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.
I left that meeting and agreed to become a support group leader. A few weeks later, Sandy invited me to have dinner with him and Pauline. Many of you know her story and her place in the history of the organization. Everything everyone says is true. She was the first person I ever met face-to-face with transverse myelitis. I won’t ever forget that.
My first support group meeting included me, my friend, Sandy, Pauline, and one other person. If you had asked me prior, I would have been disappointed that only one person I didn’t know showed up; however, that pretty much tripled the number of people I had met up to that point who were diagnosed with transverse myelitis. I was so nervous before, but I didn’t need to be. One, Sandy and Pauline answered every question that person had for two hours. Two, it wasn’t about how much I did or didn’t know about rare neuroimmune disorders, which at the time was embarrassingly little. It was about creating an opportunity for someone and being present.
So, my first request is that you act smarter than me and take advantage of what is available. Read the newsletter (now called SRNA Magazine), register for the Ask the Expert podcasts if you are able (or listen to the recording in the Resource Library on the website), and attend events (Walk-Run-N-Rolls, support group meetings, symposia, camp) and meet others (including me!) who share in these diagnoses.
My second request is that you get involved. Start a support group or organize a fundraiser (whether that’s a Walk-Run-N-Roll or asking for donations on Facebook for your birthday). Go to the About section on the website and read the bios of the staff, medical professionals, and board of directors and learn who they are and why they are involved. This organization isn’t a glass-faced building full of nameless workers. Each person is personally invested because they are either affected by one of these disorders (hi!), someone they care about is affected by one of these disorders, or they are motivated to help a rare disease community because of their own core values.
The biggest part of my recovery happened once I became educated and involved. I learned about different treatments and found strength in watching others in our community achieve their goals. It motivated me to try new options. I saw a therapist and learned to process trauma. I changed my eating habits and joined a gym, and I made gains (and losses…hello smaller pants) I thought were no longer possible.
There is a lot of work ahead for all of us. Waiting for a billionaire to get a rare neuroimmune disorder really isn’t the best option. We all have a part to play if we are to move this boulder up the hill. The comfort I take in knowing that it is achievable is that I work every day alongside the staff, volunteers, and medical professionals that make up the Siegel Rare Neuroimmune Association. So, take advantage of the hard-working people who provide the resources and chip in where you can. We can do this because we are stronger together.
Jeremy Bennett
Community Partnerships Manager at SRNA
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Kyle Blackburn, MD
