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On learning to live in a new body

I'm still learning how to live in this new body. Ever since my bone marrow transplant, I've struggled with chronic fatigue and a misfiring immune system. I've had to learn to ration my energy, to move more slowly, to accept that sometimes my body simply will not sync up with what it is I want to do. I can pick two things I want to do well each day, whether it's work or exercise or seeing friends. Then I rest, or else I pay the price. 

On Saturday I marched with my mother and a group of friends in New York City. It took me two days to regain my strength, and it was worth every second of it. I often feel pressure to perform survivorship and illness well, but we do ourselves and others a disservice by glossing over the day-to-day challenges. 

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On bridging the gap

It’s the early morning, the first dusky rays of sunlight bleeding in through the blinds. I’m writing from my desk, which is covered with notecards and books and to-do lists. Oscar snores softly at my feet, and I can hear the angry bleats of trucks and the whoosh of car tires plowing through puddles outside.

I’ve been in a solitary — dare I say, hermetic — place these last few months. And my life has been going something like this: wake up, make coffee, take a reluctant Oscar out for his morning walk, set my intentions for the day, write until I can’t any longer, read, try to write some more, go for a run, cook a big dinner, hit the sheets and repeat. I’ve found solace in this routine; the rote repetitiveness of it offering a sense of structure and safety that I long craved and struggled to create for myself during the sick years, and my recovery from them. Now, after several months of hibernation in Vermont, I’m back in New York City. Trying once again to figure out how I fit into this mad mad mad city that both exhausts and inspires me. 

Writing a book has been an expectedly introspective process. But my reluctance to throw myself back into the world has been more than just that. Save for the occasional picture on Instagram, I haven’t known how to share my thoughts in these social media spaces as of late. I’ve felt wary of the growing gap between my real life and my digital one. Unsure of how to bridge it, unsure of if I want to. So, I’ve fallen into the trap of posting only a highlights reel — look at me with my volkswagen van/dog/picturesque cabin! — or going radio silent altogether. It’s not a new observation to point out the disparities between our online identities and our offline ones (I wrote about it here in the NYT). But I’ve found myself longing to explore the nuance and the nitty gritty that lies beneath the surface. To step away from the structure and safety of my day-to-day, and to experiment here with a different kind of writing: short, unpolished but straight from the heart.

Taped to the wall above my desk is a post-it note that says: "If you want to write a good book, write what you don't want other people to know about you. If you want to write a GREAT book, write what you don't want to know about yourself.” I circle back to these words again and again. Not just in the context of writing, but in terms of how I want to live my life, both here on the web and otherwise. 

If the choice is between perfection or bravery, I choose bravery. 

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