QUIT DYING TO DIE
Flirting with suicide, I spent three apathetic years with Bulimia Nervosa, before I decided I wanted to live. A month into recovery, doctors discovered tumors on most of my major organs. My body is now being investigated for a rare degenerative disease, Lymphangioleiomyomatosis (LAM). It destroys the lungs within 10 to 20 years, and there is no cure.
There are women in life’s prime with soft hair and clear eyes.
While under the canopy of skin, their lungs blossom with minute holes. They live inside shattering hourglasses. Sand settles their organs as tumors, as cavities, as increments of dying.
It sounds like a fairytale meant to scare little girls, but I can’t find the moral.
Tongues struggle to unfurl this illness by name. So, we called it LAM. Sweetened down to a baby sheep. Something to carry around, tenderly as it chews us through.
Bodies, you know, are tedious to deflate.
Back when I thought my sick body could be un-sicked, I was bulimic.
I wanted to recover from bulimia, so I could stop identifying as sick. At 26, it was bad self-branding for an emerging female poet in social media’s chokehold:
Bulimic disaster show. Wild in the throes of bulimia. Your straightedge Amy Winehouse.
But didn’t I make it sound darkly fun? I guess that was the point.
Bulimia is an erasure of the physical self, but also of time. Days fall, consumed by it.
You have to understand. Loneliness is both the white knight and the dragon. To outlive each of them, you must slash down from crown-to-kneecaps. I threw their hours away. They couldn’t thrive on time anymore, couldn’t ricochet my body with fear.
If you’re looking for a princess, there isn’t one. I am the tower. Everyone wants to get inside the tower, or protect it from other assailants, because they believe a good little girl looks out its eyes. But those windows are empty.
Silver-toed shoes, grappling hooks, and fiery tongues force wounds into a tower’s skin. The beacon is abused for nothing. Leave it alone.
Abruptly telepathic, my friend interrupts her own writing to say, you know that fear and anxiety are physiologically identical.
When my bulimia was at its worst, she was the only in-person friendship I kept. Every Saturday for a summer, we met in a Turkish café to write. We’d order beetroot simits and eat them, alongside several black Americanos.
This shared meal was satiating then, but under any other context, I’d have purged it.
My friend had loved the same assailant as me. I was freshly unbound from that relationship—a breakaway that spun my eating disorder into free fall—and I felt wordlessly understood by her. That quiet connection was invaluable. I didn’t have the energy to explain anything clearly, including the panic attacks that made me late to our writing dates.
There’s a TED talk that my therapist loves. A psychologist, who is probably Swedish, stands in front of a crowded room and throws his arms open to them. He’s triumphant.
The opposite of addiction isn’t sobriety, he declares. The opposite of addiction is connection.
This is easy, until you’re an addict. Mental illness appears discourteous. You cancel a lot, and if you show up, you aren’t on time. You rarely have a good excuse, because your symptoms embarrass you. It’s impossible to talk about the fits of hyperventilating where you slap yourself and cry until everything is puffy, stinging, and hurts.
So, you say nothing and hope for another chance you can’t ask for. No one feels much patience for that.
Nestling into addiction is easy, when it’s too draining to find other ways to be filled.
To myself alone, I’ve called bulimia a coward’s suicide. Perching the tall bridge of my life in a velvet onesie, smoking clove cigarettes while I decided what to do. Single teardrops diamond each cheek.
It’s not that elegant. But you’ll want it to be, when friends can’t find you because you’re living outside yourself.
Rewritten as a sad girl heroine, existing only in stories too tumultuous to be disturbed. You’re not bowing for the toilet at teatime. You’re running through the French moors, trailing chiffon and that faint musk of rosebuds, sex, and mystique.
This, once again, is easier. Easier than admitting to being lost.
Always there’s that difficulty of occupying a body.
Last week, my boyfriend had to correct me. Tumors aren’t holes, they’re growths. Bundles of atypical cells, growing like lichen upon trees. Faerie rings. Crop circles. My heart’s lexicon knew to be sick meant to lose.
It’s baffling for my organs to blossom with new flora. What colour are tuberous cells under microscope? Do they bring out the blues of my irises? I imagine tumors opulent with gold flakes, like body armor made from alchemy.
This is a false safekeeping. To treasure pyrite.
I no longer pull myself out of myself.
There’s something noble in saying purging, instead of puking or vomiting. This text writes a purge. You are implicated now. My makeshift altar, my confessional lap. I hope by its end, both of our hands are dewy with soapsuds, and I’ll tuck a lavender sprig between your teeth.
When a sick woman is recovering, estranged friends arrive as pilgrims to her bridge. Their relief will feel like a luminous halo, or the biting snare of rope, as they encircle her with a single question: Why did you stop?
I wish my answer was I fell in love. That I met the softest man with a spine, who kept me safe and honest. Because I do have him and he is everything.
We cuddle goodnight with my ear on his heart, then spoon until we’re sleepy and separate.
When I imagine either of us waking in that bed—alone—I cry.
I quit dying to die, because I might be dying anyway.
Here is the story from the sickness after the sickness.
It’s three months ago and my ovarian cyst is rupturing. The ER keeps me for 17 hours. My sick body, suddenly a treasure trove for doctors. But they aren’t saying why.
Morphine sends me into space. Sailing consciousness, I lucid dream about a pornstar named Carrot Cake. The IV drip flickers ON|OFF. Teeth are bouncing and clattering like a wind-up toy, while test after test is set upon my organs.
We wait. I pass out from midnight nausea and the faulty drug pump. I sleep in my winter boots. My boyfriend stays awake, and sometimes he holds my hand.
A sick body is an enchanted forest, overflowing its borders with civil war.
Every beast becomes a circle, because they’re devouring their own tails. Diseased cells cover the land with fresh, rotten foliage that snaps off sunlight at the jugular. It’s a brutal cannibalization of the self.
When the doctors burrowed into my body, they unearthed a slew of tumors. These tiny growths are speckled across lungs and kidneys. A Starry Night is what the ultrasound technician titled it, because my organs look calcified as an alcoholic’s liver. Turns out, that wasn’t scientifically accurate.
My sick body is divided between two possible diagnoses, tuberous sclerosis and LAM. Tuberous sclerosis can be dangerous, but I don’t experience seizures, learning disabilities, or bleeding tumors. My urine has never once been rosy. I’m not in pain.
LAM is a different animal.
Surrounded by a velvety sea of blackness, organs are the grey vessels in CT scans. Tumors show up as black pinpricks. LAM-infested lungs will fill up until they disappear beneath the waves. Transplants are useless. Darkness seeps into every new tissue.
There doesn’t need to be a kraken here. The body is intent on drowning itself.
Montréal by nature is a divisive, transient city. Its tensions keep us all in limbo.
My respirologist, a Québécoise woman and the only LAM specialist in Canada, explained the disease in a duel of languages. She took a pause before saying lymphangioleiomyomatosis, but stumbled over its pronunciation anyway.
I realized only later that her difficulty came from switching accents. Naming the death dance for me in my native tongue. It was a kindness I’d overlooked.
In a few days, I’ll know if I have LAM. That day promises to slice me open with dreaded relief.
I’m sick of hospitals.
Specialist appointments grew into a hydra, I’d go to one and be booked for two more. Doctors, technicians, and nurses aren’t always gentle. The tests are physically invasive, even for women who don’t experience body trauma.
IVs puncture and scar the skin. Echocardiograms flowered my ribcage with bruises. The iodine used in CT scans makes my pussy warm and I worry I’ve pissed myself, every time.
An MRI nurse called me une villaine fille when I told her I’m afraid of needles, I might faint. My tattoos peeked out the paper gown, and she was irritated that I didn’t know my IUD brand. But the male doctors had sworn I’d be safe inside a giant magnet.
Turning on the machine, she said: Call me if it burns and I’ll stop the test.
The IUD swam so deep I’ll need surgery to remove it. Pain pierces through my uterus every menstruation now. I’ve gone to the emergency room for it twice.
Triage nurses shouldn’t offer out-of-ten pain scales to women, unless they first reveal the arithmetic used in lessening women’s answers. Female pain means zilch. The on-call physician wouldn’t even prescribe anti-inflammatories until my boyfriend spoke up.
Results are valued over a sick body’s autonomy. Crying means I’ve gone hysterical, but if I refuse to wear my tears, the verdict is always there’s nothing wrong with her. Pain plays out like a hospital performance piece. Everything begs for interpretation.
Staying sick isn’t the same thing as choosing not to recover.
I can tell you every footfall that led me into bulimia. It’s a clear-cut path, according to my therapist. When your feelings aren’t validated as a little girl, you became an adult with a little girl’s feelings. Anxiety attacks are temper tantrums.
In my family, validation is contingent on perfection, and perfection rests on control. Bulimia feels like taking control. This, of course, is a mirage. Still I became small and delicate, which demands tenderness from the world, doesn’t it?
The tradeoff was a quivering, pulsating fear. I sold my body to embody a childlike paranoia of the dark. Anxiety and fear are physiologically identical.
My therapist wants me to take Little Me by the hand. When I try to lead her to safety, she’s carrying a Lamb Chop puppet. What can I say? I still can’t relate to my sadness without fairytales’ guise.
Recovery was supposed to be a rippling silvery pool. I was going to bring my lover there and float as starfishes on its surface, watching moonbeams dust the sky.
As I write this, LAM is keeping me bound in a sheep’s pen of question marks.
To say I feel cheated isn’t enough. I can see where I want to be, but I can’t reach it. There are no words for my disappointment’s depth. I’ve expressed it viscerally, sobbing in an overwhelmed mess on the kitchen floor, as someone I love fails to soothe me.
Purging was my only coping mechanism. Between beginning recovery and discovering the tumors, I haven’t had time to develop new ones. Part of me also believes I deserve to bathe inside my self-resentment.
Needless to say, I fucked up. I actively refused recovery for months, stacked into years.
Addicts bring hand grenades to knife fights. We indulge our vices instead of tending to the people who love us. Feeding my addiction with deceitful secrets felt like a victory, until I sobered up and started reeling from regret.
If I have LAM, I’m scared it will feel like I quit dying to die.
That I crossed over from my blue underworld, felt a twinge of hope, before being spirited away into sadness again. It’s one pendulum I never dismounted. I’ve swung from one empty island to another.
I keep forgetting I won’t be left alone. Not this time. We’ve pinned a list of destinations to our fridge. If the hourglass is broken, maybe life can keep me from slipping away before I’m ready.