About two year ago, a few things became clear to me. First, improvement after stroke can continue for a long time. Not just the 12-18 months often talked about. Five years after my stroke I am still improving. Second, I would probably never regain all the capabilities I had before my stroke. This was a very tough realization. And most important, I realized that not just my abilities had changed. My identity was changing too. I had to let go of the old and embrace the new. And I realized that this may be the most important thing for a severe stroke survivor to discover in order to live a full and happy life after stroke. That is why I’m now writing a book currently called Identity Theft.
So who am I now? I still see myself as an academic, as I want to create and share knowledge. But, I no longer define myself by my job at Stanford. I certainly still embrace my roles of wife, mother, daughter and friend. And many would tell you that I’m more present in these roles than I used to be. I’m still driven to work hard and contribute in some way. But my husband would tell you I've moved from "type A+" to "type A-" with things like meditation and an ability to “enjoy the moment” now more central to my identity.
I’m writing this book because I realized that many stroke survivors struggle with their identities just as I have. We naturally fight to get back to “who we were”, not who we can be. We are driven to live up to our old identities – making us frustrated and often disappointed. On my journey as a stroke survivor I found plenty of books to help me understand the physical challenge of recovery, but none that helped me understand and productively navigate my changing identity.
Two other things are important to my book. As I got to know other survivors, it became clear that many things influence the path of stroke recovery -- like gender, professional background, socio economics, even race and ethnicity. My personal story is the foundation for my book, but I will also draw on interviews with about thirty other survivors, as well as some of our caregivers, kids, doctors, therapists and others who helped us recover, and saw the changes in our identities. I want all those effected by stroke to see themselves through the stories of others, in the hopes this will give them tools to better navigate a difficult journey.
I also plan to use Identity Theft as a foundation for advocacy work. It is simply unacceptable how many in the medical profession and all, it seems, in the insurance industry, treat stroke survivors -- reinforcing the "12 month window" belief about recovery and limiting opportunities for substantial further improvement. I hope this book, and my voice, will help to change this reality.
I am writing this book with the help of Sally Collings, a wonderful editor, author and ghost writer. Given my limitations, her help is invaluable.