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Wednesday, November 28, 2012 // The Statement S
Maintaining stability
PERSONAL STATEMENT by Alden Reiss
When I was 10, my dad would chauf-
feur me to school once a week. I
would sit on his lap as we drove
the 10 city blocks to my middle school.
Unlike most people who were driven to
school, my journey took place on the sidewalk
instead of the street - in my dad's motorized
wheelchair, since he was unable to walk at the
time.
I first realized there was something wrong
the summer before 5th grade during Par-
ents' Day at my Jewish summer camp in
New Hampshire. My dad, who had always
been tan, physically strong and full of ener-
gy, showed up with a cane, looking pale and
exhausted. When I asked for a ride on his
shoulders, he wasn't strong enough to carry
me.,
When I returned from camp a month later,
my parents broke the news to my sister and
me. My dad had multiple sclerosis, a disease.
that would affect his brain and spinal cord,
making him tired and unable to walk. I was
assured that he would not die from it and,
more importantly, that we would be OK. My
four-year-old cousin,overhearingthe diagno-
sis, came in afterward and asked why my dad
was "a mess," having not clearly heard about
MS.
As a tough tomboy at the time, I kept my
emotions inside, ignoring any opportunity
my mom gave to me to talk about my feel--
ings. Due to the stress that came with his
diagnosis, my dad had developed depression
and anxiety. I remember opening a pack-
age from Amazon that had arrived at my
PHOTOS BY ALDEN REISS
front door and seeing a book on dealing with
depression. I sealed the package back up and
put my emotions away with it, deciding to
not confront the situation or talk to my fam-
ily about it.
As I got older and closer with my family, I
became-more comfortable talking about my'
feelings and discomfort with the disease.
My dad's MS has its ups and downs, as the
disease typically does - it depends on the day.
Sometimes he can walk decently without any
apparatuses.
Sometimes he uses a cane. Sometimes
he uses a vehicle. And sometimes he can't
even leave our apartment because of the
fatigue. Though my sister and I were never
explicitly asked to step up and help my dad,
we would do little things. Beginning at the
age of 10, every time we approached a set of
stairs, I ran up to my dad, holding his side
that.wasn't being supported by the banister.
And whenever we would travel through air-
ports, go to restaurants, or really anywhere,
that wasn't on a couch, I felt protective of
my dad.
The scariest moments have been when
he repeats himself. For example, he'll forget
a story I have told him or is so tired that he
doesn't have enough energy to recall certain
thoughts or ideas in conversation. When I
was younger, I would get angry during these
moments, but as I got older I realized that my
anger only made the situation scarier for both
of us. There is absolutely nothing good about
feeling like you have lost your marbles, espe-
cially when you don't have control of your
brain and its contents.At51, he is fairly young,
but sometimes he has to- deal with physi-
cal and mental problems that should only be
issues for someone who is 20 years older than
he is.
My dad had one of his best years when I
was a freshman in college. He was able to
walk and do a fair amount of exercise on his
recumbent bike in Central Park. During my
second semester, we both trained to do the
42-mile New York City Bike Race to raise
money for a charity called First Descents. Not
only did we finish the race, but we also did it
in great time.
Since then, he has physically and cogni-
tively gone downhill. At the moment, he uses
a cane outside of the house, and if he is trav-
eling more than a few blocks, he has to use
the vehicle. He cannot exercise, and by 3p.m.
he feels so tired that we know to not expect
much of him cognitively.
One night, I apologized to my mom. I said
I was sorry that she had a husband who was
in so much pain, and who was unable to walk
and sometimes unable to think straight. I just
wanted him to be OK, I told her. My mom
said, "He isn't going to be OK. He isn't going
to get better anymore. But there is nothing
to be sorry for. I am still the luckiest woman
alive to be married to him and to have our
family."
This past summer, I decided to learn more
about the disease. I knew that there was a
wide range of manifestations the disease
could take on, and I wanted to see them
firsthand. After being awarded a grant from
the Stamps School of Art & Design, I worked
with the Multiple Sclerosis Research Center
of New York photographing the struggles
of several MS patients. Dr. Saud A. Sadiq,
director of MSRCNY and my father's doc-
tor, graciously introduced me to nine of his
patients, and I had the opportunity to docu-
ment many of the physical and emotional
pains that MS patients face on a daily basis,
both in the doctor's office and in their own
homes.
It was really nice getting to know my dad's
doctor. Rather than looking at his patients
as markings on a chart, Sadiq gets a sense of
each patient as a whole person, chatting with
them about their significant others, family,
friends and hobbies. For Sadiq, understand-
ing a person's lifestyle is key to understand-
ing how to treat their MS. Because of these
almost-therapeutic office visits, his patients
have come to love him. Not just like him -
they love him. I know this because each one
of them told me. I had never heard anyone
talk about their doctor the way these patients
spoke about Sadiq.
Through this project, I found out that
every person, and the manifestation of their
version of the disease, was completely differ-
ent. The medication, treatment, symptoms
and stage of MS vary so much that it seemed
to me each patient I photographed had a dif-
ferent disease.
But I found that those who had family or
friends helping them dealt with the disease
much better. There was one man who had lost
See STABILITY, Page 6B