This isn’t a story about being diagnosed with transverse myelitis. Well, it kind of is, but not in the usual way these are written. I’m sure if I did follow the traditional narrative, the details of my onset would ring true to some and seem completely foreign to others. Such is the case with something like transverse myelitis.
No, this is a story about hope. After all, this story is for something called Hope Ambassadors; however, it’s more about why I’m hopeful and less what I’m hopeful for. Obviously, I’m hoping for a cure so that no other person has to live with one of these disorders. The reason I’m hopeful that a cure can become a reality is simple: Sandy Siegel and the rest of the Siegel Rare Neuroimmune Association (SRNA).
I met Sandy five years after my diagnosis. Before that day, I didn’t really know anything about the organization. I was a member. I received an occasional newsletter or email that, to be honest, sat unread on the counter or in a folder. At the time, I worked at another non-profit (an art museum) and assumed SRNA (or TMA as it was known then) operated much in the same way. I pictured an office building with a human resources department, a marketing team, multiple managers, and more. There were copiers and water coolers where the employees gathered on Mondays and talked about their weekends. As I sat across from Sandy, it took one sip of coffee for me to realize this wasn’t an accurate picture.
There was not an army of PR agents at his back, but an army of volunteers and small group of employees (ten!) that all worked from home. In the following months I would learn more and be even more amazed that all the work I had been essentially ignoring was being done by so few tireless people. There were articles in newsletters that would have increased my understanding of my disorders had I read them. There were podcasts with real experts in the field of neurology that would have helped me improve my condition had I listened to them. For five years, I was given resources that could have changed my life much sooner.