I was three when I learned how to absorb pain like a bike’s shocks absorb jumps. I was sitting in the phlebotomy lab, clutching my fluffy pink teddy bear. I cringed as the tourniquet pinched my skin. I have always found that part to be more painful than the actual penetration of my skin.
I held my breath, preparing myself and convincing myself that the pain in fact wasn’t that bad.
The nurse found my vein in the first try and I watched the blood stream from my body into a tube. I didn’t cry, and proudly exclaimed same. I was used to being a pin cushion, now. I was applauded with, “You’re so brave!” and told what a little warrior I was. I was three.
There is no problem with crying over pain at any point in your life, and especially not as a young child with cancer. From the moment of my diagnosis, the words “hero” and “inspiration” were attached to me. Upon learning that bravery meant not crying and that bravery is good, I trained myself to shut off the tears.
When you’re diagnosed with cancer, your identity is formed for you. Before I could understand what the words meant, I was dubbed a hero, an inspiration, a little fighter. These are just some of the words which are used in the rhetoric around fighting cancer, and it forces people to adopt an identity, and it implies a sense of blame and giving up when people “lose their fight”.
It is a huge compliment that people think that I’m an inspiration. However, being called an inspiration by people I’ve just met after they’ve heard my story feels like they are discounting my experiences. They hear my long list of near-death events and are in awe that I’m still alive (I have literally had people want to meet me because they have heard that I had a heart transplant). Surviving physically and mentally has been hard. Being called an inspiration after only getting to know the significant events which have occurred in my life, but before getting to know ME, makes me feel like I cannot open up and disclose the hard parts—like when I would give anything for the pain to go away. It makes me feel like these are things others don’t want to hear. I have to live up to their expectations as their “hero” and their “inspiration”—but surviving is not the whole experience.
I don’t know who I would be without my diagnoses, because I never had a concept of my identity without being a childhood cancer survivor, facing subsequent consequences and having a scar that divides my torso in half. After three years of disability, many people being overprotective of what they let me do, and a stroke that weakened the left side of my body, I was left unsure and untrusting of my body. However, since my transplant, I have experienced five years of a quality of life where I am actually alive and not on the path to die. Relearning what my body is capable of has left me with the privilege to refuse to let my diagnoses define me.
My illnesses have shaped my perspective on life, including the part where I refuse being told I can’t or shouldn’t do something. I am lucky that I have been able to move from being confined to a wheelchair and movement at an unreasonably slow pace to having the strength to help move a 1,000 gallon (empty) water cistern, and maintain a community garden. It has taken time, but I am learning to trust my body again. My illness cannot decide for me how I will react. I refuse to continue to be afraid that I “can’t” do something, or that something will go wrong and ruin life plans.
I am not my cancer or my heart transplant (or the rest of that long list). I am my taste in music, my aspirations and the way I treat people. I move forward with my past, but not as my past.
Note: This is how I have chosen to live my life. There is nothing wrong with choosing to identify more strongly with your diagnosis, as long as you are the one deciding how you choose to identify.
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 works as a Youth and Family Program Coordinator for Shoresh Jewish Environmental Education, running educational programs and managing their organic garden.