My Story

At 43, I stood on the brink of death from anorexia nervosa- my body shutting down, my voice silenced, and everyone around me convinced I was dying of Crohn’s disease. The truth was more devastating: I was starving to death in plain sight.

Unaware of the autistic architecture of my mind, I moved through life feeling like a defective human product- faulty DNA Mickey Moused together into some unclassified space junk floating about in the ether, belonging nowhere. A glitch in the matrix.

I operated on liminalities of energy squeezeage, the verges of the last drop- struggling to meet societal expectations. Every peopling encounter blew up my transformer and left me devoid of juice, in an eternal state of power outage. I could never understand why the smallest of things required so much elbow grease from me. I navigated the everyday with sensory faculties cranked to a hundred, like an exposed nerve. Wishing I possessed some type of ultimate guide to humaning, I grappled to read the fine print underlying human behavior, like trying to navigate with a GPS receiver disconnected from satellite communications.

Anorexia was never about food. It was a means of control. Autistic wiring can engender intolerance to uncertainty and favor predictability, order. Rules. Anorexia palliated my inward lawlessness and caprice of the human world. Though I could not control my surroundings- I could control fodder. Edie was my punishment for my lacknesses, and my superhero getup concealing insecurity, fear, sadness and shame beneath.

At forty, I was burned out on a life I couldn’t do. A confluence of profligate self-hate, chronic burnout, and a fresh, out-of-the-box Crohn’s diagnosis furnished the immaculate conditions for anorexia to take center stage.

In an overnight fashion twist, I sublimated into vapor. From being everything, to everyone, and all over the place, I turned into a nothing, to no one, to being nowhere at all.

The loss of my will to live spurred me to obsequiously submit to anorexia’s demonic possession without contest. In her death grip, I yielded through three years of unremitting starvation, like a pitiful dog.

She swelled in like Queen Bee, a katabatic williwaw blowing full throttle from the north to ravage my mind and body. She assumed me whole, consumed me to nothing.

I became less and less, while the yawning maw of my empire of ruin and decay metastasized beneath me like cancer.

Landlocked in my brain, I rehashed every social blunder, perseverated on every facial expression, haunted by the incessant echoes of every word- a brain innocent of firewalls or gatekeeping, flooded like a spate river with input, deliberations, analytics. Driven by perfectionism and high work ethic, I pushed through, never allowing myself permission to acknowledge my difficulties. I had no explanation for them- I did not know to ask the questions. That I was even allowed to ask. I was simply broken and that’s all there was to it.

I just had to try harder.

Thus always extra, never basic- I lived incognito, play-acting in Land Pantomima, in a bootlegged persona, trying to fit between the cracks and masking my inward truths.

A lifetime spent feeling like an eternal failure gave rise, like a slow-spreading black mold, to the noxious miasma of shame and, the coup de grâce, self-hate. I was beset by its interminable darkness.

Without, I wore the patina of everything hunky dory, but within, I was unraveling like a spoon in a garbage disposal. I hated myself for the world.

Anorexia was a faulty coping mechanism that saw me through these difficulties my entire life. It furnished me with the license to trade the perdurable feeling of being a portly, failed human experiment for feigned success. While I felt I failed at all things human- I could rely on my trusty sidekick, Miss Edie- my ED- for a libation from the fountain of ersatz self-worth Kool-Aid.

Nothing mattered. Edie buzzed in my head like sizzling power lines after rain, an earworm in a loop. My world turned monochromatic. Mute. Ringer off. There was no laughter, no flavor. I couldn’t hear the wind. I couldn’t feel my children’s embrace.

By then, I no longer knew who or what I was. For I had become a dead living thing- rawhide stretched taut over an angular frame of collagen and calcium phosphate. I was pomace- moribund refuse of skin and stem, awaiting quietus.

I wanted out.

But how do you stop a train going 100 mph?

On a frigid morning in February 2022, I woke with a sobering knowing in my bones: I was dying. Had I not spoken up, my children would be bereft of a mother. I ventured my first agonizing step toward freedom. For the first time, I transgressed anorexia’s first rule: don’t tell.

I broke the silence that had shrouded my existence.

I ousted anorexia, revealing the identity of my silent killer.

This was the overture of my battle.

I left home for nearly a year at the highest levels of eating-disorder care, away from my husband and two children.

Treatment and weight restoration were grueling. I had to learn to eat again, rebuild my body from the wreckage, relinquish anorexia’s rules and rituals, and confront the destruction entwined with my sense of self. I fought Edie by the skin of my teeth- every morsel a battle for my life.

Then everything I once knew was upended.

I was diagnosed with autism.

This seismic revelation altered the trajectory of my life- my history played back with subtitles toggled on. Having long interpreted my differences as defects, I could see myself through a new prism of self-compassion and understanding. After decades of self-denigration, I was suddenly, unbroken.

The diagnosis had not only revised my life.

It had saved my life.

That taught me how autism and eating disorders can form a lethal alliance- how traits involving rules, repetition, rigidity, hyper-fixation, predictability and control can accelerate anorexia; how prevalent autism is among women with anorexia; and how treatment modalities not tailored to neurodivergence can fail those they aim to help.

At the turn of nearly a year, I returned home, suffused with gratitude for a world that helped me live. But surviving anorexia was only the beginning.

I learned recovery is a non-linear journey- one to tread with patience and grace. It meant dismantling decades of shame and self-hate, honoring my mind, meeting myself in my unscripted, unabridged, feral, raw, beautiful humanity- and offering myself the unconditional acceptance I had sought elsewhere- moving from external permission and approval, to finding my worth within.

I came to understand self-love as the fundamental verity at the root of healing- the axis upon which all turns. It is our natural state, and healing is remembering our way back to it. Everything begins with self-love.

Becoming was not about changing who we are, but finally coming home to ourselves.

I learned that challenges were opportunities for growth, and that freedom lies in accepting life’s vagaries- not in trying to alter the transactions of life, but in transforming the way we experience them, and, finally, that joy was not dependent on outside sources, but unfolds from within.

My story bears witness that even through the gloaming, we carry within us the torch of freedom, healing, true joy and Love.

Above all, I share it to offer the undeniable truth I once desperately needed someone to show me:

Recovery and healing are possible.