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Late 30s going on 70

A cloudy sky with a small hole of bright blue

It finally feels like fall here, it was about 48F when I took the kids to school and daycare. Enjoyed getting dressed for that sort of weather, not so much sunscreen and sweat. And my ears don’t hurt in the wind anymore thanks to the hydroxychloroquine, turns out that was Raynaud’s. But the joint pain is much more obvious with the cold. That might improve over time, but this is my now.

Late-30s going on 70. I’ve been taking a lot of comfort in Ursula Le Guin’s writing, as usual, but her writing on aging and the fallibility of the body is particularly resonant.

The pain in my feet, knees, and hips was enough the other day that it suddenly dawned on me. Do I need a cane? Maybe I need a cane. Let’s get a cane. I found a secondhand one online from some estate sale in California and sawed it down to size. I won’t need it often, but there’s something about having something that I picked, that someone else previously found useful, that I modified just for me, that makes life-changing pain a little more visible when it’s not that obvious, pain that I can’t explain to acquaintances, friends, strangers, without bursting in to tears. Having something to hold, to lean on, to signify “hey, maybe let me take that bus seat if that’s alright”, is really comforting.

I’m hoping that visual signifiers will also help with the kids. That’s the hardest, most sorrowful part. Reminding him that I have “inside boo-boos” when he wants to play bath monsters, “I know mommy”, running to ask daddy instead. Her looking at me carefully with her big blue eyes saying “oo okayee?” when I wince after she jumps in to my lap. Yes, I’m okay my love. I’m not, but I’m okay enough.

My dad has dealt with chronic pain for years. I had no idea how much it drains the soul. I’m sorry.

It’s not all bad. Like I said, my ears don’t hurt in the cold now. Though everything else does, how’s that for a tradeoff. I can have dairy again, the lactose intolerance was a part of it all. And my highest and lowest notes are back with zero effort on my part, which was truly a shock.

So many things to be thankful for (insurance, savings, time, Sam, friends, family, neighbors, modern medicine, our walkable neighborhood, a good rheumatologist). And Carole King. How had I not listened to “Tapestry” in full before. What an unbelievable album. I put it on in a particularly low moment after I stumbled across a video of Aretha Franklin singing “(You Make Me Feel Like) A Natural Woman” at the 38th Kennedy Center Honors gala. Every song on there is fantastic, but I was full of tears after the first line of “Beautiful”.

“You got to get up every morning with a smile on your face / and show the world all the love in your heart.”

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One answer, many questions

Another quick update: I’ve been diagnosed definitively with lupus. I’d been toeing that line for a long time, have had symptoms related to it for at least 15 years, but things properly went wrong starting around the middle of last year and a recent biopsy made it definitive.

Anyways, send me all of your hot-weather recommendations for long sleeves and pants that don’t make me feel like a boil-in-a-bag meal. And hats, all the hats. Did Carmen Sandiego have lupus?

(Genuinely, related to the clothing recommendation solicitation: I really appreciate the emails I get about this blog, truly, and I’m sincere when I say “send me x”. But I should say now, I’m not great on quick replies at the moment, haven’t been for some time. It’s hard to find the words. But thank you.)

The first week after diagnosis was the honeymoon phase, relief at knowing. Now I’m in the much lower “what now, what next” phase. The diagnosis road has been very long, and honestly there’s still a long way to go in terms of finding the right cocktail of drugs to keep flare ups and progression at bay. Reading other folks’ stories has been really helpful though, so I’ll try to share it at some point.

If you’ve wondered why the long time between posts, here’s the answer.

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Onward and upward

Quick update: I’ve departed the Eames Institute. Feeling a lot of feelings about it! Can’t wait to see what the EI, LMP, and Stout folks get up to, what a fantastic bunch. Will be watching those spaces.

I’m taking a breather for a bit, mainly focusing on some health stuff, reconnecting, and making new connections. Also hopefully giving this site a facelift… Reach out to say hi. 💫

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The self on standby

The self has been on standby recently. My unread emails badge is something to behold, the blog is looking cobwebby, the unread books are piling up, the knee is misbehaving. Need to get proactive about this, but also want to be gentle and forgiving while the kids are so young and sleep so ephemeral. Sweet autopilot.

Maybe a little light meditation to kickstart things? How to begin.

I’m sorry to those friends waiting on replies, you’re not forgotten, just on too long a hold while I work on the bags under my eyes.

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Come work with me!

Heads up: we’re hiring at the Eames Institute.

For the Digital Experience Designer role, we’re looking for someone with a product and/or systems-oriented background that has major typographic, brand, and storytelling sensitivity. Ideally someone with a bit of code experience but a designer first and foremost, with real-world experience in both the cultural and tech sectors. Would be working super closely with me to map out and execute the digital roadmap at the Institute, with some pretty interesting projects in the mix.

Check out the role if you know anyone appropriate or are interested. 💫

Related side note: I’m now the Director of Digital Development! 🎉

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A bird

I came across a sparrow yesterday on the busy corner near B&A’s daycare on the way to pick them up. It looked like a tiny pile of leaves on the concrete, and people kept coming *this close* to stepping on it by accident. I realized what it was in exactly the same moment as a dad and his kid three steps ahead of me, the little boy started whispering worriedly. I picked it up gently and put it in the nearest reasonable spot, a very tall planter with a lot of greenery. It was like nothing, a little mound of trembling lint with claws. I know you’re not supposed to move stunned birds but I figured there was no way it wasn’t going to get flattened like a pancake otherwise. And it made sense, I was literally seconds away from daycare where they had a bathroom right by the door and I could wash my hands.

In the few remaining steps to daycare, I was instantly overwhelmed by a huge wave of deja vu and dread. I suddenly thought, “bird flu…” and was mentally thrown back in to the earliest days of the pandemic when everything was dire and nothing was certain, when we were wiping our groceries down with bleach wipes, wearing masks when passing someone on a trail in the woods, living with a permanent empty lump lodged somewhere between our throats and the base of our skulls and thinking, “Surely this isn’t right? Am I doing something wrong? Is this what I’m supposed to do to stay safe, to keep everyone safe, to make this go away?”

I washed my hands for 40 seconds and tried to stop thinking about it, but the feeling lingered the rest of the night, this existential what-if-I-just-seriously-fucked-up feeling, and it’s still sort of present now. I know it’s extreme but also, life feels pretty extreme right now.

I picked up AB and BB, and told BB about the bird. We walked up to the planter and found it still there, but under a few more leaves. It was gone by the same time the next day.

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“Don’t want a song”

I put BB to bed last night for the first time in a little while and asked him what song he wanted me to sing, as usual. He said, “I don’t want a song.” A little bit of me died.

I think it’s because I don’t get to put him to bed often due to feeding AB. It’s kind of like holding him in my arms too, I couldn’t pick him up for most of the time I was pregnant with AB and then now, he doesn’t want to be picked up. Just the first of many letting go-s.

Edit 26 February 2025: Last night, I was singing all sorts of nonsense to AB while putting her to bed. BB overheard me and asked why she gets lots of songs. I told him I thought he didn’t like it. So maybe the secret is a little good old fashioned jealousy, then I’ll get to sing to him again.

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Overheard on 7th

I was walking to the grocery store just now with AB in the carrier. A man bumped me accidentally rushing after a woman about his age, maybe both mid-70s. He grabbed her by the shoulder and turned her to him.

“Where are you going?!”

Silence.

“You want to go home?”

She nods.

Gently turning her the opposite direction, “But home is this way.”