Six months have passed since my stroke. I have successfully graduated from all my therapies. For 30 years I have been a professional health care consumer advocate. As such my passion has been to give people a voice in our often acrimonious health care world. Often left in the lurch is the patient. I knew that intellectually. Then I became a patient—suddenly and unexpectedly. That experience put personal flesh on the bone of my advocacy.
My advocacy was fueled by the death of my son who died in a car accident three days before Christmas 1991. I did not want to be pitied so I focused my professional life as a patient consumer advocate. I remember very specifically deciding: “When the worst thing that can happen to you has happened, it changes how you calculate risk.”
And I inherited resilient family genes that fuel mine.
I am stunningly lucky to be alive. I had incredible care from many health care professionals and I have staunch, close friends and colleagues who have shouldered me through. The gift I have been given in my life is writing. I can now give voice to my experience and through that I hope to give voice to others who may think they cannot be heard. I intend to use my experience and theirs to shine a personal light on our health care system.
I can only share my insights. Perhaps they will resonate with those who journey and often struggle on this road without maps. I will offer stories and insights from others as well. These may seem to be just individual stories but as three health care journalists from the Wall St. Journal, New York Times and Money magazine once told a health care executive’s conference: “All we have are anecdotes. But, in the absence of data from you to the contrary, that accumulation becomes fact.”
As someone once told me: “Fate is the cards you are dealt. Free will is how you play your hand.” I choose to tell stories to play my cards. *****
In the coming months I will share my story and those of others. I will have a new website dedicated to this effort and will publish a book by early next year–Gifts From A Stroke: A Hard Look At America’s Health Care (c). I hope you will follow this effort. Watch next week to learn what’s ahead and the beginning of my story.
Kathleen O’Connor (c) August 6, 2014