In general terms, a disruption is some kind of disturbance — it’s something that interrupts an ongoing process. That’s why I got excited when Lyn Jakeman announced last fall that she was part of a team organizing a conference called SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research. Jakeman is the neuroscientist/administrator who directs The National Institute of Neurological Disorders and Stroke, the program at the National Institutes of Health aimed at spinal cord injury research.
The conference took place February 12-13 in Bethesda, Maryland, sponsored and hosted by NIH. As Jakeman explained it back in October, the idea was to invite representatives of all the groups that play a part in what might be called the “cure/ care industry.” Those who design devices, investigate different kinds of cells, engineer implants, capture data, provide physical therapy, perform surgery or work as caregivers would join together to find ways to improve function and quality of life for people living with paralysis.
If ever there was an industry that could use some disruption, SCI research is it. Why? Because in spite of more than $100 million going into this project annually just in the United States, we don’t have anything. There is not a single medication or device or cellular therapy approved by the FDA specifically for use by people with SCI. Zero.
Early on in the first day, cure advocate Rob Wudlick rolled his power chair up to the microphone. His presence there was more than the usual tokenism scenario, in which a person living with the injury describes how they got hurt and what their days are like now. Those talks — always well-intentioned and powerful — are meant to create, however briefly, a sense of empathy and urgency for the listening researchers.
Wudlick’s talk certainly did that. And for me, it also did much more. There was a moment in it that kept tugging at the back of my mind as I watched the rest of the presentations. Wudlick described his injury day. He and a group of friends stopped for lunch 19 days into a 25-day rafting trip down the Colorado River in the Grand Canyon. He went to fetch something off his boat when a friend called out that a piece of trash had fallen into the river. It was 90 degrees, the water was deep, and he dove. We know how that story ends: C4-5. ASIA B.
What caught my attention was what happened next. Wudlick, a trained emergency medical tech, was face down and immobile in the water. After a moment of wondering if he was messing with them, his friends came to his aid. Once he was flipped over and breathing, he proceeded to tell them how to get him safely to the beach. How to keep his head stabilized while they pulled an aluminum table off the boat to form a backboard. How to move him. How to check his vitals. What to say when they called for the helicopter.
It was a scene I still hadn’t shaken off, days later.
Image credit: Photo by Author