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Listen to me read this here:


 

Like clockwork, my body turns to me every day at 4pm, throwing up its hands, and says, Look, I’m done here.

As a part of the new way of things, this physical self expands and contracts with assorted discomforts. I develop headaches. Chills. The fatigue that I’ve been fighting all day intensifies. Different parts of my self — called “wandering pain” in the vernacular — prickle and ache, including my head. Sounds intensify. My eyes go wildly sensitive to light, so I turn down the lights — turn off my iPad — wait for night to come so that I can sleep. I become depressed. Part of it is the illness itself that depresses me, but another aspect is the confusingly dark-shaded glasses that tell me that I’ve been miserable and insane, unceasingly, for the last nineteen years.

When this new state of things began in early December, I railed against it, which is not to say that I don’t rail against it now. But back then, I fought the fatigue with tea and endured the caffeine sickness that followed. I hated that I needed to stop being productive at a time of day when most folks seemed to still be at their day jobs or, in my imagination, conversing with friends or enjoying their partners, their work, their children — and here I was, born with a life with limitations, and now freshly, additionally limited.

Around this time, my friend told me about her father’s new book. It’s academic, she said, but there’s something in it that I thought you’d find useful.

What my friend found for me in Novelty: A History of the New was the analogy of boundaries and baseball. I’m paraphrasing here, having not read the book myself, but it went something like: when people play baseball, no one complains that what they actually want to do is run around the bases twelve times. Why? Because that’s not what baseball is.

I’ve turned this analogy in my head over and over: my life and its corresponding illnesses are a game to be played. The boundaries within this life keep its shape. Without the boundaries, there is no life.

So I’m learning to explore my life within the shape of it. Right now, four o’clock is one boundary that I live with, and am learning to anticipate. In the mornings, I feel like myself. I forget that four o’clock will be entirely different, but writing it down reminds me, and even without the writing I know that the mornings have a certain urgency to them because everything must be done then: errands, writing, planning, socializing, traveling.

When the afternoon comes as if I’ve never experienced it before, I lie in bed, or on a nearby sofa, and try to decide what I can do. What sounds won’t hurt my head? Can I listen to podcasts, and if so, which ones won’t be upsetting? Can I read? Will Pinterest be a pleasant distraction, or a painful experience?

There’s the risk I always run of frustration — of wanting to do more, or wishing that things were different. I say “risk,” but it’s an instinct that I have yet to avoid. For those of us who have limitations and boundaries, I say this: we live within the shapes of our lives. Within those shapes, we can still be, and are, extraordinary beings. We can run more home runs than we’d ever imagined, and each home run will still be three terrible, magical bases.

With love,

Esmé

 

 

 

ass kicking with limitations

P.S. Find out about my related email course, A**-Kicking With Limitations, here.