John Lennon is famously quoted as saying, “Life is what happens to you while you are busy making other plans.” In the summer of 2004, I was planning to enter my third year in the Bachelor of Social Work program at York University. I had dreams of moving into my own place, and thought nothing could deter me from my ambitions of becoming a hospital social worker.
However, at the end of August my routine echocardiogram landed me in the hospital with a diagnosis of heart failure and my life changed. Although thanks to my Glycogen Storage Disease and liver transplant in 1988 I was already well-versed in the world of illness, I still wasn’t prepared for the challenges of heart failure.
Near the beginning of my journey I found myself overwhelmed with information; trying to keep track of appointments, medication changes, and my growing medical history while still endeavouring to maintain my sanity. I approached my sister Holly to ask for help, and together we developed “The Phoenix Pages”, a resource manual/organizer for people dealing with chronic illness.
Creating and using “The Phoenix Pages” has helped me realise that while I do have a lot of medical information to manage, dealing with my illness does not have to be my whole life. I have to make adjustments for my health situation but I keep working with Holly to explore the concepts of wellness and create resources for other people dealing with illness.
With a heart transplant and fifteen weeks spent in the hospital, the past year and a half has been a whirlwind of ups and downs. I’ve recovered from surgery and am adjusting to what life with a new heart actually means. I’ve also used my life to shape my work, and during a ten-week consecutive hospital stay I co-taught a college course Holly and I created called “Assisting Families Dealing with Chronic Illness” over Skype.
“The Phoenix Pages” has grown from my experience and after receiving positive feedback from medical staff and people dealing with illness alike, it is finally ready to offer to the world.
Visit thephoenixpages.com to learn more about “The Phoenix Pages”.