From “Unthinkable Task”

November 2012

Stalling, I stare out my bedroom window at sinister black trees. Bleak sky. No sun. Three weeks ago, these trees were on fire--explosions of orange, copper, crimson, and gold on a cobalt backdrop. Lit by a luminous sun, fluorescent leaves had fluttered with strobe effect, some falling to the ground. Musky notes of burning foliage had floated through the open window. Struck by the glory of fall, I had lingered here, as before a campfire. Now, except for a few tattered leaves, the branches are bare. Shivering, I turn.

I sink to the carpet where I sit cross-legged, surrounded by boxes of loose photos and family albums, pillowed in fabric and trimmed with lace. Two tri-fold poster boards lean against my bed, blank and inescapable.

I reach for my reading glasses, then drop my hand. I don’t want to see these photos up close. Sharp images slash.

I sort through fuzzy pictures of my three children as swaddled infants, chubby, smiling toddlers, grinning school kids, and lanky teens, willing myself not to feel, not to remember.

There’s too much to do in one week. I must select the menu, table linens, and music. I must decorate the church fellowship hall with Chinese lanterns, white string lights, votive candles in crystal bowls. I must also write a eulogy, for as little as I know, I know more than anyone else. This is the most pressing task. It precedes writing an obituary; scouring the Internet for a cremation urn that doesn’t scream funeral; displaying a collection of Rachel’s paintings on easels around the sanctuary.

On October 14, 2012, my only daughter, Rachel, had fallen into a drug-induced diabetic coma. Her boyfriend called 911 but did not follow the ambulance to the hospital. I would learn that paramedics carried her stretcher down the three flights of perpetually dusty stairs in her Bristol, Rhode Island apartment building, past broken windows, held together with duct tape, past her lovely paintings, hung on each floor, I often thought, to offset the squalor. Rachel arrived at the hospital ER unconscious and alone, to the perplexity of the attending physician who found my number in her cell phone.

She died on November seventh and was cremated the next day. Two days later, my ex-husband, Perry, suggested we needed to hold the memorial service on November 17, so it didn’t interfere with the holidays. My husband, Phil, agreed. I told them I needed to grieve. They said I must think of our guests. 

Therefore, I search through albums and boxes for photographs of Rachel from every phase in her life to arrange on the boards in some meaningful order. Her sweet face smiles up at me in photo after photo. Suddenly, blond bangs and pigtails blur. I wipe my eyes and nose, swallowing the pain rising in my throat.

How is it that the mother, the one most crushed by the death of the first child she carried and bore, must plan the service—but who else could? My mother and three sisters are in Wisconsin booking flights. I can’t entrust these preparations to Perry or our two adult sons, Matthew and Ryan; or Phil, and his two adult daughters, Nikki and Krissy. No one knows Rachel’s tastes like I do. No one but her mother would get every detail right.

 Our dear neighbor, Maria, had offered to help.

“What can I do?” she had asked, appearing at our front door, with red eyes. Though Maria always had a heaping plate, she was the first to help someone hurting.

“I’ve got it,” I lied, my own eyes dry.

What must friends and neighbors with pained faces and wet eyes make of my blank face and dry eyes when they bring casseroles and flowers? My heart feels frozen, like it’s been shot with Novocain. Only unlike the dentist’s numbing needle, this anesthetic doesn’t fade.

Maria stood her ground until I gave up half the food and agreed to let her print the programs. The day of the memorial service, I would find her stunning floral arrangements,  mums and gladiolas in rich autumnal tones, displayed on the altar and banquet tables.

I organize the photos into piles—infancy, siblings, vacations, school. I should be drafting Rachel’s eulogy. Shaken guests at her memorial service will want answers. But that will require reading glasses. So I stall.

A photo of Rachel taken a day after her birth—fat cheeks, doll lips, eyes sealed in post-fetal sleep—arrests me. As I pick it up, its colors bleed.
…………………………..
Staring at the photo of my flawless infant, I am struck by how far Rachel had fallen from that perfect state.

How had this happened?

From “Diabulimia”

december 2012

I don’t remember decorating that Christmas. I do recall displaying the two tri-fold memory boards. After Rachel’s memorial service, I had leaned them against the living room wall, meaning to return the photographs to their respective albums and boxes. Instead, I unfolded the boards and left them there. Maybe I liked the semblance of order, Rachel’s short, chaotic life portrayed in perfect categories—birth, siblings, school, family trips, graduation, prom. The smiling faces, reminding me of sweeter days. In any case, I couldn’t bear to break them down. So, I let them live, grateful no one said a word, even as weeks turned into months.

Sympathy cards replaced Christmas greetings that year. One envelope weighed more than the rest. As I opened it, a folded paper fell in my lap. It was a letter on heavy-gauge stationery from the Rhode Island Foundation informing me that in Rachel’s memory, and per the recommendation of her dear friend, Amanda, a grant from the Ophelia Fund had been awarded to Dr. Ann Goebel-Fabbri, a clinical psychologist at the Joslin Diabetes Center in Boston, Massachusetts, for her research on diabulimia.

Dia-what?

Rachel had met Amanda in the Partial Hospitalization Program for Eating Disorders at Hasbro Children’s Hospital at age sixteen. Their bond was instant and lasting.

Though warmed by Amanda’s gesture, I wasn’t sure how this research related to Rachel, who had diabetes and bulimia. Maybe diabulimia referred to people with both illnesses. Whatever it meant, it gave me chills. Merging the two words, made it sound diabolical. I resolved to research it soon.

I drifted in a fog of grief through the holidays. Not smelling pine trees or roasting turkey, blind to colored lights, deaf to Christmas carols and New Year horns. As I floated, that word—diabulimia—bobbed in my subconscious until a disquieting thought emerged: What if Amanda knew something about Rachel that I didn’t?

I rushed to my study, barely seated before opening a Google browser. My fingers flew over the keys as I typed “diabulimia,” gasping when I received 77,800 hits.

I learned that diabulimia is an eating disorder (ED) unique to people with type 1 diabetes, primarily adolescent girls and young women, who purposely reduce or skip their insulin to lose weight. When they binge on forbidden foods without adequate insulin, they become hyperglycemic. That is, their blood sugars soar, causing their bodies to “purge” the excess sugar and calories through urination. [1]

Diabulimia, also known as “insulin restriction,” affects eleven to thirty-nine percent of young females with type 1 diabetes. [2] However, since the disorder is hidden, some researchers believe that the percentage of females who practice it is actually much higher. [3]

Suspecting that diabulimia had more than a little to do with my daughter’s death, I could not read the facts on my screen fast enough. My astonishment grew as I watched YouTube videos and read story after story on the Internet of young females who also secretly skipped or stopped taking insulin altogether, thinking they, too, were the only ones. Though well aware of the related health problems, like Rachel, all they cared about was weight loss. Thinness was worth more than life itself. [4]

Moving on to academic journals, I learned that as common as EDs were among the general population, young women with diabetes were 2.4 times more likely to acquire EDs than their non-diabetic peers [5] for multiple reasons. First, their strict diets required them to be so preoccupied with food that eating-disordered thoughts and behaviors often followed [3].

Rachel had to eat a prescribed number of meals and snacks containing a specific number of carbohydrates at specified times, whether or not she was hungry. I recalled her obsessive interest in nutrition labels. She had never liked grocery shopping, but after her diagnosis, list in hand, she never missed market day. Pushing her own cart, she scoured the shelves for sugarless products and those with low carb counts. In any given aisle, I would find her, head down, reading the labels on soup cans, cookie packages, frozen dinners, etc. “The trick,” she told me, “is finding the lowest values. The fewer the carbs, the more I can eat.”

Weight gain related to insulin usage was another reason young females with diabetes developed EDs. Prior to their diagnosis, most girls were hyperglycemic and, therefore, very thin; however, once they started taking insulin, they gained weight fast. [2] Rachel had made this connection after gaining fifteen pounds, yet more than one doctor had shot her down.

“If insulin doesn’t cause weight gain, why are so many diabetics fat?” Rachel pointedly asked our latest endocrinologist, a petite woman with diabetes herself, whose A-line denim dress could not conceal her own heaviness.

“There’s no evidence to substantiate that,” she snapped.

The extra pounds distressed many preteen and teenage girls, who tended to obsess over their appearances. [1] No surprise in 1998 when at every turn popular culture touted the tall, thin female physique. Girls with diabetes who felt they didn’t stack up secretly fought back, many discovering the “dirty little secret” about insulin: If taking their required dose resulted in weight gain, underdosing it did just the opposite—allowed them to shed pounds quickly and painlessly.

Though a convenient way to lose weight, the effects of diabulimia were devastating. First, diabulimics found that, like other EDs, the behavior did not die easily. Habitual insulin restriction only got worse; adolescent girls tended to deprive their bodies of more and more insuin as they grew into young adults. Practiced over long periods, the behaviors became ingrained, often defying treatment. [2,3]

Also disturbing were the many studies showing that people who restricted insulin were more susceptible to serious diabetes-related health problems. Short-term complications included hyperglycemia, infections, hospitalizations and ER visits, as well as regular episodes of diabetic ketoacidosis. [2, 3, 7]

Equally alarming were the long-term diabetes-related health complications that could occur sooner than expected among insulin restrictors. High blood sugars over long periods could cause: heart attack, infertility, retinopathy, (retina disease, resulting in partial or total vision loss), neuropathy (nerve damage), and nephropathy (kidney damage), as well as other health problems. [2, 5, 7]

Most distressing was the premature death rate among diabulimic women, who tended to die eleven years younger than non diabulimics. [8]

And these were just the physical effects of diabulimia. The other dreadful dimension to this disorder was its psychological effects, the horrible thoughts and feelings that assault young women who knew they were deliberately destroying their body organs through insulin omission. Neither the medical journals nor the memoirs I read elaborated on this.

But Rachel’s journals did.


1 Dada, Janice H. “Understanding Diabulimia - Know the Signs and Symptoms to Better Counsel Female Patients.” Today's Dietitian, Aug. 2012, www.todaysdietitian.com/newarchives/080112p14.shtml.
2 Daneman, D., et al. “Eating Disorders in Adolescent Girls and Young Adult Women With Type 1 Diabetes.” Diabetes Spectrum, vol. 15, no. 2, 2002, pp. 83–105. Crossref, doi:10.2337/diaspect.15.2.83.
3 Goebel-Fabbri, Ann E. “Diabetes and Eating Disorders.” Journal of Diabetes Science and Technology, vol. 2, no. 3, 2008, pp. 530–32. Crossref, doi:10.1177/193229680800200326.
4 “Shocking Trends of the New Year.” Dr. Phil, Peteski Productions, Inc. © 2021 CBS Television, 3 Jan. 2008, www.drphil.com/slideshows/shocking-trends-of-the-new-year-kaytee-michelle-wanda.
5 Jones, J. M., et al. “Eating Disorders in Adolescent Females With and Without Type 1 Diabetes: Cross Sectional Study.” BMJ, vol. 320, no. 7249, 2000, pp. 1563–66. Crossref, doi:10.1136/bmj.320.7249.1563.
6 “Influence of Intensive Diabetes Treatment on Body Weight and Composition of Adults With Type 1 Diabetes in the Diabetes Control and Complications Trial.” Diabetes Care, vol. 24, no. 10, 2001, pp. 1711–21. Crossref, doi:10.2337/diacare.24.10.1711.

7 Rodin, G. M., and D. Daneman. “Eating Disorders and IDDM: A Problematic Association.” Diabetes Care, vol. 15, no. 10, 1992, pp. 1402–12. Crossref, doi:10.2337/diacare.15.10.1402.
8 Goebel-Fabbri, A. E., et al. “Insulin Restriction and Associated Morbidity and Mortality in Women with Type 1 Diabetes.” Diabetes Care, vol. 31, no. 3, 2007, pp. 415–19. Crossref, doi:10.2337/dc07-2026.

From “SOS”

I sat down on the living room sofa to fold clothes, crisp fall air wafting through open windows. Our trees were pure gold, sunny leaves trembling on branches. I never heard Rachel come in. Suddenly, she was just standing there, her face solemn. She did not sit down.

“I think I have an eating disorder, Mom.”

It was fourteen months after her diabetes diagnosis.

“Why do you think that?” I calmly asked, continuing to fold clothes.

In 1999, EDs were getting more press. Celebrities, like Princess Di, Calista Flockhart, Paula Abdul, and Mariel Hemingway, were publicizing their struggles with bulimia and anorexia. But Rachel also had an active imagination.

“My body perception’s messed up.”

“What do you mean by ‘messed up?’” I stopped folding to study her face, a bath towel warming my lap.

“Well, kids at school tell me I don’t look any different—I mean, no fatter—but I think I do.” Her eyes flitted around the room before finally settling on me. “So maybe my body perception’s distorted.”

“I don’t think so. You have gained a little weight since your diagnosis.”

The look that leapt into her eyes quickened me to qualify myself.

“You’re not overweight. What I mean is, you’re seeing correctly. You’re seeing what’s actually there. So, I don’t think you have a distorted body perception. I don’t think you have an eating disorder.”

I hadn’t thought to probe deeper, ask if she had any other symptoms or concerns. I assumed she had put all her cards on the table. I had a lot to learn about teenage girls. I would discover that they reveal only a fraction of their issues, sinking their deepest concerns. [1]

A troubled look hung on Rachel’s face.

“What’s wrong? Aren’t you relieved?”

“Not exactly,” she said, exiting the room.


1 Pipher, Mary. Reviving Ophelia - Saving the Selves of Adolescent Girls. 1st ed., Putnam, 1995.

From “Heroin 101” & “Interference”

2005 (Age 20)

On January 5th, I told Rachel we were sending her to Remuda Ranch, the leading ED facility in the nation, located in Wickenburg, Arizona. After six weeks of searching and insurance negotiations, it was finally happening. I thought she would be pleased.

“I’m not ready,” she said, brushing by me. I followed her into her room.

“It’s time, Rachel. We finally squared away the finances. They can take you this week.”

A shadow fell over her face. “This is happening too fast.”

I could see she was shutting down. I should have pulled back. But if we didn’t take the bed, someone else would. Her recovery would be further delayed.

“You asked for this, remember? You told me your life was out of control.”

Her eyes were cold blue marbles. “I’m not going.”

I felt my cheeks burn. “Oh, yes you are!”

“I’m an adult.”

“You’re not acting like one.”

“Still, I am one, so you can’t force me!”

She was right. Because she was over eighteen, unless I got a court order, no matter how disturbed she was, she could keep calling the shots to her own detriment. It was a frustrating, infuriating, and ultimately fatal wall I would bang my head against for the next eight years.

I played the only card I had.

“Oh, yes I can. You either go to Remuda or move out.”

Glaring, she said, “I’ll get back to you on that.”
………………………………………………………………………………………………
The next day, Rachel told me that Barbara [her boyfriend, Lance’s, mother] was taking her in.

Heart pounding, I dialed Barbara, certain she would renege once she learned that Rachel had a dangerous ED for which she had been hospitalized that could be life threatening when combined with diabetes.

I expected her to share my alarm, to assure me that she would help safeguard my child—all the sentiments I had expressed to her weeks earlier when Lance had started shooting heroin. But, except for some exclamatory sounds, Barbara was silent.

“This has been going on for six years, Barbara!”

“Hmmmmmm.”

“I need to get Rachel into treatment right away—surely you can understand this!”

Silence.

“Barbara, please tell me you will not take her in!”

“I can’t do that,” she finally said. “Rachel helped Lance detox. I owe her.”
………………………………………………………………………………………………
Rachel returned about a month later, so spooked by Lance’s habit that she agreed to go to Remuda. Sitting at the kitchen table, her face grave, she said Lance was in love with heroin; all he cared about was getting high. The detox was a joke; he shot up every chance he got.

“His mom actually bought him a brick of heroin after he agreed to go to rehab—can you believe it? She called it his ‘last hurrah.’”

I shook my head. “Are you sure about that, Rachel?”

She nodded. “Barbara gave him $150 to buy it. But she didn’t want to get her hands dirty, oh no, that was my job. I had to dole it out.”

I gasped, picturing Rachel in that situation. Was this how Barbara repaid her? I thought of Rachel’s natural curiosity, her recklessness. My heart started hammering. Though she had railed against heroin, I had to ask.

“Did you try it?”

She hesitated, her eyes locked on mine. Then, exhaling deeply and looking down, “I did—but I hated it.” Grimacing, she added, “It tastes terrible, and I didn’t feel anything.”

“How many times?” I calmly inquired, though my heart was pounding out of my chest. No one gets off heroin, she had said.

“A few times, but I only took it to stop thinking about food, and you know what?” She finally looked up. “It did help. For a few blessed hours, I got relief.”

“That’s insane, Rachel! You don’t beat one monster with an even bigger monster! You’re asking for disaster! What were you thinking?”

“I’m not addicted to heroin,” she snapped. “I came back, didn’t I? I told you all this because I don’t want that life.” She leaned forward, her face sober, credible. “Don’t worry, Mom. Food is my drug.”

From “There are drug addicts in my cinema”

January 4, 2005

I used for the first time on January 2nd. I was so scared when Lance gave it to me. Very, very frightened. I didn’t try it only to see what it was like for him. I tried it to see what it was like to not want to eat. The heroin made me extremely sexual. Very uninhibited and driven, shall we say.

Lance must have known how badly I wanted to take a bag of heroin home. He gave me one hidden in a pack of gum. He told me to swallow it if I got pulled over. “This is serious,” he reminded me. “Do not get caught with that shit.”

Now Lance is fumbling with veins in the dark. We are parked at the movie theatre.

Though I am fairly used to the sight of needles, I am taken aback by the violence in this. The blood that comes out of his arm is such a dark red, almost black like tar. He leans over and sucks it up. He pokes around like I used to, in search of the right spot. There are expletives, streaks of red, paraphernalia covering the seat of his truck. Water, syringe, Q-tips, bags. He moves systematically, like a professional. I am supposed to be watching for cars. Police cars, that is.

Lance finally finds a vein. Meanwhile, I open a blue slip of paper and empty out its mud-colored contents. How many flowers do you think it takes to make one of these, I ask. I know I ask far too many questions. I take a rolled up dollar bill--the last dollar Lance has to his name. I snort it into my left nostril. Much like leaning over a sink. I snort and snort to feel it in the back of my throat. It tastes like a mixture of metal and blood when it falls.

Heroin is a pretty word, I have decided. Graceful.

I don't feel much of anything, but soon I will. At the very least I will feel relaxed, alive. Then I remember this is how it started. You cannot tame a monster. There is a reason certain terms bring about nothing but trepidation and frowns.  I block those thoughts right now. I deserve to feel good. I have felt like shit, absolute anxiety-ridden shit for six years.

As we enter the theater, the metal blood is making its way down my throat, bitter and poisonous and apprehensively welcome. Lance and I are all love and patience. We get our tickets and I watch the manager turn a quick corner on the ball of his foot. I picture him making a frantic phone call to the authorities. “There are drug addicts in my cinema! Get here immediately!”

We get a large popcorn and I tell Lance to answer “yes” when the girl behind the counter asks if we want butter. We pour lots of salt onto it too. Lance thinks this is funny; We walk in snorting with laughter. I think it's making us obvious. I go into the ladies room. Heroin makes it unbelievably challenging to urinate. I look at myself in the mirror. Vega pants, Juicy Couture hooded sweatshirt, Vivid hat, ballet flats. I certainly don't look like a drug addict.

By the time we get into the movie I am fairly high. I am warm and eating too much popcorn.

After the movie I go home and begin to have a low-grade anxiety attack. I am very hungry. I want to eat what I want to eat, and it's not salad. I stomp around a bit, desperate. I would rather be a drug addict than a bulimic. So I dump a bag of heroin on the counter and suck it up with a straw. When it hits me, I feel the urge to eat slowly dim till it is just a quiet hum. Then because I am hungry, I make an open-faced turkey sandwich and eat it. I am still frustrated, still craving food. By the time I have talked myself into just having a cigarette, I can barely even coordinate my motions. I go upstairs and look in the mirror. My pupils are pinpoints and my face looks vacated and unfamiliar.