Losing Control in 2015: Part One: You Might Have MS or Something
In early August, my right hand went numb. I thought that maybe it was carpal tunnel syndrome from all the guitar playing and typing. By mid September, everything below my neck went numb. I was walking on pins and needles, and I could no longer play any of the songs I’ve written on guitar because I couldn’t feel the fret board. It was hard to tell when I needed to go to the bathroom. When I put on a seat belt, it felt like a boa constrictor had wrapped around my torso, and the tightness would take several hours to dissipate. After asking around online for a good Internal Medicine Doctor and getting an MRI, I was diagnosed with “some sort of demyelinating disorder.” Maybe MS, maybe Transverse Myelitis, maybe something else, or maybe none of those things. Maybe this was a freak incident and my immune system just got confused. The doctor put me on Prednisone for the inflammation and referred me to a neurologist. They are still trying to figure out what caused the inflammation/spinal cord lesions to happen, but temporary Prednisone worked. Today my entire body is back to normal with the exception of my hands, which are still numb, but significantly less numb. I can play guitar again. My hands feel like there is a cell phone vibrating inside of them at half intensity all of the time, but I’ve gotten used to it. They may stay that way permanently, or get better in a month, or in several years. Only time will tell. But I’m grateful.
Nothing like this has ever happened to me personally before, but after working with Scleroderma patients as a clinical research coordinator in my early 20’s, and my father passing away a few years ago from Primary Amyloidosis, nothing about health going wrong out of the blue surprises me. What has surprised me is how much I’ve learned about empathy this year, and just how emotionally and psychologically complex getting really sick is.
I had interviewed hundreds of patients that had gotten sick for some odd reason, not because of anything that they did to themselves. I had listened to them and learned to appreciate life more. Some of them made me feel sad, and others made me feel inspired. But I couldn’t really begin to understand their struggle until this year when I got sick. I felt like my body had betrayed me, and that was hard to deal with. It was hard to stay motivated when all of my future plans were requesting a major change. My whole body felt different, and my interaction with the world was different. Weeks without any change and I wanted to strike a compromise. “If you must take away the use of my hands, please just let me be able to keep singing, and please, please do not ever let me get to point where I lose control of my bowels.” Looking back on the patients I met, I have even more admiration for them. I feel like I discovered a new layer of empathy hidden beneath the myelin of my spinal cord, and I’m grateful for the discovery. The importance of having an advocate for you when you are sick was also reinforced in my mind. My sister Stephanie went the extra mile, reading up on these disorders and contacting me several times a day to make sure that I was getting in to see the doctors and asking the right questions. When something is seriously wrong with your health, you need all the help you can get to navigate the health care system, Thank you, Steph.
What can’t you live without? No matter what happens in your life, I want each of you reading this to know that I believe in your ability to face any challenge that comes your way. Keep your head up and expect the worst, but keep smiling and do your best. I wish you a healthy 2016. I’m ready!