Survivor’s Guilt – It’s Up To You

“It’s up to you.” I remember the hematologist saying. I have been misdiagnosed in staging and risk for relapse of Hodgkin’s Lymphoma. Without seeking a second opinion, or treatment options, I now have both and the incredible burden of deciding what treatment to undergo. I am 19 years old. It is 1995. My only experience with cancer comes from the movie Dying Young (1991) starring Campbell Scott and Julia Roberts- where Campbell Scott’s character is doing as the title suggests, he is dying young. And yup, you guessed it, he is dying from cancer, leukemia to be precise. It is a movie that even before my diagnosis haunts me more than any Freddy Krueger sequel.

My options, I wish, were about choosing monologues for auditions. But instead, the options are “Would you like to do 8 months of chemo or 4 months of chemo and 4 months of radiation?” Elephants and Tea, Stupid Cancer, Google and WebMD did not exist. It was just me and my mom, and a silent sense of urgency forcing us to make what would be an uninformed decision about how to save my life.

What’s crazier about this moment, is that at the Cancer Clinic, packed to the gills with geriatric patients, there was a young man close to my age, also diagnosed with Hodgkin’s currently headed into chemo. Same hospital. Same day.

“Would you like to talk to him? He has some experience, as he has been in treatment for some (undisclosed amount of) time. He’s eager to connect and help in any way he can” “Who is this guy?”, I think. “And is this really happening? Am I actually supposed to make this soul crushingly hard decision, full of unknowns? And how is some total stranger who has his own shit show going on, about to help me navigate the way forward?” “Ok. Ok. Ok. Yeah, I guess. Ok,” I repeat staring at the white hospital floor wishing all of this away.

I remember being escorted to an eerily quiet, empty waiting room, in another corridor away from the oncology suite. My mom begrudgingly let me do this alone. When the door opens, the person in the door frame appears to be the semblance of a young man. He is emaciated, with puffy cheeks, bald head, but still dark eyebrows. There is something familiar about him. But before I can sort out how we might know one another he says, “Shannon. I figured the next time I saw you it would be on Broadway.” I swallow a hard gulp of shame for the potential of veering off my own life’s path with this diagnosis in front of me. It’s John Wall. We went to high school together. I had left to study dance in the states a year earlier – as music council president and lead in every school show – his comment was directly related to my very public, hopeful dream, not yet realized. Some strangely serendipitous circumstances have led me back to Canada, and shortly thereafter, the London Regional Cancer Center in London, Ontario, my birth home, face to face with a forgotten high school classmate and cancer.

John was diagnosed with Hodgkin’s in grade 8. We did not meet until I was in grade 10; he was a year ahead of me. I had no idea of his previous diagnosis. In high school he was in remission, a strong, strapping, handsome and confident athlete – popular, charismatic, and desirable to any lovestruck high school teenager. The cancer came back. His relapse was a disheartening one – stage 4. Being the generous soul he was, he asked me to talk to him. “What’s the diagnosis? The prognosis? What treatment options are they giving you? How do you feel? What are you going to do?” I think I just cried. I wish I could remember. What I do remember is that he said these words: “Do what scares you the most. Cut your hair. Go aggressive and don’t look back.” In his perspective, if he and his family could have made different choices, he believed he would not be where he was now. He told me to remember that who I am is not how I look, or what is happening to me, but how I respond to it and how I choose to show up. I would love to tell you that I heeded his advice and chose the path that scared me the most. And maybe I ultimately did. The truth was I was beyond scared of either option. When the head of clinical studies suggested I enter a study that would randomly choose my course of treatment, I surrendered. May 30, 1995, I entered the study. After a year of chemo and radiation, (and countless scans, blood draws, infection scares, nausea, balding head, puffy cheeks, 3rd degree burns, a broken heart, a vanishing roommate and friends, my highest grade point average, alone in a studio apartment) on April 30, 1996, I received my final clear scan.

And I started to move on…

On January 24, 1998, I was sitting in my college duplex near the Florida State University campus, preparing for finals, when my best friend from high school, who I had not really been in touch with, called. We did not talk for long. I needed to get off the phone. I was falling apart. Sitting on the precipice of my adult life, prepared to head to New York, dreaming about my future, I learn that John is dead. Fuck Cancer. The same thoughts and feelings invade my head and heart writing these words now as they did while I sat alone in my room, ears ringing, quiet tears streaming, and then the onset of that long, hard, hot sob.

And then the questions:

Why him? Why not me?

It took me almost a decade after that day to make sense, for myself, how to tackle these questions. I started to honor and live the legacy that John gifted me with- the support of one young adult facing cancer to another young adult facing cancer. As many of you know, I have been fundraising, volunteering, creating space, producing events, and holding space for young adults with cancer to connect. In my mind, survivor’s guilt is proof that you are full of empathy and vulnerability. Cancer can chip away at your self-worth. Survivor’s guilt is a symptom of that. We all know deep down that we only get this one precious life. And when you get to a certain age you realize that life is not fair. Every day I wake up and every time I learn of someone’s death from cancer, I choose to show up; to use my unexplainable survivorship to serve and support in all the ways I can, those who are newly diagnosed and traversing the surreal and challenging landscape of survivorship. I know the reality of cancer; I know the uncertainty. No one should face cancer alone.

However, you choose to manage your experience of survivor’s guilt, please remember this: Guilt implies that we have done something wrong. And no matter how much we may unfairly judge ourselves for how or why we are here, we have done nothing wrong. There is nothing to forgive. If you are here, be here. Honor the ways in which those who lost their life, enriched yours. Be vulnerable, be generous. Celebrate, love, laugh, grieve, and show up. Keep showing up for yourself and others in whatever way you do. Someone needs you. I need you. I believe that John saved my life by showing up. Being fully present here and now you can do the same for someone else… you just never know. It’s up to you.

If you’re struggling with survivor’s guilt, reach out. That is what Elephants and Tea, Stupid Cancer and others like it are here for.

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