Learning how to dance life

​This article was originally published in the FA Family Newsletter (Spring 2015).

If you were to dance your life, what would it look like?

A close friend posed this question recently and despite a host of hip hop and ballet classes that have demonstrated unfailingly my lack of skill on the dance floor, I delivered. I summoned the chronological pieces of my story and danced them all…the carefree spirit of childhood, the grief, the joy, the anger, the uncertainty, the love…

Needless to say, it was an eclectic dance. My journey with Fanconi anemia (FA), like that of so many others, has not been free of emotional trials. My two sisters died of this disease at ages 12 and 24. The threats of a bone marrow transplant and cancer diagnoses have loomed like shadows. Trusting the future enough to make long-term plans remains a challenge I work, with intention, to overcome again and again.

And. My life is extraordinarily beautiful. FA has been my greatest teacher. Through the fires of fear and loss, and the lens of a condensed time perspective, this illness has made me inescapably aware of the preciousness of life, and it has motivated me to do everything within my power to live fully and well.

For me, caring for the body and nourishing the spirit go together hand-in-hand in the process of crafting a balanced, healthy, and deeply satisfying life. I run almost every day because it helps me connect with nature and reminds me that regardless of future uncertainties, I am powerfully alive now. I note foods that have been implicated as potent antioxidants and anti-inflammatories and keep a list of these on my fridge as a reminder.

Amy Frohnmayer Winn (1987 – 2016)

I soak my mouth with ginger and black raspberry mixtures because these have demonstrated anti-carcinogenic properties. Though they are disruptive, I stay on top of medical appointments because they are just too important to skip. I infuse tools, such as meditation, self- compassion, and creativity, into my life to combat the toxic effects of stress.

Finally, I make meaning. FA has taught me that life is fragile. As a result, I care a lot about discovering, and living a life grounded in, the themes that feel most important to me. Right now, these are appreciation of beauty, nature, gratitude, love and generosity, and being deeply present.

I also believe that we are in charge of how we measure miracles. The trick is finding little ones scattered through every day, from coffee-infused morning sunrises to connecting deeply with another person.

As I grow older, I am understanding with inescapable clarity that life with FA, as with any life, will never be devoid of loss and pain.

My heart has broken so many times that I have found no other choice but to soften in response to the painful things—to accept them as darkness that completes the palette of an unbelievably colorful life.

And at the same time, I owe it to myself, and to this world, to pursue with all my heart the things I can do to make this life beautiful. I will never be able to control all of the music. I am simply learning how to dance this life with a little more grace.

Categories: Stories

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