Reading as brain-tending
On the odd pairing of steroids and deep reading.
Every six months I drive myself to a hospital or an office park and I sit down for a 4-6 hour medical procedure. A medication is dripped from a clear bag down a tube into my arm, and over the next five days it performs a miracle of sorts — it slows the rate of of my immune system attacking my brain and spinal cord, delaying the progression of my Multiple Sclerosis at rates that far exceed any medication available when I was diagnosed more than 15 years ago1.
It can do this by killing my B cells, one-third of the white blood cell warriors in our immune systems. In doing so, it also makes me more prone to catching and keeping whatever drippy-nose, COVID, pneumonia-tinged horror that we pass between each other when we’re not masked.
Thing is, my body doesn’t really want this medication. It fights it with an allergic reaction every time. Not everyone’s body does2, but my body knows vigilance, that’s for sure. So every time I take it, my tongue and the roof of my mouth start tingling and itching. If I’m not given a second dose of anti-allergen fast enough, my throat starts to itch and presumably swell. So, when I go to take this medication I’m first given a dose of steroids through the IV, then then a bendryl-like sleep medication. Then, when the second itch comes, I’m given a second dose of anti-allergy medication. When I first started, they would give me a second dose of steroids.
The effect of the one and sometimes two doses of steroids is once I leave the medical office and get home, instead of slipping into the covers and then restful oblivion like one would hope everyone has the chance to do after a medical procedure, the night greets me with thrumming in my ears, hot pulsing in my face. The agitational presence of steroids in your system.
So, after I spent the first night of my first ever infusion tossing and turning, agitatedly pacing the house, I now prepare for my infusion times with a sacred stack of reading. In the same way I plan to call time off of work, coordinate a change to the school pickup schedule, or shop for steroid-induced late night snacking, I select one book that I’ve been really meaning to read, something that tells a story about people and culture, the kind of book I want to get lost in and finish front to back. And then, twice a year on the night of infusion, I plunge in.
The first “infusion book” I read was Ocean Voung’s On Earth We are Briefly Gorgeous. And wow — what a standard to set. It’s one of the best crafted books I’ve ever read. I sat down in the beanbag at 10 pm and read straight through to sunrise.
The next book was what I now see is a bit of a trend in the deep-reading plans — contemporary English-language reflections on the gnarly histories of the countries my ancestors are from. The first book was a graphic novel, Belonging: A German reckons with history and home. It was a summer infusion when I read this book, and I remember flopping from different couch/chair/table arrangements, snacking and wandering through the pictures and first-person storytelling that helped me learn more about German culture and reflect on my own community of origins’ silence about the things we ought to reckon with3.
The second ancestor-adjacent book, Why the Dutch Are Different: A Journey Into the Hidden Heart of the Netherlands, I read during last month’s infusion. The frame in the title is regrettable, but overall I found it a helpful review of how history shapes contemporary life from the perspective of someone who grew up in a deeply unequal and austerity-oriented English-speaking country like my own. Do you know other books on life in the Netherlands that are in English? I’d love to know about them.
This summer’s infusion tour through the wild world of all-night reading happened with a writer plunging into the depths of the ocean for stories that flow alongside their own memoiric essays. Sabrina Imbler’s How Far the Light Reaches: A Life in Ten Sea Creatures beautifully weaves their own experiences of race, sexuality, gender, and coming-of-age alongside the amazing lives of sea creatures. 10/10 recommend.
You can read a more thorough list of books-I’ve-read-on-infusion-steroids on my Bookshop recommendations page. It’s been six years now, twelve infusions.
After my infusion, everything’s a bit much for about a week and a half. If I don’t rest enough or look at a screen too much, my brain starts to hurt. So I read as much as possible. Reading a paper book is a balm. It feels like it smooths my brain cells back together after those pesky B-cells got pulverized. This year my wife wrapped a pile of hand-selected romance books from the public library, put them under the tree, and left a note that said “happy resting.” For a person who’s almost always in motion doing things, the long night of infusion reading and giant stacks of curiosity piled around my house are a brain balm. A blessing.
Would I choose to have an infusion if I didn’t have to? HELL NO! Do I recommend making a plan to pick out one really anticipated book, blocking out eight uninterrupted hours and flowing into the story until you get to the other side if you can? HELL YES! Lemons into lemonade and all that.
This is a muggle explanation, not medical advice (nor an endorsement). You can read the drug company’s explanation about how the drug works here. https://www.gene.com/media/press-releases/14890/2020-12-14/fda-approves-genentechs-ocrevus-ocrelizu
For example, this last time I was on the other side of the cubical wall listening to an approx 35 year old dude take back-to-back work calls while the same medication blazed into his arm. He came in after me and left before me, presumably not encountering even a wink of sleep-inducing medication.
Like indigenous land theft and genocide, to be specific.