The most frustrating part of being sick for me was hearing people say, “You can’t do this”—even if it was physically warranted.
After chemotherapy shrunk my tumour, surgeons cut open my body to remove the remnants of the tumour. It was still too large, and they had to remove the whole kidney. No big deal—I have another one.
When I relapsed, my remaining kidney was exposed to radiation. I have since been trained to tell doctors that my right kidney is “compromised”. Because I only have one compromised kidney, I have to protect it with my life. So that means I can’t play contact sports, and everyone has a minor freak out if I ever fall on my back.
The most memorable time that this affected me was one summer up north. My brothers, cousins and a bunch of our friends were going to these amazing rock waterslides. Everyone wore their lifejackets like a diaper over their bathing suit, and slid down the slippery rocks while laughing in the hot summer sun. There was an underlying fear that the bumpiness of the slide would be harmful to my fragile kidney, so I had to stay behind. I was so upset that I cried and screamed. One of my cousins offered to stay with me, but then I was upset that I made her miss out.
Fortunately, sometime later I was able to go to the waterfalls, and it was every bit as worth it as those tears. Since then, the waterfalls have been closed as public slides because apparently they really are dangerous. While this may be a childish example of the effects of my compromised kidney in my life, I was a child when it happened. I was so frustrated dealing with the after-effects of my treatment.
As the after-effects became actual health problems, there became more and more activities that I physically couldn’t do, like climbing stairs. Tears became tears of fear and frustration that I couldn’t live my life. Being sick meant becoming a passive player in responding to what life threw at me. I reluctantly had to submit to what my body would let me do, while attempting lifestyle changes that might improve my quality of life. My future seemed like an impossible dream.
Things finally changed when my heart transplant granted me health, and an open and real future.
However, my mind had adjusted to hearing the worst. I knew how to be sick, and a healthy future still seemed unreal. Becoming healthier included a process of unlearning how to be sick. Adjusting to wellness has required making plans that seemed like risks, because of the possibility that something could happen and plans have to change and I, yet again, could have my dreams crushed. I have had to rewire my brain to assume health and assume the future will go according to plan.
Sometimes I still struggle with this, because I am subject to the whim of my immuno-suppressed body. There have been many plans that I have had to cancel or abandon, and cancellation insurance on plane tickets is always a must. But the exciting part of health is that I can keep trying, and keep pursuing a much more palpable future. And though there may be some things I still can’t do, there are so many more that I can.
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.