Death and High Heels: Reflections on Life With Chronic Illness

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Editor's note: This story includes discussions of death and suicide that some readers may find triggering. If you need crisis support in the USA, call 988, or consult this list of mental health hotlines to find the help you need in your country.

When most people imagine their corpse, they usually neglect to consider footwear. 

In the spring of 2013, I was standing in high-heeled boots ankle-deep in muddy water. The Seattle springs aren’t known for their sun and sand, and I was covered in a woolen coat with a hood and shivering through the icy mist. Pioneer Square shone dimly in the streetlamp, casting an eerie glow on the red bricks wet with the constant drizzle. The old brick was slippery with the never-ending spring drizzle.

I was waiting for the beginning of Bill Speidel’s Underground Adults Only Ghost Tour, a Seattle institution in appropriately-named Pioneer Square.  The subterranean depths of the original city were waiting for me, and I couldn't wait to get out of the nonstop rain. Our spooky hostess for the evening, adorned with a weather-appropriate umbrella, asked the group, “Imagine yourself as a ghost. Are you wearing shoes?”

I closed my eyes and imagined thigh-high maroon Prada leather boots with a six-inch heel, perhaps with embroidery of a dragon on the shaft. Or maybe a sensible heel, a black Blundstone leather ankle bootie to keep out the rain and snow. Even some kind of avant-garde, Stuart Weitzman creation with diamonds encrusting the edges, made of only the finest black leather. 

Footwear, for me, is unquestionably essential. I will continue to be fabulous and flawless, regardless of how ill I feel, a vision complete with a full ensemble including from the calf down. I have spent decades trapped in a sweaty bed in the prison of my own body, imagining fantastical footwear. Six-inch stiletto Alexander McQueen over-the-knee suede leather boots covered in studs and rhinestones. Christian Louboutin pumps with the signature scarlet sole, or vintage Chanel espadrilles, woven in lime green or pastel popsicle orange. A kaleidoscopic array of fabulous, expensive designer shoes. 

With footwear so fierce, who needs clothes? Or food? Or functioning organs? Or the ability to exist without dysfunction? Or the will to live?

I guess what I’m trying to say is, I stayed alive for ferocious footwear.

Some people think they want to die; they fantasize about suicide. Teenagers romanticize it in the sheen of gothic youth, reading Kurt Cobain’s journals and joking about how they'd take themselves out. Death is convenient when you’re covered in hormonal acne. Death is a mask people like to apply at a whim, joking about killing themselves over the tiniest inconvenience. “This traffic is killing me!” “Just shoot me already, they’re out of coffee creamer.” They turn the blasé nature of death on purpose into a sick joke.

People die by suicide in droves every year, and in my home state of Montana, the problem is of epidemic proportions. People also die there quite often from driving accidents, whether alcohol and drugs are involved or not. The death toll is staggering, with long distances in between towns and also deer in the headlights. Death seems tragically hip when you’re 13, going to the jungle of junior high and facing wandering the desert for the four years of high school and puberty.

People sometimes think that death is a solution, and I suppose I did too once. If things got too tough, there’s always the illusion of escape and nothingness. A simple end. There was always a way to release myself from obligations, going gentle into that good night. I knew in the back of my mind at all times that death was inevitable, but choosing when, where, and how to die was optional. For some people, it's the only real choice they have.

People glorify death, romanticizing movies about valiant nights and brutal war heroes and James Bond escaping just in the nick of time. Death is a convenient plot point in every Hollywood movie, the henchman dropping like flies while the good guy triumphs over all, Han Solo vs. Storm Troopers. The soldiers never get a shot in edgewise, while Han Solo has perfect aim. John Wayne shoots every bad guy on horseback with nary a thought. After all, didn’t the bad guys have it coming? Death is a judgment of a person’s body and soul. 

In our modern society, Death seems somehow equal parts valiant and blasé, the glossy sheen of war-themed video games and horror of street violence. Death seems abstract until you smell it lurking, pungent and syrupy. An overwhelming odor. It lies waiting just beyond the door jamb in every hospital, sickly sweet like anesthesia, leading to an oblivion from whence none dare return. No amount of Clorox wipes can cover up the stench, lingering like smoke after a forest fire. 

Dealing with a debilitating, genetic chronic illness has made me an expert in Death and its related side effects. The stench of death haunted me for decades; it lurked in every nook and cranny of my life until I was sure it was only a matter of time before I was consumed by the sickly smell. I figured I would become an honorary member of the 27 Club, a fitting end for any self-respecting musician. The stench of Death wafted through every bedroom in every house I occupied, and especially lingered in the bathroom as an effervescent mist as it slowly became my private torture chamber of horrors. Death seems mildly attractive, completely abstract, and distant as a teenager, until you’re face to face, toe to toe, and suffocated by its honeyed odor. Then, suicide is less glamorous and more of a tragic reality that some people really can’t go on the way they’re living, especially with pain. Once you’re gone, you can’t ever come back. Out of the blue and into the black.

Once death really becomes a possible reality, your instincts kick in and all you can do is fight to survive. One more day, one more hour, one more minute of staggered breaths, clutching feebly to anything to moor yourself against the inevitable. Death becomes the ultimate fight, the noblest of noble battles where you either fight like hell or cease to exist. When shit becomes real and Death is there, waiting to catch you in its jaws and take you away from this world forever, I know of few people who would go so willingly. With age, death ceases to be a salve and becomes a terrifying inescapability. No running from it, no amount of Botox or dieting or long-distance running or organic produce or meditation can stave off the inevitable: that we’re only here for a limited time and nobody can outrun it. Money, fame, power, privilege, and the powers of the mind are useless when facing total annihilation. 

Being from a rural area, I’m quite familiar with the smell, similar to maple syrup or molasses. Sickly sweet and bitter in equal measure. I smelled the stench of Death when my father’s best friend rattled wheezing breaths in my parent’s living room, early on a frigid midwinter December morning on Christmas Eve 2019. He was gasping for air and dying of cancer, and the halo of sickly sweet Death aroma engulfed him. His choking for air came in fits and bursts, eyes rolling in his head as he struggled to breathe. I heard him fall down the stairs as I was just stretching getting out of bed in the morning, half asleep in nothing but my bathrobe, and immediately jumped out of bed and ran to help him. I heard the low-pitched hum of inevitability and the strong beating of my own heart as his heartbeat slowly faded. His accordion lungs squeezed out ragged, half-hearted breaths as his eyes rolled in his head and closed. Oblivion.

He was eventually rushed to the hospital and died many hours later the next day, never recovering the ability to breathe fully. He was kept alive momentarily attached to a dozen machines, a very common end to an uncommon life.

I smelled death as I carried the broken body of a ground squirrel struggling for life in my isolated country childhood home. Gophers are every rancher's worst nightmare, creating massive holes that cows and horses break their legs in and eating all the grain that would be otherwise used to feed those animals. The small, broken body struggling for breath mixed with the heady scent of pine and the sick sweetness of rotten cotton candy all mixed together as he squealed in pain. I watched his little eyes roll around in his skull frantically as he took his last breath and finally lay still. I sobbed, rocked by the brutality and fleeting nature of life, filled with existential grief. I buried him behind the woodshed, his head and limbs juxtaposed at odd angles. Lifeless eyes and lolling tongue covered by the hard Montana clay. It was the least I could do for him, an honorable death.

When I die, I want a second line. Bring me brass, bass, and drums and singing and dancing down the street, a celebration of life for the ages. Since I survived, I really want to live.

Death. After every hospital visit, which by now have become so numerous for me that I've lost count, the stench lingers on my clothes until I wash them, permeating every surface with its inevitability. The scent of sanitizer not quite covering it up, and the greasy smear of Clorox wipes and Lysol trying to sanitize our minds to the reality that hospitals are where people go to get healthcare, but hospitals are also where people die. The blur of death, dying, sickness, and infirmity has become a massive part of my life. This is not by choice but purely by necessity, and the future stretches out into a long hospital hallway of fluorescent lights, fatigue, and battle wounds.

I smelled Death at 20 years old, panting and hallucinating with my nightly night terror dream of the devil pushing me off a cliff, dancing as I fall into the abyss. The fear of death, awakening me from a nightmare so vivid I lay screaming in the dark, pinching my arms to make sure I was still alive. In another horrifying, recurring nightmare, the specter of the devil is eating my best friend’s mother’s head like a melon and laughing maniacally while he plunges me to my doom over the same cliff. I smelled Death very distinctly at age 27, bleeding profusely onto silk sheets in the burning Arizona heat. Mercifully the sheets were a dark brown, and I thanked whatever god might be listening that they weren’t white.

I have smelled Death driving past every broken deer carcass on the rural, frozen, and desolate Montana highways of my youth. The stench of it haunts every twisted dead dog on the freeway left for the vultures and coyotes. Passing every mangled carcass of unquestionable animal origin on the highway, a very common sight in that part of the world, the scent would waft through the car’s heater. The smell of Death is toxic and nauseating in the primordial forests of North America; lingering, waiting. Patient. It knows that it will always win, as an inevitability. Death has all the time in the world. Every animal, including humans, falls under its spell eventually.

I suppose before I speak more of Death, I must elaborate on the circumstances that led to the sorrowful and traumatic experience that has been living in this beautiful and broken body. Why speak of Death, and shoes? When I’m a ghost, I’ll be in fabulous, sky-high heels, but until then I have to remain in the world of the living and suffer the slings and arrows of living another day. 

I dream of thigh-high studded boots by Alexander McQueen as much as I dream of a new body, any body. Why can’t I return mine to Nordstrom, worse for wear but still designer? Why, oh why, if my body is so aesthetically pleasing, why for fuck’s sake can’t it work like it's supposed to?

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