on in.
From here on in.
Their office is between 5th and Madison, near the Met. Nice. I go across the street to Central Park, after, to a bench below a specimen tree. Old, giant-sized, with strong, thick, twisted limbs – I decide to visit this tree after every appointment, even when it becomes new to me, and I am ever after, even when the word Tree and the idea of Limb are lost to me, and I am just the act of seeing, the shaking green, the changeable cirrus, the oaken splendor, until I am all verb and noun and no syntax.
Not a quivering care in the world.
I post my confusion on Facebook. Kindness, in clicks and chunks. It does not penetrate. I will look again later.
I go to the New York Public Library, a few blocks away. No, I stumble there. It is cold outside so it looks like my eyes are wet and stinging from the wind. Well, good. I can be myself. I look up Parkinson's in Volume Two of "The Gale Encyclopedia of Neurological Disorders" – why, of course I do – publication date 2005, page 646. Early signs: tremors (yes, severe, spreading), slow movements (yes), stiffness or rigidity (not yet). It begins on one side (yep, my entire right side, and it is starting to occur in my left hand, which means it is accelerating), the shakes increase when you rest (oh yes, night time is grimace city, manic movement, Pagannini palsy), and dizzyness and 'postural instability' when standing up (yes, going back five years; this is one of the indications that I am early onset and it is advanced; I am 56, the average age for onset for most lucky ducks is, let's see: 62).
Ah, ok. Well, shit. There is a whole sad list of signs and wonders: the reduced voice volume and impotence and foot cramps and handwriting changes and sleep disturbance – yes yes yes yes yes – and so much more. Let's peek at what's ahead: dementia, full body quaking, permanent rigidity, paranoia. And then there's the ineffectiveness of the drugs after things progress, and the side effects they cause: confusion, hallucinations, nausea, vomiting. I write down the names of the drugs and what kinds of drugs they are, and about mysterious and wonderful LSVT, and how this and that can slow it down, buy time for the 65- and 70-year-olds who add it to the list of What's Not Working. I look for encouragement. I find terror.
Don't look at me that way. This is my first day, my very first hours. Later I will soldier on and game face and all that but I want to know, I need to know, what might happen to a younger man like me, a man who will still have vigor when it is stolen by spastic distortion and hideous drugs that stop working anyway.
I write down: see: David L. Cram, "Understanding Parkinson Disease: A Self-Help Guide." I hiccup a laugh and then I lose it, Niagara Falls, right there at the old wooden table, dishonest tears of hilarious self-pity for the idea of "Self-Help", when the Self has left for Siberia, or is locked up in angry, useless jell-o. I embarrass myself, so I leave. I walk downstairs.
I call a friend who knows about grief. We chat in the musty library foyer. She talks to me in ordinary declarations and soothes me, sets me right, for about 5 minutes.
I walk. I think nothing. I think about forgiving someone. I think about the next three to five years, my realistic, fairly-certain window of opportunity. I let it sink in: it's Parkinson's.
No. It's not.
I sit again. Purebred dogs on nice leather leashes. A gangly puppy comes straight at me sitting there, like He Knows. A simple-minded licking machine: there, all better. Plucked and coifed runners in lycra smug past. Students on cell-phones, aging trust fund babies. Fucketyfuckfuckfuck. I hate this part of town.
Nannies with toney strollers, cursing at the cold. Will I know my grandchildren? It's Grandpa, who speaks in vowels and makes everyone uncomfortable. I watch those damn cirrus clouds.
I walk downtown. I go ahead and wince and blink. I let my hands shake, instead of hiding it as I usually do. It's not usual, none of it, from here on in. It just is. Let's see what happens.
It's good to feel empty. Not morose, just...blank. I am still me. Same as yesterday. I ache, though – my chest, my jaw. I feel that grief ache – that skull, sinuses, burning-eyes-brimming thing – until we emerge from the Holland Tunnel and curve into the laid-out dusk of New Jersey, on the bus going back home, upstate.
The sun has set, minutes ago. I am empty empty now, smelling diesel, feeling nothing but the pull and momentum of eight wheels and ten tons on the Garden State concrete. I look out the window – and it's this world, see?
I am just like that switched from ache and empty to ache and wonder. All the same sensations, but now I am crazy love for the lost sunlight, for the light that's still left, the after-sunset-pure-oil-paint-bue-and-orange, reflected in a canal in Jersey, for God's sake, glimpsed from a Trailways window.
How can this be? This beauty transforms me, a beauty that needs a new word, an infinite, ancient word that has never been uttered.
I think maybe I finally know what I mean. What I always and forever mean.
I mean: I rest my forehead on the cold glass and watch this light, and I lean in and hear this new old word, as old as everything in the new old world, and it kills me. I swoon. All of this, the whole life and Earth and time, all of it. It kills me.
I mean I feel this: from here on in? Hear o Israel, all infidels and freckled babies and all lovers in covers; o best beloveds, hear me: it's not Parkinson's.
I am. I am Parkinson's. And I am not it. I am Parkinson's and ok, mortal decay, and if so then I am all in, in all I see and smell and hear and touch. And the feeling lasts, I am one even with all of the endless retail ugliness of Route 17, and this un-repentance in my ignorant hand, and yes, I am war in the trenches, down the line, sure, and I am cirrus up there in the dying light, the faux rose before the black night, and I am guilty of all I have done and will do, I am, and I am my shake and grimace and tremor, my compulsive tics and lost parts, I am, and I am the decay that is to come, ok, and I am an end, I am The End, ok, but I am not bitter. For no good reason; really just because. Because...because the light blesses sodden ruin on a lousy waterway, because a final glow blesses me and my toxic byways; because a light, a light! is in me now and forever, until I lose all and end, and so I am Parkinson's. I am. I am the belled and forgotten and terrible beauty of my self, forgiven and forgiving, rocked on a bus, going home, indistinguishable from what I see and who I love and what the world is now, and now, and now, whole and turning under us all, and I am not lost.
No. I'm not It. I am losing It, the false and empty It that keeps us bleary and absent-minded and lost.
I focus now. I am mindful. Watch this: lean in with me: the water, the cirrus, the last light, me, my involuntary and rebellious me, and all of this, now now now? is just all, the unknowable word known, the it world of parts made whole, and oh, oh well, yes, later I will be lost, ok, fragmented, cruelly shaken to pieces, and and and even so NOW I own all, I let all go, known and unknown, for the sake of nothing. For corpuscular photons bent by dense oxygen. The majesty of absurd reality. Silly me.
Later I will not recognize these words, I will not know this was me, here – but now, right now, I am not lost. I am the water, I am the light, ugly and true and blazing still.
And I am Found.
No. It's not.
They turn my hands and watch me walk, hold one arm and elbow while making me touch finger to thumb, and they nod and query – did you know you do not swing your right arm when you walk? – and whisper and type, and because they are The Best I get quality eye-contact and bright sentences and a sincere promise to monitor my decay every four months from here on in.
From here on in.
Their office is between 5th and Madison, near the Met. Nice. I go across the street to Central Park, after, to a bench below a specimen tree. Old, giant-sized, with strong, thick, twisted limbs – I decide to visit this tree after every appointment, even when it becomes new to me, and I am ever after, even when the word Tree and the idea of Limb are lost to me, and I am just the act of seeing, the shaking green, the changeable cirrus, the oaken splendor, until I am all verb and noun and no syntax.
Not a quivering care in the world.
I post my confusion on Facebook. Kindness, in clicks and chunks. It does not penetrate. I will look again later.
I go to the New York Public Library, a few blocks away. No, I stumble there. It is cold outside so it looks like my eyes are wet and stinging from the wind. Well, good. I can be myself. I look up Parkinson's in Volume Two of "The Gale Encyclopedia of Neurological Disorders" – why, of course I do – publication date 2005, page 646. Early signs: tremors (yes, severe, spreading), slow movements (yes), stiffness or rigidity (not yet). It begins on one side (yep, my entire right side, and it is starting to occur in my left hand, which means it is accelerating), the shakes increase when you rest (oh yes, night time is grimace city, manic movement, Pagannini palsy), and dizzyness and 'postural instability' when standing up (yes, going back five years; this is one of the indications that I am early onset and it is advanced; I am 56, the average age for onset for most lucky ducks is, let's see: 62).
Ah, ok. Well, shit. There is a whole sad list of signs and wonders: the reduced voice volume and impotence and foot cramps and handwriting changes and sleep disturbance – yes yes yes yes yes – and so much more. Let's peek at what's ahead: dementia, full body quaking, permanent rigidity, paranoia. And then there's the ineffectiveness of the drugs after things progress, and the side effects they cause: confusion, hallucinations, nausea, vomiting. I write down the names of the drugs and what kinds of drugs they are, and about mysterious and wonderful LSVT, and how this and that can slow it down, buy time for the 65- and 70-year-olds who add it to the list of What's Not Working. I look for encouragement. I find terror.
Don't look at me that way. This is my first day, my very first hours. Later I will soldier on and game face and all that but I want to know, I need to know, what might happen to a younger man like me, a man who will still have vigor when it is stolen by spastic distortion and hideous drugs that stop working anyway.
I write down: see: David L. Cram, "Understanding Parkinson Disease: A Self-Help Guide." I hiccup a laugh and then I lose it, Niagara Falls, right there at the old wooden table, dishonest tears of hilarious self-pity for the idea of "Self-Help", when the Self has left for Siberia, or is locked up in angry, useless jell-o. I embarrass myself, so I leave. I walk downstairs.
I call a friend who knows about grief. We chat in the musty library foyer. She talks to me in ordinary declarations and soothes me, sets me right, for about 5 minutes.
I walk. I think nothing. I think about forgiving someone. I think about the next three to five years, my realistic, fairly-certain window of opportunity. I let it sink in: it's Parkinson's.
No. It's not.
I sit again. Purebred dogs on nice leather leashes. A gangly puppy comes straight at me sitting there, like He Knows. A simple-minded licking machine: there, all better. Plucked and coifed runners in lycra smug past. Students on cell-phones, aging trust fund babies. Fucketyfuckfuckfuck. I hate this part of town.
Nannies with toney strollers, cursing at the cold. Will I know my grandchildren? It's Grandpa, who speaks in vowels and makes everyone uncomfortable. I watch those damn cirrus clouds.
I walk downtown. I go ahead and wince and blink. I let my hands shake, instead of hiding it as I usually do. It's not usual, none of it, from here on in. It just is. Let's see what happens.
It's good to feel empty. Not morose, just...blank. I am still me. Same as yesterday. I ache, though – my chest, my jaw. I feel that grief ache – that skull, sinuses, burning-eyes-brimming thing – until we emerge from the Holland Tunnel and curve into the laid-out dusk of New Jersey, on the bus going back home, upstate.
The sun has set, minutes ago. I am empty empty now, smelling diesel, feeling nothing but the pull and momentum of eight wheels and ten tons on the Garden State concrete. I look out the window – and it's this world, see?
I am just like that switched from ache and empty to ache and wonder. All the same sensations, but now I am crazy love for the lost sunlight, for the light that's still left, the after-sunset-pure-oil-paint-bue-and-orange, reflected in a canal in Jersey, for God's sake, glimpsed from a Trailways window.
How can this be? This beauty transforms me, a beauty that needs a new word, an infinite, ancient word that has never been uttered.
I think maybe I finally know what I mean. What I always and forever mean.
I mean: I rest my forehead on the cold glass and watch this light, and I lean in and hear this new old word, as old as everything in the new old world, and it kills me. I swoon. All of this, the whole life and Earth and time, all of it. It kills me.
I mean I feel this: from here on in? Hear o Israel, all infidels and freckled babies and all lovers in covers; o best beloveds, hear me: it's not Parkinson's.
I am. I am Parkinson's. And I am not it. I am Parkinson's and ok, mortal decay, and if so then I am all in, in all I see and smell and hear and touch. And the feeling lasts, I am one even with all of the endless retail ugliness of Route 17, and this un-repentance in my ignorant hand, and yes, I am war in the trenches, down the line, sure, and I am cirrus up there in the dying light, the faux rose before the black night, and I am guilty of all I have done and will do, I am, and I am my shake and grimace and tremor, my compulsive tics and lost parts, I am, and I am the decay that is to come, ok, and I am an end, I am The End, ok, but I am not bitter. For no good reason; really just because. Because...because the light blesses sodden ruin on a lousy waterway, because a final glow blesses me and my toxic byways; because a light, a light! is in me now and forever, until I lose all and end, and so I am Parkinson's. I am. I am the belled and forgotten and terrible beauty of my self, forgiven and forgiving, rocked on a bus, going home, indistinguishable from what I see and who I love and what the world is now, and now, and now, whole and turning under us all, and I am not lost.
No. I'm not It. I am losing It, the false and empty It that keeps us bleary and absent-minded and lost.
I focus now. I am mindful. Watch this: lean in with me: the water, the cirrus, the last light, me, my involuntary and rebellious me, and all of this, now now now? is just all, the unknowable word known, the it world of parts made whole, and oh, oh well, yes, later I will be lost, ok, fragmented, cruelly shaken to pieces, and and and even so NOW I own all, I let all go, known and unknown, for the sake of nothing. For corpuscular photons bent by dense oxygen. The majesty of absurd reality. Silly me.
Later I will not recognize these words, I will not know this was me, here – but now, right now, I am not lost. I am the water, I am the light, ugly and true and blazing still.
And I am Found.


Salon.com
Comments
Damn man..
What I'm trying to say -- & not very well -- is that we also offer "clicks & chunks" of "kindness." And a willing ear for eloquence, joy, laments, whatever you give us. Wishing you peace with this crappy life-dealt card in this "strange & terrible world."
and NOW: You ARE the light.
And I am Found." Yes, I think this is true. And I am truly sorry for this thing that has entered your life. I loved your "leaning into it". I think perhaps that is the place we can find joy. R
oh my.
It's a one way trip for all of us. You happen to know how yours is gonna end.
That's all.
You're a writer.
♥║╔═╗║║║║║║╔══╣╔══╣╔╗╔╗║♥
♥║╚══╣║║║║║╚══╣╚══╬╝║║╚╝♥
♥╚══╗║╚╝╚╝║╔══╣╔══╝─║║
♥║╚═╝╠╗╔╗╔╣╚══╣╚══╗─║║
♥╚═══╝╚╝╚╝╚═══╩═══╝─╚╝ I am so glad I FOUND this....Cheers!
This
r.
Lew
I am very sorry you've been slammed with this terrifying news.
Algis posted this on my work this morning, and I pass it on to you:
* BEAUTIFUL SOUL AWARD!**** Once you have been given this award, you are supposed to paste it on the wall of AT LEAST 5 women/ men who deserve it. If you receive more than 3, you know you are truly special....You rock!! Its just to appreciate each other. It is always sweet to know that someone thinks you're a wonderful and special Person ♥♥♥ you are dont ever forget.
.....
It is not the gift, but the thought that counts. You have made our world here reach beyond its small dimension of electronic time and space. Thank you for sharing.
You are the water - You are the light
You will burn bright for a very long time
and your words will bring the planet peace
rated with love
Peace.
If you don't mind a suggestion, you might want to read Michael J. Fox's autobiographies in which he details his life with Parkinson's. They're inspirational, telling, truthful, funny and sad, all at once. He is an admirable person.
There's also a website detailing his efforts in Parkinson's research and funding: www.michaeljfox.org/ To date, the foundation has raised $270 million in cash and partnerships.
cry I AM,
brutal truthful essay
all this is
yes...
you are more
and yet again
more
You are fearfully and wonderfully and beautifully YOU. This newest mountain you will climb will not be one you will climb completely alone or without the love and steadiness of those who have been fortunate to have you in their lives - both in arms reach and at a distance.
These words you have written, the tears you have brought to our eyes, are evidence, beyond all else, that you are, indeed, Found.
There is never much to say, except "shit", which is oddly comforting. You come to recognize those who use a certain tone of voice, a look of pity in their eyes. They aren't invited to sit on the bench. You begin to squeeze the juice out of every day, suck each one dry like a husk. Maybe you'll write about it some. Just like this.
Shit.
Shit.
Shit.
Sending you good thoughts and prayers, Greg.
That is the space where I would have put words, if I only had them.
"It's Grandpa, who speaks in vowels and makes everyone uncomfortable."
My grandpa's voice became this way, for the same reason, but I knew there was much more to him despite there being only six shared years.
You will always make an impact.
http://open.salon.com/blog/steve_blevins/2009/04/01/a_world_no_less_sublime
Lezlie
R
May your candle burn at both ends
make a mockery of foes & find comfort in friends
bathing us all in a lovely light
that will never be extinguished
Strength & Honor to you Greg
~R~
This is absolutely wonderful writing. Vital and deeply inspirational. All I've said before I would say again now. You're an incredibly talented soul with an awesome heart. I'm honored to know you.
Thank you for giving us your best - always.
Rated and appreciated with much, much, gratitude.
Correll can obviously address the soul. No, wait. This essay goes beyond soul! It goes to the God Particle.
And his God Particle is in 100 percent perfect health.
I lost my dad to Parkinson's 4 years ago. After spending so much time with him during that journey, I'd never wish the experience on anyone. He was 60 when he was diagnosed, after showing symptoms for a few years. We lost him when he was almost 73, and he never gave up until the very end.
I hope that finding moments of beauty in the here and now can give you comfort on your journey. Let your family and friends be with you and help you.
Your writing unleashes. I am pole'd.
Am thinking of you. So hard.
You have many allies, in the medical world.
Best,
Cmc
One of my teachers in my ministerial studies used to tell me that it was important to teach folks how important the words are that we choose to use to complete the sentence that begins with "I am." You've demonstrated a transformational understanding of the grounds for that lesson and I am so glad that you are here.
Please watch for my:
Unforgettable Nam Era Hippies
Jim
I should also like to say that this was not only the best thing I ever read on OS, it was one of the best pieces of writing I have ever read.
And Big Salon, cover, go figure. Emily is so sweet, she warned me it might be a bit rough in the comments. Those darn internets. It'll be good for me. I ain't fragile, just shaky. I said all comments reflect on the commenter, not us.
Love love love to all sentient beans. Watch the skies!
R+++ [again ;-)]
Anyway, I can at least do it here, and tell you how your transcendent writing leaves me wishing with all my heart that I could wield words and sentences with such grace.
"A stunning piece and clearly one where a select group of readers find themselves/ourselves nodding fascinated and horrified at the
piercing light he/you shine(s) on those private dark moments as we gasp with recognition and simultaneously take great pleasure
in his/your fine and generous perceptive spirit."
How your words touched me ... and then ... I saw Molly’s words to you ... words of love ... all of these ...