In May 1997 I graduated from the University of Michigan, Flint with a Bachelor of Arts degree in sociology. I was diagnosed with multiple sclerosis six months later. I was 23 years old.
From the beginning, this disease was aggressive. Within a year of diagnosis, I had tried each of the three disease-modifying medications that were available at that time. Unfortunately, I continued having flare-ups almost monthly. I spent numerous hours receiving intravenous steroid infusions to combat inflammation. At physical therapy I learned how to properly use a simple cane, but my MS was relentless. I quickly learned how to use a small-base, and then a large-base quad cane to assist me with my wobbles. When my wobbles became falls, my therapist recommended using a walker.
The walker was a practical piece of assistance, but I had a hard time accepting it. Keep in mind that I was a 27-year-old having to use a walker. It was ugly and I was too young. By 2002, despite everything I had done to slow the MS progression, I was no longer able to walk more than 25 feet and had to start using a wheelchair. I first went to a scooter, then to a power wheelchair, and finally to the more specialized powerchair I use now.
I’ve accepted the reality of using a these once-feared devices because I will not let MS beat me. In fact, I was using my scooter when I met and married my husband, Dan. The crazy thing is that Dan also has MS, and he still is able to walk and work at Central Michigan University. His job provided me the opportunity to pursue my dream of earning a graduate degree – a dream I had put on hold because of my MS.
I was accepted into the humanities program and began graduate school, but as I was trying to move forward and better myself, my MS progressed. I became too weak to adjust myself in my chair to relieve the pressure that comes with sitting in the same position for a long time. I kept complaining about pain. When I saw a doctor, he said a phrase I’ve come to despise almost as much as multiple sclerosis: “Well Jennifer, no wonder you are in pain. It looks like you have a pressure sore.”
Pressure sore. Those two words led me to months of care.
I began treatment with Karen, a wound-care specialist. Lucky for me, in addition to treating wounds she is also a physical therapist. She treated my sore by restoring the healthy skin, but Karen also wanted to keep my sore from getting worse. Most importantly, she hoped to prevent me from developing future pressure sores. Karen started investigating a better wheelchair for me. Because I could no longer effectively shift my body, she recommended a tilt-in-space chair to help me redistribute the pressure. With it I could remain as independent as possible and keep any new pressure sores from developing.
Karen – along with many other wound-care, social work and medical equipment specialists – did a phenomenal job filling out oodles of Medicare forms to help me get my new, more customized power wheelchair. Since I got this tilt-in-space chair in 2011, I can sit comfortably, have had no new pressure sores, and remain on the go — staying active in my community and achieving my goal of an advanced degree. In May 2013, I received my Master of Arts degree in Humanities with a focus on disability theory. This disease won’t beat me. I will keep moving.
Jennifer and nearly 300 MS activists will be on Capitol Hill next month asking their members of Congress to cosponsor the Ensuring Access to Quality Complex Rehabilitation Technology Act (S. 948/H.R. 924). This bill would create a separate benefit category under Medicare for complex rehabilitation technology, protecting access to customized products so that people with more advanced disabilities like Jennifer can have their medical needs addressed and remain independent. Email your members of Congress and ask for their support today. #complexrehab #MSactivist