LIVING INSIDE OUT By Gary Sorkin

Community blogLIVING INSIDE OUT

Posted by MyownPOV 29 Oct 201215 commentsEdit | Delete

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.

18 Replies

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  • Wow a man of many words and how. Wonderful

  • You, like many others on this site humble me with your communication talents. I look forward to reading more of your insights. Good luck with managing PD.

  • Wow. That is a terrific piece. Thanks for sharing it.

    I'm writing my own memoir. It's not nearly as descriptive as yours.

    You have been through a lot! I'm glad you found medicine that helps. Please keep up with writing and sharing your story.

  • Surreal describes it all very well I know just what you mean.

  • Thanks for this.

  • Excellent. you put my thoughts into words for me.

  • Lovely piece of writing, vivid descriptive prose.

    Enjoyable? - not sure if that is the right way to describe such a catalogue of experiences but I rejoice in the knowledge that, whatever our bodies do (or don't do) our minds are just as good as they ever were. Your "essay", and others on this site, proves it daily.

    Thank you very much

  • thank you - it's a nice feeling to know you're not alone

  • Great--describes the journey. I identify not with the details but with the trip. I was living so outside-in I thought my neighbors could hear every noise I made. This after 31 years of abusive marriage. Sure glad that's over now I have PD! Now I have fun. No one rents space in my head but me.

  • Gary here. Sometimes life seems cruel. The shooting of those kindergarten kids - can it get worst than that? When 9/11 happened and we all saw the people jump from the high floors like they were toys. life certainly seemed cruel that morning. I had prostate cancer appoximetly 7 years ago. I chose not to get the surgery, but to have nuclear seeds implanted in my bladder. It was an uncomfortable year to put it mildly. the day i was declared cancer free i drove home happy...until on the way home my hand began to tremor. The point of this is, nothing is going to stop me from fullfiling my dreams, nothing is going to stop me from loving my children. Nothing is going to stop me from enjoying my life. Period.

  • Agree.

  • YES! Thanks for sharing and inspiring.

  • Thank you for sharing. I think you described the journey we've all experienced. :-)

  • Gary, Thank you for sharing. The adventures that we are experiencing on this new life journey are fasinating to us. After having this for 10 year as of Jan 17 @ 9:37AM I have thought of writing down what I've done within those years. I have to say in all honestly we amaze ourselves at the small things we took for granted, then could not do so well, and then with meds, exericse, and self Perseverance we can do it again. And you are so right, Nothing is going to stop us from enjoying what we can enjoy. Hugs to you.

  • great writing,its like u got into my head and put my sruggles down in writing,and of course with a good dose of humor,thanks

  • Thank you for sharing! Good luck to you with the new woman in your life

  • Really enjoyed your sharing of our common experiences. I'm someone who has always been a little shy and self conscious, never wanting to be the center of attention. Well, guess what? but I try to not let public displays of disability get me down. Smile and let people help me.

  • Wow exactly!!!! I have been asked my friend to explain what it's like and I have not been able to till now thank you.

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