By Debbie Shapiro, a fun and inspiring woman and a great writer
too, who just happens to
have Parkinson's
I've
always been the type of person who likes to talk, talk, and talk some more (which
is probably why I became a writer). My best friends are good sounding boards,
who will listen quietly as I rehash with them whatever it is that I'm going
through and then enlighten me with their insights and feedback. Then, once I'm
all talked out, they give me the space to think things through. Sometimes, it
takes just for a few hours; more often, it takes a few days, and occasionally,
it might even be a few weeks until I digest all the information and am able to form
my own opinion. And of course, as a friend, the relationship is reciprocal.
But
now, although my friends are really amazing – they empathize with my challenges
and encourage me to do whatever I need to do to stay healthy—they cannot really
understand me. I need to connect with people facing the same challenge.
That
is the reason why, on the very same day that I was diagnosed with PD, I
contacted the Israeli Parkinson's Society to find out if there's a Parkinson's
a support group in Jerusalem. "Yes," I was told. "There is one,
and it's in English! This Thursday they will be meeting for the first time after
a two month hiatus."
But
the meeting was a real disappointment. Four elderly patients, two with full
time aids, had come together to discuss who would be the one to run the future meetings,
since the person who had been doing it until now was unable to continue - for health reasons, of course. And then, since
my tremor and lack of balance are not obvious, the women were curious to know
why I thought I have Parkinson's. After I finished listing my symptoms, one of
the ladies commented, "Oh, yes! That sounds exactly like what Sara K. had.
The doctor also thought it was Parkinson's, but he was wrong. She really had…"
and with that she named a much more serious and usually fatal degenerative
disease.
"Right!
I remember her. She was such a nice lady," added another. "What ever
happened to her?"
"She
died."
"Why
yes, of course. How could I forget. Nebuch…"
"She
suffered so much! But it was still a shock when she passed on."
All
four women nodded. "Those poor orphans," sighed the woman in the
wheel chair. "She left two teenage sons, and a married daughter."
"And
do you remember so and so, what she went through?" asked another. "The
doctor also diagnosed it as Parkinson's. But of course he was wrong."
"Well,"
I felt bad interrupting their reminiscing but this was not the type of support
I was looking for. "Let's hope I 'only' have Parkinson's."
Everyone
laughed. But it was bitter laughter.
Although
I did not find the support and friendship that I was hoping for, the evening
was not a total waste. I learned some very important information: that if I
don't want to lose my Bituach Leumi Disability payments (akin to America's
Social Security Disability payments) I must apply before the official
retirement age, which is presently age 62 for a woman and 67 for a man. So the following day, I contacted Rabbi
Goldental of Degel Hatorah's Public Assistance Program for his help in navigating
the enormous amount of red tape involved in dealing with Israeli bureaucracy.
Although at the time of my writing this column I am in the midst of getting my
application approved (hopefully), I want to publicly express my gratitude to Rabbi
Goldental for both his empathy as well as his assistance, and recommend that
anyone living in Israel in need of help in dealing with Bituach Leumi contact
him.
When
I returned home from the "support group" I felt empty and sad. But according
to a famous saying, ice cream cures all woes (ok, I admit, I just made that up
- but it's true, at least
sometimes…), so after a few hours of
self pity and (a minimum of) one ice cream cone, I decided to stay away from support
groups that do not provide me with positive support. Instead, I'll focus on
maintaining my health, without worrying too much about the future.
And
the truth is that without being over-optimistic, there really is a lot of hope
for the future. The Michael J. Fox Foundation, the Parkinson's Foundation and
the Parkinson's Disease Foundation, to
name a few, are presently investing millions of dollars into finding a cure for
PD, and there are several that appear to
be very promising, including vaccinations, drugs to stop the progression, light
therapy, and stem cell research. And as
I wrote in a previous column, I am doing everything in my power to control my
Parkinson's. Yes, it really is exhausting
to go swimming or to work out at the gym every day and when I come home I need
to rest in bed for at least an hour, but at the same time, it's also a lot of
fun!
So
what am I doing for peer support? I am grateful to have found a couple of
creative women, both writers who are leading a busy and fulfilling lives while staying
proactive about PD. Like me, neither of them have the time or energy to keep their
PD a secret. As one so succinctly told me, "Being upfront about what I'm
going through gives me the freedom to do what I must do to stay well. I don't
have to waste precious energy coming up with all kinds of excuses for saying
'no,' or for missing a family simchah. People understand, and they're not upset
with me." And the truth is that to the uninformed, finding time and energy
to go swimming or exercise at the gym while missing a close friend's bar
mitzvah or ordering takeout food appears, well, WEIRD – which is why it's so
important that we remember to judge people favorably.
That
reminds me of something that happened some twenty five years ago. I had
returned home after being hospitalized for blood clots in my legs. Since my
blood was continuing to clot, I was under strict doctor's orders to remain in
bed with my legs elevated or – believe it or not - walk briskly! The doctor actually told me that I must take a
45 minute power walk each day, but that the moment I stopped walking, I am to return
to bed with my legs propped up above my heart level with a minimum of three
pillows! Each time I left my house, I wanted to wear a huge placard with the
words "Dan L'kaf Zechus," "Judge me favorably" written
across it in huge neon red letters. I could only imagine what people must have
been thinking. Since I couldn't cook, we were receiving meals from the local
chessed organization. Since I couldn't clean, seminary girls were coming to
help out in the house. And what was I doing? Gallivanting around the neighborhood!
Judging
our friends and neighbors favorably is really the greatest support that we can
give them. Being surrounded by friends,
neighbors, family, and even strangers who can look beyond the externals and realize
that they might not be aware of the full story, that they might be missing
important pieces of the puzzle, really does make all the difference.
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