CRAFTING HOPE

CRAFTING HOPE

*June, 2021*

I’m writing on behalf of my daughter, age 16. I watch her as she chooses just the right yarn from one of the many baskets overflowing with colorful skeins around her bed. The light in her room is dim, so sometimes she shines a flashlight briefly to make sure she has the right color. Then she picks up her crochet hook and the granny square she has started, and begins adding rows around the center blossom. Stitch by stitch, a flower blooms.

Outside her heavy curtains, it is a perfect summer day. If this were a normal year, Elise would be celebrating the end of the school year by going over to a friend’s house, or heading to the Y to swim, or applying for a job. This year she had hoped to start lifeguarding, since she passed her qualifying course in the fall. Then after a day of social activities, she would relax up on her bunk bed with her laptop, her phone, her craft kit and the project of the day—whether crocheting, knitting, embroidery, weaving, beading necklaces or making friendship bracelets. She would work late until she fell asleep, with her knitting needles, scissors, craft wire and embroidery thread tucked around her.

But as everyone knows, this has not been a normal year. A week before Thanksgiving in 2020, Elise started feeling terrible. We thought it might be her sinus infection coming back—but testing showed it to be covid-19. She ate her Thanksgiving dinner in bed, on a Zoom with the rest of the family around the table.

The first week of December Elise was feeling recovered, and the health department cleared her to return to school. We thought her brush with covid was behind her. But on her first day back from school, I got a call from the school nurse. Elise had collapsed on her way to second period. We took her home and tucked her into bed. Going up to her room was one of the last times she walked on her own. Gradually Elise’s condition deteriorated. First she needed help to walk. Then she had difficulty getting up to her bunk bed, and had to move to a new bed on the floor. Then she had to take breaks from sitting up.

Now, six months after her illness, she gets dizzy if she sits up more than a few minutes. Every day is a battle with chronic chest pain and shortness of breath. With the exception of being lifted into a wheelchair for doctor’s appointments, her life is spent lying down. Too much light or noise gives her headaches, and her skin is painfully sensitive. She speaks only in a whisper. Too much talking, or nearly any exertion, leaves her exhausted.

What Elise has been suffering is called “long covid.” A small but significant percentage of people who have recovered initially from covid are left to struggle with the ongoing damage that the virus has caused to their body. For some, the recovery period takes a few weeks; for others, like my daughter, months go by with little improvement, despite an array of specialists and attempted treatments. We know the doctors are just feeling their way forward in the dark as much as we are, but it's hard not to be frustrated at the lack of answers. Long covid is maddening in its novelty.

So much in Elise’s life has changed. Yet some things are pretty much the same. Elise stays in constant touch with her friends, like always. They exchange messages and it doesn’t matter that she can’t talk aloud. She loves her animals (four cats, two guinea pigs, one fish, and one very affectionate dog), and like always, her face lights up when they come to her room for a cuddle. And Elise keeps her hands busy by doing crafts—like always.

When she was first quarantined with covid, she was on a friendship bracelet streak. She carefully carded and organized all her embroidery thread and looked up creative designs online. She even took requests from her friends for the themes they wanted—from rainbows to cows! If she couldn’t find a pattern that satisfied their request, she invented her own. She also enjoyed making wire rings and stringing beaded jewelry. Once her bead box upended, and we found beads on the floor for weeks afterward.

At other times Elise came up with ideas for working with fabric. I brought up bags full of old clothes and leftover yardage that she sorted through, cut and pieced together. From this stage I was gifted with a little purse made from stitched jeans squares, with a long lace strap—just the right size for carrying my phone around. A number of shirts also were repurposed as masks, a fitting project to protect others from what she is going through. But then she developed hand tremors as a side effect to a medication, and it became too difficult to handle fine needlework, so the fabric was packed away. (Fortunately, a change in medication has made her hands more steady again.)

At one point she tried using a loom. But that took up too much space in a room she couldn’t leave, so the weaving experiment ended early.

Next came knitting. When Elise was little, she would watch me knit (the one craft I know how to do!) and beg for lessons. I told her to wait until she was old enough to handle the needles, but she was impatient to learn. She quickly surpassed all I knew how to do. She had set knitting aside for a while, but picked it up again during her illness. I rummaged in my closet and found a variety set of knitting needles that had been passed on to me. Whenever we made her bed, we would find needles of various sizes poking out everywhere from the bedding!

One of her first projects was knitting a blanket as a birthday gift for her brother, in the colors of his favorite basketball team. This was a massive undertaking, with multi-colored piles of knitted squares stacked all around her. When she finally handed him the blanket, the enormous grin on his face made it all worth the effort!

After that, Elise learned how to knit little stuffed cats. She branched out with her own designs, making frogs, mushrooms, fruit, flowers—even a triceratops, which we gifted to my friend’s young son.

One day, Elise asked me for plastic bags. Thankfully, I kept a hoard under the sink. She cut blue, white and beige bags into long strips, which she wound into balls, called “plarn.” She then knitted this as she would any yarn. My Christmas present from Elise was a checkered plarn tote; her brother got a plarn wallet. Eventually, handling the knitting needles began taxing her strength, so we had to set them aside.

Then Elise asked me if I had a crochet hook. Though I don’t crochet, I had one handed down from Elise’s great-grandmother. Elise taught herself from videos online, imitating projects she liked. One of her first creations was an ambitious cardigan made from innumerable small granny squares, which lay in piles that the dog kept scattering, until she stitched them together to stunning effect. After that came a variety of crocheted tops, totes, pillows and stuffed animals, many of which went to the friends who came to visit her. But my favorite project was the baby blanket she crocheted for her new baby cousin, a gift for my sweet niece.

Elise has always had the goal of making her own clothes. In fact, we had finally set her up with a sewing machine last fall, and she had filled a desk drawer with patterns she was eager to try. Like so many other things, the sewing machine sits waiting for her to resume her normal life. But for now, she keeps coming up with ideas for creations that grow from her crochet hook for herself and her friends to wear. Her face lights up each time she snips the last dangling yarn on a completed project and holds it up for me to admire.

After she went through most of my stock, I put the word out that Elise was looking for yarn. Friends dropped off bags of yarn that had been lying in their closet or left over from projects. Other generous friends provided gift certificates to craft shops, which enabled us to buy a whole set of crochet hooks. Throughout this ordeal, our family has been lavished with loving care. With a stream of cards, meals, flowers, prayers—and yarn—we know that we have not been forgotten.

After her birthday, Elise and I decided that we wanted to say thank you to everyone who had shown her kindness. We printed thank-you cards, and to each one Elise taped one of her friendship bracelets or other hand-crafted item, chosen for that recipient. My daughter has a perfectionist streak; she doesn’t like to share her handiwork unless it meets her exacting standards. But this act of sharing was not about a perfect product, but a grateful heart. Compassion and gratitude stitch us all together.

On Elise’s bedside table sits a basket where she keeps her most-used items: whichever hook she is using for her current project, office shears (red-handled so not easily lost in her bedclothes), an embroidery needle, a pen, retractable measuring tape, sewing scissors cunningly shaped and painted like a long-billed bird, a small packet of stitch placeholders, and her inhaler. When she has to stop and lay still to get through a spasm of chest pain, or when she can’t catch her breath and has to reach for the inhaler, my soul aches for her. Sometimes I wonder what she would be doing if she wasn’t trapped in her bed by the cords of pain and weakness that covid has wound around her, like an evil spell.

Yet at other times, watching her clever fingers turn yarn into a yellow daisy, I am reminded that she is who she is, a teenager who loves to craft. She amazes me by continuing to spin gold out of straw. I can’t help but trust her story will move on to a happier chapter.

*POSTSCRIPT, September 2021*

In July, Elise was able to get vaccinated. Since then, we've seen some improvements. She can tolerate being touched without wincing in pain. Her senses of taste and smell are slowly reawakening. Best of all, she is no longer photosensitive, so we can throw open her curtain and let the sunshine stream in. Her nature-starved soul feasts on cloud formations, sunsets and moonrises. Tree branches wave breezily to her through the window.

After unconscionable struggle, the best gift was finally delivered to Elise's bedside: an oxygen machine. Instead of a nos e ring, my teenager wears a cannula, relief flowing through bright green tubing. With the oxygen she's had fewer headaches, less gasping, more alert time. She stays ahead in her virtual classes.

But in other significant ways, her struggle continues: the spidery pressure over her torso, stabbing chest pains, breathing difficulties, nausea and light-headedness if she tries to sit upright, and utter exhaustion after seemingly minor exertions. Her good days are better, her bad days are getting worse. And we still don't understand why.

While still running a twisty uphill marathon with insurance, we are hoping an upcoming trip to a pediatric post covid clinic might provide some answers -- and maybe, maybe a path toward recovery.

* LONG COVID INFO*

The medical community is slowly unravelling the mysteries of the condition informally called long covid (formally: post-acute sequelae SARS-CoV-2 infection, or PASC). Based on multinational research, an estimated ten percent of people who test positive from covid are still experiencing symptoms twelve weeks after infection -- even if they only had a mild case, or were asymptomatic. With over 229 million cases of covid worldwide, Elise's experience is tragically far from unique.

There is a remarkably long list of possible symptoms, including fatigue, headaches, brain fog, breathing difficulties, lingering loss of taste and smell, post-exertion distress, joint pain, cough, nausea, chest pain, and memory loss ... most of which are all too familiar in my daughter's case. Because the virus attacks multiple systems in the body, each sufferer experiences a different intensity and constellation of symptoms. The risk of long covid seems strangely independent of other health factors. Many of those who suffer are young, and formerly active and healthy, like Elise.

There are now a quantity of good resources online to learn more about long covid -- just to pick two examples, Johns Hopkins' overview of COVID ‘Long Haulers’ and the Healthline article, What Long-Haul COVID-19 Is Like for Children and Teenagers. If you or a family member may be affected, we encourage you to find a support community, such as Survivor Corps or Long Covid Kids. And ask for help when you need it. As Mr. Rogers famously advised, "Find the helpers." For us, they have made all the difference.

Elise is passionate about raising awareness and encouraging preventive measures so fewer people have to share her experience. Protect the kids, she says.