Hello from my patchwork life

quilt as chronic illness metaphor

This month I’ve had the pleasure of taking Marlee Grace’s quilt class, “A quilt is something human” aka AQUISH. I’ve done a fair bit of sewing this year, but by the end of summer the new hobby energy had drained and I began to feel that there was something fast fashion-y about my garment sewing. There will always be new patterns, new fabrics, other sewists on social media with brand ambassadorships, who are getting the aforementioned patterns and fabrics for free. Yikes. It started to feel frenetic.

I was feeling listless at that sense of comparison and lack; I wanted something slower, more intentional, more creative.¹ So I went for it. 

One of the things that Mar said in class is that if something isn’t working, you just need to keep on cutting it up and rearranging the pieces, and look again. In the last three weeks as I’ve made this quilt, I have spent so much time carefully piecing blocks, only to take them apart and add on something new, or move them from one side to the other, to see how they fit together again. So many minutes just staring at the quilt laying on the hardwood floor, leaning on the threshold of my living room, standing arms folded while I considered my blocks and then rearranged yet again.

An earlier iteration, Kitty also likes to stand and look

Quilt as chronic illness metaphor

I’ve been thinking about this because it’s been a year and a bit since I first realized that I was dealing with something longer term, and it’s only been a few months since I got some more concrete answers.²

In April a friend asked me if my experience with long covid had made me more resilient, and I guffawed. The question stunned me, and I imagine anyone who deals with chronic illness understands my shock on a gut level. How can you feel resilient when your experience has laid bare the truth that we are all just walking on a knife’s edge, one false step away from careening further into disability and total abdication of care?

I have seen firsthand how the medical system is overburdened and under-informed. The last year has completely disabused me of any last shreds of hope I had that the government might try to keep its citizens healthy or even, like, alive.³

Now everything is quilt

I was speaking with another friend recently about Meghan O’Rourke’s excellent book “The Invisible Kingdom,” which is all about chronic illness, with a focus on autoimmune conditions. The final chapter talks about recovery narratives, and how hungry the people in the land of the well are for comeback stories and a happy ending. In the past few months I’ve been starting to feel better, which has been strangely confusing, even though it’s what I wanted and hoped for. “That’s great,” people say, eager to move on to a different topic.

There’s an unnerving sense or unspoken expectation from others that if I’m feeling better now, then there’s nothing to worry about anymore, and I should stop avoiding covid so hard. Sometimes it feels like people are looking for reassurance that there’s no reason for fear now, even as the government continues to dismantle covid surveillance⁴ and jacks up the prices on the shitty tools we have left.⁵ 

To me, letting go of my caution is unthinkable, not least because of the assurances from my doctors and others in the LC recovery circles that a reinfection usually worsens symptoms.⁶ I’m also unsettled because focusing too much on how I am feeling now renders this last year of illness invisible, flattens it into a cookie-cutter narrative that doesn’t exist.

It makes illegible the fact that this life, this one I have right here and now, is a patchwork version of its previous self. It’s been cut up and rearranged a thousand times over the past year. It is beautiful, in its own way, and rich. But I’ve done the rearranging and sewn up the binding and I would like, more than anything, to not have to cut it all up and start all over again.

Just show me the quilt, Molly

Some variations on log cabins, half square triangles, flying geese, and applique. The fabric is a mix of thrifted sheets, leftovers from garment projects, and some really nice Ruby Star quilting cotton I had in my closet. I also experimented a bit more with the quilting itself than I have before, and I was surprised to find that this was the part I loved the most! I free motion quilted around the star in the center, around the blobs, and around the words, and it was so fun. The words are the last line of Kim Addonizio’s “To the woman crying uncontrollably in the next stall” — listen I love you joy is coming. 

I don’t always feel that way, certainly not at this particular moment in this world. But these words are echoing in my mind these days.

Watching/Listening/Reading

Watching

• I recently watched Phantom Thread for the first time since getting into sewing and loved it even more than I had before?! One of my absolute favorites, genius, but also such a cozy one. 

• We are watching The Golden Bachelor and I felt this in my soul

  reductress

  

  A post shared by @reductress

Listening

• Just learned about Budos Band via my algo. Yes. 

• The Big Dig podcast! I am slightly professionally biased but it really is that good. Having lived in and around Boston for the last 12 years I’ve heard a lot about the Big Dig and the truth is even more interesting.

• Rat Saw God by Wednesday. I got into the song “Bull Believer” on this album and then I saw it was on a playlist called “WOMEN SCREAMINGGGG” and yes, please.

Reading

complete with marginalia from 2008

• Sara J Maas A court of blah blah blah. Yes, I finally finished these books, and by the end it was borderline unpleasant! And yet, I could not put them down.

• All the Sinners Bleed by S.A. Crosby. Ooofff. But so good.

• And right now I am rereading Anna Karenina for the first time in probably a decade. What a pleasure to read a hard copy and know that so much of the book stretches out before me. It is so funny and so sad and so deft, I am getting so much out of reading this as a mid 30s person.

Listen, I love you, joy is coming. Going to be spending a lot less time on Instagram and more (hopefully thoughtful, intentional) time here, please keep in touch. 

Xoxo 

mvp 

1. David Byrne voice: “I don’t have to prove, that I am creative!”

2. I got sick in Sept 22, but it wasn’t until October that I realized that I wasn’t bouncing back as others had. Now I mostly deal with dysautonomia, and I haven’t reliably figured out triggers apart from heat and stress, I haven’t reliably fixed my sleep. But my baseline is pretty good most days.

3. To me, there is a direct thread that runs through protesting against police killings, against genocide in Gaza, against an unfettered airborne pandemic. It is about whose lives are valuable (everyone’s), whose lives are more valuable than others (no one’s). People over profit, resisting state sanctioned violence in whatever form it might take, and realizing that we owe each other everything.

4. The CDC recently awarded the wastewater surveillance contract to Verily, an Alphabet company, after Biobot had been doing an awesome job, leaving thousands of Americans who rely on wastewater surveillance to manage their risks with a significant gap in adequate coverage or info. You can read more about this mess here — it is hard to not be cynical about the timing of this gap.

5. Paxlovid is now much less effective at preventing serious illness and btw they are raising prices next year. sob.

6. Or the fact that there are not good diagnostics for long covid and that there are not currently any cures, just a hodgepodge of treatments from kind doctors who also have no idea what they’re doing.