A lifelong recipient of medical care finds her own calling and passion on the other side of the exam table
When I rolled into the hospital room, I looked around and saw monitors with blue and green lines and a red line that looked like something we typically see on TV medical shows. Is that a heartbeat? A sterile smell filled my nostrils. I saw machines and heard constant beeping. Nurses glided in and out of the room checking tubes and pressing buttons. But when I looked at the bed, it wasn’t me who was lying there. No, I was not the patient, not today. I collected myself and turned my attention to the person in the bed and said, “Hello, I’m Dr. Jones. I will be your doctor while you’re in the hospital.”
I’ve known that I wanted to go into medicine ever since I was a child. It’s a cliché, I know, but I don’t remember a moment when I didn’t want to be a doctor. I had done some shadowing in the ORs of a few hospitals and interviewed several doctors before I applied to medical school. In my heart, I knew medicine was my destiny, and I did everything in my power to get there.
Once I was in medical school, rehabilitation medicine became my field of interest in large part because of my muscular dystrophy. Through my own experiences with physical therapists, I knew that one session of therapy isn’t enough to address the weakness in the muscles of a person with a neuromuscular disease or even teach that person how to successfully get up off the floor after a fall. I learned early on that I was going to be a long-term patient, with lifelong issues, who would need a doctor and support system for the long haul.
These thoughts helped me realize that I wanted to provide longer, more sustained care for my own patients beyond just seeing them briefly in a hospital and giving them a diagnosis. I wanted to see how people recovered after strokes, traumatic brain injuries, spinal cord injuries and even see how people with MD progressed over the years — to provide them with the best possible care, but also so that I would know what to expect for myself.
Seating room only
When I was diagnosed with type 2B limb-girdle muscular dystrophy (LGMD2B) before medical school, I was concerned that I wouldn’t be able to accomplish my goals. Would I be able to examine my patients properly? Run codes? Or would the examine rooms even be large enough to fit my scooter, an examination table and a patient?
But not only was I able to overcome these concerns, I found out that when I was reduced from my normal 5-foot-7-inch frame to a sitting scooter height of 4 feet, there was an unexpected positive result: I became a lot closer to my patients, literally.
At my new 4-foot-tall height, I could roll right up to people sitting in wheelchairs, and I could more easily look into their eyes or look into the eyes of people lying in beds or on examination tables, and, importantly, they could just as easily look back into mine. We were on the same level.
Once that previously unknown height barrier had been broken, the simple complaints like “The food doesn’t taste good in the hospital” decreased and along came the more thought-provoking questions like, “Dr. Jones, how did you end up in that wheelchair and how does that make you feel?”
When I was doing one of my spinal cord injury rotations, I had a patient who was a quadriplegic roll up beside me in his wheelchair and say, “Hey, you got wheels like me.” That led us to having a long conversation about wheelchair models and specifications. I began to realize something at that point: It was much easier for this guy to feel comfortable with me and answer my questions about his health than to do so with my colleagues. I think that despite all the therapists, caregivers and hospital staff around — and the great work they did — he considered a relationship with someone who may have dealt with the same struggles he did to be different, to be special in some way. I understand that well.
People like me
One important way for people to form and maintain relationships based on mutual respect, and an understanding of neuromuscular disease in particular, is to be around others with the disease. So one of the biggest things I think is missing from rehab centers are volunteers who live with disabilities themselves. The same goes for other similar volunteering opportunities. No, not everyone can be a counselor at MDA summer camp or work in a hospital playroom because of physical requirements or limitations, but volunteering is such a rewarding experience for everyone involved that it’s worth finding a way to share your gifts.
Consider these tips on how to get started:
I truly believe that the medical field and society as a whole need people with neuromuscular diseases and other disabilities to get more involved in the community through volunteer experiences that will let other people know that we are here and we can succeed. For me, that passion and way to get involved is through medicine, so my personal philosophy is this: If I can’t run, maybe I will be able to help someone else run as fast as they possibly can.
Vovanti Jones was diagnosed with LGMD 2B in 2008. She attended University of Maryland, Baltimore County before receiving her medical degree from Washington University in St. Louis. She is now completing her first year of residency training at East Carolina University and will complete her training at Schwab Rehabilitation Hospital.