2020 has been a difficult year, but I continue to make progress on the book. We are in the final structuring stages, and will soon move to editing. I hope to make the book available in 2021.
I first had the idea of writing this book years ago when I was basically living in hospitals, before I
knew I had a genetic disease. Doctors and nurses became my second family. Oftentimes
nurses would ask me, “Why so many scars?”, or I would often hear, “Wow so young and so
many surgeries,” Or , “ You should write a book”. I would even have some nurses cry at hearing
my life story. It was all an eye opener for me and I knew that I had to write this book not only to
tell people what happened to me, but to allow others to know that they are not alone in their
I had fear writing this book. Fear because I hated labels because with labels come judgement. I
knew that if I wrote a book, I had to be truthful, open, raw and self-aware. If I am not open and
true, how can people relate to me and how can I relate to people? Being open and honest and
raw meant that I was making a commitment to commit to people on a deeper level. When you
share deep stuff, automatically some people feel your truth and therefore helps them open up.
Not always, but most of the time. That meant being okay with people’s judgements and labels.
With labels come pain, but I also knew that somehow somewhere deep inside, those labels are
not my true essence. How was I going to be OK writing this book and exposing myself, using
labels that society constructs and then mold it into who I really am? It was going to take me