Living with Parkinson's Part 1 - Accepting the Unacceptable published in Binah, erev Pesach 2015

 by Debbie Shapiro, a fun and inspiring woman (and a great writer too) who just happens to have Parkinson's.

I sat opposite the doctor, waiting for the words that I didn't want to hear. I knew what he was about to say, but I continued to reassure myself that my weakness and difficulties with balance were nothing more than a figment of my rich writer's imagination.

Then he said the words I had been dreading to hear. “I’m afraid it’s Parkinson’s, Mrs. Shapriro.”

I blinked – hard – to keep back the tears. My hands were shaking. But then again, they had been shaking a lot these last few weeks.

"Very mild," he continued, trying to boost my spirits. "I'll give you some medicine to help keep it under control. Meanwhile, it's important for you to exercise – I suggest Tai Chi – and of course, you should try to lose some weight. That will help with your sense of balance and will prevent you from falling."

I pointed out that I had recently started going to water aerobic classes.  And as for losing weight, well, attempting to do that has been the story of my life.

"Excellent, but try Tai Chi."

Several months before that, when I could not continue to ignore the fact that I was having difficulty with my balance, I spent an afternoon researching Tai Chi classes in Jerusalem. Most of them were held in public gardens, and all were co-ed, certainly not appropriate for an Orthodox woman, at least one who would write for the Binah Magazine!  

The doctor was still smiling.  "And I'll see you again in another three months,” he said. “Hopefully, your disease will progress slowly."

Great, I thought to myself. I don't want to live in a wheelchair! I have so much more to accomplish!

My mind was flooded with questions. Should I continue working full time? Perhaps I should devote myself to the things that are really important – take time to grow spiritually, to learn more, to share my strengths with my husband, my children, my grandchildren, while at the same time doing everything physically possible to battle this disease?

But then, if I stop working, how will we manage financially?

The tears began to flow. The last few months had been a nightmare and I was drained from it all. When I came home from work, I was completely exhausted, lacking the strength to even make supper. After a trip to the supermarket, I would just want to climb into bed and forget about the world. Instead, I'd stuff myself with junk food, deluding myself into thinking that it would give me the energy to put the groceries away.  Overcome with embarrassment at my sudden show of emotion, I smiled wanly as I said, "I'm probably the only idiot to burst into tears in your office." 

"Actually," the doctor continued, still smiling (I couldn't help but wonder if it was pasted on), "most people have a total melt down. But look at the bright side. Now that we have a diagnosis, we can start treating you. That will slow down the rate of deterioration."

Deterioration.  What a horrible word.

"What about my children?" I asked. "Should I tell them? And how do I tell them?" I couldn't bear the thought of causing my children pain.

From the doctor's smooth response, I could tell that this is a question that most patients ask.  "Mark Twain wrote that the best way to stay out of trouble is to tell the truth. Of course you should tell them. Don't keep it a secret."

 At those words, I recalled a visit that I made to an elderly friend of mine who lives on the other side of the city. After a few minutes of chitchat, her husband said, "Rachel, I think you should tell her what the doctor said."  

Rachel smiled at me, but her eyes were liquid. "I'm in the first stages of Alzheimer's," she announced without emotion.  Knowing how temporary our time together was, I became determined to visit her more often.  And today, I treasure our time together, knowing that it will soon come to an end.

In the privacy of the stairwell, I phoned my husband. "I'm finished at the doctors." Pause. "He said it's Parkinson's. I knew he would, but I cried anyway."

I decided to walk home. I couldn't face getting on a bus, and besides, I thought, I might as well start following doctor's orders and get my first daily dose of exercise. During the forty-five minute walk home, I had an almost overwhelming desire to stop in at any one of the dozens of shops on the way to buy a creamy ice coffee – my favorite comfort food. But I didn't. Instead, I gave myself a virtual pat on the back. I was proud of being proactive in my battle to remain healthy. 

I had plenty of time to think during the long walk home.. In my mind, I wrote a battle plan of how I would cope – or at least attempt to cope – with my new reality. One of the coping mechanisms that I came up with is what you are presently reading: rather than retreat into a shell of isolation, I would share my new reality with others, and through that sharing, I would give myself – and others – support.   

But then I had a problem. On one hand, it is important for me to be upfront rather than expend energy that I don't have in trying to hide my Parkinson's. On the other hand, however, I didn't, and still don't, want to define myself by my disease, and certainly don't want people around the world to know me as Debbie Shapiro, "the lady with Parkinson's." Which is why I thought at first I would write this column under a pseudonym.

When I discussed this with the editor at Binah, her response was that she feels that by using my real name, I would be making a statement to other people with degenerative illnesses that there is no reason for them and their families to go through all the trouble it takes to keep their illness a secret. 

I jokingly responded that perhaps my byline should be, "Debbie Shapiro, who is first a woman, and second a person with Parkinson's."

The editor thought that was a great idea, and, in a subsequent email wrote, "You are such a fun and inspiring person."  

Hmmm… I was really beginning to enjoy this, and since I have always been the paragon of humility, and of course, us writers always love to inflate our word count (in addition to our ego), I responded in jest, "How about, 'By Debbie Shapiro, a fun and inspiring woman, and a great writer too, who just happens to have Parkinson's?"

She loved it.

I was shocked. But the truth is, that is who I am. I am me: a wife, mother, grandmother, writer, speaker, cholent maker, laundry sorter, and an amazingly funny clown (just ask my grandchildren). I can make up silly songs at the drop of a hat, and in three languages to bat (hmm... there I go again!). I juggle at least a dozen roles while attempting to keep my priorities straight and do the right thing at the right time.

And now, I have just been handed a new hat. It's not one that I would have ever chosen, but now that I have it, I will be wearing it constantly.

But I will not let it define me.

This is going to be a huge challenge.