Life on the Surface
Hello! I’m aware that it has been a while since I’ve written anything. When it comes to participating in the blood cancer community, I have generally done so as a spectator. From time to time, you may see my name pop up in a comment, but generally, I do a lot of digital people watching. For the last year, I have been putting a lot of thought into why I am so distant from the blood cancer community, a community that I am so passionate about serving and uniquely connected with. In reading a lot about people's individual experiences, a couple of things have come to my mind that I wanted to share.
Why do I feel distant from the blood cancer community?
My treatment experience is not “current”
I was diagnosed with acute myeloid leukemia when I was 15, which is over half my life ago. Being informed and paying attention to the finer details of my treatment was not my priority then. Neither was sharing it on my Xanga or MySpace accounts. Needless to say, when it comes to number counts, medication types, or even my streams of thought, I honestly couldn’t tell you much about my experience. Outside of side effects and how my experience changed me personally, the only technical detail I can remember is my hemoglobin level when I was first diagnosed. And the only reason I know that is because my levels were dangerously critical for an 180 lb athlete. Like anemic-for-an-elementary-school-sized-child-type critical. Translation: I was deathly anemic and close to organ failure.
Otherwise, I put all of my beliefs in the hands of one of the best children’s hospitals in the world. I didn’t need to know anything...all I needed was to believe in living. During that time in my life, knowledge meant little but belief was everything.
My experience was not chronic
Acute cancers are aggressive in onset and that's what makes them deadly. But imagine being in a boxing match, would you rather be hit hard and fast for 1 round and never fight again, or jabbed steadily for 12 rounds? There’s no better or worse answer. Both are going to leave you sore and bruised afterward. But by round 8, 9, or 10, a jab might begin to feel like a roundhouse. I did not understand that perspective before joining this community because I caught all my punches in round 1 and then moved on quietly.
I experienced loss of hope and guilt
Within 2 years of my treatment and remission, 5 people between the ages of 8 and 20 that I had become personally invested in all passed away. Distance became a defense mechanism that I used as a young adult to isolate this part of my life. I never truly embraced, explored or expressed a full range of emotions. In doing so, I kept many people at an arm's length in terms of happiness and positivity because I was afraid of being vulnerable. I didn’t give myself an opportunity to heal.
Our stories are important
All of the stories and experiences being shared here are important for people in this community to gain perspective as a way to cope. No matter what capacity you’ve been impacted, or how mundane you believe your story is, everything we share brings value and lends permission for someone else to be vulnerable and pursue healing. I wanted to acknowledge you, our community members, for helping me and each other become better advocates with every bit of what you share. Let’s keep getting better together in the year 2020 and beyond!
With much gratitude.
RIP
Lance Boykins
Robert Brown
Kelly Mitchell
Matthew Penrose
Amanda Zielke
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