Found

Found

(written on Jan 19, published 2 days later in Salon.com, the day I was diagnosed w Parkinsons)

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.

~|~

20 Replies

oldestnewest
  • Awesome, absolutely awesome.

  • Thank you, Pam.

  • Beautiful.... Yes, one moment at a time...and it's OK

  • Your words are beautiful gcorrel and I bow to your literary abilities

    BUT, I am now in my 10th year of diagnosed Parkinson's and have never given in to the beast and do not accept that the progression is inevitable. I exercise daily, going through the pain barrier at times because lifting weights, I have proven, helps me to maintain a full life style

    Of course I sleep in the afternoon if we are going out at night and mornings are easily my best time - it's 06.00 in the UK and I don't need medication to function between now and 11.00 having taken my last at 22.00 yesterday - my decision and as long as there are no visitors to stress me - yes stress comes a bit too easily - I can function normally. For example I've been out getting logs and coal and answering Emails and am about to do more research into using different pathways of the brain having just written a reassuring Email to a dear friend in Australia who has just been diagnosed with early onset Alzheimer's

    I may be taking your prose too literally and if so I apologise but there is hope and positive things you can do - there is even a little blue pill which will solve one of your concerns!!

    Bob

  • What a journey you have been on. I agree with Bob. You must fight this beast. I am sure you know that what you read does not happen to everyone. That is the worst prognosis. Exercise as much as you can. I really believe this is so important and remain positive. Always remember 'you have Parkinsons. it does not have you'. Good luck.

  • My God can you write! My only suggestion is to know that your heart remains still.

  • From Birth we are all going through to mortal decay. (Thats humanity for you)

    I reckon we just have to get on with it, make the best of it, and try to have a bloody good time while doing it.

    I wish you all the best G Correll.

    just take each day as it comes some are better some worse.

  • All I can say is WOW. Beautifully written........and I totally understand what you feel. Having said that, I was diagnosed @ 42 and have had pd 25 yrs. It's not something I wanted, that's for sure.......but it's not as bad as I imagined. It has progressed, slowly, but I fight it all the way. My biggest problem is that I don't feel comfortable driving so I don't do that very often, but, if i'm having a good day.......and that always means eating no protein.....I do drive short distances. You will be ok if you think you will. Finding meds that work for you will definately help, but it's a trial and error. Good luck and thank you for sharing your story. You are a talented writer!!! Keep doing that!

  • Why no protein in order to have a good day?

    Hugs, Terri

  • It interferes with the meds absorption. It makes a big difference. Additionally, if I have chemicals/preservatives , ie: bacon, hot dogs, cold cuts, it is even worse. I try to have no protein early in the day if I have somewhere to go. The problem is...I never know what to eat. I like all the bad stuff, lol. Another huge factor is stress. Unfortunately, I have a lot of stress in my life. (not related to PD)

  • There is no P in Parkinsons

    no T in tremor, no S in Shake

    No E in Empathy

    No I in Ill

    I rode that bus to Woodstock

    So many years and tears ago

    I still wake up too early, too tired and in pain

    but when was that not the case?

    If I go halfway all the time will I ever get there

    so I'm all in, not tuckered out'

    but commited to today, now!

    so I can play with my grankids...

    write if I want to...

    everything more difficult? yes

    but doable

    So get of the bus Gus

    Join the crew

    and row baby row

    the water is rising!

  • LOVE LOVE this.. You are sooo right! Thank you. You are very talented too!!!

  • What a joy to read this today! Your powerful prose had me reliving those first moments, shaking like a leaf. The first things I saw/read upon diagnosis, after at least two years of symptoms, were neither helpful nor hopeful, and all I could see ahead was a slow slouch to an early grave. My first neurologist was a man of too-few ill-chosen words and a very cautious approach to medication. By word of mouth, I found a Movement Specialist who is pro-active, accessible, and a wonderful communicator. She helps me address every fear, celebrate each victory, and keep moving forward.

    I do not check this site often these days, so I am grateful this showed up today.

  • No need to check this site every day - I get a reminder from my regular email address each time new text appears; I'm quite certain I'd miss out on stirring prose like our friend gcorrell has displayed in here today. It's absolutely amazing, both informative and lyrical at the same time!

  • I am overwhelmed and grateful for these kind comments and useful responses. In the last ten months since being diagnosed I have been on Levadopa, Mirapex, Azilect. I will post again and I am so glad I found this invaluable community! Love to you all.

    (I tried the "find/near you" but it came up nada. There are so few resources for PD in the mid-Hudson Valley)

  • Wonderful, I felt I was with you on your journey. I am.

    Wayne

  • Dear G....Your literary gift is overwhelming....and proof that you can find inspiration even in the darkest moments. Let that gift drive you to the courageousness that you need to face this disease with all of your being everyday. Never give up ...every day is different, some good, some bad. The drugs will help, just keep trying and adjusting however you feel is best, as everyone reacts slightly different. Find the doctors and professionals that listen and hear you. Keep changing until you are satisfied....they are out there. Most of all....keep writing. You have so much more to say...and so many are listening. Best to you and yours....

  • Keep writing, you are writing what so many of us feel and have never put into such powerful words.Thank you all

  • Your words kicked us allback to 'that day". I too look at Chicago differently than others would. However my wise doctor at Rush told me something I hang on to daily. " You may never get any worse than you are today." Jan 17, 2003. (I have a little, but my life has been enriched by the wondeful people with Parkinson, that I would have missed otherwise.) We are NOT alone.

    Prayers are with you tonight.

  • Beautifully expressed, thankyou. What gems appear unbidden on this site.

You may also like...