This time last year, I was scheduling surgery after a breast cancer diagnosis. My last blog post on this site was just before I went into surgery.
My latest book, “Staying Afloat” was in the second draft stage when I was diagnosed with breast cancer. I guess it might have been easier to stop writing and focus on the business at hand, but that isn’t what I chose to do. I didn’t miss a day of writing or revising or editing except for the morning after surgery when I was in the hospital without my laptop or notebooks. I will say that I think the book is better for the experience. It is a book about survival, and I thought I knew a little bit about that when I first drafted it, but boy howdy did my perspective change with my diagnosis.
I’ve gone through my “uncorrected PROOF” copy with a fine-toothed comb, a highlighter and a stack of flag shaped post it notes, and the book is ALMOST ready to be published.
It is a substantially different book than when I began my quest to write a book about sailing. I had been bitten by the idea when I went with a group of neuroscientists to a Marina in Redwood City in 2013. The team was studying the feasibility of adaptive rowing with additional electrical stimulation to the muscles to simulate the input of the now paralyzed spinal nerves. Early on in the project I thought, “oh goodness, electricity plus water and paralyzed patients, what could POSSIBLY go wrong?” and rolled my eyes. But there I was, standing by the side of the water, caught up in the small but enthusiastic crowd of cheering supporters.
Part of my job that day was to listen to the athletes after their races describing what they felt they needed to go faster or be more stable, or have better input from the muscles that no longer provided that feedback. I was absolutely amazed and inspired by their feedback. They talked about having a freedom out on the water that was denied to them on land, and how they looked forward to the training sessions and of course the actual regattas.
After the recent furor on line about people saying that Stephen Hawking had been “freed” from his wheelchair and his horrible life to dance among the stars, I thought back to what these athletes had said to me. It wasn’t that they felt trapped by their wheelchairs or other mobility devices, it was that people assumed they were incapable, or invisible. On the water, in a boat that looked like all the other boats in the Marina, they were on a relatively level playing field, and people were CHEERING for them.
“My mother worries about me capsizing the boat and drowning out there”, one of the athletes told me, “but I worry far more about falling down the stairs in my chair trying to get in to an inaccessible building and having people just walk by and not bother to help me. Out there on the water, I know someone will take my distress seriously if I tip over.”
It was a perspective I felt humbled by, and privileged to be presented with, and it made all of the difference when I was going through my own surgery and treatments.
The other point that the athletes made to our Spinal Cord Injury group was that WALKING again wasn’t really all that high on their list of things to accomplish. They were far more concerned with being independent in daily living issues like being able to go to the bathroom by themselves or transfer from bed to chair without needing assistance.
I hope I have captured some of their spirit in this book, and that it might inspire someone to see being “out on the water” in a different way.
Although I have not been able to set up a Pre-Order on Amazon, if you would like to purchase an autographed copy, directly from me, the button below should be enabled.
Thank you in advance, from the bottom of my heart, for your support. It means the world to me.
Personalized inscription in my latest book, "Staying Afloat."
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