‘A Cherishing So Deep’: Thoughts on the Everyday

I hoard poems like others hoard sports trophies.

It’d be an exaggeration to say that I have a poem for every emotion under the sun. But I do have ones that stick with me, that ring through my head like a chant. Take, for example, Richard Siken: “Tell me how all this, and love too, will ruin us. / These, our bodies, possessed by light. / Tell me we’ll never get used to it.”

Or Jeannine Hall Gailey: “We’ve heard you were a victim. / Stop crouching in shadows, chewing your hair.”

Or Ada Limón, who wrote my favorite poem of all time: “I want her to survive forever.”

The other day, I sat down to write my quarterly newsletter. I was having trouble getting started, mostly because I didn’t know where to start. So much has happened in the past few months. Should I start with California? Dad getting COVID-19? Or should I start with how this year’s Cure SMA conference upended my life (in a good way)?

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As I thought about the wild and weirdness of 2022, I thought of a poem by Marie Howe, “What the Living Do.” I wish I could include the whole poem because it’s one of those pieces you need to read in its entirety to fully grasp its meaning. But for the sake of brevity, I’ll stick to my favorite part:

“But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I’m gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I’m speechless.”

In the poem, Howe speaks to her younger brother, Johnny, who died of AIDS-related complications. She mentions a variety of things, including a pile of dirty dishes and the unexceptional act of buying a hairbrush. But this, she realizes, is what the living do: “This is the everyday we spoke of. / … Parking. Slamming the car door shut in the cold. What you called that yearning.”

Last week, I wrote about a wedding I’d recently attended. I wrote that, as happy as I was for my cousin and his new bride, I was also sad — for myself, and how I’ll likely never experience the milestones we’ve come to associate with adulthood due to SMA. I’ve accepted my fate, for the most part. But there are still moments of grief.

Since writing that column, I’ve been reflecting on my life, the ways in which I invalidate my experiences because they don’t match up with what I’ve been taught to see as “normal.”

I’m not living independently, so how can I be an adult?

I’m not working a 9-to-5, so how can I claim that I’m career-oriented?

I dread family gatherings, not because I dislike catching up with relatives, but because I hate talking about myself. When people ask me what’s new in my life, I stumble through an answer. I say, “Nothing much,” purposefully glossing over the dozens of things that are, in fact, new.

I don’t mention the book I wrote because it’s not published yet.

I don’t mention my partnership with biotechnology company Genentech because it’s not a full-time job.

This is my life. And I’m proud of it. Are there things I’d change? Absolutely! But I know everything I’ve overcome, and all that I have yet to do. My writing and freelancing may not seem like “what the living do,” especially compared with raising kids or moving across the country for work. But it is.

I’ll always feel left behind. But I’m going to do my darnedest to see my life as, well, life. The everyday that Howe speaks of — the medical appointments, the books and emails, the friends I see once a week for game night. Why do I have such a hard time embracing these magically mundane things? Why am I ashamed of the life I’ve created so painstakingly for myself?

I want that moment Howe speaks of. Walking down the street, only to catch a glimpse of myself in the window glass. Wind-tousled hair. Imperfect skin. A body that malfunctions in the late-autumn cold.

To be gripped by a cherishing so deep. That is what the living do.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.