At some point, many years ago, I had two completely normal feet.
(Of course, I mean normal in the sense that they did all the things I asked them to do, when I asked them to do them, without issue. One’s version of normalcy is variable—some may have six toes and others may have none, and some may have feet that don’t move without help while others have one foot instead of two. Either which way, their feet do what their feet ought to do: behave within the confines of their expectations and within what they consider to be a reasonable timeframe.)
In this once upon, I did many of the things people do with their feet: I walked with them, through soft grass and hot sand and in cool puddles of water. I used them to carefully balance heel-to-toe whenever presented with a curb. Once, for an entire year in high school, I refused to wear shoes anywhere, not to school or on the train I took to school, and my feet were tremendously dirty and calloused and it was terribly satisfying how much the adults hated that I wouldn’t wear shoes. On really good days, I used my feet to run, and the pavement melted away beneath my soles and turned to liquid mercury in my veins. If I’m being completely honest, I took my feet for granted. I used them in the ways I always had, and they behaved as I expected, and so we continued to coexist in harmony.
That’s not to say I didn’t think about my feet, because they forced me to think about them. They’re not very big lengthwise, but they’re spectacularly wide. My second toe juts out like craggy shoreline, far beyond the stolid dependability of my big toe. My pinky toe turns outwards, like it can’t bear to face the same direction as the rest of my toes, ashamed of them as it goes wee-wee-wee all the way back home. My feet are a mixture of measurements that no shoe stores truly account for, and so I have to think about them every time I struggle to buy a new pair of shoes and in between all the times I’m shoe-shopping, as the pair I’m wearing falls apart with each step. My mother used to apologize for passing along her feet to me, which had thusly been passed along the matriarchal lineage to her, and which looked nearly identical to mine when lined up in a row. Shoe shopping was a nightmare that inevitably ended in tears, and if I managed to find a brand making shoes that mostly fit me, I bought them in excess to stave off return visits for as long as possible.
So my feet behaved, for the most part, though they were hard to clothe.
I don’t remember the first time I thought about my feet because they hurt. Not stubbed against the corner of the bed pain, or pinched into too-tight toeboxes. That pain lights up the switchboard of your brain momentarily but is ultimately fleeting and forgotten. I think I must have been a teenager; in all likelihood, I was a hostess in a restaurant and I’d spent long enough on my feet that they were sore from shuffling customers between front door to table and back again. Then I became a waitress and stacked full trays of food on top of that, and I perfected the snappy walk-run that moved me from table to kitchen and back again faster than a guest could hold up their empty glass and shake their ice cubes demandingly. Some days in the restaurant I never sat down, not even on a 19-hour double when I was too busy serving others to stop and serve myself a meal.
I finished my first degree and moved on from the restaurant to mortuary college. When I graduated I fulfilled a childhood dream by getting a job at a funeral home. None of my textbooks about embalming or funerary rites taught me how much time I’d spend on my feet while at work. Draining someone of their blood and replacing it with formaldehyde is a slow process; slower still when the body wrapped around the venous system has been bent and broken into shattered mirror pieces before death. Holding a still-alive someone upright in front of that rebuilt body, while they gnash their teeth and wept tears enough to fill the pews to overflowing, requires good arch support and strong ankles. I was glad I’d cut my teeth (toes?) in non-skid shoes on the slippery tile of kitchens and booths before shifting to prep rooms and chapels; without those seven years of practice, I’d never have been able to keep up. Some days in the mortuary I never sat down, not even heading into overtime after a 40-hour workweek when I was too busy serving others to stop and serve myself a dose of rest and compassion.
After all those years, pain in my feet had become as normal as the fact that their width stretched and strained against the fabric of a shoe until it capitulated, left limp and listless and needing to be replaced. But the first time the pain in my feet evolved past a throbbing ache and into an unrelenting scream, a pain I can remember even now with startling clarity—a difficult task in a body so perpetually plagued with such a myriad of hurts that they run into one another like watercolors left outside during a rainstorm—I was working a service at the mortuary. I was standing by the guest book wearing a trim black suit. The book was offered up like a sacrifice on an altar, its spine cracked so it lay flat and open on the wooden stand, the name of the decedent printed in curlicue cursive just above. An old man flirted with me as he signed his name in the book; once you hit a certain age, the reality of death becomes humdrum hohum, shifting each funeral into a social soiree where you meet up with your friends to tell war stories until eventually you’re the guest of honor displayed center-stage on bier. He jotted his swashes and tittles with a flourish and winked at me and good christ, it was all I could do to usher him into the chapel without biting off the tip of my tongue. Every other step sent a cattle-prod bolt arcing up my left foot from my toes into my ankle, electrifying my calf and rusting my knee into creaking submission. I hid a limp—just barely!—and dragged myself back to the stand, my jaw clenched with the agony of movement. Every time the room emptied, I stepped out of my shoe and flattened my foot against the carpet, wiggling my toes inside my panty-hose in a desperately unsuccessful attempt to shake off the feeling of dermestid beetles gnawing away at the very marrow of my bones.
I saw a podiatrist as soon as he could fit me in his schedule, and he clucked and sucked his teeth when he looked at my feet and nipped needles at my joints until they were lubricated with anti-inflammatories and steroids. At home, I soaked them in epsom salts and wrapped them in heat and numbed them with ice, trying to recreate the frisson of relief I’d felt when the doctor pulled his needle away. Eventually he told me that the joints in my biggest and littlest toes had pulled permanently into dislocation. He said that the pillowy bursa protecting my toe bones from clacking against each other was inflamed. He thought that my degenerative disease had likely contributed to the mechanical failure in the feet I mostly hadn’t had to think much about before—except for their width, which existed because they were stretched so wide due specifically to these dislocations. There is no treatment for the disease; there was no looking back for my feet. Perhaps we might stave off the pain, but the damage could never be undone, merely managed, maybe mitigated.
This was not my first major surgery, but it was the first to involve slicing off the end caps of my bones and twisting screws into them to hold them in place. I tried to watch a video of the surgery online first, so I could be an informed patient, but I couldn’t sit still long enough to make it through, cringing from the first scalpel slice into skin. It was impossible for me to not think about the inevitable pain that would result from the deft machinations of the surgeon’s hands; the people I worked on were dead, and their nervous systems would never process pain the way an anesthetized person would once they woke.
Once I woke.
Waking up from the black silence of unconsciousness into the bright sterility of recovery after surgery is always disorienting. It was a relief to finally be discharged and tucked into bed in a dim room at home, but the opioid the surgeon prescribed wasn’t working and the breakthrough pain from the procedure was relentless. I couldn’t pace, I wasn’t allowed to put weight on my foot, and so I clenched my teeth while I lay as still as I could in bed and I felt my tears drip into my ears while my mom frantically dialed the surgeon’s cell phone, hissing progressively more hysterical messages into his voicemail until he finally, blessedly called in a new prescription that roped the wild, bucking bronco of agony into submission.
Immediately after surgery, they’d discharged me without a cast so we could wait for the swelling to decrease. My foot looked as alien as it felt, iodine stained orange and my toes swollen sausages stuffed into too-small casings. My intrusive thoughts added a new movie: one where I stepped down and the bones in my feet shattered, rendering the foot even more unusable than it had been before surgery. The reality wasn’t far from the truth, even once we wrapped it in a blue fiberglass cast for protection: my bones weren’t suturing properly, and a recovery process that should have lasted six weeks max stretched into two months, then three, then four.
Eventually, I was allowed to use a rollator with four wheels to prop my leg behind me and ambulate anywhere I needed to go. It was my first real experience with a visual indicator where others could perceive my body’s disabled status. Before this, any subluxations or dislocations that battered my body because of hypermobile Ehlers-Danlos Syndrome did so invisibly. The accessibility device was both a blessing and a curse: for once, no one questioned whether I was actually in pain or if something had happened to me, but the very existence of both the cast and the rollator seemed carte blanche permission for nondisabled people to pepper me with intrusive questions about my body. I would eventually learn that this blank check existed for any human who looked even remotely different from the expectation of “normal,” but that is a very long story unto itself better saved for a different newsletter than this one now.
Bearing weight on my foot might undo what simple healing my broken body had managed to accomplish, but life continues regardless of what personal tragedy is wrought upon our bodies. My then-boyfriend lived in a small house tucked between twisted grape vines in the middle of nowhere Napa where the moon seemed to glow brighter when it was full and the silence stretched supreme even during the day. The single bathroom was on the first floor, by the kitchen, and the single bedroom was up a flight of stairs that stretched long enough to necessitate a landing to pause between flights. I’d stop drinking anything hours before bedtime in hopes that I could avoid the slow tedium of scooting on my butt down each individual stair before using the furniture and walls to hop to the toilet. I would pause every few steps, to catch my breath and my balance, and the entire process from start to finish took so long that sometimes I would fall asleep on the toilet before beginning the long return trek to bed. My own apartment, also up a steep flight of stairs, wasn’t much better.
At the time, I didn’t have the language to describe the inaccessibility that stymied me; I wasn’t yet calling myself disabled, but now I recognize it as the first time that the conscious decisions architects and builders made to the houses I called home segregated me from the functional ease with which I had previously breeze through life as someone without a disability.
During that period of recovery, the only place in my life free from physical barriers was the mortuary, constructed specifically for the ease of maneuvering wide caskets from room to room on wheels, and I zoomed wildly from one end of the building to the other, moving fast enough that I’d have woken the dead if they could be roused. (Of course, I was drowning in ableism even while speeding along in my rollator—but again, that is another story for another time.)
For six long months I wasn’t allowed to walk on my own feet, dutifully attaching a bone-growth stimulation machine to coax the bones to bridge together. Its hefty price tag was worth the stress when I was finally, finally given permission to wear a big black boot and walk on it of my own accord. Scars wound along either side of my left foot, which was peppered with red dots where the snakebites of stitches bit into my toes. My foot was still swollen, even six months later, though the angular bump of the dislocation by my big toe had been smoothed down like wet clay. Through my skin, I could see and feel the slightest curve of the top of the screw embedded in my bone. Because of the placement of those two screws, I would never again be able to bend my big toe, to crack or pop a crick out of it, or to use it to pick up something from the ground. Nor would I ever again wear a pair of high heels, as the angle caused by the shoe’s very design shifted my body’s weight too far forward to result in anything but unadulterated, horrorshow hurt. My male surgeon had never warned me of that outcome; I always wondered if a woman would have thought to bring it up as a possibility before putting me under her knife?
I ordered a wooden cane off the internet and began the task of joyful limping. Being able to walk of my own accord once more felt like a gift from the universe. My foot looked disembodied, as though someone else’s feet had been cut off of a model from a magazine and pasted at the ends of my ankles like a medical mosaic. Being physically unable to curl my toes was like hitting a brick wall where previously I could coast through like riding butter on a lightly warmed skillet, but since the pain didn’t eat its way up my leg like acid boring hole through steel, it was filed away in the cabinet with the full folders of forgettable pain. Even better, I was given the all-clear from my podiatrist just before the New Year, and so I was able to celebrate a newfound sense of independence as the sky lit with fireworks and the celebratory sense of what-could-be filled the air.
Of course, less than a week later I sat at the sticky counter of my local dive bar, cane perched on the edge, only halfway listening to a Tinder date drone on about himself at length, drinking a cheap beer and debating on whether I should go to the emergency room because an inch-long sewing needle I’d used for living-room mouse-taxidermy was jammed deep into the delicate windchime bones of my post-surgical foot, which was now so swollen from the metal’s intrusion that it looked almost exactly as it had six months ago when I was not yet discharged from the hospital.
And that, my friends, is where I will pick up this story next week.
I have an intrathecal pain pump for my Fibromyalgia and I'm STILL wincing at this. 😬
Aside from several broken toes, my feet have been, thus far, taken for granted. I should know better and your story is a great reminder.
Looking forward to the rest. Yes, I'm human, I have to 'rubberneck'😂