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.
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. 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, understanding a person’s lifestyle is key to understanding 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 different. The medication, treatment, symptoms and stage of MS vary so much that it seemed to me each patient I photographed had a different 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 so much body function that he couldn’t control his motorized wheelchair with his hands; he had to control it with his head movements instead. When I walked into the room, he was lying down and receiving his treatment. But as we spoke about the progression of his disease, he was incredibly positive and kind. He had two people with him at his appointment.
This made me wonder: Which came first, the good attitude or the support? Did those who had friends and family supporting them have people helping them because of their good attitude? Or did they have a good attitude because people loved them enough to help?
Either way, seeing some of the MS patients who dealt with their disease on their own made me really sad. It made me remember how important it is to be there for my dad. Whether he needs help or doesn’t, it can’t hurt to let him know that I’m here if he wants it.
There is nothing fun about struggle or sickness. Even though my dad has an incredibly debilitating disease with no hope of recovery at the moment, our family survives because of our love for each other — and a good sense of humor. When my dad repeats himself for the third time in one meal, we laugh about it, make jokes and give him big hugs. When we are at social events and his fatigue is causing him to talk so much that it’s annoying others, we give him a special look. He responds with a zip of his lips and a smile. Our communication and loving attitude toward the disease make it all work.
Alden Reiss is an Art & Design junior and a managing photo editor for The Michigan Daily.