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."
"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.
I am so sorry, Debbie.
ReplyDeleteחזקי ואמצי
Debbie, I'm so sorry to hear about your illness. I wish I could wave a magic wand and make it go away :-(
ReplyDeleteHave you read up about treating Parkinson's With Low Dose Naltrexone?
ReplyDeleteThis site is from E-Israel
https://medinsight.org/initiatives/ldnscience/