I used to be a spinster.
Spinning wool might not have been the most practical skill in the sense of career opportunities, but I could turn a pile of fluff into yarn strong enough to knit with. Like in a fairy tale. I also liked calling myself a spinster because I was married, and to a woman, which I thought put me several degrees removed from a world where DIY competence equaled old maidism.
I’d reclaimed spinning as a radical handicraft. I was a spinster badass.
In my mid-twenties, in the small Canadian town of Perth, I learned to spin wool on an upright, foot-pedaled spinning wheel. The very first skeins I’d spun were underspun or overspun, slubby or kinky. The slubby yarn pulled apart from itself under any tension, and it broke when I tried to knit with it. I’d have to tie the ends back together with a weaver’s knot and hope it wouldn’t show in my final toque or scarf or oven mitt. I’d also spun single-ply skeins so tight the fiber kinked up on itself the way extra long phone cords used to drape, coiled and twisted, on kitchen walls. The overspun yarn was hard and inflexible instead of soft and lofty. But despite these mistwists of a steep learning curve, I kept at it.
The meditative rhythm of spinning calmed my nerves, making both me and the fibers stronger and more resilient.
Collagen fact #1: Collagen fibers aren’t monolithic; collagen comes in over twenty different types to structure not only joints and skin, but also cells, membranes, blood vessels, organs, bones.
One day, I sat spinning wool in our cold brick house with our cranky old tortoiseshell cat, Delilah, curled up by my side. I suspected Delilah had the feline version of my chronic illness, Ehlers-Danlos Syndrome, faulty collagen that threw her posture and movements out of whack. When I picked her up, she flopped more than other cats, and I handled her gently to her keep her bones from disconnecting. She spent most of her days in the basket by the woodstove, only moving for available laps or spinning sessions. Her curled body impeded access to my pile of wool rovings, but I didn’t move her. I liked her warmth too.
My relationship with Delilah had recently improved. She’d taken to the basket by the woodstove soon after we’d brought her home from the animal shelter. At first, I’d sit next to her basket saying unconditionally loving things about the quality of her fur, but as soon as I touched her, she’d let out a tone-deaf howl. What was going on? Why wasn’t she soothed by my feline-oriented sweet nothings? But after I figured out she was deaf and stopped sneaking up on her, she became more affectionate and less inclined to howling. I learned that if I wanted to pet her, I just had to move my hands in front of her face to catch her attention first. She liked spinning because she could tell by the bounce of the couch cushion if something in the flow was about to shift.
I’d gotten better at creating even twists, neither slubby nor kinky, at spinning yarn both strong and soft. On that particular day, I planned to spin two-ply strand of a wool/silk blend. Silk, which has a long staple length, could be spun loosely and remain strong, but most wool, which has a short staple length, needs more twist to hold it together. One way to make short staple length wool stronger is to ply it with silk, whose fibers are slippery and long. It’s hard to knit with silk on its own because it has no elasticity, so it’s more likely to snap than bounce when pulled, and it doesn’t take instructions well. Kind of like how girls with shiny, straight hair complain that hot roller curls won’t ever set. Not enough barbs or kinks. In contrast, wool is grabby and impressionable, with lots of little barbs that only want to hold onto other things as tightly as possible. That’s why it felts with heat and water and agitation. It’ll do whatever you tell it to do if you set its new form with water and let it dry that way.
Wool and silk work well together, building on each other’s strengths.
Collagen fact #2: Collagen molecules are made up of three polypeptide chains in a triple helix. Three-ply for strength.
Before I started spinning, I integrated the wool and silk fibers using my carding paddles, which looked like fine metal hair brushes and sounded like velcro. I lay tufts of each fiber on the bed of metal spikes that, by brushing the paddles together, distributed the barby wool and the slippery silk. Carding got out the tangles. It stretched and aligned the fibers, and that alignment made the fibers ready for spinning into fine yarn and, later, the tension of knitting and the wear of clothing.
In addition to twist, fiber alignment also creates tensile strength.
Delilah glared at me, irritated by the jerky movements of carding when she’d come for rhythmic pedaling. But just as I’d finished integrating the wool and silk, and lined up the fluffy tufts on the back of the couch within easy reach, I felt a sharp chest pain. It stabbed right at the level of my heart and held steady. I held my breathe and waited for it to pass. When that didn’t work, I tried breathing deeply, but expanding my lungs only increased the intensity of the jabbing. I looked at Delilah pretending to sleep, eyes open just wide enough to monitor my movements, and decided it was nothing.
My body hurt continually. Why should chest pain be any different?
I tried to ignore it in favor of more important things. After all, I’d only just begun the first ply. After that I’d need to spin the second ply on a second bobbin and then spin them both together on a third. Two-ply yarn is much stronger than single-ply yarn, but it takes three times as long to spin. I never added more plies than two. In any case, my plan for the morning was set.
With my metal orifice hook, I fished the lead string through my spinning wheel’s orifice and started pedaling. I attached the tufts of loose fiber to the freshly twisted strands being pulled through the orifice by the spin of the wheel. Pedaling speed, and the amount of fiber released into the orifice between each spin, controlled the tightness of the twist. Slow pedaling and fast release of the fiber created a lofty, loose twist, while fast pedaling and a slow release of the fiber created a dense, tight twist. Depending on which way I spun the wheel, the fiber twisted left into an S twist or right into a Z twist, based on the direction of its slant. I preferred spinning clockwise. Z twists. I’d also grown to love slubby yarn, just strong enough to knit with, the kind that goes from thick to thin in no particular pattern. I created richly textured yarn good for a very specific, lumpy style of winter accessory. I thought my finished skeins more beautiful than the winter toques they eventually turned into.
Delilah shut her eyes, finally relaxing into the warm rhythm she’d come for.
Collagen fact #3: A genetic mutation may weaken triple-helical collagens in many different ways, such as through wonky alignment, attachment, length, thickness, or twist.
But when, in addition to the chest pains, my left arm started going numb, I stopped spinning. I leaned back on the couch, trying to reposition myself in a way that eased the jabbing. It didn’t work, and my shallow breaths had made me light-headed. Was I hyperventilating? Should I call an ambulance?
Delilah opened her eyes a sliver, willing me to keep going with the wheel.
In general, I avoided doctors. They couldn’t fix a genetic disorder, after all. “Be careful,” they’d said when I was first diagnosed at ten years old. And, in the previous few years, I’d rarely sought medical attention and had no primary care doctor at all.
“We call patients like you orphans,” my one-time Canadian nurse practitioner had told me inside the RV that had been converted into a roaming mobile clinic. It sounded about right. Were young medical orphans even allowed to go to the emergency room for chest pain?
My head kept spinning while my body froze.
I knew the chronic burning of nerve pain. I knew the acute pain of misarticulated joints and sudden falls. But the chest pain was different. It stabbed at irregular intervals, and it didn’t happen every day. I knew I was at risk for spontaneous arterial rupture, but I’d thought the risk was small. Besides, I’d already gone to the hospital once for chest pain when I was eighteen. The doctor had said everything looked good but that I should still be monitored. Which was it this time? The same false alarm, the need for monitoring or, worse, my heart exploding.
I remembered something about how a numb arm was a warning sign of a heart attack, so I struggled to the computer to look up whether I should go to the hospital with acute chest pain and a tingling arm. I needed reassurance that, if I went, I wouldn’t be dismissed. That it wouldn’t be a waste of time. I needed to talk myself into taking myself seriously. The internet confirmed that, yes, I had emergency room-worthy symptoms. And when I let myself acknowledge that I might be dying for reals, I started to panic. Did I have enough time to walk to the hospital a few blocks away or would that cost me my life? I couldn’t drive because Kat and I shared a car, and she’d already taken it to work.
I called an ambulance, shaking.
Then I returned to the couch to wait for the EMTs to arrive, guilty that I probably wouldn’t finish spinning my morning skein. That two-ply yarn, strong enough for a sweater, would have to wait.
Collagen fact #4: Triple-helical collagens bunch together to make fibrils, which are meant to be striated end-to-end like stairs.
When the EMTs arrived, my heart still raced. Delilah remained oblivious to the noise and intrusion of the siren and the pounding at the front door, and had returned to her basket by the fire. Before they put me on the stretcher, the EMTs taped wires to my chest and ankles to monitor my heart with their little machines.
They asked what I’d been doing when the chest pains had started. “Reading,” I said.
My spinsterhood had felt like a liability, now that everything I said would be judged as part of an official record on whether my pain mattered. Would the fact that I was a badass married queer spinster make me more or less worthy of respect?
“Reading,” the EMT repeated.
What was my excuse for being a twenty-something woman “reading” at home on a weekday morning?
“She’s tachycardic,” he said to the other EMT, a woman who didn’t speak.
Was ‘tachycardic’ EMT speak for a panic attack? Did he think I was just some hysterical girl, worked up over nothing? Part of me knew I wasn’t worked up over nothing, and another part of me knew that the dismissal of a random EMT could mean life or death. And who wouldn’t be panicking in the face of a potential heart explosion?
They loaded me on to the stretcher. “Are your parents home?”
“I don’t live with my parents,” I said, stiffly, as they rolled me down the sidewalk and into the back of the ambulance.
On the drive to the hospital, “What’s the name of your condition again?”
He repeated “Ehlers-Danlos Syndrome,” mispronounced, to whoever was on the other end of the line in the ER, and my heart slowed down, even though the stabbing chest pain continued. After he hung up, he hovered over the plastic dome covering my face.
“Do you have a tendency to exaggerate?” he asked.
My throat tightened. We both knew I couldn’t answer while trapped under that oxygen-pumping face mask.
Collagen fact #5: A genetic mutation may also affect fibril formation, how the different types of triple-helical collagens bunch together.
At the hospital, the people in scrubs ran tests, wheeling me in and out of little rooms. My heart rate stabilized, and I started to breath the same oxygen as everyone else.
The doctor took me seriously. “What type of EDS do you have?”
“I don’t know,” I said. I explained how my diagnosis at ten years old hadn’t included genetic testing, only clinical examination. But that my parents had told me the doctors didn’t think I had the most serious type, the one with the highest risk of spontaneous arterial rupture, or other organ rupture.
“You might want to find that out,” the doctor said.
I shrugged. Did it really matter? Floppy was floppy was floppy.
By the time Kat arrived at the hospital, panicked, my tests were coming back normal.
“I think your ribs might be out of alignment and poking or pinching a nerve, but your heart looks fine,” the doctor said. “Come back if it gets worse.”
And, like that, they released me.
Kat took me to a pub for poutine and beer, a warm, sticky juxtaposition to being hooked up to machines in a cold, beeping hospital. The beer tasted like I didn’t deserve it. My stabbing chest pains had only been due to misaligned ribs, not a heart attack. Had I been exaggerating after all? How big was my risk of spontaneous arterial rupture, really?
I had no idea.
When the chest pains returned, randomly, over the next decade, I never went back to the hospital. False alarm, I would tell myself. Just my ribs twisting and poking and pinching. Walk it off. Pedal through it.
Collagen fact #6: The type of collagen, and the location of a genetic mutation within that collagen’s triple helix, determines EDS type.
The specifics mattered.
Alyssa Graybeal is a writer, freelance editor, and cartoonist on the Oregon Coast. This essay is an excerpt from a collection of humorous, interconnected personal essays about living with an invisible chronic illness, Ehlers-Danlos Syndrome, and for which she is currently seeking representation. More at www.alyssagraybeal.com or @floppyqueerdo on Instagram.