Why Losing My Hair Was the Best Thing Ever

I was born with obnoxiously thick hair. It was a defining feature in my family, graciously handed down from my dad’s genetics. Having a mass of unruly waves certainly came with a fair amount of drawbacks. My scalp was regularly tender and itchy, and 3 AM emergency shampoos weren’t an uncommon occurrence for me. I couldn’t wash my hair in the morning before school because the combination of washing and styling (was anyone ever caught without a hair straightener in 2008?) took approximately 2 hours and, while also suffering from heinously disordered sleep and severe morning pain, I couldn’t sacrifice the time spent laying in bed bargaining with myself to get up and face the day.

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Indelible proof that I have never had an upper lip.

When you have a lot of hair, it goes without saying that you shed like a Malamute. So, I didn’t make a big fuss when I started collecting palm-sized balls of hair from the drain after every shower. But slowly, between the ages of 16 and 19, I found myself drowning in it. At the height of The Great Shed, I was spending more time collecting the fallen strands in the shower than actually cleaning my hair. I woke up to a lattice of strands on my pillow every morning and waded through more fallen follicles than you would expect to find littering the floor of a hair salon.

Nothing has the capacity to reinforce the fact that your chronically-ill body is falling apart like pulling out masses of hair every time you run your fingers through it. There’s a reason that teeth clattering against a porcelain sink and clods of hair laced between trembling fingers is a regular feature of nightmares and horror movies. As humans, we intuitively understand the condition of our skin and hair to be indicative of our overall health and well-being. This being the phase of doing everything in my power to ignore and, God willing, forget that I was sick, I was mortified at the prospects of bearing a physical indication—on display for the world to see—that I was constitutionally weak. The number one thing that no ill person desires is to be pitied by strangers, much less their peers. The pity of others is just a reminder that there will always be additional barriers to a functional and productive life; a reminder that you will never fit comfortably into our ableist society.

One sure-fire way to trigger a MCAD flare up is stress. And in my 19th year, I had plenty of that to go around. My then-boyfriend’s traumatic car accident flooded my body with more norepinephrine than my POTS was already dispensing with abandon. Throw progesterone birth control in the mix—a hormone that exacerbates joint laxity in EDS sufferers—and you have the perfect recipe for hair loss. My body was crumbling, and my hair soon followed suit.

I’ll never forget the day I reached up to scratch my scalp and encountered that first quarter-sized patch of seductively smooth skin at the nape of my neck. My fingers rubbed the spot absentmindedly, unable to comprehend the meaning of this strange crop circle in the back of my head. I wandered into the dishwashing room of the small cafe I was tending at the time and used my phone to photograph the anomaly. When I saw the pale little circle throwing off the white-balance against my dark hair, I felt my insides collapse. I’ve always been skilled in the art of generating worst case scenarios, and I somehow already knew that this was the end. Before my alopecia diagnosis, before the failed injections, before the fall of my already crippled immune system, before the denial and tears and manic internet searches.

Though my boyfriend was very supportive, I couldn’t seem to come to terms with my new status as a balding woman. I feared that my partner would lose any vestige of sexual attraction to me, or worse, that I might lose what remained of my dwindling reserves of confidence. Sure, I’ve had plenty of pixie cuts in my lifetime, but I couldn’t envision myself with no hair at all. I bristled every time the wind blew, sure that my multiplying bald spots would be revealed in all their bare, shiny glory.

With every round of scalp injections over the next two years, one patch would grow in only for another to sprout in its place. The only thing I felt sure of was that I wanted the anticipation to end. Even when I was free of lesions, I compulsively searched my scalp for new ones that would undoubtedly crop up. I vaulted back and forth between acceptance, even anticipation, for total hair loss and a deep sense of dread.

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At the dermatologist’s office for my last round of scalp injections

What ultimately changed my perspective on being bald was finding other alopecia sufferers and voluntary baldies who were embracing their look. I found artists who shaved their head as a fun experiment and never went back, women with crazy makeup skills who looked like they stepped out of an 80s New Wave music video, and even a collection of bare-faced alopecians captured by a photographer who admired their exotic mystique. I saw women loving their lives and highlighting all of the wonderful aspects of the bald life. And I felt anything but pity for them. What I did feel was profound veneration.

So I decided to take the plunge and shave my head. I didn’t have an electric razor, and I wasn’t sure if I needed to shear the length that I had before I mowed the roots off, so I went to a salon that permitted walk-ins. The older woman who shaved my head was incredibly nice and supportive, though at this point I wasn’t even slightly nervous. I felt buoyant with excitement, half expecting to drift into the atmosphere as soon as someone cut my tether.

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The hairdresser gassed me up by telling me how beautiful I looked without hair, but suggested that I could wear hats until the lesions covered my entire head and I no longer looked like a Dalmatian. But as I watched the razor unveil the shape of my head, I knew I would never want to hide my affliction again. What made me feel so elated was that I was finally done pretending. I was done worrying about whether my hair was taken from me, because I took control and did it myself. The simple act of getting rid of my hair and refusing wigs put the power back in my hands.

In the weeks following my dramatic makeover, a few of my coworkers and friends commented that I seemed like a completely different person. And I certainly felt like one. I was walking on air. I no longer had to struggle to hold my arms up to wash my hair on days when my EDS was in full flare. I relished the feeling of the wind on my scalp in the July heat. Best of all, I was no longer relying on an arsenal of carefully placed hairpins to hide what was eating me. Secrets make you sick, and coming clean relieved a lot of anxiety. I felt like I had been given my life back. After being constantly at the mercy of my escalating bodily dysfunction, I had finally found one symptom I could control. 

My eyebrows and eyelashes fell out a few months later, and it was definitely an adjustment. A lot of people have the mistaken idea that the transition was easy for me because I projected a lot of confidence throughout the whole experience. I think that’s due to the fact that I had started to reject conventional beauty standards. I stopped thinking that there was a “me 2.0” out there and all I had to do was try this new lip plumper or buy an expensive hair conditioner. There weren’t a lot of bald models around this time, so I knew I would never be in the running for society’s version of a beauty queen. I started to question the origin of all the criticisms I imposed upon my own appearance and divert my efforts to acknowledging the things I liked about myself apart from the myriad imagery imparted by an inundation of media conditioning.

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Gradually, I started reversing a lot of negative self-talk and quit focusing on the things I hate about my looks. I started to wear makeup less and less and I scarcely noticed the stares of strangers. In fact, I can’t think of anyone who has been particularly rude to me. But I can say that there have been an overwhelming number of wonderful, supportive, kind-hearted people who have stopped me at Target or a restaurant with my husband to cheer me on. I have more friends now than I did before I went full Sphynx. I’ve had four different young women tell me that I was the inspiration for shaving their head and it has brought me so much joy to hear their stories and how it impacted their self-image.

Obviously, everyone has bad days and we all catch ourselves being too self-critical from time to time. But I’ve made some startling progress in my relatively short time without hair. Every time another cosmetic surgeon touting plugs or some other hair loss cure follows me on Instagram, I feel a deep sense of resentment towards people who perpetuate the myth that you can slice away insecurities with a scalpel. I’m now surrounded by a strong community of Alopecians who don’t consider themselves “sufferers” of any illness. I’m eternally grateful to them for showing me that I’m the sole proprietor of my self-confidence. You can’t mold yourself to favor everyone’s preferences, but you can embrace what you have and shift your focus to the things you love about yourself. The longer you practice this, you might be surprised to find that you forget to notice the flaws.

Sorry this post was so long, but telling my story in full was really important to me because I think there’s a lot you can take away from my experience. I was cute before I lost my hair. But I didn’t feel it. I spent more time tearing myself down than building myself up. It took a dramatic deviation from cultural norms to make me realize that I can be whatever kind of woman I want without being worth less than women who conform to hyper-feminization (which I don’t mean to critique in any way). If you feel like yourself in long, lustrous, Victoria’s Secret waves and pounds of makeup, own it! But it’s always a good idea to check in with your subconscious and evaluate whether these modifications are helping or hurting your self-image. Is your hair your safety blanket? Your makeup a defensive shield? Then it might be time for a change.

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For Services Rendered

My father has hope.
He believes
the pain
will make me
a better person,
like the loss of his eye
gave him an appreciation
for depth.

And I cannot be
gifted
the hours of sleep
I spent pondering
the meaning
I was paid
for suffering
I didn’t purchase
but wouldn’t
return.

Because I forgot
to collect my tears
in a vial
beside my bed,
for services rendered.
All I have
is this shred of cloth—
water now dried,
salt still soaked—
to remind me
of loud voices,
strangled words
I didn’t hear,
but was meant to forget.


The featured image for this post is a preview of my sketchbook update that I’ll be putting together soon. So, stay tuned for that!

This poem is just some word vomit from this week. Poetry has always been a cathartic way for me to process emotions without diving too deep into the underlying trauma. Some thoughts feel safer on a sterile white page than swimming in my head. By committing those words to paper, I am in some way inoculated against them.

I decided to access some of those feelings in the form of one of my childhood memories which surfaces fairly often when I reflect on my relatively tormented upbringing. I had the fierce conviction growing up that the painful situations I experienced would necessarily catalyze personal growth. I thought it would make me wiser and more shrewd, preserving me from the taint of future heartache.

Depression and trauma should never be considered desirable. As a child grappling for the respect that accompanied adulthood, I was mature in ways that alienated me from my peers but often didn’t preclude the condescension of a fair amount of “grown ups” in my life. It was a purgatory that I would not wish upon anyone, but one that is frighteningly common. Dismally early in life, many children are made circumspect by the conditions to which they are subjected. We can’t escape the blemish of anguish, but we can hope to stave off it’s sting until we are prepared with the appropriate coping mechanisms and emotional faculties. Without challenge, we can’t hope to evolve, but when the challenge surmounts our mental resources the experience can be more disparaging than instructive.

While I am hesitant to romanticize depression, there is something intrinsically ameliorative about sorrow. Why else do we covet the communion of emotion that comes from sharing our devastations and those of others? How else would we enjoy curling up with the mournful words of our favorite author and sharing in their pain? An inability to feel sadness is rather a sign that we have been blunted by the world than indicative of immunity to affect. Would there even exist a word such as “bittersweet” if there wasn’t some portion of the human condition which reaps gratification from melancholy?

Without darkness to provide contrast, it wouldn’t be possible to see the light. This old adage holds true, in my humble experience. Inside me rests a profound appreciation for even the smallest, most mundane pockets of joy in my life—one that might not exist without struggling for so many years to feel joy at all.

Everyone has a right to grieve their losses, failures, and misfortunes. No one can impose a timeline on your healing or judge the impact of your ordeals. We only possess knowledge of the worst pain that we have experienced, and this acts as a point of reference for all other discomforts. How can someone who has only felt a stomach ache at worst imagine the agony of a bullet wound? Does the concept of a bullet wound lessen the effects of a stomach ache? I think our figurative patient would disagree.

There is a fine distinction between wallowing in self-pity and visiting our ghosts so that we may make peace with them. Self-pity, as we tend to think of it, comes from a place of victimization and typically involves inflating your problems disproportionately to reality. It’s a self-soothing technique driven by guilt and low self-esteem; characterized mainly by avoidance. Grief, conversely, requires experiencing your emotions consciously and willingly—with compassion. When we are incapable of having compassion for ourselves, it is impossible to take responsibility and heal, which typically leads to the self-pity laced shame spiral we’re all familiar with.

People who externalize their self-pity are often pity-seeking as opposed to feeling pity for themselves. They line up the facts, make an argument for their misery in an attempt to extract the compassion they can’t produce themselves. Because secretly, these people feel they are unworthy and unjustified. In stark contrast to one who is genuinely self-piteous, these individuals take an excess of responsibility for what happens to them, denying their right to emotions they can’t control rather than facing and accepting them.

Sometimes self-pity serves as the greatest act of self-care. Self-pity can be a choice to spend a moment valuing our own perspective and putting ourselves first. It can be a constructive way of exploring our own pain when we don’t indulge in it too often. If you find yourself cursing circumstance and expecting the universe to manifest your own happiness, this might be the case. At times, the only person capable of feeling true empathy for us—experiencing our emotions from our exact vantage point—is ourselves. So bring your pain to light, give yourself permission, and take responsibility for creating a better tomorrow from the ashes of today.

Proximity

Did the air become more dense?
Or is that your energy field?
You must be from the swamp lands
Because the moisture clings to you
I’ve slept inside a circle
Of my own arms
To get a glimpse of touch
But I’ve never dreaded anything so much

I imagine echolocation
Feels like the stir of your voice
I could find your murmurs
In a dark room
With moving obstacles
That dampen the sound
Your vibrations would still reach me
Scattered particles now teasing

Proximity like bee stings
Leaves bruises in its wake
My nerves are getting tired
Hands start to shake
Eyebrows twitch
A million searching eyes
Cover me like ticks

Motion starts to blur
A cavalcade of peripherals
Frozen in my mind
Deadened by the weight
Of one peculiar sign

Your searchlight’s getting brighter
A shadow below its gaze
Is following its stony beam
And blanching in its shade

Recurrence

It’s interesting how we return to places in time. With the season change, a book or favorite film, a person. Sometimes the inspiration for this sentimentality is as vague as a feeling. An impression. We continue on in the grooves our own feet have trudged as if propelled by morbid curiosity. Just needing to know how it ends. Maybe dig out an old playlist to remember 20 mile drives with frozen fingers, squinting against the blinding eight AM brightness. I am an innately nostalgic person. I like to unpack seemingly inconsequential memories from their neatly compartmentalized boxes and inhale their familiar scent.

I once saw a documentary about people who claim to remember every day of their lives. Incidentally, only one such individual had a truly exceptional mode of recall, their brain afire with synapses in regions dormant to most people when accessing a singular point in their personal timeline. The others simply possessed an unusual preoccupation with their own history. Each paying homage to the sacred act of remembrance in various ways. One man wallpapered his bedroom with photographs, reconstructing his annals visually. Another woman kept meticulously inscribed accounts of each day in a library of journals. Filled to the margins, her litany of diaries appeared to strain at their bindings. They stood poised on the precipice of each bookshelf, as if craving to spill out and mingle with the present.

I find myself in the latter category, though I keep no material iconography in my exaltation of the past. I am merely fascinated by the magnetism of a time to which you can never return. A time that is impenetrable to those who didn’t experience it in the flesh. The empiricism of occurrences which may never be resurrected. Even the most incidental of happenings take on an esoteric quality when you alone sustain the knowledge of their existence. But bitter memories, when harbored in silence, begin to smell of rot. Mold sprouts from traces of fingerprints left by too much handling. A sort of putrescence that infects more surely than it enlightens.

The fault in this practice is that I summon these daemons. I feed their spirits like moisture to a spore. Inadvertently breeding my own genus of decay. There is an art to reminiscing without developing fixation. This alleged technique alludes me, and I somehow doubt that forgetting is the antidote to rancor. Perhaps my obstinacy begets this maladroitness. But to extract the significance from an event, one must surely invest time in its refinement. I suppose the key is knowing when no meaning can be derived. In order to make that assessment, one must accept the premise of a senseless evil. To believe otherwise is to suspect conspiracy, a divisive malevolence that plots its chaos with abandon.

It might be my ambivalence that is to blame. I understand intimately that where meaning is sought, it can always be found. The veracity of these interpretations remain indeterminable. And thusly, so do I. If our experience is the foundation of our character, I am reduced to vapor. For now, I wish to float.

The Valley of Death

They say the tears dry up after awhile. I wish they would tell me when. There’s barely air left to breathe down here. But maybe you never get dry again. Perhaps you just sprout gills.

There’s not enough oxygen on earth to make me catch my breath. I’m gasping like a broken record, a scratch buried deep in my throat. Like a hole in my windpipe, I just keep sucking until cobwebs nest in my mouth. What will give way first? My diaphragm? Or will my eyes bulge out of my skull?

There’s a drum beat in my head, pounding in the empty space where thought used to reside. The vibrations tease you out of all the crevices. The memories glazing my eyes and streaming from my nose. A fountain of you. That’s all I’ve become. The shudders warm me and the sorrow tastes of licorice. Relief and release.

I want to pass away but I can’t let go of this pain. I heave as if it will set the earth in some great backwards motion that will bring you back. Winter to fall, fall to summer, summer to you. If I can’t live in the past, I’ll take refuge in the longing. If I can never again be open, I will be a living refusal. Subsisting off of my denial of your absence.

Every sentence is a fragment, a trail leading to a dead end. Everything ends without you and I can’t bear to hear its denouement. My world was stitched around the promise of your future. Your continuation an implicit truth, not even requiring to be stated. Now it must all be re-written but you left me without a pen. You’re reduced to invisible ink and only I can see the writing on the wall.

I shutter myself against a world that continues writing. An unattended typewriter printing spools of text where you can’t belong. Don’t they know they’re missing an integral part of the story? Don’t they know the protagonist has died? I can’t even keep track of the plot and they’re happy to write me out. Perhaps my story has ended too, no punctuation to signal my departure. Their gaze slides past me, never settling too long lest they be forced to consider their own alternative endings.