we speak to become

I have three sewing projects cut out and ready to sew, but I haven’t touched them in months. Partly because sewjo is in short supply during lockdown, but mostly because I’ve been having so much fun with handwork projects: cross stitch, embroidery, stumpwork, crochet.

But when I saw Melanie post that this spring’s Literary Sewing Circle book is Amatka, I knew I had to participate. I first read it years ago, and found it a wonderfully weird story. Based on a colony planet–we are not told when or where, or how the colonists discovered or settled it–almost devoid of plant life and completely devoid of animal life larger than an insect, the colonists are in a state of daily warfare with the planet itself, which is in some way alive, yet can be compelled through thoughts and words, spoken or written, to become something else, something useful to the humans. So the humans, through relentless labelling of the objects they need, maintain those objects, and any lapse in those efforts has the objects relapsing into goop.

Rereading this book after a year of lockdowns and pandemic living, when a lot of us have been grappling with the ways that our thoughts and words have shaped this world we live in, for good and for ill, was a very different experience. We have defined, for example, whole groups of human beings as more disposable than others and have labelled them in Orwellian fashion as “essential workers”; in one sense, those thoughts and labels have shaped reality in disturbing ways, in increased hospitalization and death rates. In another sense, our thoughts and labels have never and could never reshape reality, because our essential equality as human beings is still there underneath all the labels, and the unequal consequences of our labelling strike us with fresh horror.

Coming up with a sewing project that reflects these observations, Dear Readers, was a trick.

The only clothing inspiration I could come up with was “something utilitarian that’s suitable for a cold climate.” But after a year of sewing utilitarian clothing in this cold climate, I couldn’t face more. So this is not a clothing project.


In January, struggling to come up with a New Year’s Resolution that also makes sense in a year that will be more or less defined by pandemic restrictions, I came up with: making one project from each of my unused embroidery project books and, if there are books that I haven’t made a project out of by next January, to give those books away.

Kazuko Aoki’s The Embroidered Garden is on that list. The projects are beautiful and I’ve had a few on my list for years, including the frog cushion and the seasonal floral wreaths. The only reason I hadn’t yet made them was because they are, I assume, based on Japanese flower gardens and frogs, and I want to stitch Ontario flowers and frogs. Which means the patterns had to be altered.

Original spring wreath design

I’ve altered one of the frogs to be a native Green Frog (that is the actual species name, and if you’re in Ontario and you’ve seen a frog at a pond, it is probably not just a green frog, but a Green Frog) for a quilt, and I’ve finally altered the spring floral wreath to remove garden flowers not native to Ontario (pansies, violas) with native spring ephemeral wildflowers (trilliums, trout lilies, bloodroot).

I also wanted to add some embroidered text to the centre of the spring floral wreath, and this is where it clicked with the Literary Sewing Circle project:

If our words have shaped but not overwritten our reality, and if we’ve seen too clearly the destructive impact that this reshaping has had on so many people over the pandemic: how do we want to use our thoughts and words to shape reality when it’s all over?

stumpwork red trillium on pink linen

If you could say anything, and saying it made it true-ish, what would you say?


That sounds like I had a handy phrase all ready to go, but alas, not so. I traced out the pattern, modified it to include my beloved spring ephemerals, transferred it to the pink linen scrap, and embroidered almost all of it while trying to think of a phrase that would best encapsulate what I want to bring forward with me from this time.

The phrase I kept coming back to was from Berol’s Anna’s poem fragment: We speak to become.

Which led me to Hafiz’s poem:

What

We speak

Becomes the house we live in.

Who will want to sleep in your bed

If the roof leaks

Right above

It?

Look what happens when the tongue

Cannot say to kindness,

“I will be your slave.”

The moon

Covers her face with both hands

And can’t bear

To look.

There’s something about that final image, of the moon unable to witness this, that struck me, but there’s really very little space available in the centre of this embroidery.

Aside: Hafiz is often translated as writing “The words you speak become the house you live in,” which, thanks to the unspecificity of the English ‘you,’ lends itself to a handy and pretty ugly individualism; if you say “mansion mansion mansion” a lot, you’ll end up rich! And indeed that’s the direction it’s been taken in by countless online life coaches and inspirational types of all stripes. Speak your reality! Get what you want!

But in its entirety it’s clear that the house we’re building with our words, collective-we and collective-you rather than singular-you, is the house we all live in, and it leaks over some beds, and the moon is sick at the sight of it.

And in Amatka, the words they spoke built the literal houses that they actually lived in, as well as every other object they interacted with, except for the ‘good paper’ brought with them initially from Earth. I know Karen Tidbeck wrote the novel based on dreams she had, but honestly, if she claimed to have been inspired by Hafiz’s poem, it would have been perfectly apt. At the same time, it resists an easy positive-thinking interpretation; it’s not a story where people speak “neverending abundance!” and end up with gold coins raining into their laps, or speak and think “I am all love!” and banish negative thoughts and feelings for all time. It’s prosaic. They speak or write spoon, key, suitcase, toothbrush, soap. And there is an ambiguous sense throughout the book that the reality of this colony planet, pulsing away beneath their labels and words, is both hostile to the overt control and shaping of the colony and its Committee but that it also can be joyous and expansive if the colonists would only stop fighting it.

(We could also spend a lot of time unpacking and discussing what it means that it’s the two agricultural towns that collapse first; the basis of the colony’s entire survival and, one senses from the text, the most difficult colonies to live in, with the harshest conditions and the fewest opportunities. What happens next, do you think? Does the industrial town collapse? Do they found a new agricultural centre and try to carry on? Or is this the tipping point that sends the whole thing crashing down?)

And isn’t that the reality of our world, too? That if only we would stop labeling our planet and fellow humans with the prosaic and controlling words that turn them into the commodities we need, we could have a more expansive and joyous reality? If we stopped looking at the forests and saying, “Ikea bookcases and toilet paper,” what would we see instead, and what could we create? If all the toxic and destructive labels we apply to people and populations ended, what would our communities become? What could we speak instead?

This also is a very difficult thing to encapsulate in the approximately 4″ x 3″ centre of a small embroidered floral wreath.

In a sense, of course, the words are unnecessary; the entire craft of embroidery exemplifies the themes of the book. I can point at this embroidered wreath and say “wild strawberry” until my lips turn blue and fall off, and it may have the appearance of a wild strawberry, but ultimately what it is and will always be is a bit of processed cotton plant treated with chemicals to look white.

But the words are central and I want the words, so here they are.

A few last words about the embroidery techniques:

The original pattern was fully flat surface work; a combination of stem stitches, couching, satin stitches, french knots, chain stitches and straight stitches. But in the process of changing the flowers to replace garden or non-native plants with native wildflowers, I also decided to add some three-dimensional stitching to highlight the flowers I love best. The wild strawberry blossoms are thread crochet. The trout lily is ribbon embroidery. The bloodroot has a foundation of four padded satin stitch petals, and four needleweaving petals on top. And the red trillium and the mourning cloak butterfly are stumpwork. The wild strawberry, trout lily and red trillium I designed referring to photographs I’ve taken; the mourning cloak butterfly came from one of Jane Nicholas’s stumpwork embroidery books (mourning cloak butterflies are one of the earliest butterflies to appear in spring in Ontario, since they hibernate over winter). The butterfly pattern had to be altered since it relied on a chenille embroidery thread I was not able to find anywhere; so instead I constructed the body with many straight stitches.

Review: Japanese Wonder Crochet

In amidst a year+ of working from home and having umpteen gazillion video conferences a week, I’ve discovered a) it reduces my wardrobe needs to about zero, and b) it makes focusing on small stitches for both clothes sewing and embroidery much more difficult. I’m not sewing clothes at all right now, and I now rest my eyes, regularly and frequently, including staring into the middle distance and also including slowing waaaay down on the kind of handwork I love. Sigh.

Happily, crochet (at least, if done with yarn and not thread) is large enough that I can work away without eye strain or pain, so I’ve been steadily borrowing crochet books from the local library in bunches of three, and trying out projects and stitches. Japanese Wonder Crochet was a recent borrow, and I made up two projects from it: the Granny Bag and the Diamond Waffle Stitch Handbag (also shown on the cover).

Granny Bag
diamond waffle stitch Handbag

Japanese Wonder Crochet does not contain basic crochet information such as picking a yarn or hook or how to do basic stitches; it assumes you already know this and gets right to the projects. It also does not contain written pattern information except for the rare, tricky stitch; all projects are given in pattern diagrams. Personally I prefer this as I find it easier to read and navigate and I don’t get mixed up between British and American stitch names, but if you can’t read pattern diagrams, this is probably not the book for you.

But the projects are simple and elegant, very useable, and not challenging or time consuming to complete, assuming you are not a complete beginner. I was able to make up both, including ordering yarn and waiting for delivery, within the initial three-week book loan period. Both bags are useful and made up as described and pictured. I’ve been using the granny bag for a week already, and while I wouldn’t trust the weave with, say, small change or subway tokens, it holds my daily essentials well and is also extremely cute. Recommend for crochet enthusiasts who are comfortable with reading diagrams and looking for interesting and useable accessory projects.

Review: Embroidered Animals: Wild and Woolly Creatures to Stitch and Sew

Disclaimer: I received a free, temporary e-book for this review through NetGalley.

I have two pet peeves that I’m bringing into this:

One: Reviews of embroidery or craft books that are really just gushing over the pretty pictures of finished projects, written by someone who may not even have the intention of ever making one, really irritate me. I’ve bought and tried to make projects from many craft project books where the math was off, the patterns were inaccurate, the instructions were unclear, didn’t make sense, or flat out wrong; and when I looked up the reviews they were all positive. When I read a craft book review, I want to know that the person writing it has at least tried to make a project from it, and has the experience necessary to evaluate whether the project instructions were accurate and helpful.

Two: Embroidery books often skimp on instructions for sewing them up or include instructions for very simple projects only, and sewing books often include no instructions for embellishment or embroider of finished projects. This means that, to my taste, the finished projects in either are typically a little lacking.

So my intention, when I downloaded the NetGalley of Yumiko Higuchi’s newest embroidery project book, was to fully make at least one project from it, from start to finish, scrupulously following the instructions, in order to evaluate whether or not a diligent reader could make up a project like the ones in the book by following the directions. However, my pet-peeve-#1 intention ran smack dab into pet-peeve-#2, and I failed somewhat.

Anyway, starting from the end, here is my finished version of Higuchi’s Wolves At Night bag:

The part where I followed the instructions:

The linen is a Robert Kaufman Essex yarn-dyed linen bought from Needlework and stagnating in the stash. The colour was a good match for the project, and the weave meant that figuring out grain was easy.

I traced the pattern, reversed it with a fine-tip transfer ink pen, ironed it on, gave it a 1/2″ hem per the instructions, and cut it out. All of the patterns are as given; I used the given thread colours in the given amount. I did end up needing almost two full skeins of the green thread as she said, so there’s a point for accuracy. I followed her directions for the stiches, and the technical instructions are well described and accurate.

Definitely for this pattern be very careful with the points on the trees. I worked from right to left across the bag for the evergreens, and the ones on the left are pointier and more closely resemble the book’s trees as I learned what worked and what didn’t. My NetGalley copy has expired, so I can’t be sure of this, but I think she says just to follow the outline when filling in for both the wolves and the trees. This worked well for the wolves, where following each part’s outline gave a lot of movement and definition to the shapes. For the evergreens, it made a bit of a messy, mushy shape, and instead I followed each branch down to the tip so that the stitching direction was more tree-like.

The part where I modified the instructions:

I underlined the bag front with a lightweight light blue feather ticking to give the fabric more stability. It also gave the hoop something to grab onto outside of the bag piece to minimize warping, and the feather ticking was densely woven enough to enable more finely detailed stitching than the more coarsely woven linen.

I also interfaced both front and back outer bag pieces with iron-on canvas interfacing. This is one of those parts that would never have been neglected in a sewing project book (at least, not a good one): linen on its own, particularly needlework linen but included standard sewing linen, is not strong enough to be a functional bag over time and needs interfacing. This should have been included in all Higuchi’s bag instructions, but isn’t.

The part where I flat-out ignored the instructions:

The book has the entire bag project made from the same light blue linen as the bag exterior. The closure was meant to be a drawstring through a casing added to the top of the bag, and the handles were meant to be linen straps. Clearly that is not this bag. Here’s why:

  • Linen straps, no matter how interfaced or assembled, would fray and degrade with use over time.
  • Once interfaced, the bag front will no longer want to be gathered with a drawstring; plus, it would obscure the embroidery

So once the embroidery was done, this project sat on my dining table for a good month while I tried to figure out what I wanted to do with it. I have no intention of putting twenty or thirty hours into embroidering something that is destined to fall apart if it’s ever used; interfacing was non-negotiable and linen handles were out.

So instead, I added tabs to the bag to give space to attach pre-made leather bag handles in a navy blue. There is no closure; I’ve given the finished bag to Echo to use to carry things around the house while using their crutches, so it doesn’t need one. If I were still making this bag for my own outdoor use, I would have modified the pattern to accommodate a zipper, or interfaced the lining and added a magnetic clasp or two. But then, if I were making a bag for myself, I would want some built-in dimension through gathers or pleats or a gusset or somesuch, none of which would have accommodated the embroidery–at least, not this pattern. I did try to find something that would work with the overall shape of the bag and pattern pieces, but it would have taken a lot of effort and reworking and I’m not sure the end result would have been usable.

Overall comments and review:

The embroidery instructions are fantastic, and it goes without saying that the patterns are beautiful (though I see a lot of people have gone ahead and said it anyway). The sewing and project instructions are fine, but keep in mind that the resulting projects will be simple and will not last with regular use.

Transfer instructions were tricky. Now, my NetGalley copy has expired, so I can’t go back and double-check, but getting a transfer copy to the fabric that is as finely detailed as the images in the book is difficult, and with any wider line you are bound to end up with fuzzier and larger embroidered images. Be careful, get as fine a line as you can, and be sure to go no farther over them than needed to fully cover the transfer.

If you’re drawn to the images and the embroidery, I’d recommend the book, but then suplement it with sewing references and a bag-making book so you can get some ideas of how to finish them that are more practical and will last longer.

longest March ever

This time last year was the March Break That Never Ended.

I’d been saving my errands up for that week off, and as it became clearer that businesses were going to close and no one knew when they’d open again, I made a mad dash to fit them in: repairing the lawn mower, getting the oil changed, taking the dog in for her shots.

But my clearest memory of The Day(s) Everything Changed is when I went to one of my last in-person dance classes. The other students weren’t able to make it, so it was just me and the teacher.

“I’m not feeling very well,” she said. “it’s just a cold, though.”

I think I froze a bit.

By that point, Covid had already upended work. Seating plans were rearranged, redeployments were kicking in, there were motivational posters up in the areas where PH nurses were staffing the hotlines and kicking off contract tracing efforts.

“I don’t know, I’ve heard about this covid thing, but I’m not too worked up yet. My husband thought maybe I should cancel the class or something, but I’m sure it’s just a cold,” said the instructor.

I smiled and nodded and resolved to stay at least 2 metres away through the class, which wasn’t hard to do since I was the only one there. And it was just a cold. And probably a month later, when the classes had moved to zoom, the instructor had found her covid fear and was mad about people going to the store or on a walk without staying 2m apart and barely left her house.

Last March was eventful. My birthday was the day the first hard lockdown kicked in and all businesses were closed, and leading up to that, small changes and shutdowns drip-drip-dripped every day. Events were cancelled. Every time I went to work, more people had been redeployed, and my desk had been moved again. I remember the Prime Minister’s first public address outside Rideau, when he and his family were in isolation because his wife had been diagnosed with Covid-19, and me and my colleagues and everyone on the floor were streaming it on our laptops at our new-new-new desks, just before we were all sent to work from home ‘until further notice.’ Echo had a huge blowout fight with their dad on the very same day the province extended March Break by two weeks (ahahahahahahaha), making me a full-time single parent simultaneously with everything else. I remember a stack of library books I had no reason to finish because I had no way to return them. A sewing project that hung half-finished on the banister for a few months because I had no dance socials to wear it to. There’s plenty to latch on to, for moments that crystallize The Day Everything Changed.

But what keeps coming back to me is that small exchange at one of my last in-person dance classes: “I have a cold. It’s just a cold though, not that covid thing,” when I had just come from a workplace where everything had already been upended. And that little frisson of anxiety: Is this bad? How bad is it?


Nothing has changed much for us on the pandemic front so far this year. Echo is getting their strength and mobility back by leaps and bounds, but we are still dependent on PSWs right now, and they (rightly) won’t come in the house if either of us are exposed to or diagnosed with covid, so we still need paranoid levels of caution. I haven’t hugged a friend since last March. Echo’s ex-boyfriend visited us once for a few minutes in January, but otherwise, no one has been in the house except for Echo’s dad.

But it feels like we’re moving through 2020 in reverse: January was a repeat of December, with everything shut and Echo unable to move or get out of bed without a few adults helping them. February brought us back to November, with a bit of standing here and there and a few wobbly steps, and more time spent in the wheelchair with more comfort. March so far is like last October, with more walking inside the house and less reliance on the wheelchair, but stairs and outside walking out of reach. Still, we can see September 2020 in our sights in the not-too-distant future: limited stairs, walking outside, building up strength. Maybe by this June we’ll hit last June, and maybe by then I’ll have a vaccine, and we’ll be able to use the whole house and the backyard too and be able to get out together and have fun. I hope so–I think it’s reasonable, based on what we’ve done so far this year–but one day and one week at a time.

What I can say is that this weekend, for the first time since last November, Echo is going to their dad’s. We are all very, very excited.


I asked Echo, but they have no clear memory of The Day Everything Changed for them. I guess being stuck in the house anyway all the time would make it harder to have a singular memory to latch something so significant on to (but I’m just guessing).

How about you? What does your mind take you back to, for the moment you realized we were in for it?

post surgery stretchy pants

An actual sewing project!

So: last summer I made myself these shorts:

Then I adapted them for Echo, and made them a few pairs.

Good thing, because we’ve really needed that pattern this fall and winter. When we got the surgery dates, I reached out to the Occupational and Physical Therapists to ask them what kinds of pants we should be getting for after surgery. I mean–how do you put on pants when you can’t put weight on your feet? You must need help, right? And so what kinds of pants are the best for other people to help you put on?

The first suggestion was a link to an online store that sells pants for after hip surgeries, but those sites are all meant for average sized adults, not teenagers with dwarfism, and I knew there was not a chance they would fit without major alterations that I didn’t want to have to monkey around with for very expensive short-term pants. So I pressed them for the characteristics of good pants, and was told that they should be stretchy and easy to pull on and off.

After looking through patterns for a while, I thought I’d just lengthen the shorts I’d already adjusted for them and make a few pairs out of inexpensive poly jersey to start with. I got these from Fabricland for less than $5/m, so they were $10 pants once you figure in the elastic, and it’s a brushed poly so they’re snuggly and soft.

This grey cotton knit from Needlework was a good neutral, and also soft and easy to wear and wash. And then a purple fleece pair from the deep stash (I made Echo some pjs out of this when they were, I think, seven or so, and there was enough left over for these).

I have a tan (or ‘fawn’) ecovera jersey from Needlework for one more pair to round out a week between laundry loads. Lighter weight but a good neutral again.

For all of them, I left the bottom unhemmed and a bit long. A) pants tend to ride up in wheelchairs, and I knew they’d be in a chair for months, and B) I wasn’t sure where to hem them when I knew their legs were going to be lengthened but couldn’t be sure exactly how much. So they all have raw hems for now, and when Echo can stand comfortably again, I’ll figure it out. I also made them all a bit looser in the waist because Echo’s sitting down almost all the time right now, and this expands your waist.

These pants have been great. It’s easy for other people to get on and off quickly, they’ve been comfortable to wear lying down and in the chair, they wash well–I’m just pleased with them all around. In the summer we can always shorten them if we no longer need them as pants.

In recovery news:

  1. Pain medications are down about 85% from where they were when they were discharged. Echo should be off them all together in a few more weeks.
  2. Standing is going well. They’re up to just over 50% body weight for about 30 seconds at a time, which is much farther ahead than we thought we would be at this point.
  3. Echo’s now able to spend most of the day in their wheelchair, which means being more active and independent.
  4. We no longer need a second adult around for getting onto and off the commode, and are getting there with the wheelchair, as their leg mobility is almost back to normal.
  5. They’re doing online classes again, which is just great news. Only two this semester as a full load in addition to physio & rehab seems too much to commit to, but that’s still great progress. Not that we have any idea what physio and rehab are going to look like, since we still haven’t heard about the referral.
  6. And I am still working just one day a week. Sigh/lol. But I think at this rate I should be able to get up to two soon.

We’re now two months post-surgery on the first hip. I’m grateful and so relieved that recovery is going well.

the joys of medical experimentation

Every post about the surgeries themselves that I’ve tried to write starts turning into a book.

But I want to write something about them, since it’s the only time this kind of surgery has been performed on someone with Saul-Wilson syndrome, and I want a patient’s (or caregiver’s) perspective to be available somewhere for others to see if they need it.

Because there are so few people who have been diagnosed with this condition, it’s hard to figure out what the most common features are, but in terms of relevance for hip replacement, what I’ve seen in the one study that even mentions joint replacements is:

  1. Hips tend not to be well formed, and hip subluxations and significant arthritis are common
  2. Bones are “soft,” can fracture easily (in some cases without obvious reasons) and often don’t heal well, or quickly
  3. Average height for someone with Saul-Wilson is several standard deviations from the mean. Echo, at about 4′ tall, is the tallest person with the condition in the world right now.

What this tends to mean is that it is very common for individuals with Saul-Wilson syndrome to need some kind of hip surgery in childhood or early adulthood, that the surgery is complicated by the fragility and softness of the bones, and that techniques and tools developed on average-sized adults will not be appropriate. Joint prostheses tend to be much too large, even pediatric ones, and so ideally a patient would have a custom hip prosthetic made to the correct size and proportion for their body, and in that case–in the one situation where such a surgery has been performed–a standard hip replacement surgery can be completed, with a fairly short and easy recovery time.

Many orthopedic surgeons are uncomfortable performing joint replacements on young patients (<30 years old), for a variety of valid reasons, and many surgeons will outright refuse. In many pediatric patients, a hip osteotomy will be performed to postpone the need for a full replacement. In an osteotomy, the bones are essentially reconstructed in the joint to provide better coverage for the femur and reduce the subluxation and, basically, rubbing, until the patient has reached adulthood. However, in the case of Saul-Wilson syndrome, the osteotomies that have been performed have not been successful, because the bones don’t knit together properly. The one recommendation in the single study that discusses this is that osteotomies be a last resort.

So you are likely to need to find an orthopedic surgeon who is comfortable with performing total replacements on young patients, and who has access to custom hip prosthetics.

But let’s say custom hip prosthetics aren’t available. Let’s say there’s a global pandemic. Let’s say the best estimate any expert can give you for when a custom prosthetic might become available is a shrug, and thanks to the pandemic, health-care shutdowns and surgery delays and cancellations have already turned this into an urgent situation. Let’s say the patient is in pain even when they’re not moving at all. That simple actions like sitting up and lying down can be excruciating, even with all available treatments, even on opioids.

I’ll be honest: if we’d had any better options (if we had a date for the prosthetic, if we had better certainty around when a delayed surgery might be performed, if we’d known where we would fall in the priority ranking when surgeries would resume), we would have likely not gone this route. It has been very challenging, and because it’s the first time this has been tried, we won’t know for sure how it’s all gone until the recovery is over and we’re doing rehab. But here’s what our surgeon proposed:

1) Splitting the femur: because a prosthetic that fits Echo could not be used, they used the smallest pediatric prosthetic they could get. It was still too big, so to make it fit, they had to split the femur. There’s a ton of wire and, I think, some donor bone grafts holding it all in place, but still. For a person with average bones, that would necessitate 6-8 weeks of no weight-bearing activity, but Saul-Wilson means bones are soft, so the surgeon is being very conservative and there is no weight-bearing activity for 12 weeks. Until we have a few check-ups and x-rays, though, we can’t be sure how the healing is going or when weight-bearing will be safe to try. This is in contrast to operations with properly-sized prosthetics, where you are weight bearing, at the latest, the day following the surgery.

It’s also a lot more painful, obviously.

2) Bone grafts to build a rounder hip joint: Honestly not sure there would be another option here. It’s not an osteotomy since, as I understand it, they’re using donor bone, but how the healing goes is still an open question. I can tell you that as I write this, 6 weeks after the first surgery, Echo is comfortable lying on that hip. (They haven’t been able to lie on their right side for a long time, so this is significant.)

3) Lengthening the femur: This one has been the hardest, IMO.

Initially this was presented as a personal choice: would you like to be an inch taller? Echo went back and forth and eventually decided to go for it. An inch isn’t going to make a huge difference, but there are times when it would make life easier (like reaching a bathroom tap or a light switch etc.). We were told that the main risk is nerve damage but that it was minor, so long as you didn’t go for more than 1″.

In the hospital after the surgery, we were told that it was also necessary to provide extra stability given the whole splitting-the-femur thing. Who knows what’s true.

What I can tell you is this: yup, nerve damage is a risk. It happened. A few days of numbness followed now by at least ten days of burning and pins and needles. Not constant, but there, and worse when they’ve been doing physio or spending time sitting up. Lying down tends to make it better, but not always. They’ve been put on a medication to help with the discomfort of the nerves repairing themselves.

But it’s not just nerve damage. Echo’s also had intense muscle spasms (like both legs flailing around the hospital bed, and them unable to control it) and excruciating pain as the skin, muscles and tendons are all lengthened an inch the course of a two-hour operation. In retrospect this seems obvious, but we were blindsided.

There are medications that can control the spasms (baclofen, if you’re wondering). And there is a very strong medication that can be used short term to assist with the pain of the muscles stretching (cyclobenzaprine).

But in the meantime you’re not going to be able to bend your knees, because that will cause the muscles to stretch even more and, trust me, it’s a kind of pain you don’t want. Also there’s just a limit to how far they will stretch.

Six weeks after the first surgery, Echo could again bend the right leg for about an hour without substantial discomfort. Four weeks after the second surgery, some range of motion is coming back, but the left leg still needed support and couldn’t bend fully. This means that for a period of at least a month and probably more afterwards, you will need a wheelchair with elevated leg rests.

(You might think we’d be warned, but no. We discovered this after the first surgery when we had no safe way to get Echo home. An hour on a highway with a footstool propped under the operated leg led to howling with pain that we could do nothing about. Going back for the second surgery with the proper wheelchair was a lot easier. Coming home again was another story: the beginnings of nerve damage plus the muscle stretching made remaining in one seated position for more than a short period also excruciatingly painful, and Echo spent most of that drive screaming, and again, there was nothing we could do about it.)

The combination of no-weight-bearing plus no-knee-bending means that many of the things Echo needs to do–most importantly getting on to a toilet, but anything that involves leaving the bed–requires two adults nearby to assist: one to hold the transfer board steady, and one to support the legs. We’ve talked to occupational therapists and there are no tools that make this a one-person transfer, so in the meanitme, we’re arranging multiple visits each day–in a pandemic, yes–so Echo can pee. If that doesn’t count as ‘essential,’ I don’t know what does, but honestly, it’s a bit nervewracking.

Basically, if you can wait for a custom hip prosthetic, do.

If you can’t, line up a properly sized wheelchair with elevated leg rests in advance. Get the contact information of taxi companies that can buckle the wheelchair in, because you are not going to want to do a transfer into a car when you can’t bend your knees. If you have access to a transportation service that can accommodate stretchers, that would probably be even better, since–trust me–you are not going to want to sit up for a while. At home, you will need a commode with moveable armrests, and it will need to be as close in height as possible to the bed you are using for recovery. They should be positioned as close together as possible. You will need a transfer board. And you will need to have scheduled visits from two people at a time a few times per day who can help you transfer to and from the commode (and the wheelchair). Depending on what the hospital has available, you may want to bring your own commode in with you (we did, for the second one, because the hospital commode was enormous and it was difficult to get on to and caused Echo pain).

~

I feel like I’m not processing any of it. Not really. The hardest parts are just developing shells and becoming strangely hollow flashbulb memories, small moments of terrible encased in a protective coating and surrounded by weeks of fog. (Echo ready for the second surgery and waiting for the surgeon to come get them, and asking me, over and over, that it wasn’t too late to back out, we could still change our minds and go home, right? When they said that they were scared but still willing to do through with it, not because they trusted the doctors, but because they trust me. When the muscle spasms hit after the first surgery and we didn’t know what was happening, and I was trying to hold their legs still(ish), and she was crying from fear that the pounding would damage her split femur, and asking me if she was going to die. That first night after the second surgery when the nerve block wasn’t working, and I stood at their bedside, waiting for the light on the pain pump to light up so I could press it again and she could get a bit of pain relief and maybe a bit of sleep. The agony of their muscles stretching out, and none of the pain medications working, and them wailing, “why didn’t they tell me this would happen? I would have said no! I liked myself the way I was!”)

Their pain is much better now. They hadn’t been able to move their right leg independently for months prior to the surgery, and now they can, which is wonderful to see. Mobility in the knees is almost back to normal. They can spend much longer sitting up, and it doesn’t hurt, which also wasn’t true before the surgeries. We’re weaning off the pain meds, instead of just ramping them up every few weeks because the pain was just getting worse and worse. Things are already better than they were in November in a lot of ways, and if the physio goes well and the bones all knit up properly, I think by the summer it will all have been worth it. But there’s a lot contained in that “all.” It’s a very big “all.” I would have done almost anything to avoid it.

I am sewing and reading a bit, but it’s fractured and hard to put words to right now. I’ll think about a review or a post, and then the alarm will go off for meds, or a PSW or nurse will call, or we’ll have a virtual doctor’s appointment, or I’ll need to schedule a grocery pick-up or prescription renewal, and there it goes. Time has also lost all meaning; yesterday feels like forever ago, but at the same time, I can’t believe we’re halfway through the first 12-week recovery period already.

I hope you’re all well, and I can’t wait to have the energy and brainspace to write about other things.

fun facts about hospital stays in the time of covid-19

  1. Visitors don’t really exist. In the hospital Echo was at, most patients were allowed one visitor for one visit for their entire stay. That was it. For most of the patients, this was fine; they were cognitively fully functional and were, physically, ok on their own for relatively short 1-2 day stays. For one of Echo’s roommates, who had had a traumatic brain injury that she mentioned loudly in conversation at least five times per day, it was not fine. She could not make heads or tails of the medical and physical therapy instructions she was given, could not remember them, and could not relay them accurately to her husband. But that’s the rule: no visitors.
  2. If you are lucky enough to be or have an ’24 hour essential support’ visitor, then yes, you will be able to have that person by your side throughout your stay.
  3. But they will not be able to remove their mask for any reason at any time, including to eat or drink or sleep. They will be told to eat before they come to the hospital, and after they leave. Which is an interesting trick if you’re there for 24 hours or more.
  4. The family/visitor lounges are closed. Essential care supporters will be ‘sleeping’ in upright chairs in the room with the patient. Actually they’ll spend about 23 hours per day in that chair.
  5. You will not see covid patients. This is not because they don’t exist, dumb-ass; it’s because covid patients are in isolation.
  6. A large number of covid patients in isolation means that private and semi-private rooms exist only theoretically, and you will not be able to access one, no matter what you checked on the intake form.
  7. If the ‘essential support’ person needs to eat or drink, they will be told to leave the hospital to do so. You can try sneaking into the half-closed food court and buying meals there, but technically it’s only for hospital staff, and you will get a stink eye. Or you can try finding a fast food place that is serving food, but the city’s in lockdown, so you will still need to eat your food outside. In the cold, or the rain, or the snow.
  8. If you do sneak down to the food court for a snack, be warned that the posted hours may not be accurate; restaurants will open and close at odd times, some will never open at all, and your best bet is to eat something large-ish around mid-afternoon in case everything is shut at dinner time.
  9. Don’t leave for too long, because your kid can’t get any other visitors, so now they’re alone, and possibly in pain. And scared. And god knows that’ll be the fifteen minutes the surgeon will drop by to talk.
  10. You can’t eat, drink, or sleep in the hospital; you’re only allowed to use one bathroom down the hall; there’s nowhere to wash your hair or brush your teeth; but you will be put to work with bedpans, hygiene, transfers, and so on.
  11. There will be nowhere to buy socks, underwear, fresh clothes, books etc. if you run out.
  12. If you run out of clean face masks, you will not be able to get more from the hospital. Maybe you could buy some from the pharmacy?
  13. Until they change the hospital face mask rule literally in the twenty minutes you are outside the hospital looking for somewhere to buy clean socks, and now you will only be allowed back in the hospital if you are wearing a hospital face mask.
  14. There will be line-ups at the elevators due to the ridership limits. Those line-ups will be worst first thing on weekday mornings, and basically vanish on weekends. Time your snack or prescription breaks for mid-morning, mid-afternoon, evenings or weekends. Finding an elevator going down with space on it will take a very long time on weekday afternoons; just get on an up elevator and wait for it to turn around.
  15. Unaccountably, even in the hospital, there will be one person hanging right over your shoulder while you wait in the elevator line.
  16. You will not be allowed to wait inside the hospital during the surgery or immediate recovery, and it doesn’t matter if it’s pouring rain or below zero. Also, all of the local cafes etc. are closed–lockdown, thank you!–so there will be nowhere warm or dry for you to be. And no one can or will tell you about this in advance, so you will not have a hotel room on standby or any other plans.
  17. In normal times, there is a pre-operation Hip Replacement Class at the hospital. During covid, this class will not be held. They will not mail you the handout in advance instead. You will get it in the hospital, after your surgery, including the checklist of essential recovery items that you will not have had time to buy.
  18. Not that it applies to you, because it’s 99% for standard hip replacements, and your kid didn’t get a standard hip replacement. Thanks to their size and condition, the surgeon had to split the femur. They will not be able to put weight on that leg for three months, give or take. The only part of the booklet that does apply to you are the bed physio exercises that can be done lying down.
  19. That’s not really a covid thing, though.
  20. Everyone you talk to will have a different set of rules for you to follow. When you point out that the rules don’t match from one hour to the next, they’ll shrug and tell you that the rules are changing very fast and no one really understands what they all are. Eventually, you’ll stop asking and just do what you need to do and hope no one kicks you out for it.
  21. You will not be able to kiss your kid. Because, mask.
  22. There are so many people waiting for a chance to have their surgery done, though, that despite how challenging it is, that every so often, walking down the hallway or watching your kid sleep, you’ll be overcome by the thought that, holy crap, the surgeries have actually happened, and you’re not just waiting for a date and hoping it doesn’t get cancelled. Knowing that there are thousands of people waiting at home for the chance to be where you are will hit you at odd times for no obvious reason; in the middle of a paragraph in a book you’re trying (and failing) to read, trying to stay 2m apart from other customers while waiting for your tea at the Second Cup, doomscrolling through all the evidence that the latest lockdown isn’t working. Holy crap, it’s done. It’s done forever. We won’t know until March at least whether this will do everything we hoped, but they can’t put the old hips back in, no one can take the surgeries back.

Happy Old Year’s End

New Year’s Eve has a whole other flavour this year, doesn’t it? Less “Hurray! Let’s celebrate the start of another year!” and more “Is it dead yet? Are we sure? Should we set the corpse on fire to be on the safe side?”

I’m drafting this in November–already looking forward, yes, but also anticipating that December is going to be busy. But if there’s one thing that’s been clear for months now, that we can all come together around, it’s that 2020 has been shit. So I feel pretty confident that this post will still be current and appropriate on Dec 31.

I know, you know, and everyone who passed elementary school math knows, that the pandemic isn’t over yet, and we’re not going to flip a switch on Jan 1 and be at the end of this long hard strange year we’ve gone through. (Remember the Australian wildfires? Can you believe they were only just about a year ago?) How long it takes to end this chapter is going to depend on, basically, how successful anti-vaxxers have been in misinforming people over the last few decades about one of the biggest medical triumphs our species has ever had. I don’t know about you, but I will be getting vaccinated as soon as I get to the top of the list for one. Please, dear god, yes, let’s with all possible haste get back to a world where we don’t view strangers in public as dangerous infection vectors.

Still. Even knowing that the transition from Dec 31 to Jan 1 isn’t any kind of magic, I can’t wait for it to happen. I’m ready to burn the damned thing in effigy.

The surgery saga is too complicated to get into much detail right now; both surgeries were completed though, and we got home from the second one in the evening of Christmas Eve, but much too tired to have all the regular celebrations on time. So we did our Christmas Eve traditions on Christmas, opened presents on Boxing Day, and had our dinner on the 27th. We’re still acclimating to the recovery requirements. The surgeries were more complicated than a standard hip replacement, so there’s no weight bearing activity for at least three months–and given that this is is the first time this surgery’s been performed on someone with Echo’s skeletal condition, I’m taking that three-month requirement with a grain of salt so that we’re not too disappointed if it turns out to be longer. It’s going to take time to establish a new routine and feel comfortable with all the new processes for meeting their daily needs, but the hardest part is (/should be) behind us.

What I will say for now is how strange it is, to have had surgeries (or supported someone through surgeries) in Covid’s second wave. On the one hand, I’m so incredibly grateful that we were able to have the surgeries at all, given the restrictions and cancellations that so many have had to deal with. On the other hand, being in a hospital right now is hard. The rules on visitors, masks, eating, reduced space availability, lockdowns in the surrounding areas, all made everything so much harder, and these surgeries were already going to be extremely difficult. I’m still waiting to find a still point between those two poles from which to process the rest of it, and in the meantime, I’m mostly just numb.

I hope all of you are whatever passes for “OK” this year. I hope you and yours are safe and warm, fed and loved. I hope 2021 returns to you as many of the things you miss most as possible.

organizational culture is toxic

I know! Months between posts, and then two in one week.

This isn’t a new thought, but it’s one that keeps coming to me, and I’m curious to hear what you think:

Organizational culture is toxic.

It fosters us-vs-them thinking. The loyalty it creates among members makes it hard to, for instance, speak out against bullying or abuse. But it can also turn the world outside the organization into an enemy.

This is true for any scale of organization, from the family to the nation-state. But it is particularly damaging when the organization in question exists to serve the community or ‘other’ it’s standing in opposition to.

Police forces are the most obvious examples: police culture encourages an us-vs-them mentality in which police officers bond together against outsiders, even though the ‘outsiders’ are the reason they have their jobs in the first place. And you end up with the ‘thin blue line,’ and police brutality against ‘outsider’ (read: client) populations considered dangerous due to bias and bigotry.

But the same dynamic is in play elsewhere. I’ve never worked for a government agency, for instance, where some version of us-vs-them organizational culture isn’t in play and doesn’t lead decision-makers and leaders to treat the communities they exist to serve as trouble-makers they need to subdue somehow. In the city I work for, this has most recently and most publicly manifested in city councilors verbally attacking “citizen activists” who delegate to council. When delegating to council is their right, is a part of active citizenship and democracy, and they represent the communities that council exists to serve. It’s not just council, of course. I’ve heard managers say the same: “so-and-so is an activist,” as if being an activist who cares about your community is a crime.

As destructive as this is, it’s obviously much worse from the police, because officers are delegated to use deadly force and have wide latitude in how to apply that authority. Citizen delegates are criticized and humiliated, but not shot.

It struck me today that organizational culture can be deadly in medical organizations too, though, particularly for disabled and chronically ill people. They can’t shoot you, but they can withhold and deny treatments, prescriptions, appointments, etc. Government policies and regulations sometimes require them to do so. This puts medically vulnerable people in needing to stay on the good side of the very people who have often done them the most harm.

One example: until the beginning of the pandemic, I’d used an insulin pump for years. It worked well fifteen years ago, but my blood sugar control had been terrible for years. I’d often end up crying during appointments because nothing would work. I tested frequently, I diligently used correction boluses, etc. But my blood sugar meter wouldn’t reliably connect with my computer so I could only access my numbers during brief doctor’s visits, and it takes time to make changes to pump settings–time that I don’t have, as a caregiver of a disabled kid, and as someone whose insulin sensitivity fluctuates frequently. What works one week often doesn’t work the next.

Provincial regulations require that anyone using an insulin pump see a specialized endocrinologist’s office every three months at least. Pumps are expensive, and private insurers no longer cover them here because of the government program. So: for years, I was required by law to take half a day off every three months to drive to a doctor’s office 45 minutes away where they had no information that could help me and did everything they could to discourage me from going off the pump.

During the pandemic I insisted. My blood sugars are now normal–or close to it–for the first time in over ten years. And now I have the freedom to go to any doctor I want. I don’t know what kind of long-term damage I’ll have sustained from a decade of bad blood sugar control, but I felt both completely powerless and also dependent on the people who were insisting I continue using pump therapy.

They’re not evil. They just have an organizational culture that seems pumps as always and inherently superior and any patient who sees otherwise is a trouble-maker.

Another example: After waiting since August to get some questions answered about Echo’s post-surgery care, I threw a (very temperate) fit when the pre-op was delayed (again, to three days before the first surgery) and asked in strong terms to be referred to someone who could answer at least a few of our questions so we could make even some temporary financial plans.

I was told a social worker from the hospital would call, and one did.

And she was rude, condescending, and basically acted as if being a caregiver in need of information was shameful.

In essence she acted as if her job was not to assist the patient (Echo) or the patient’s support system (me), but was to protect the hospital against foreign influences. I wasn’t the reason that she has a job, you know; the population her role is meant to serve. I was an inconvenience getting in the way of their internal processes. Organizational culture at work yet again.

It doesn’t have to be this way, and it isn’t always. Echo has some superstar doctors and physiotherapists, and we treat them like gold because we know just exactly how precious that is. And I’ve somehow managed to survive working for several government agencies at different levels over 25 years while keeping intact my belief that my salary comes from serving the communities and protecting their environment (which has at times gotten me in trouble with my managers).

I got pretty mad at this lady. Not to the point of swearing and yelling, though I wanted to. I just hung up on her.

Imagine; I’ve waited over three months to have this conversation with someone who can provide some information on what kinds of support might be available in our situation, and I got, “well if it’s going to be THAT hard maybe you should postpone the surgery!”

You are dependent on people for the things you need to survive; required, by government policy and regulation, to be dependent on specific people who can choose to withhold what you need to live. It’s like being required to rent your housing from the police. You better be nice to them. Don’t complain too much about the heat or the windows or the leaky roof. Don’t demand repairs. Pay up promptly and with a smile every time and tell them how much you like their sweater. Don’t complain when the rent changes every month, or the rent due date, or the square footage on your apartment, because they’ll kick you out or shoot you and you will have no recourse. If they want to put the shower in the master bedroom closet, smile and have a productive conversation about where you would rather have the shower go, and be prepared to shampoo your hair surrounded by your dress pants because they don’t have to listen to you.

If you do make a demand, and they get mad, you’d better swallow what you’re thinking until after they’ve made some attempt at a repair. Because they can kick you out and there’s nothing you can do about it, and you’d rather have a shower in the closet than nowhere to live.

It’s less than a week until the surgery date (caveat: so long as the hospitals aren’t shut down again) and we have no information about the recovery. My attempt to get some answers was met basically with a flamethrower. And I’d better swallow it and be ok, because if she makes good on her quasi-threat to postpone the surgery “since this is going to be so hard for you,” it’s my kid who’s going to suffer for god knows how long with terrible pain that is worsening all the time. Or even if they’re just obnoxious to them in the hospital.

But it all comes back to the same problem: organizations developing a culture that stands them in opposition to the community they were created to serve, where the identity of belonging creates barriers to fulfilling a mandate, where clients and communities are re-cast as ‘outsiders’ and ‘trouble-makers,’ and leaving those communities with their needs going unmet by the very people paid to meet them.

Stitches

First, I’d like to say: I know all of the approved ways of managing stress and anxiety.

I know you’re supposed to move, ok? Exercise! I know. I know about healthy eating and getting enough sleep, connecting with loved ones, spending time in nature.

As it turns out, when you’re in the middle of a pandemic with a kid who can’t move, absolutely none of it applies.

Exercise! Sure. Except I can’t leave Echo* alone for very long. A walk around the block or to the library is about as much as I can manage, and that not very often. Echo is using a wheelchair now, and getting out with them is challenging–them plus the dog is extremely challenging, as our beloved Impossible Puppy loves nothing more than to careen from one side of the sidewalk to the other, investigating every passing odour, planting herself to the ground through her nose until they are fully understood, and heaving the wheelchair to and fro in her wake. Yes, she is ten pounds. Friends, she knows how to use them.

Healthy eating: Sure. I will get to all that fresh, healthy produce once I’ve finished making the next round of doctor calls, refilling prescriptions, and chasing the puppy off their bad hip for the tenth time today. (“Bad hip” being a relative term; the “good hip” is, right now, the one they can still move independently, but it still hurts, a lot.) Sleep would be grand. I would dream of sleep, if I could get to a dreaming state reliably. It is stress, in part; it’s also that, now that Echo’s bedroom’s been moved to the main floor (stairs are out of the question; the pain is terrible, and their balance is worse. I lived in terror of their falling), I can’t get up and out of bed and go do something else when sleep is hard to come by. Echo’s not sleeping well either, for obvious reasons. There is one position they can normally sleep in.

Let me describe this in more detail:

They can’t lie flat on their back; the angle causes too much pain in their hips (incidentally, this makes hair washing a treat, since the only gizmo we could find to facilitate hair washing for someone who can no longer get into or out of a shower necessitates lying flat on your back. So instead of this being a relaxing break from difficult circumstances, hair washing is a painful exercise we carry out only when absolutely necessary). Lying on the side of their ‘bad hip’ is out of the question. So they can sleep right now only when positioned carefully on their ‘good hip’ in such a way that the bad hip is also supported relatively comfortably.

They start in a seated position, then use their right hand to lift the right knee up slightly, and maneouver the left foot in underneath it, then down towards the ankles so the legs are crossed there. Then, very very slowly, they lean back and to the left to use the weight of the body to lever their entire self to their left-hand side. There is normally some pain, even on a good night, as the hips are jostled around, but if they move slowly enough they can get to a sleeping position. We put on the TENS machine and I bring over an ice pack or two for anywhere that needs it and we cross our fingers for a restful night.

On a bad night, even this doesn’t work. Getting into the sleeping position involves screaming and crying for an hour. Or once in it, their ‘good’ left hip starts to hurt, and they can’t sleep after all. There have been nights without sleep from pain.

So: if Echo is asleep, I can’t leave my room. Or I could, but I’d risk waking them, and starting all over the whole process of “I can’t find a way to lie down that doesn’t hurt.”

Exercise, nutrition, and sleep, then, are pretty well out, for stress-reduction purposes. Nature is out, except again for short walks. Connecting with loved ones is, shall we say, fraught. In person is out, except for brief distanced visits. Over the many months of working from home I have come to hate video conferencing; I have to do so much of it for work. So it’s texting and phone calls, when we can, with friends who are also dealing with hardship and loss and have less to give themselves.

No need to say that having someone over to give us a hand or even just be a novel face for Echo to interact with, instead of having to look at me and only me day in and day out, is out of the question.

I have been doing some sewing; mostly a stack of post-surgery pants for Echo.

(Surgery hasn’t happened yet, but we have a new-new date: Dec 3 for the bad hip. There was one pre-surgery appointment last week, and there should be another one this week. In fact I am writing this post as a way to distract myself from hovering over the phone, as we’ve been told they should call with it today. I should be working; I can’t work. We’ve been told this date will only be changed again if the hospitals need to close. Of course, Toronto’s covid numbers are surging and the hospitals are filling up with covid patients. So.)

Otherwise I haven’t really been sewing clothes. The pandemic wardrobe I sewed myself in a flurry in the spring is still enough. According to the 30 Wears app, I’m just hitting 30 wears on the first of those makes.

Also, I’ve lost any sense of what constitutes appropriate dress over the past nine months, a fact that normally comes home to me most forcefully when I’m in line to pay for my groceries. Wait a minute–does this shirt go with these pants? Are these pants? What does ‘going with’ mean? Is it gauche to wear socks with this outfit? Did I remember to comb my hair today?

I should probably wait before sewing myself any clothes, is what I’m saying.

What I have been doing for stress relief, mostly, is embroidery.

Also a bit of art journaling, but mostly embroidery.

Mostly with scraps and stash items. There were some projects I was a bit short on, like the fiddlier goldwork threads, and some finishing items needed, like the pendant fittings, but on the whole, it’s been scraps and stash.

First: goldwork bugs, inspired by a beautiful goldwork reindeer in a recent issue of Inspirations Magazine, which I told myself I could consider after doing some kind of goldwork skills development with the materials I already had.

Second: A stumpwork pouch, just because the colours and fuzziness pleased me. Stash linen. I did have to buy a zipper. The actual embroidery for this wasn’t difficult or time consuming, so I plan to make another one, this time with more care for the closure.

Third: Because I enjoyed the turkey knot stitch so much, a bunch of little stumpwork bees. Yes, they are three-dimensional. The wings are wired. Stumpwork at such a small scale is very challenging because everything is so fiddly and all the stitches are tiny. But they worked out well. The above pendant is about half an inch in real life; it is a teeny, fuzzy stumpwork bee about the same size as an actual bee.

Fittings for embroidered pendants were purchased from Nunn Design, and were very easy to use.

Fourth: Applique pouch. Not done yet, obviously. Eventually it will be a dogwood applique. The pouch is then quilted. The ground fabric is leftover from a suit I made last year, and the patches are all scrap as well, as is the lining and batting.

Fifth: A floral cross-stitch on this black bamboo jersey top I made years ago, and never wore. Because it’s black, friends, and I’m allergic to solid neutrals, except for small quantities of warm greys and some browns. I used a bit of 14-count water soluble canvas and paper stabilizer and stitched over two squares to make it a bit chunky. (The shirt, by the way, is a Renfrew, modified to have a gathered front.)

Sixth: A mountain of holiday cross stitch projects: cards, tags, decorations. Because. Look, if you want mindless busywork to keep your hands occupied and your head focused on something manageable, cross stitch does the trick.

And if you make a mistake, you just pull the stitches out.

I do realize that this is a large pile of embroidered objects and I can’t possibly use all of them myself. I mean, one santolina pouch is already questionable, but two? Three stumpwork bee pendants? What am I going to do, wear them all at once?

No. I’m going to be giving a good chunk of them away. The function for me is just distraction and busywork so I don’t go crazy worrying over things I can’t control. Once they’re done, they no longer have a function for me. A few I’ll keep as remembrances of 2020, but most I’ll be glad not to see again.

Handwork is useful because it’s small, portable, doesn’t need any electrical devices, can be done well with small scraps, and is one-size-fits-all, so easier to give away. I’m hoping that this will be something I can do in the hospital during the surgery and immediate recovery. I guess we’ll see. Everything is still up in the air; if the surgery goes ahead on Dec 3, we still don’t know much about the recovery itself, except for “3 months in a wheelchair per hip with no weight-bearing activity.” And even that’s a bit of a guess, since the skeletal condition necessitating the hip replacements could very well complicate healing, and there’s no way to know as there’s no medical record of someone with Echo’s condition getting this kind of surgery.

I’ve been staring at this screen for an hour trying to think of a neat and tidy ending (of note: the deadline for the appointment call passed while I was doing so, so it’s time to harass doctors’ offices again), but the only thing we know with any certainty about the next year of our lives right now is that Echo’s pain will increase until the surgery.

~

*Echo/they is not really new, but they’ve been asking me not to make any announcements or use the new names or pronouns online for a while. Until they asked me to stop using the old ones recently, and weren’t keen on the idea of an announcement. So yes, I bet this is confusing, but there you go.