With my Spinal Cord Injury (SCI) came paralysis. My legs remained lifeless despite my intentions and demands for them to move. I could concentrate on movement as hard and as often as I liked, but the outcome was always the same. Nothing. Empty, lifeless limbs. When I awoke in the night, forgetting my new condition, I would panic. The inability to move my body as I had for over 40 years felt eerily similar to a childhood experience of spelunking in Antietam, Maryland, squeezing myself through tight corners, trying as hard as you would like to move those tons of solid rock surrounding your body. Good luck with that.

Hearing my neurologist give me the cliché prognosis of never walking again jump-started my grasp of my injury’s permanence. Oh, how the mind races! After a lifetime of playing and working outdoors, I’d never be able to take my kids mountaineering? After more than 20 years of intimacy with my wife, would our sex life ever be the same? The inability to urinate could now become a urological emergency? On and on it goes. Just like that. And there was nothing I could do about it. As I continued through rehabilitation that permanence slowly sunk in. True recovery from an SCI was not an option, and there was nothing I could do about it. That became a second paralysis. The medical establishment is not there to give you hope. They are there to preach acceptance, and for your own good. The situation is thick with powerlessness, finality.

BUT! If you navigate through these initial dark waters, squinting your eyes hard enough, and clinging to the hope that someone is doing something and someone in the research community is on the task, you’ll see glimpses of light. There is a community that has not given up. A community that not only believes functional recovery is possible, but is taking direct action to make it happen.

I found such a community in Unite to Fight Paralysis (U2FP), whose mission is to expedite a cure through supporting research, educating the SCI community and, as the name suggests, bringing together stakeholders to have one powerful voice. I’m currently an advocacy manager for U2FP. My role is organizing efforts at the state level to enact SCI research grant programs. We’ve passed legislation in four states and have funded clinical studies resulting in the ability to bring functions back for an individual once relegated to permanent loss.

My first encounter with the Congressionally Directed Medical Research Programs Spinal Cord Injury Research Program (SCIRP) was while I was watching archived video of the SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research conference, hosted by the National Institutes of Health. In passing, I luckily heard the words about “people with the injury sitting on the review panels and having a say in what gets funded." Hearing this piqued my interest in a major way. THAT was not paralysis. That was empowerment and agency!

I’ve now had the privilege to serve on two peer review panels with SCIRP, and the experience has lived up to my initial expectations. I’ve been so impressed with SCIRP leadership and the level of professionalism of the researchers, specialists, and lived experience reviewers. Even in my short time with the SCIRP program, I’ve witnessed a commitment to improve outcomes.

When a project is assigned to me for review, I feel an incredible sense of responsibility to represent the voice of the injured and to disrupt siloed thinking. It is such a clear opportunity to be an agent for real change. For me, this service is an antidote to the powerlessness and finality I felt after the injury.

Photos provided by Jason Stoffer

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision

Links:

For more information about Jason Stoffer and his journey:
https://u2fp.org/get-to-know-us/our-team.html
https://youtu.be/TWNZn6zTEnU

Jason Stoffer also co-hosts an educational podcast about the science of SCI and research:
https://u2fp.org/get-educated/curecast/