Rachel Kallem Whitman

WE DESERVE TO BE FREE:
Stories About Living With Disordered Eating

I was diagnosed with bipolar disorder as a teenager and as difficult as it was to live with a label there was still some freedom found in that language. My illness had a name, the symptoms were listed in manuals, and the bright red bow on the bipolar "gift" was that there was medication that could help me manage my disorder. Of course it wasn't that simple and living with a serious mental illness can mean more struggles than successes, but my doctors, parents, and myself (for the most part) knew what to do and what to try. But it was drastically different when it came to my eating disorder. Initially my anorexia wasn't framed as an illness. At first the words I heard were, "you look so pretty!" (aka you look thin), then it was, "you're a bit too enthusiastic with this diet, don't you think?" and finally, "You can count the vertebrae in your spine. You need to eat." My thinness went from being desirable and enviable to making people feel uncomfortable. Again, this transformation wasn'tanchored inillness, I was merely a willful inconvenience. I was flawed and defiant, not sick. I wanted attention and thus wasn't trying to "fix" myself.But the truth was I had never wanted to fix anything more in my life, I just didn't know how.Anorexia had brainwashed me. I remember telling my mom during my darkest moments that I didn't want to die but I didn't know how to live.

In my 20s, when I was first experiencing the back and forth of living in recovery, I found my passion and calling in disability advocacy and activism. I wanted to build community and establish safe spaces in an ableist and sanist world but I quickly noticed that eating disorders had less visibility. Conversations about disordered eating weren't happening in the same spaces where people with physical disabilities, sensory disabilities, and intellectual and developmental disabilities chatted. Even in the mental illness community eating disorders didn't really seem to have their place.As a fiery young advocate this confused and angered me - disabled folks battle eating disorders too! Using a wheelchair doesn't preclude you from developing anorexia. Why aren't we telling the whole story?

Over the years I've seen how we erect borders around perceived differences to make disability seem simple and in doing so we stifle our ability to understand, integrate, and create a more just society. I've learned through formal schooling, informal conversations, textbooks and memoirs, movies and television, and via relationships with fiery advocates of all ages that we are stronger together. This means cross-disability, cross-disciplines, allies, advocates, and activists alike. I'm honored that Wordgathering, a home for disabled writers and readers, has given me the opportunity to make space for the stories of those impacted by disordered eating. Ultimately I think individuals with eating disorders are still looking for language, they're still looking for audiences,and there are so many stories that haven't been told yet. We need to listen and learn from those who live it because their stories and their lives have value.

This edition of Wordgathering features the work of five individuals who have unique relationships with disordered eating. In these compelling narratives we'll explore the sensory aspects of life with an eating disorder, the impact anorexia has on family members and their quest to heal, the role diet culture and fatphobia play in society's confrontational expectations of marginalized bodies, the power of words to remind us to love and appreciate our bodies, and lastly provide an unfiltered look at the struggle between dueling mental illnesses.

From the bottom of my heart, thank you for reading

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Eating disorders are incredibly complicated. While some people might simplify these illnesses as being solely about eating – or not eating – food, this definition is dangerously lacking. Eating disorders impact autonomy, agency, they traumatize your brain and your body, and they distort your senses and ability to move through the world. "Sensory Overload" is a powerful piece by Dr. Candace Skibba who explores her struggles with disordered eating as a struggle between the senses. Skibba unpacks how living with an eating disorder truly is a visceral experience that can't be dismissed as merely the inability to eat. Our bodies do so much more for us, which is exactly why disordered eating is so complex, confusing, and misunderstood. Reading Skibba's eloquent words will illuminate how multidimensional disordered eating can be.

"Sensory Overload"

As someone who is in her early 40s – I am beginning to see how many of the disordered components of my life are tied together. I could list them here … Early childhood trauma … disordered eating … rape at 15 … disordered eating … anxiety … disordered eating. With this amount of hindsight, the pattern is quite obvious. Something is happening that is out of my control, so I resort to controlling something within my power – my eating. Or – another scenario, when things seem to be spinning out of control and I am lost, I find myself eating for comfort. With forty years of this under my belt (literally), you would think that I would have learned how to curb this lack of control. What I have learned is that there is value in not having control, or at least recognizing why the habits are occurring and how they related to my mental health.

For me, anxiety is connected with overwhelming environmental stimulus. If there is too much noise, light, color, movement I want to shut down – or to hyper focus thereby eliminating the attack on my senses. Shutting down is turning off, deprivation of senses, no eating. My hyper focus, however, is the opposite. In that state, I crave a singular experience in which the rest of the stimuli and stress fades into the background and my eating experience is foregrounding.

I vacillate between wanting to feel and wanting to be numb. I want to feel when I have been living in my head for too long. When I have been running scenarios ad nauseam or continually making mental lists. In those moments, what I crave is a singular engagement with my body. This could come in many forms. If I am feeling grounded enough, it might be practicing yoga, stretching, or taking a walk. But, if I am not, the corporeal connection comes from eating. With every hand to mouth action, the previous feeling of disconnect is slightly ameliorated. When I was younger, this was also accomplished by smoking cigarettes. Nowadays the binge of choice are almonds … healthier, yes. Awareness, yes. And yet still disordered eating.

Practicing mindful eating is one way of reconciling my disordered eating. When I am in a healthy state of mind, it is much easier to breathe deeply.

In through my nose and out through my mouth.

Feel my sense of smell connect to my sense of taste.

Feel my brain check in with my belly to gauge my level of hunger.

Use my body to pick up a piece of food and slowly bring it to my mouth.

Open my mouth to receive the food, feeling its texture, warmth or chill, and taste on various points on my tongue.

Involve my teeth in the process of breaking down the food…masticating… salivating…

My throat opens to receive the food and provide it passage way to the esophagus…and then downward to the stomach.

And then.
And then.
Wait.
The process starts all over again.

Being mindful is great. If I were to practice more mindful behavior, I wouldn't practice disordered eating. The irony is that it is in the mind itself that the conundrum begins. Me being in my head, using my mind to (over) process is what leads to anxiety.

And then the mind quickly overloads
Sirens passing
TV in the background
Two different people asking me a question
At the same time
Lights too bright
Changing with the shift in content on the TV
An overwhelming waft of garlic from the kitchen
The door opens and closes and opens and closes
It is hot. Foreground NOISE and background NOISE. Chaos.

And then … shut down.

Dr. Candace Skibba is an Associate Teaching Professor in the Department of Modern Languages at Carnegie Mellon University. She specializes in contemporary Spanish literature and film and has concentrated her research on investigating the intersection between literary and film studies and studies of the body - most notably the abnormal body. The study of the body has taken her to gender analysis, dis/ability studies, and health humanities. The convergence of her literary and cultural studies interests and pedagogical foci have led her to investigate agency in both artistic expression and classroom practices.

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Eating disorders impact the entire family and while experiences differ based on social determinants of health, relationships, coping patterns, and access to resources, most everyone experiences trauma. Family members and friends endure vicarious trauma as they bear witness to the pain these disorders cause and as they play their part trying to help a loved one regain control of their life. "Larger Than Life" by Maya Henry is a powerful and heartfelt story about how the trauma of watching a loved one suffer can take years to heal. Henry's moving narrative about losing her brother to anorexia reminds us of the importance of listening to all narratives when it comes to understanding and ultimately finding better ways to heal everyone impacted by eating disorders.

"Larger Than Life"

My brother has been dead for 14 years, and I've been sober for four years, so I feel like I am about a decade behind in my grieving. My brother developed anorexia while he was in high-school. Sweet and funny but a big, awkward teen at 6'7", he began to meticulously carve away at his fat with scalpel-like precision. His body now matching the models who showed off the clothes of the designers he so admired, he did have new-found confidence, but as the years progressed, it clearly was coming at a higher and higher price.

Marc Jacobs was a favorite, and Prada. You could see him savoring the way the jeans hung off his jutting hip bones. He emerged from his teenage awkwardness with his sense-of-humor intact, but with the need to control every ounce of his body to such an extent that he had begun to disappear. His seemed to be all wide shoulders, big hands, and feet. His head became out of proportion to his body. Eventually, at his great height, it seemed to be physically impossible that he should be standing up at all.

The first time he went to an eating disorder clinic he had a feeding tube placed through his nose. Elegant and subtle, it ran along his face and up over his ear, making him look at bit like he belonged in a Star Trek movie. He knitted me a scarf at the clinic. I sent him letters and care packages filled with burned CDs.

My parents and I went to visit him. We sat in a big room filled with other patient families. On the walls were big butcher paper cut-outs of the patients showing the outlines of their bodies just as they were, and around them were the outlines the patients had drawn of what they THOUGHT their bodies looked like. Some were close approximations, but in almost all the cases what they saw in their mind's eye differed dramatically from the reality of the hanging butcher paper cutouts.

Two years later, I got the call that he was in a coma in the hospital after his heart stopped beating after years of battling anorexia and using caffeine pills to manage his weight and his brain had been deprived of oxygen for 17 minutes in a movie theater while waiting for EMS to arrive and perform CPR. He was there with a new friend from the fashion design school he had just started attending in San Francisco. She barely knew him but stayed with him that day while the hospital tried to track us, his family, down.

I've only recently begun to understand the added trauma I went through from sitting by his bedside for three days listening to my mother feebly calling out his name and seeing his fingers and eyelids flutter intermittently. The doctor assured us these were just the rote reactions of the brain-dead. But we'll never really know, will we?

When I got home to my apartment after he died, I couldn't bear to hear the ringer on my phone, each time it rang it reminded me of the hospital calling. I turned the ringer off on my phone and lay on the couch in my apartment drinking wine to escape reality while watching reality TV and listening to the answering machine click on and hearing the voices of well-meaning friends checking up on me.

I was becoming even more untethered, already feeling the loneliness of living in a city where I didn't know many people and lived by myself. All of my friends seemed to be coupling up. I found it almost unbearable to be around people. I wanted a signboard to wear around my neck explaining the grief and pain I was experiencing so I didn't have to keep pretending. I would often go out with friends and leave early to go sit at home by myself, exhausted and overwhelmed at having to keep up the tenuous charade that everything was fine.

Slowly the tight spiral I was bound in began to unfurl, and I began to find I was able to enjoy things again, though everything felt shaky and a little surreal. As the years passed, and with professional support, I was able to reach down into the deep well of strength and resiliency and those reserves were enough to claw my way out of the well. I committed to 60 days of sobriety and in the first few days knew I would never drink again. Taking the alcohol away meant to some extent I had to feel all the lowest lows I had covered up with the booze. I was playing emotional catch-up, and even though I thought I was prepared, it's still like a cold bucket of water that gets dumped on you at the most unsuspecting times.

My mom went through a phase a few years after my brother's death where she seemed committed to finding a place to put his ashes, a place we could go visit him. Every time I came to town there was a new place to visit: a vintage-feeling mausoleum in San Francisco, a natural burial graveyard overlooking the sea. But we couldn't settle on anything, maybe because finding a place means finally letting go.

It's definitely been helpful to write about the moments surrounding his death. I want to share the story of what it's like to lose a sibling in adulthood, of how it colors all those childhood memories and makes them bittersweet. How part of the grief has been grieving the loss of my own childhood experience in a certain way. As though what happened in the future has gone back and seeped all its inky darkness into the past.

Maya Henry is a writer, educator, and women's health advocate who helps people make everyday decisions to impact their lives and the planet. Maya lives in Pittsburgh, PA where she holds skateboarding retreats for women.

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As a society we equate thinness with desirability, confidence, happiness, and worth, which means if someone is fat they are automatically undesirable, insecure, unhappy, and worthless. We are taught from an early age that the size of your body determines your value and we are not taught that diet culture is anchored in prejudice, subjugation, and abuse. Nor are we taught that heteronormativity, toxic masculinity, sexism, racism, ableism, sanism, classism, transphobia, and capitalism are the engines that fuel our damaging (and sometimes fatal) obsession with controlling marginalized bodies. In "I Want Freedom," Virgie Tovar, a queer fat activist and woman of color, explains how our patriarchal society uses diet culture as a tool to discriminate, terrorize, and monetize fat bodies. Tovar urges us to examine and disrupt this system of oppression because the focus should not be on condemning and "curing" fat bodies. All bodies deserve love, acceptance, justice, and the freedom to exist safely. "I Want to be Free" is a chapter in Tovar's motivating and compassionate book, You Have the Right to Remain Fat, a radical manifesto that deserves more than one read.

"I Want Freedom"
Excerpt from the book You Have the Right to Remain Fat by Virgie Tovar

For a very long time I wanted to lose weight more than I wanted absolutely anything else. I believed that life would begin later. I would wear a bikini later. I would be happy later. I would wear short shorts, go on dates, feel beautiful, wear bright-pink lipstick later. I would travel the world, enjoy cupcakes, and smile with complete abandon in pictures later (when my cheeks were smaller and I didn't have a double chin). I would love myself later.

I want to be completely clear with you about what dieting was about for me. It was not just about eating carrots, fat-free popcorn, low-calorie Pop-Tarts, or fat-free, sugar-free, gluten-free frozen yogurt. It was not just about weighing myself once, twice, or sometimes ten times a day, it was not just the pure joy I felt when I'd gone down a pound or the intense shame and self-loathing when I gained it back. It was not just about the �willpower' and the jumping jacks and the pedometer that tells you how many miles you walked this week. It was not just about skipping dessert or sleeping through dinner. It was not just about food journals or crying in front of the mirror while I squeezed my fat loathingly.

I realize now that all those years I dedicated to losing weight and hating my body were actually about a misguided attempt to be free. Yes, I dieted because I believed that it was only through weight loss that I could deserve to travel, wear cute clothes, and go on lots of dates with people I was hot for. But more than that, I wanted the stuff that those things represented: happiness, love, joy, and most importantly, freedom. I was trying to starve my way into freedom. I had been taught to believe that weight loss was the key to all my heart's greatest desires, but the truth is that it wasn't. Because you cant find self-love by walking a path paved by self-hatred.

I had been taught that dieting was the path to freedom, and it took me a long time to realize that this was one of the greatest lies ever told. With dieting, everything depended on me accepting that I was the one to blame because I was fat. With dieting, I had to admit that there was nothing wrong or sick about a culture that taught me how to hate myself. With dieting, I had to believe that the trouble and the problem resided within me, not outside of me. I was intoxicated by the notion of this individual power. Even as it was eating me alive, it was feeding me the idea that I could have anything I wanted, that the more I sacrificed the more I gained.

I realize now that all those times I had said �I want to be thin,' I actually meant:
I want to be loved.
I want to be happy.
I want to be seen.
I want to be free.

Virgie Tovar is a San Francisco-based author and activist, and one of the nation's leading experts and lecturers on fat discrimination and body image. She started the hashtag campaign #LoseHateNotWeight, and edited the anthology "Hot & Heavy: Fierce Fat Girls on Life, Love & Fashion." Tovar's writing has been featured by the New York Times, MTV, NPR, the Huffington Post, Cosmopolitan, and BUST.

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Since I was a child I've collected quotes and sayings that inspire me, ground me, and provide guidance. Growing up in a pre Pinterest and Instagram era, these sentiments and words of wisdom can be found tucked away in notebooks and diaries that find homes in the bookcases lining my walls. I still collect these meaningful snippets � mostly virtually these days � but I make sure that they are all within reach as they have the power to remind me of who I am and what I want to achieve as a patient, a person, and a professional. Nora McInerny Purmort's words have offered me motivation, affirmation, and comfort and I've included one of her sayings in this edition that I think reminds us of the fact that we have the power and the responsibility to treat ourselves with love, patience, and kindness.

I want to tell you that your body is an amazing little skin house your soul lives in, and you only get one, and you sure as hell better admire it every day.

Nora McInerny Purmort is a master storyteller. In the span of a few weeks in 2014 she had a miscarriage, lost her father to cancer, and lost her husband due to a brain tumor. Purmort is an author, public speaker, and hosts her own podcast, "Terrible, Thanks for Asking." She is known for bringing heart and humor to even the toughest topics. She uses her personal story about living through loss, grief, and new beginnings to connect with audiences.

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Lastly, I've included one of my own pieces entitled "i am awake," that tells my story of living with multiple mental illnesses. In my world the intricacies of life with anorexia and bipolar disorder are further complicated by bouts of psychosis which fracture my reality and put me at war with a brain that's betrayed me and a body that weighs me down. There have been numerous times throughout my life when this feeling of being trapped in a vessel that both frightens and disgusts me has made me suicidal. Thankfully I have the supports and resources to not only manage my care, but also enable me to learn how to be an advocate. I chose this topic because I have the power and privilege to amplify these narratives and I believe it is a matter of social justice to embrace those living with disordered eating and commit to toppling oppressive infrastructures. If we don't learn from one another we will never improve our world. If we don't keep raising our voices we will forget about each other.

"i am awake"

My eyes are like opalescent eggs and I sigh and slash them into crescent moons.

When I'm bipolar-tired my skin cells scream and my teeth itch. The tips of my fingers ignite. The seeping tender pulp where my teeth are anchored in the halo of my mouth just begs to be picked apart by long flaming fingernails.

I'm blurry at every corner and my mind buzzes with radiation and it's like I'm sentencing myself to the electric chair and I don't even care. The zapping and spitting in my skull forces me awake even though I'm exhausted and jam-packed with medication. I'm too tired to sleep. I'm wired against my will.

I lie in bed and in an insomniac's stupor I grab the soft fat on my stomach and I'm all about body checking myself throughout the night. I drift asleep but suddenly wake up to pinch my excess pounds on my too big frame and it's like a nightmare. In the middle of bipolar nights my anorexia narrates my dreams. The self-torture of squeezing my extra meat. The fear of fatness boring red-hot pokers into my eyes so I can't sleep in between the fire. If I fall asleep I'll wake up and be fat.

I ferociously scratch my skin to see how it feels and the sound of my nails furrowing track marks in my forearm is like an odd, throbbing lullaby. I'm plowing crop circles in my skin and the wet hum of divining lazy blood rivers helps me keep time to the heaving of my madness. I whisper softly to myself in between the scratches�not sure of what I'm saying�but I can't slip into a sounder sleep. So I rip and pinch until my brain is evicted from this cluttered body. I grab my worn, weeping suitcases and go. I don't get my deposit back because there's too much damage. The before and after scratches are too severe.

The next-day medication hang over is brutal. I took pill after pill, stocked like a Pez dispenser, but it didn't deliver the sleep I signed up for so I'm infuriatingly fuzzy from the sedative powers of my white tablets, usually my white knights, the Seroquel I thought I could trust. My eyelids are dredged open and I peek out of my jittery slits. My slimy eyes are vibrating like I plugged my lashes into a wall socket. I needed sleep and I didn't get it and the meds in me that failed to do their job still linger in the front of my brain weighing it down with wet lies and I'm so frustrated and sick. My bipolar giggles in the empty chamber of my mouth and my anorexic ideas strangle me so no food can get in.

I am awake.

Nobody look at me.

Rachel Kallem Whitman is a freshly minted doctor, educator, self-advocate, and writer who has been shacking up with bipolar disorder since 2000. Through raw, honest, and emotional storytelling Rachel seeks to narrate her own journey, navigate her own recovery, and kindle hope for those impacted by mental illness. A reader once emailed her to say that the most beautiful words in any language are "you are not alone." This sentiment drives Rachel's mission to create a safe community to empower individuals to look beyond their illness to find themselves. Rachel has over three thousand followers at medium.com/@RKallemWhitman and her speeches, interviews, and writings have garnered acclaim locally in Pittsburgh, PA, across the United States, and internationally.