Storytellersunplugged

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Aspiration: Hope, Ambition, & Breathing

by Janet Berliner

Thank you, Mr. Steinberg for being so gutsy and so gracious. (See “Pain.”) I proffer you a wobbly curtsy and dare here to embark upon a journey into the same territory as your last
essay.

My journey into the twin topics of pain and exercise takes a circuitus route, beginning with two of the most absolute tenets of Judaism:

1. “Do not gossip; no good can ever come of it.”
2. “Do not proseltyze,” to which I would add: especially if you’re a writer.

What does #2 mean? It means do NOT attempt to induce someone to join your own belief system.

Mostly, the law deals with religion, but it also deals with
obsessive zeal. For the purposes of this piece, it applies particularly to exercise and to aspiration as in Hope, Ambition, & Breathing.

For those of you who can and do find exercise to be an imperative for creation, bless you and may you always be
able to do it. For me, here’s my story. It begins with the words Rick showed me, written by Jim Morrison:

“People are afraid of themselves, of their own reality; their feelings most of all. … Feelings are disturbing. People are taught that pain is evil and dangerous. …Pain is meant to wake us up…You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel
your pain.”

Easy to say, Mr. Morrison, and oh, so hard to do.

When I was young–and I was young once–they called me Gypsy.
Aside from writing and reading, my passions were dancing, tennis, traveling, the ocean, and the feel of warm sand between my toes. And I loved to eat, everything from peasant food to pheasant under glass, from bananas and mangoes to figs and grapes warm off the vine. I never knew boredom or depression. I walked my own walk to my own beat and, as Piaf sang, Je regrette rien. I regret nothing.

I’d be doing all of it still, but along came myasthenia. For those not in the know, it’s an orphan neuromuscular disease–orphan because too few people have it to make research financially feasible. In short form, an enzyme that carries messages from the brain to the (mostly) small motor functions dries up and goes away. There is sometimes a helpful surgical process, but it’s mostly a question of constant replacement therapy–if you’re lucky. There is no cure. There can be remission, but even then, the more you use your muscles, the weaker they get. The heck with pecs. Think eyes, bowels, throat.

“You’ll be better tomorrow.” No.
“Get those muscles pumping. It’ll strengthen them.” No.

Myasthenia also attacks your immune system. You have to take cortisone, which can be both a miracle and the devil. There are many other side issues, more as you survive–if you do. None of them are pleasant.

I was lucky and stubborn. I already had two lovely daughters, my passion for writing, and a greedy need to live. So I had no choice, really. I had to develop the patience to withstand chronic pain and keep relearning the physical functions I needed for survival.

That was around 1980, about the time my first novel came out. For a while I was too ill to write or take risks. Whatever I did was in slow motion. Slowly my courage returned and I started taking risks again. Many of them sent me to ICU, but I kept on keeping on.

And then my immune system, what was left of it, broke down still further and I developed COPD. I am on oxygen 24/7, confined to quarters, not allowed to fly except in my mind and my memory. My immune system is so depleted that the sound of a sneeze sends me into panic. I spent most of 2004 on a vent, two years of not knowing who I was or where, a year relearning how to walk, how to write the alphabet and talk, how to find a way to hear something out of ears whose nerves died.

I’m in chronic pain. Even if I could, I’m not allowed to travel anywhere except to see physicians. I can’t visit my beloved daughters and grandchildren. Since that last stay in ICU when I once again confronted my Maker, I take 30 pills on a good day, breathing treatments three times a day, and see five physicians in luckier months. Every day I contend with up to twelve hours of nausea, headaches and dizziness.

But that’s not the worst of it. The worst thing is having to contemplate the probability of giving up my dreams.

How do I dance like a gypsy, explore islands that aren’t on any map, swim with the barracuda when I am imprisoned by my body and by the walls of my room? How do I not grow angry?

The truth is I do get angry, but I also write, and I count my blessings a lot. My memories sustain me, like the one of the woman I met in St. Croix. She was ninety-eight and went scuba diving every day to visit her pet octopus and feed him cooked chicken. Her contention was, as is mine, that since we are unique, we must claim ourselves–pleasure and pain, warts and all.

That’s what I try to do, while I search for a Pea Green Boat to take me back to the sea again.

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