Thalassemia Patient Authors “Transfusion: A Patient Survival Guide”
September 9, 2014 – Josephine Bila, an individual with thalassemia, has written a book, “Transfusion: A Patient Survival Guide.” CAF speaks with Jo about this project below.
CAF: Tell us a little about “Transfusion: A Patient Survival Guide.” What motivated you to write it, what is it about, etc.?
Jo: I was born with beta thalassemia major, so my life depends on receiving transfusions. I’ve been getting them every few weeks for over 35 years. When I was in my twenties, I used to receive blood in an adult outpatient hematology oncology unit. The floor plan was open, so patients would sit in large reclining chairs that were parallel and facing each other. There was a man with cancer who would sit across from me and stare at me for almost the entire duration of my treatment. I would pretend to sleep, but every now and then I would open my eyes and see him gazing at me. In my ever so slight glances, I noticed how this man expressed an intense displeasure and discomfort with his transfusion treatment. He would groan and moan and hold his arm as stiff as a plank of wood. That’s when I realized that he was looking at me curiously not only because I was young, but also because I had emotionally and physically conquered my fear and discomfort with transfusions. I would laugh with the nurses and feel completely tolerant of my pain. That’s when I began to think about how much coping strategy I had taught myself over my lifetime. It’s when I recognized that the tools and practices I had accumulated over the years could be shared and potentially save people from suffering the way I once did.
What are the “take home messages” that you hope readers will pick up from the book?
The primary message of “Transfusion: A Patient Survival Guide” is that you have a lot more control over your experience in the hospital than you might think. The book shares personal stories from my life that describe how I managed to transform my negative thought patterns and extremely painful physical experiences (I used to get transfusion reactions) into positive thoughts and virtually pain-free physical outcomes.
What was the process of creating the book like?
The process was pretty strange, to be honest. I wrote the entire book two years ago by waking up at two o’clock in the morning and writing for an hour or so over the course of two months. I had a compulsion to put my thoughts onto paper – as if the words had been formulating since the day I noticed that old man suffering. Everything came together with very little effort on my part. The book’s interior design, however, was much more difficult to create. A good friend of mine laid out each page individually and beautifully, in full color, so I feel like he deserves a lot of the credit too.
Do you see this book as an extension of your advocacy efforts on behalf of the thalassemia community and/or the overall patient community?
Yes. I absolutely know for a fact that this book will help any patient or parent of a patient, simply because we need to know how people like ourselves cope and achieve peace in life. I didn’t know any thalassemia patients as I was growing up. Now I go to a hospital where I’m one of many, so I feel so at ease knowing that I’m not alone in my experiences. I want other people to feel this sense of peace. I want parents to know how to console their child when he or she is in need of transfusions. Most of all, I want any person who reads the book to come away feeling stronger, more powerful, and much happier.
What else would you like to share about the book?
You can only buy the book on Amazon (at the moment): amzn.to/1mm2sJW .
I also created a guided meditation to accompany the book, which can be acquired on this page: transfusionsurvivalguide.com.
Is there anything else you’d like to share or to say to those with thalassemia?
Yes, I would love to say that living with thalassemia is not easy. I wasn’t always a beacon of light for people. I spent most of my life angry, sad, and ashamed of having a blood disorder. Then I realized that I was the one designing my life. I decided early on that I could either choose to live a life of misery or I could choose to live a life of happiness. I took the high road. We all have this choice and sometimes it takes an enormous amount of inner strength to push through our own negative momentum, but I know it’s possible. I’m living proof of this fact. I’d love to see you try one small step towards happiness each day. We are so much stronger than we sometimes allow ourselves to be in all areas of life. Let’s show the world what we’re made of!