Advocating With Your Mind and Body
“You’ll never walk again.” Almost everybody in this room has heard those words before. Destructive words. Reeve said that it’s not a matter of IF but WHEN. And we’re here to make sure WHEN is closer and that no family ever has to hear those words again.
The symposium is all about that — bringing together people to make this happen. In this room we have all the pieces of the puzzle. Quads, families, caregivers, scientists, regulators, funders.
My injury happened in 2004. I’d just finished my first year o college. I was at the ocean in Delaware . . . I turned my back on the water, and it picked me up and dropped me on my head, shattering my 5th cervical vertebrae. I heard a crack. i couldn’t move or speak, but my friends saw me
Went from a 185# college athlete to a 135# quadriplegic. I remember being wheeled up my driveway and through my garage, where my old tennis rackets and soccer gear hung. My life was going to be different. I spent a lot of time thinking about what a struggle it was, and in 2005 formed a foundation called Determined2Heal. I started mentoring people around the country.
I started making youtube videos and organizing them into categories by physical functionalities. That turned into Spinalpedia.
Since then I finished college and law school and passed the bar. So, enough about me.
The billion dollar question is what to do? Here’s my program.
- Find your own voice
- Let yourself be seen in the world; live an active lifestyle; turn heads; the more of us that are seen and heard from, the more dollars will be spent to improve our situation
- Share your experiences; we have youtube, facebook, twitter, instagram, pinterest, carecure community, spinalpedia
- Hone your skills; whatever they are, there’s a place where they can be used
- Use statistics; convince the world with numbers. The ones that speak loudest have to do with dollars and sense. The NIH spends 3 billion each year on 1,218,400 people with HIV/Aids. They spend 81 million on 1,275,00 people with SCI. Talk about the lifetime costs of injuries. We can only see results if we invest. InVivo estimates that the Chronic SCI market is over $10 billion right now.
- Meet science halfway by doing what it takes to keep your body as healthy as possible. I developed my home therapy program at kennedy Krieger — I had to because I couldn’t go there 3 days a week forever.
- Volunteer to be in a clinical trial
I was at the very first Working 2 Walk rally 10 years ago. I had so much hope then . . . and I’m happy to say that we’ve made progress. Epidural stimulation, exoskeletons, neuro-spinal scaffolds, and so much more.
I can’t wait to find what the next decade brings. Change happens not overnight but over time — as long as we keep pushing. The day will come when people say this to people like the student I was: “You will walk again.”
Much cheering. He’s a remarkable person.