This month, I am celebrating the fifth anniversary of receiving a heart transplant, and the beginning of a new life. In light of this milestone, I have been reflecting on how I have mentally and emotionally made it through the long-term effects of childhood cancer to this point, in spite of the times when I felt that nothing would ever go right. I have been granted so much luck by the universe and by the privilege into which I was born, however there were many moments when I was unsure if I could handle any more. These were the moments when I had no hope for change.
My memories of these hopeless moments are tinted grey. These moments made me feel like I was stuck in the Groundhog Day movie version of my life. I remember sitting on my floor with my laptop staring at pictures on Facebook, and lamenting the life that I was not going to live. My first and longest period of hopelessness was when I was in the worst stage of heart failure, but did not know what was wrong. I was way heavier than I had ever been because of fluid build up. I hated the way the puffiness looked, along with the feeling of being weighed down and constant shortness of breath. Goals of moving out and becoming an independent person were derailed quickly, and I couldn’t understand what was happening to me. I perceived that it would never change. I began to grieve the loss of my old life and old body as I entered a period of disability. I was not able or allowed to walk further than my hospital room bathroom, and became fully dependent on others. I was so afraid of the unknown ahead of me, and that I was “falling behind” in life.
Once I received a diagnosis and options for treatment, I was immediately excited with the hope that my quality of life would eventually improve. I endured the cycle of grief for the loss of my body many times as I encountered more problems, and then would regain hope once I saw the possibility of improvement. I noticed a pattern: my days were better when possibility existed. Possibility required readjusting my path. It took me a very very long time to understand that everyone has their own life path and speed. So I changed my goals and method of achievement to fit what I was able to do at the time. With my heart transplant, I have been granted the ability to achieve both old and new goals. Accomplishing the old goals just happened a little later than I thought they would in my life.
Although I had new goals and had come to terms with the concept of not setting a timeline for myself, I still struggled with the day to day, as I was not always able to take steps towards my goals. Getting through the daily routine of being sick required setting small goals to give me something to look forward to. These small goals gave me something I was able to achieve each day, and enabled me to avoid my mentality of focusing on what I could not do. Often the daily goal was as simple as wanting to sleep in my own bed at home. So until I was officially released from the hospital, I would imagine escape plans that could help me achieve this goal. The idea of escaping and running away from the hospital gave me hope that I could make it home. Regardless of how ridiculous my plans were, they would keep me excited throughout the day. The possibility of achieving these goals gave me hope for change. I still had some very hard days, but giving my days more meaning helped me through the moments when I didn’t think I could handle any more, and made the potential future seem more achievable.
I still face the occasional obstacle due to the side effects of immunosuppression. Gratitude helps me through these obstacles, too. I experience gratitude for things I wasn’t able to do before, like running up a set of stairs. This keeps me looking forward to the next day. Gratitude in combination with hope helps me be thankful for whatever abilities I have that day, and makes achieving tomorrow’s goals so much more possible.
Maya Stern is a 26 year old long-term cancer survivor. She graduated with a Masters of Public Health, and a Bachelors of Environmental Studies. She practices yoga, and enjoys reading and writing. She is in the process of writing a book detailing her experiences with chronic illness. Maya is pursuing a career where she can empower others to take control of their own health.