Life with MS

I suspect that MS was slipping into my life long before I was diagnosed. As a young child, I was the most athletic of the three children in my family. I loved playing sports, being outdoors, and swimming. Looking back, there were plenty of reasons to guess that something was wrong, like stumbling when I got overheated from running on the soccer field, falling down when I was tired while playing, or not being able to do jumping jacks during practice in high school. My teammates and I dismissed it as a growth spurt.

The journey of discovering that I had MS started when I was 16 years old. I was excited to start driving, but I failed the eye exam to get my driver’s license. The eye exam led us through a series of doctors. At the time, I just wanted to fix the problem so I could pass my vision test and get my license. My ophthalmologist sent me to a neurologist. 
 
Before I could make the next specialist appointment, I went on a family vacation with my parents, older brother, and sister to the Rocky Mountains. We took a leisurely hike up a mountain. The hike up was beautiful; the hike down was not. I couldn’t get my knees to bend. I remember telling my parents, “Something is really wrong.” I was worried. They were worried too. I sensed that something was happening. My dad tossed me over his shoulder and carried me down the mountain. My dad had tears in his eyes as he carried me. It was a steep hike down.
 
I got an MRI as soon as we got back to South Florida. Everything culminated in a visit to a MS specialist at the University of Miami who diagnosed my condition as MS. My parents cried. I walked out. I didn’t want to believe this disease was my problem. I thought it was a stupid disease. I was in denial. I thought, “I don’t care.” Today, I care so much.
 
Soon after the MRI, I passed the eye test with corrective glasses. I had a driver’s license for about three years before I got into an accident. The breaks locked up when I was pulling up to a friend’s driveway and my car went into his parked car. Even though I don’t think it was because of my MS, since then I didn’t feel completely comfortable driving. I decided to stop. I had had this freedom and it felt like it was taken away. It was terrible. I felt isolated.
 
At the time, I was majoring in social work at Florida Gulf Coast University, two hours away from my parents. I started noticing leg and lower back spasms. That’s when I began acknowledging the disease. I also started using a scooter for long distances. I’ve had increasingly worse spasms ever since.
 
I transferred to college closer to home. I continued studying social work at Florida Atlantic University, which is closer to family and doctors. By that time I was using a scooter full-time. I started having trouble with my handwriting. Before I could graduate I couldn't write anymore. My fingers couldn’t hold a pen. I had to drop out of college during my senior year. I felt hopeless. I felt like MS was defeating me. Then my mom suggested that I contact and possibly volunteer with MS Focus: the Multiple Sclerosis Foundation. That’s when I realized, as someone with MS, I could best relate to others with MS.
 
I did an online search and found the MS Focus We Care; We Call Program. The program has someone with MS call others with MS and simply check in with them and hear them out about whatever is on their minds. I started as a volunteer for the program. I fell in love with the people and the organization. After a time, I was offered a position on the staff. Today I’m a support services coordinator, using the skills I learned while studying social work to help others with MS. I still do We Care; We Call check-ins, but also some general support services. I talk to newly diagnosed as well as others who’ve had the disease for decades. I feel blessed that I can connect in a real way because I really do understand what people with MS are going through. I feel that I make a positive contribution every day that I can work there.
 
Today I have a very aggressive and debilitating case of MS and in the last 12 years it has progressively taken away my ability to do many of the things that I love, like playing soccer, running, riding my bicycle, driving, playing the drums, being independent, walking, and writing and drawing with my hands.
 
Staying positive is a challenge when I’ve had to say goodbye to so many of the things that most people get to take for granted. I learned that it is really important to have a supportive group of family and friends. I have a group of buddies, including my brother, who come over and play games or cards with me most nights. I also have wonderful parents who, despite their bad backs, still muscle me out of precarious situations when my spasticity gets the best of me. I live with my parents. They remodeled their bathroom with a roll-in shower instead of a bathtub for me. They help me get dressed, put on shoes, and go to the bathroom. My brother also volunteers his time to help me as an attendant while at work. If it weren’t for my family, I wouldn’t be here.
 
Today, I know that life is not over; life is yet to begin. Some days it feels like MS is winning, but I hang in there. I learned the only thing you have control over is your attitude. Humor helps me with my attitude. One of my favorite movies is Monty Python’s irreverent Life of Brian. The characters of the movie are in a dire situation. Even though they can’t change their circumstance they all sing an equally irreverent song, which became my motto, “Always look on the bright side of life.”