By Alden Reiss, Managing Photo Editor
Published November 26, 2012
When I was 10, my dad would chauffeur me to school once a week. I would sit on his lap as we drove the 10 city blocks to my middle school.
For more photographs of the project, please visit Alden Reiss Photography.
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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 Parents’ Day at my Jewish summer camp in New Hampshire. My dad, who had always been tan, physically strong and full of energy, 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, overhearing the diagnosis, came in afterward and asked why my dad was “a mess,” having not clearly heard the 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 feelings. Due to the stress that came with his diagnosis, my dad had developed depression and anxiety. I remember opening a package from Amazon that had arrived at my 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 family 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 airports, 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, especially when you don’t have control of your brain and its contents. At 51, he is fairly young, but sometimes he has to deal with physical 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 cognitively gone downhill. At the moment, he uses a cane outside of the house, and if he is traveling more than a few blocks, he has to use the vehicle. He cannot exercise, and by 3 p.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 doctor, graciously introduced me to nine of his patients, and I had the opportunity to document 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.