Hello, sunshine. It’s rare that I wake up when the sun is full up in the sky, but today was one of those days. Last night, I sat up until 3:30 in the morning reading a book about trees, taking in the light of the tanenbaum’s glow, looking up things on the internet, and creating physical boundaries between myself and my cats, who were dead set on attacking my toes.
I was up so late because I had my bi-annual dose of liquid steroids, which accompany an infusion that, over these next couple days, is said to kill off my B cells so they don’t poke through the myelin barrier allowing other cells to attack my brain and spinal system like they’ve been doing for the last couple decades.
This is my 5th time doing an infusion, the vast majority of them done in COVID times. My Dr. and I decided to try doing it without steroids to see if my body no longer perceived the cell-killing medicine as the enemy. As soon as they turned up the drip, the allergic reaction started (for me it comes in the form of scratchy throat), and in went steroids and a stream of scolding from a nurse about it being a stupid decision to try to do it without. Noted. And still, I’m the boss of my body and it’s was okay to try and not feel like a zombie for 48 hours after, considering that I do this every six months.
Also notable is that when I checked in, the changes in the hospital system have made it all the way down to the bracelet printing machine. About three infusions ago, I noticed that my bracelet had an M marker listed as my Sex.
Generally, I don’t spend a lot of time quibbling with other people about what they think my gender or my sex is. But, as I wrote about a few years ago, I had a terrifying experience with a transphobic nurse when I was in ICU after I gave birth to my youngest kid. So, the M on my bracelent made me anxious that, if I was unconscious and transferred, I might not receive quick, adequate care. For example, because I am not often read as a man for long1, an M marker could create confusion that I’m literally the wrong patient if I wasn’t able to say “yeah! That’s me!”. So, when I talked with my Neurologist about this, and she was awkwardly asking me what SHOULD be on the bracelet, I had to do some decision making. When the X marker was approved for California ID’s I didn’t go sign up, because I didn’t want to have that conversation with Cops. But, when she said it was an option in the hospital system, I said yes, do that2. And so, it’s made it to the printer machine.
Three pictures and what I came here to share
Okay, since I’ve started this Substack I wanted to keep it casual, like “Hey, I liked this, what if you like it too?” Somehow the Instagram format felt more casual because people could scroll by when I upload four seemily unrelated pictures of hospital wall art, an ID tag, my cats, and a random screen shot of a podcast episode. But also, I don’t want to be that casual. Feelings and lists. That’s what I promised, that’s what this post has become at the end.
Substacks I am Reading:
So, here’s two substacks that I always open when they come into my inbox.
First, the original use of this Substack3 format that made me pay attention, The Audacity by Roxane Gay. I am in awe of her writing, and that awe grows over the years - the clarity and consistency across genre and topic is #Goals. AND, The Audacity, as a specific piece of her work, is a blend of just what I want to open on any given day - a bit of framing and reflection on what’s up in the news or her life, a featured emerging writer I’ve never heard of, but whose writing is always interesting, and her weekly round up of news articles and Twitter goodness (or badness). Clicky click.
Second, I’ve been reading the examined family by Courtney Martin after I finished her most recent book, Learning in Public. This book takes a hard look at how white parents in Oakland (especially), but also economically privileged non-white parents, make schooling decisions in the burning wreck of racism, segregation, and children’s schools in our country. The book was right on time in my life, as we are making Big Life Decisions. Learning in Public takes the hyper-personal starting point of her own experience as a white mom in Oakland whose caution-feelers perked up when (privileged, usually white) parents start the “have you decided where she’ll go to school” conversation around the time her 1st kid’s in preschool. But, as a reporter with skills, the book goes much deeper than a personal reflection - weaving interviews, #’s, and observation of community meetings and classrooms, it identifies painful tensions, important tensions, about racism, class, and education.
If you’re a parent or educator reading this, I recommend you read it and then talk loudly to a friend about it whatever your response. But also! Her substack is a more eclectic collection of reflections on parenting, race, schooling, feminism, etc. Some days, it will share a video of a panel discussion about school integration, letters from former mentors she’s not heard from in a while, recordings of cool things her kids say. I have not yet detected a pattern, and open it up to see what might be there on the other side, a person sitting across the estuary from me with similar values who is also parenting kids, also worried about similar things, also trying to do the work of repair as a white person in this country.
This is what I came here to say. Steroids are still flickering in me - twitching the eyes, flushing the face. My sweetly awkward cat just got caught in a bag for a second. That rounds this one out, I think.
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which is fine! It’s not a goal of mine, to pass or be read as a man. And, sometimes that’s how I’m read.
In previous eras of my life/if this were a different kind of blog, there would be paragraphs here about the complexity, maybe impossibility of being ‘seen’, of gender surveilence. It is what it is, decades on decades now! I weave, I adapt. That’s how we do. One of those inbetweener superpowers.
I realize I’m using their brand word a lot in this post, and want to be clear they’re not paying me! :: whispers :: "yet”