Heart of Celebration

My name is Mary-Beth Johnson. I’m 26 and I have Fanconi anemia. I climb mountains, make avocado roses, and I spend a lot of money at Target when I’m stressed. I don’t generally identify as someone who is sick, because I’m healthy for the most part. I had an older brother, Danny, who died of FA over 20 years ago. Ever since then, I’ve balanced a great isolating act when it comes to the FA community.

If I’m being completely honest, I was peer pressured to attend the adult meeting [in 2017]. I went in silently, kicking and screaming, convinced that I could remain stoic and detached…that I was there for the science, and to learn how to boss my doctors around better.

But here’s the thing: there’s a magnetic quality to other people who share parts of your story. The anxiety, fear, the memorized blood count numbers. The feeling that you need to squeeze as much life into your years as possible. The necessity to love, love, love and rise, rise, rise and continually chase after joy in the face of uncertainty.

Mary-Beth shares her story at the 30th Scientific Sympsosium

There is no better antidote for isolation than to find your heart in other people. Maybe that sounds melodramatic (my brain operates at a base level soap opera), but when you’re an adult with FA it can be hard to explain the crossroads where you live.

As an adult with FA, I want a lot of things for my life. I want to have a successful career. I want to be generous, hopeful, and life-giving for the people around me. I want a family. I want to travel the world with the love of my life. I want old age. GOSH, I want old age. Give me the wrinkles, age spots, the Velcro sneakers; I crave sassy grandma status.

And yet, as an adult with FA, I also keep a list of my symptoms. I message my doctors every other week. I force them to check and recheck for cancers. I pay way too much money just to be sure I’m still healthy. I lose sleep sometimes, imagining what it will be like when my waiting is over and I finally get a diagnosis.

Check out Mary-Beth’s incredible food blog

So you see, when I walked into a room with 41 other adults who are thriving in their present, dreaming and working for their futures, and claiming control over their health, I felt a new part of my heart.

I am indebted to the doctors, researchers, and scientists who are fighting for us. Indebted to the parents and caretakers—lay people who became medical experts—who have fought for and championed our health. Indebted to the spouses and partners, who stepped into our stories of FA and forever changed the way we understand unconditional love. Indebted to the FARF staff and board, for taking our orphan disease and giving us hope.

But mostly, and forever, I will be indebted to the adults with FA. For creating a community of generosity and hope. For sharing the pit of feelings. And for finding the resilience to climb out of the pit, with arms reaching down to pull others up.

Categories: Stories

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