By Jeremy Bennett, former Community Partnerships Manager at SRNA
Four years ago, I was at a Panera Bread sitting across a table from a man I had never met before. His silver hair was pulled back into a ponytail. He spoke with an energy that invoked more kindness than authority. I could immediately see why people were drawn to him. In this case, we were discussing potential roles within what was then known as the Transverse Myelitis Association.
Our scones were crumbs and our coffee was cold by the time we parted ways that day. Since then, I have heard him joke about his two-hour interviews. This is the way with Sandy — and why this organization has thrived for 25 years.
A few weeks later, I had dinner with him and his wife, Pauline. It was the first time I had met someone else with transverse myelitis. I wrote about this experience in my Hope Ambassador story, so I won’t rehash it here other than to say that night is what ultimately led to my decision to do this work and why it is so difficult to walk away now.
After my diagnosis in 2012, I found comfort in volunteering at the welcome desk of a museum in Seattle. I had been out of work for two years and was finally at a point in my recovery where I felt like I needed to be around people again. These disorders can be so isolating. Sitting at a desk and answering questions seemed like a low-stakes entry back into society. What it ended up being was a door to a version of myself I didn’t think was possible. I fell in love with the museum world and eventually found myself holding a master’s degree in museum studies.
My plan to rule the museum world got put on hold after meeting Sandy, Pauline, and the rest of the staff. I could not turn down an opportunity to help others find hope, care, and comfort, and I hope that I was able to do that in these past four years. I’ve met the most amazing people during this time. I’ve watched our support groups not only grow in numbers but grow in the way the members continue to lift each other up through difficult times. I’ve made lasting friendships with my co-workers and people in our community. I went from knowing one person with transverse myelitis to knowing hundreds.
This work isn’t always positive though. It’s seeing people at their lowest. It’s receiving calls of loss. It’s reading emails of struggle. It’s meeting people in tears. And I’d be lying if I didn’t say that takes a toll. If you are reading this and you were one of the people who are described above, please know that it mattered to me. I felt every sadness and did my best to help. And the people in this organization will continue to do their best after I am gone. It’s part of the DNA.
As for me, I recently moved to Colorado and was presented with an opportunity to help in a different way. The United States Olympic & Paralympic Museum opened, and the door back into the museum world was unlocked. I felt like I had to finish what I started back in Seattle, so I started working weekend shifts. On my first day at the museum, I was reunited with a family from the SRNA Quality of Life Camp who were in the area for a wedding! I knew then that I was in the right place. I could help promote the Paralympics (where a number of people with rare neuroimmune disorders compete) and would continue to have surprise encounters with members of our community.
This is one of the most difficult decisions I’ve made. I am going to miss my work here, but once you are a part of the rare neuroimmune disorder club you can never truly leave. I am forever tied to this community and will continue to stay involved as much as I can. I plan to attend events and help out as a volunteer.
In the end, I want to thank Sandy for guiding me through this work. His voice was always in the back of my head. Thank you to Angel, Chitra, Debs, GG, Jim, Krissy, Linda, Rebecca, and Roberta for their support throughout; to all our support group leaders and volunteers who devoted countless hours to our cause and who I have developed genuine friendships with; to everyone who has attended a meeting, camp, symposium, Walk-Run-N-Roll; and, to all of those who called or sent an email and trusted me to help.
My world is bigger and better because of you.