Why You Should 'Change What You See' Behind This Picture
I was diagnosed with acute lymphoblastic leukemia (ALL), a rare blood and bone marrow cancer, just before my fourth birthday. Like most children, I can barely remember this time in my life, but some moments do rise to the surface: painful cancer treatments, intravenous feedings when I lost an alarming amount of weight, requiring strong prescription lenses after my sight suffered as a part of chemotherapy and being mistaken for a boy after I lost my hair during treatment.
Those memories aside, I am one of the lucky ones. I survived – and thrived – after my initial diagnosis and successful treatment. I came off all cancer drugs in 2003 and have since been relapse-free.
So today, on the surface, I appear just like my peers. My differences were not visibly evident as I sat for a portrait with Rick Guidotti of Positive Exposure. This not-for-profit organization celebrates human diversity and encourages people to form impressions based on more than physical appearances. Positive Exposure and Baxalta, now a part of Shire, launched an exhibit about people impacted by care cancer.
The goal of my portrait and portraits of other exhibition participants from around the the world, is to spark discussion about the individual stories that make up the underserved and rare cancer communities. Although the faces and personalities represented in this exhibit don’t appear “different” physically, our life experience with these cancers binds us. For example, you wouldn’t know that I was just one of approximately 12,000 people to have been diagnosed each year with childhood cancer.
Having a rare cancer can be an isolating experience. This has inspired me to make connections with other kids faced with similar challenges. I’m speaking out about my life after cancer so the next child diagnosed with ALL or any other type of childhood cancer knows there is someone on their team, and there is a community to support them.
As Rick took my photo, I stared into his lens, willing the life experience disguised by my 18-year-old face to show through: sitting alone on the playground because I couldn’t keep up in sports after 250 days of in-hospital treatment affected my stamina; the friends I made, and lost, to their own battles with cancer along the way – Killian, Avery, Scott. I thought about the display of my experience alongside other advocates, patients and caregivers – knowing our collective vision can tell the world, we may be rare, but we are not alone.
By sharing my experience in this exhibit, I hope to help address the lack of relevant, emotional and physical resources available for rare cancers, and perhaps some of the survivor’s guilt and post traumatic stress for other kids who have had cancer. I want to encourage other cancer survivors, or those in treatment to reach out to their local patient advocacy group, to seek out friendships among each other and lean on your loved ones for support. And maybe with this context, my image will help change how we talk about cancer survivorship.
As Rick would say, “Change what you see!”
When you look at these photos, appreciate me as I appear – a happy and productive young adult. But don’t forget about what you don’t see in the image: the realities of what it means to have lived with pediatric cancer physically and emotionally. And most importantly, remember the friends I’ve lost to their own battles with cancer, whom I hope to honor through my participation in this exhibition.
A cancer diagnosis remains with you for the rest of your life. It either weighs heavily on your shoulders and it drags you down, or you use the experience as a platform to help yourself and others. I have a million goals in life, but overall, I want to live a life of passion, depth and honesty. No matter what path my life takes, if I am living these ideals, I will be happy.
It’s a lot to ask for all of this to be understood through one single image of an 18-year-old student from Atlanta, but I hope by sharing my story, my experience and image will draw attention and awareness to others who find themselves in a similar situation.
The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.