This is a weird book/blog. When people ask me to describe it, I find myself rambling on and on. As I watch their eyes glaze over, I feel nervous. In our soundbite society, long explanations of unusual formats don’t sell books. Despite this awareness, the book/blog you see here is what was waiting inside me to come out. I don’t know how else to write it.
I’ve been writing this book inside my head and through my journals for over 10 years. I was born with Cystic Fibrosis and grew up a sickly child. As an adult, I have gone through 2 double lung transplants. I have had countless hospital stays and experience with a wide spectrum of medical professionals. I have endured acute illness, sudden onset illness, chronic illness and terminal illness.
So here it is, the result of all of these experiences. This is part memoir, part handbook with a dash of creative writing and diary entries. I don’t know how better to explain it.
You might wonder who it is I wrote this book for. Really, everybody. This is not a book about lung transplant or Cystic Fibrosis. These are merely the vehicles that I have ridden to discover the universal truths of illness, dying and health care. At same point in our lives we will all be touched by illness and face the medical maze. I want professionals to read this book and see a side of the patient’s world they never knew. I want patients to see that no matter what the diagnosis, they are not alone in their illness journey and they can take concrete steps to having a better existence. I want families to look through the patient window and catch a glimpse of what it’s like to be the one in the bed. I want society to recognize the quiet subculture I call “The Sick World”.
Thank you for reading this book/blog despite the lack of a succinct description.