LIVING INSIDE OUT

LIVING INSIDE OUT

LIVING INSIDE OUT By Gary Sorkin

The genesis

I noticed this thing happening to me about a year ago. It was too dumb to think it was anything but my imagination. I was having trouble putting on a jacket. I'd swing the sleeves behind me and maneuver to get my arms in, but the arms weren't where they're supposed to be. Then I'd get all tangled up. It was too weird to contemplate. I ignored it.

The first one to notice anything was my brother. He was up from Florida for a few days. I met him and his wife on a street corner on the upper eastside. We had lunch. It went fine. I hadn't seen them in a long time. When we were leaving, I went to put on my sports jacket - and got all entangled in the sleeves again. My sister-in-law had to help me. What’s going on?

We went our separate ways. I met my kids for dinner. I made sure to keep my jacket on. The next week my brother called and mentioned the jacket incident. He also said, "How come you were moving so slow?"

I got insulted. I said, if I knew you were timing me I'd have moved faster.

BUT, I knew…Something was very wrong.

The surreal life

The trouble with coat sleeves had grown to problems with other common daily movements. Showering was something to dread. The act of putting my arms over my head to shampoo my hair just exhausted me. Toweling by back and backside off with my hands reaching behind me, was, just, well, a battle.

I told nobody.

I began living my life from the outside in - instead of the inside out. What I mean by this is - I became far too aware of every thing I did. I don't want others to know. Are they watching me? Am I swinging my arms enough - or too much? Is my gait natural or does it look forced? Is that guy looking at me? I'd better swing my arms more. Are my steps in synch with my arms? You're doing okay, no one is noticing.

I was exhausted.

I live alone. Life around my apartment was like a 45 record on 33 speed. If you ever saw someone practice a Chinese martial art - all deliberate slow-motion movements - that's what I was like. Going from one room to another was like walking through thick air. I knew I was doing it: the slow steps, the hand movements. It didn't matter, I was alone. I don't have to explain.

Where did the real me go?

It was all so surreal.

Outside-in

Living outside-in has disadvantages for sure. Introspection does not begin in the third eye of the next man. I do try.

I meditate. I yoga. I Xi-Gong. I take special-can't-fail Japanese Kiiko Matsumoto acupuncture. I even volunteer to become the Master Kiiko's subject before a hundred of her students. This cigarette smoking ball-of-energy pokes my body from head to foot babbling in Japanese/English. The students nod their approval. While on the table, my hand starts to tremor. Master Kiiko has no answer. How dare I insult her.

I'm aware of each step I take, each wave of my hand, each tic of my shoulder, each blink of my eye. My finger pulses - my toes begin to tingle.

The shakes at 7-11

The convenience store is the last straw. My newspaper and coffee costs one dollar and seventy-five cents. The same as always. I am unprepared as I arrive at the counter. I reach for my wallet. It won't come out. My hand shakes. I see me through the eyes of every person in the store. Finally, a twenty dollar bill. The customers behind me are growing impatient. "C'mon, move it along. What's the holdup?" I get the change. The coins roll onto the floor. Both hands are shaking. My knees tremble. I move to the end of counter and knock the coffee off. I hear laughter.

OH GOD HELP ME!!

Walk this way

My next stop was obvious. "Let me see you walk," said the neurologist. Go straight down the hallway and then back.

Sure, no problem. “Ok now, I must concentrate - I've been walking since I was a baby - Forget about swinging your arms, the man said 'walk.'” Easy enough, now do it. NOW, WALK, JUST WALK! Just put one foot in front of the other. I'm halfway there. So far so good. A little wobbly at the start, but I'm sailing now. Ooops, stupid carpet.

How'd I do?

That wasn't too bad. It looks like you caught it early. Caught IT? What have I caught? Then he said the "P" word.

Zumba left – Zumba right

Parkinson’s. Parkinson’s. Parkinson’s disease – one, two, three, cha-cha. Clap and turn left. One-two-three, now clap and turn right. I said right.

The movement specialist called me “a stage 3.” Out of what, I asked. Please let there be ten. Out of five, you say. With luck, and proper medicine, Stage 3 can last ten to fifteen years. Or NOT.

I never doubted that I had Parkinson’s Disease. I’m not denying it now.

I’ll adapt.

I just wanted to get through the day. I tried to have the proper dollar amount in hand so that there would be no delay at the counter and I could keep on moving. When I walked from my car to the big entranceway of the YMCA, I’ll take each step with deliberation. My arms are not quite in rhythm with my legs, but I’ll make it through the front door and I can just keep on moving. When I walk up the steps to get home; It feels slow. I feel slow. Everything feels slow. The earth turning on its axis feels slow. I just have to keep on moving.

I’d stare at my wrist. I’d watch the tremor start, and then…I’d stop it with my mind. And then watch it start again.

Not write for me.

My penmanship, where has it gone to? My windswept G, my Olympic figure-skating S, even my mystical Q - gone like the wind. I can’t write. I mean I can type, sort of like a jittery skeleton with rattling bones, but there is to be no more pen in hand kind of writing. My hand shakes all over the page. Oh, this is way too obvious. I don’t like this. This will not leave me unscarred. Whilst taking a training course, I had to sign my name at the bottom of the test. Oh dear lord, there’s no way…just no way. Everyone is looking. The instructor comes over, grabs the pen from my hand, and writes my name at the bottom of the test. Who are you, blessed angel? She knew, she just knew. Come back. Don’t leave me. I don’t know where the bottom is yet.

The medication is making me beyond exhausted, beyond nauseas.

The YMCA had just added a Zumba class. Latin aerobics. I was once a dancer. The room is full of women, a few men. The instructor turns the CD on and everyone Zumbas. I try, but the movement just ain’t there. I’m out of synch, out of rhythm, out of excuses. I turned and left. The instructor asked me to stay.

“I can’t, my rhythm is gone,” I implored.

Sigh.

The Monster is in the lead.

More medicine. Too much. Too little. Sick to my stomach. Whacked out of my head.

Finally, Dr. Jeckle finds the right formula. The symptoms go away. I can move like I used to. I can put a jacket on with ease. My handwriting is smooth and easy. The tremors are few and far between.

The Monster wins.

Not for a moment does it leave my body. Not for a second do I forget that it’s alive and well inside my brain. I have no pain, I have no fever.

Out, out damn disease.

When it wants to - - it just kicks me around.

The Monster is asleep.

Life goes on. I think I’m writing better.

I met a woman.

I must admit – I’m Ok. I’m looking forward to tomorrow.

17 Replies

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  • My husband started with a very mild tremor in his right hand 40 years ago. He ignored it. It happened once more a few years later. He ignored it again. Then 5 1/2 years ago, he started dragging his foot and the tremor was more noticeable. We went to our Primary who said, "I don't know. You don't have the typical rigidity of Parkinson's so you better see a neurologist". He got the same exam as you with the same diagnosis. We don't know his stage and I'm not sure I want to know. This last year everything is harder for him. When he speaks I feel like a translator because I know what he is trying to say but no one else does. I feel your pain and I hope you find someone to share your life with. It is easier when you don't have to follow this path alone.

  • Gary, thanks for sharing your insights regarding your battle with PD. Your words are poignant and powerful.

    At times, I feel as if my body and mind have been turned inside out. I'm not the "healthy" fast- talking, walking, or self-assured individual, I once was. Yet, I'm fine for now. I was diagnosed six years ago and suspect I've had PD for ten years.

    I'm not unhappy or entirely lonely. Yet, I walk my path alone (by choice). I'd rather save my energy to heal myself. I can't expect nor do I wish someone else to take care of me.

    I too, used to dance. Now, I enjoy watching my grand daughter's dance and play. They're the best medicine of all!

    I wish you well on this strange path we PWP must navigate.

  • Wonderfully expressed. Thanks

  • You have been given a great gift for putting your thoughts on paper. Use it while you can. I'm sure that many of us struggled through the "jacket experience" as you did.

    Best Wishes.

  • Wonderfully put. It's all so true for me and scores of others. We went out to dinner with

    friends tonight and I had to give my soup to my husband. I tried to eat it but my hand was shaking too much. I had to say I didn't like it which wasn't true.

    I feel that now we are starting to return to a social life that people are watching me to see how I'm doing. I hate that. Thanks for your beautiful posting.

  • Thanks for your kind and thoughtful comments. I guess we all go through similar battles. I do something that is very helpful. I've reluctantly cut down on my work-outs at the gym, but i've discovered an ancient practice called Qi Gong. It's 2,500 years old and it makes me feel like i'm myself again - to a degree. Look it up on YouTube. Also, I've learned to think of my PD as an inconvenience instead of an illness. Afterall, it's all in our heads.

  • hi gary and all

    the soup has been a problem for me too- i have it ina mug instead of a bowl!

    i have PSP and do not have any shaking - btu my coordination is dreadfuland has goen - henc emyh dsylexic typing

    everythign has speede dup fo rme -i cannot do anything slowly!

    but a wonderful pos tot read on thsi autumnal mornging in the uK

    manyh htanks

    lol JIll

    :-)

  • Great post, I can empathize with you. In fact, I think we all can. :-(

  • Gary, you get it. You really get it. Enormous thanks for writing this and sharing. You teach me to be brave.

  • Gary here, thank you. Your last sentence touched me. I never thought of myself as brave. One foot in front of the other seems to be brave sometimes.

  • Wonderful letter - well, not wonderful, but something we could all relate to. Dressing can be very hard. Not only can I put on or take off a shirt, or anything that I have to put my arms into. And pants, underwear are just as bad. Have to hold onto something to get my legs into my pants.

  • Gary, I'm shedding a tear as I read your story - no I'm crying. No more euphemisms. I'm 64 & dxed almost by accident nearly 9 yrs ago. It was the part about sleeves that triggered the tears because although I have made progress in most areas that skill still eludes me.

    In many respects my story mirrors yours except:

    I'm a woman in a 41yr stable marriage

    my writing is as scruffy as it always was

    I still have my sense of smell

    I found a form of acupuncture that actually works (for me)

    I visit a hypnotherapist whose help I have found invaluable

    BUT the MAIN difference is that, from the start I've been able to accept that I've got PD - possibly because it came as relief to be believed that something I'd felt was wrong for yrs had a name. I wasn't mad/imagining/hallucinating/attention seeking/alcoholic I had PARKINSON'S. Thanks for your moving account, you have a talent for writing.

  • Isn't it incredible how adversity enhances creativity? I am told we PwP's are blessed with a poet's mind and a writer's talent. Mr. Sorkin, your essay attests to this. Thank you for writing it.

  • You said it all. Thanks for sharing what I've been experiencing, It's a frustrating disease Someone once said that," Parkinson's Disease is not a death sentence but a life sentence". That rings true to me ,but this is the life I have now,so I 'm going to live it the best I can. I'm blessed to have family and friends and faith to help me. I wish you the best.

  • Gary again. Thank you one and all for your complmentary and encouraging words. I think it's important to bring your PD into the open. When I first got it through my thick skull that indeed I have Parkinson's Disease, I told no one. When it reared its head at an inopportune time I used it as an excuse, but, and it's a big but, I had to ask myself, "Why am I hiding?" and "Who the heck am I hiding from?" I looked in the mirror and I knew.

    Get out there. Do your thing. It will make you a better person.

  • Beautiful. Strange to call this story beautiful, but that's what it is.

    Keep writing. Keep telling your story. It helps. It helps me. When you need a hand, reach for mine, Anemone.

    I'll send you link to my sporadic blog.

  • These goosebumps we're giving each other are beautiful. When I read your first response to my comment I started to cry. I only cry at happy things. I can feel your fingertips an inch away from mine. It's comforting to know you'd be there for me, and it goes without saying that i'd be an inch from you. I'd like to hear about your Parkinsons life; how long have you had it? What are your symptoms? Let's get the PD out of the way. I hate being defined as 'the guy with PD." That's not even 1/1000th of who I am.

    I tell people that it's not an illness it's an inconvenience. Gary

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