I’m writing this last post on Monday morning, from the couch of my in-laws’ living room in suburban Minneapolis. It’s taken me a little time to process the idea that U2FP chose to recognize my own work with this award — specifically, I think, to honor the book I wrote and that the Christopher and Dana Reeve Foundation generously funded and continues to give away to anyone who wants a copy.
There was a weird moment on Saturday, the 2nd day of the conference, just before Dr Kim Anderson rolled up to give her presentation about consumer engagement. I’d managed to eat some lunch while I got the last of the posts from the morning all up on the blog, and I was sitting there doing my thing … which means, typing as fast as possible in a sort of simultaneous translation effort.
Marilyn Smith was at the lectern saying that this is her favorite moment of the conference, when someone from the community is recognized for the work they do. Everyone, she said, has something they’re able to do. For some people it’s fundraising, for others it’s organizing, for others it’s writing. I got all that into my notes.
And then she said, “The person who’s being honored today has written three books, and you’ve been hearing a lot about the last of them in the last couple of days.”
My notes stop at the words “three books” and are followed by OH SHIT, which marks the moment I realized she was talking about me. So she finished her thoughts and I went to the front of the room and took the award. It’s a giant cut glass thing that weighs about 7 pounds. And I told the people that I write because I’m not a great talker, then went on to demonstrate how that looks in real time.
Because I have this format and this platform, I get to tell you what a person who was a good talker would have said in that moment. Here it is.
I named the book Don’t Call It a Miracle because I can’t stand it when people talk about recovery from spinal cord injury as if it were some kind of magic act. I hate it because it inserts an element of hopelessness into the situation that just does not belong there. Who is it that needs a miracle? Someone with no options, no path forward, no hope.
That’s not us.
It’s not us, because we are the first generation in human history who can see progress in repairing the damage spinal cord injury does. It’s not us, because of cell therapies and genetic therapies, and epidural stimulation, and activity-based recovery, and brain-body interfaces, and exoskeletons, and all the devices, drugs, and interventions that were not dreamed of just twenty years ago.
And it’s not us because there is now a giant opportunity to become a functioning international community where no such option used to exist. I’m sitting here in that space right now, composing language that can be read and reacted to and shared by anyone with a smart phone or access to the internet.
The whole point of the book, from conception to execution, was that we don’t need a miracle. We need to get to work, to talk to each other, to figure out what thing it is that we do well and how that thing could fit into the bigger project.
So, I’m crazy grateful for the chance the Reeve Foundation gave me to write that book, and I’m humbled by the many people who approached me over the last couple of days to say that it brought them to the conference, taught them something useful., and generally fired them up.
If you don’t have a copy, download one for free from the Reeve website. Order a free box of them there, and give them away to everyone you know. If you’ve already read it, go to its amazon page and write a review so that people who happen across it will understand what it is and what it means.
We don’t need a miracle, friends. We need each other.