Wait. This wasn’t in the plan | Reeve Blogger Kate Willette

Posted by Reeve Staff in Research News on October 10, 2017 # Research

If you look at our family calendar on the days leading up to March 7th, 2001, you get a feel for the world we lived in. It was the sort of messy calendar people used to hang on the kitchen wall near the phone, with a whole month visible at once and space enough in each day to record things like soccer games, dentist appointments, and birthdays of pets. Our calendar showed that we were 40-something parents with a couple of daughters in middle school. I taught math and wrote short stories; he made art and freelanced as a software engineer. We lived, blissfully ignorant, in the world’s most inaccessible house, a rambling front-to-back split level with four different sets of stairs, not including the ones you had to climb to get in the front door.

It was a Wednesday. That night I was supposed to be at a bookstore hearing my friend Carole read from her new novel. That weekend I was supposed to be off for the annual gathering my friend Jocelyn had memorably named “Moms Gone Bad.” There would be wine and chocolate, long hikes and lots of talking.

None of that happened. Instead, I was sitting in a small room off the ER at a Level One Trauma Center, listening to a doctor explain that my husband’s injuries were very serious, and that he would probably never walk again, and that he might have difficulty breathing and using his hands. This was impossible. Bruce had things to do. It was all right on the calendar.

We couldn’t have known it yet, but in that moment all four of us entered a sort of foreign country – an island on which, to varying degrees, we were trapped. The island of SCI sat right in the middle of our neighborhood; from it we could see our former lives but had no way to get back to them. In 2004 I wrote a book about this experience; it’s called Some Things Are Unbreakable.

As the days and months passed, we adjusted – but none of us ever gave up the hope that somehow we could end the exile. For me, this hope took the form of focusing on the research that might lead us home. One thing that became clear pretty quickly was that the “cure” wouldn’t be a complete return to the March 6th Bruce, at least not in the near term.

The other bad news was that getting my head around the research would be hard. I was an ordinary person with a feel for numbers and a curious mind, but I had no science background at all. I wanted to understand the importance of things like “fibrotic extracellular matrix modeling,” but it was exhausting trying to figure out where to even start. Do you buy a biology textbook? Enroll in a college course?

Where I started was with this very blog, under Sam Maddox’s careful tutelage, and with the annual Working 2 Walk (W2W) conference. Sam’s posts gave me pointers – a sense of what was happening and why it mattered. The conferences gave me a chance to sit in the same room with scientists presenting their work to the community. I knew that there were a lot of people interested in those presentations, so I started trying to capture them in real time, through live blogs. The W2W Live Blogs became a thing, and gradually in the process of writing them I started to learn, mostly through osmosis. My second book was about that conference; it’s called Working 2 Walk 2012, and it was my attempt to give some context to what the scientists presented that year.

And yet. The live blogs, no matter how many I did, would never add up to what we needed. We needed to build a tribe of us island dwellers that understood the world of research well enough to have an impact on where it was going and how fast it was going there.

My frustration about having failed to get that done led to the moment when my friend Jennifer Longdon and I sat in a bar and hatched the idea of another book. This – with full financial support from CDRF – became Don’t Call It a Miracle: The Movement to Cure Spinal Cord Injury. Please get your free copy here if you haven’t already; it’s my best effort to make SCI research comprehensible; it’s also the thing I’ll always be most grateful for having been given the chance to write.

So, that’s who I am and how I got here. My agenda is to build on Don’t Call It a Miracle, have some fun, make some friends, learn some things, and get us all the heck off this island.

Stay tuned.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.