04 Sep Surviving Survivorship
She went from being my friend to my inspiration on April 1st, 1999, the day I got diagnosed with cancer. I told myself, “If she can beat it, I can beat it.” Without her knowing it, she helped me get through the toughest fight of my life. I never told her that. My plan was to tell her after I was all better. In my mind, we were going to share some incredible stories together about our experiences. In my mind, we were going to be able to give each other that look and head nod whenever we passed one another because we both survived. In my mind…
But it never happened. I wasn’t more than a month into my survivorship when I learned that Nicole relapsed. I was so devastated. My heart was so broken for her. I sought her out and we shared some tears, and I told her, “If I can beat it, you can beat it!” She agreed, but the look she gave me told me otherwise.
In the summer before my senior year, Nicole passed away. I never felt heartbreak more than I did that day. I was broken. My friends who grew up with her didn’t understand why I was so torn up after only knowing her a couple years. The guilt I felt was so real. So raw. So painful. I still feel it to this day.
Every now and again I’d run into Nicole’s mom at the high school. I could see her pain. I felt the raw hurt she felt. And whenever I’d go to school late, I remember the look in her eyes. The look that says, “don’t waste it.”
It’s those 3 words, “don’t waste it,” that have both inspired me and haunted me throughout my life.
Being a childhood cancer survivor and a charity Director is an interesting type of pressure.
Gamerosity has become my life’s passion, the manifestation of this pain and guilt that has lived with me since the day on the bleachers when Camille told me Nicole’s cancer came back. The faster it grows (which is pretty rapid at this point), the more pressure I feel to “deliver” on all the requests and demands that come with it. I’ll be honest, I don’t do it well. Daily, I’m scrambling to get everyone taken care of, to make the posts in a timely manner, and do everything I can to ensure people continue to remember Gamerosity exists for these children.
Along with that, I co-own a growing business which takes a lot of my attention and focus away (because, you know, people needs shirts and logos) from things I’m truly passionate about. And don’t get me wrong, I’m passionate about Forte Clothing Co. I love the work I do. It’s good, hard work. We bust our butts every day to meet deadlines and get people taken care of. I love it. But Screen printing is not who I am, it’s what I do. Who I am is a Childhood Cancer Survivor that tries to usher new survivors into leadership. I manage a platform that uses crowdfunding to bring value to kids who feel isolated and marginalized through their circumstances.
There’s this other dynamic that I deal with. I think it’s what separates me in all of this. I’m not a parent of a child with cancer (From here on out, believe me when I say this, this does not marginalize or reduce ANY parent or person who is living out their passion serving children with cancer. You have a perspective I cannot identify with and you are NEEDED!) I am a Childhood Cancer Survivor. I don’t have the luxury of know what it’s like to hide in a room crying because you’re terrified for your child, I was the child in bed just trying to get through the day wondering if it would ever end.
As a Childhood Cancer survivor, I’ve met hundreds of parents and have interacted with thousands of people online whose children are in the fight of their lives. They ask me questions about my experience.
What types of chemo did I take?
How long till my hair grew back?
How difficult was it to have children?
What are my long term side effects?
Things like that.
Since my life is an open book, I’m happy to answer these questions. No problem. Oftentimes after hearing these questions answered, the response I get is, “I really hope my child ends up like you.” or “I just want that life for my child.”
I generally respond with an honest, “They’ll do more than I could ever dream of.” (Disclaimer: I truly believe this. It doesn’t take much to reach out and try to make something of yourself. These aren’t just empty words. I’m a college dropout that started a business after getting fired from one, leaving another, and failing upwards. Teach your children to believe in themselves — thanks mom — and they can do anything.)
Here’s the thing about all this. I feel it’s my absolute duty to live the life these parents desire for their children. For the parents who’ve lost their children, I carry the burden of most of these children’s legacy into my life. If I live and Michael dies, I sure as hell better show Kim that I’m not wasting this life.
So I love hard. I work hard. I hurt hard. I parent hard.
I can’t bear the thought of these parents seeing my life and thinking, “so you went through ALL THAT and THIS is what you’ve chosen to do with your life?” I don’t think people actually think these things (do they? Maybe. I don’t know.) but I feel that pressure.
My life must be worth it. I can’t just survive cancer and live an ordinary life. No matter how many people wish I would just go in a cave, live quietly, and stop talking about cancer. And if you’re sick of me, hopefully from my efforts, you won’t even know I exist in about 10 years when some of these kids grow up, become adults, and change the world. Until then, I have to keep moving forward.
I have to make it worth it. I know there’s grace. I know God is greater. I know He has a plan. But I have to make this survivorship worth it. I want to look into Mrs. Ramirez’ eyes one day and see “You didn’t waste it.” I carry these children with me. Nicole was first, and then I broke away from it all. And then I met Michael and he showed me it’s okay to love recklessly. And then Lola, and Addy Jo, and Mark, and Sammy, and Nico, and Allie, and…
I carry them with me. Every day the burden I feel anchored on my soul is to honor their lives. To make it worth it. So for the children who will never marry, I love my wife with my whole existence. For the children who never got to see what they were going to be when they grow up, I run my business with passion and zeal and generosity. For the children who will never be able to have children, I raise my babies with my whole heart. I coach them, I play with them, I pray with them, and I kiss them on the foreheads every night.
I’ll do all I can to never take it for granted, parents. Forgive me for when I do.
I hope your children never experience the burden that comes with survivorship. Unfortunately, I know they will. So I promise to be an example to them when it comes to channeling that guilt. It’s only right. They’ve been an example to me throughout their whole survivorship.