Don’t Call It a MiraclePosted: October 17, 2014
So, taking a quick break here while the first breakouts happen. Sorry if you were dying for a report from one of them. While I’m down, I’ll share the text that I planned to say to the room when Marilyn and Peter Wilderotter introduced the new book.
So, here’s what happened. Last year at the end of working 2 walk in Boston, Jennifer Longdon and I were hanging out in the hotel bar.
What a shock, I know!
And we were noodling about what else could be done . . . we’re both writers by trade, and so of course we started thinking BOOK! (If you’re a hammer, everything looks like a nail. If you’re me or Jen, everything looks like a book idea. 🙂 )
Seriously. There’s no book that gathers up all the stuff an advocate ought to be fluent in. There are a zillion websites, and a dozen or so that are really good . . . but the internet is like a maze. There comes a moment when you say, “I know I read that somewhere . . . “ and it all starts to run together.
So, Book Idea: a sort of Spinal Cord Injury Research for Dummies! Those books work because they focus on the salient things. They have illustrations right where you need them. They make use of the space on the page to help highlight things that matter. If they’re thoughtfully done, they can save a ton of time for the person who just wants to understand one thing.
So that was the idea. And Jen helped me pitch it to the kind people at the Reeve Foundation, and those kind people said, “You know what, the community does need one of those.”
I spent most of the last 3 months doing interviews, writing, revising, and preparing to do more and more of all that. The result is the Sneak Preview you have in your hands — the first section of what will be a whole book sometime early next year. The first section is, as you’ll see, about the cord itself. What are its component parts called, how does each one work, how do they work together — that sort of thing.
Still to come will be similar sections that take apart the money scene: where exactly does funding come from? Who decides how to dole it out, and on what grounds? What limits the amounts granted? There will be sections on how regulation works, and what role investors play, and what it’s like to run a research center or a lab, or to be a post doc student trying to get a permanent job.
This is the question I ask everybody I interview: WHAT DO YOU WISH ADVOCATES KNEW?
The value of the book is in collecting all those answers and seeing where they lead us in terms of strategies.
Winston Churchill said that 80% of success is showing up.
I don’t know about you, but I AM DEAD SICK OF 80%. I WANT THE NEXT 20.
It’s obvious to everybody who has been following the science for the last 10 years that things have changed. Not fast enough. I don’t want to be standing here 10 years from now, saying, “Gosh, if only we’d figured out how to get organized!”
Let’s get organized. It won’t be a miracle. Don’t call it a miracle when determined people educate themselves and make something happen! That’s not a miracle, that’s how it’s supposed to work. Miracles are magic — they’re effortless. We are not going to find the cure without effort. A lot of it. It pisses me off when people suggest that the recovery my husband got was a miracle. Please! Do they have any idea how much work, how much pain and frustration, how much money was involved? Or that it was only possible in the first place because he had a sufficient number of surviving pathways? Don’t call it a miracle. We have work to do, and lots of it.