Everyone who knows me knows that I love to cook. I see food as abundance and pleasure and bliss. I was the mother that encouraged my children to know themselves and to know their bodies. I never forced my children to clear every morsel of food from their plates. They were encouraged to eat until they were satisfied, not until we deemed fit. No foods were off limits, no foods were dismissed as unhealthy, and there was no boundaries for indulgences. Food was meant to be a pleasurable experience. Each night our family would sit down to dinner together, regardless of our hectic schedules, to enjoy a meal with one another. Dinners paused our active schedules and allowed us to take a moment to reminisce on the good and bad of our days. Dinners made memories and brought about radiant smiles. Mornings on the weekends were brought to life with U2 and pancakes dripping in syrup as we danced around the kitchen, savoring every mouthful of breakfast. Our house became the frequented house in the neighborhood. Our pantry was often raided by my children's friends when nothing to their liking was being made at their own homes, and it was not unusual for our dining room table to be crowded on weeknights. Meals brought us together. Meals made us whole.
When you hear the words, "Your child has an eating disorder," your mind immediately begins to blame you, asking the questions, "Where did I go wrong? Did I not nurture her like a mother should? Did I say something that could have manifested this illness?"
Once Emma was diagnosed with an eating disorder, our meals became a battleground. I ceaselessly encouraged Emma to eat, but was only met with resentment and irritation. According to Emma, I simply did not understand. My concerns were trivial, useless, superfluous. The word "diet" would have never been mentioned, or even thought of during our once jovial dinners, but now it seemed to be the theme of our conversations at meals. We only used to talk about food if it happened to be enjoyable, but now it became a subject rooted in anguish. Silence at the table became a relief, as I did not have to battle with Emma anymore. Indulgence and pleasurable experiences surrounding food were now lost. At this point, I could not even encourage Emma to taste her food.
When Emma was first diagnosed, my nurse instincts encouraged me to search for evidence, trying to piece together proof of this diagnosis. As a nurse, how could I have overlooked this evidence that was glaring at me? Emma is cold all of the time. A thirty minute workout would leave her breathless and fatigued, but her obsession with exercise would force her to ignore her exhaustion. She only eats foods deemed healthy to her, leaving her in a state of black and white thinking. She went from eating holistically to being stuck in a food rut, eating the same foods day after day. Trail mix became the staple of her diet, as she ate a handful of it for nearly every meal, and she refused to stray from what she deemed "normalcy." She was distant and moody at times, which made it hard to recognize her once easy-going, care-free persona. She was ninety-two pounds at 5'2".
The other side of my brain attempted to rationalize the evidence. Some people have a tendency to be cold all the time. It's admirable that Emma is striving for a healthy, active lifestyle and incorporating healthy foods into her diet. Kids often fall into food ruts and fixate themselves on only liking certain foods, that's normal. Emma is entering her teenage years; it would be unrealistic if she never exhibited teenage mood swings. Emma has been naturally small her entire life. If the doctors are not uneasy over the fact that she strayed from her growth curve, why should I be so concerned?
This diagnosis not only caused me to worry perpetually about Emma, but also about her younger eight year old brother. How would these battles at the dinner table affect him? How would he withstand this added stress? Would he be able to cope?
I became socially isolated. My entire focus was fixated on bettering Emma's health, so I did not have spare time for friends or socializing. People who were aware of our situation would often try to give me advice, making it sound like I was not nearly as equipped as they might be at handling this situation. I felt defeated and inadequate as a parent. It took me years to realize that I did not cause this disease; this illness does not always have an exact cause that you can pinpoint. Rather than wasting time trying to search for the root of this disease, I concentrated my focus on the present moment. Now was the time to focus solely on my family and attempt to repair what once was.
During this six year period as Emma and I battled over countless meals, her doctors instilled in me that I was her life giver. The medical team made it clear that it was my duty to ensure that Emma did not exercise, and it was my responsibility to feed her 4,000 calories per day. Above all, I had to keep my daughter alive. My brain could not grasp Emma's diagnosis, but naturally, as a doer, I took the doctor's instructions as something to focus on. Yes, this was good for me because it kept me moving forward, so I would not fall apart at the thought of the diagnosis. On the other hand, this also put a great deal of strain on me. If Emma did not make strides towards her goal, I felt like a failure.
Despite the battle in my head, I persisted with the doctors' orders. Before each meal, I would repeat the mantra in my head, "I won't fight over food today. I will keep meals calm and serene. Dinner tables are not battlegrounds." Throughout Emma's high school career I managed to keep her afloat, but she never reached her optimal weight. She secured herself in her comfort zone, and would not let anyone in. No matter how much I persisted, there seemed to be a subtle manipulation on Emma's part, allowing her to stay in her realm of comfort, and kept me at bay without me realizing what she was doing. There is only so much control a parent of someone struggling with an eating disorder can have. Emma ate most of her meals at school, leaving me to rely solely on trust as she told me that she ate everything in her lunch bag. Emma's eating disorder ruled her thinking, causing her to ignore her own values and desires. Her eating disorder became a dominating voice in her head that she could not simply mute. I did not realize that this disorder was so far out of her control.
Although I was anxious at the thought of Emma leaving for college with an eating disorder, I believed having complete independence in a new environment might help her in moving forward. I was hopeful the day I moved her into college. Maybe it was my constant watch over meals that pushed her deeper into restriction and caused her to resist my efforts. Change is what she needed.
Except for the occasional text, I did not speak to Emma much during her first few weeks at college. This, to me, was a natural sign of adjustment. Nothing could be deemed abnormal or alarming from her messages. As fall progressed to the end of September, my phone rang sporadically throughout the day, and I answered what seemed to be typical college adjustment questions regarding social life, coping with living in a dorm, and academics. As September ended, however, Emma's anxiety seemed to be at its peak. My phone rang incessantly, and with every call I was forced to essentially talk Emma off of an "anxiety ledge." Her anxiety revolved around school work, and her inability to manage her new schedule. My worry regarding Emma's anxiety immediately went to her eating disorder, but Emma assured me she was eating.
It was on October 4th of this year that I received a phone call from a doctor at the University of Vermont's medical center. As a safeguard, I was set up with the University's medical team just in case Emma had an emergency. Through the doctor's eyes, Emma had lost a significant amount of weight and was very ill. In only one short month Emma had plummeted to eighty-six pounds at a height of 5'4". A picture that Emma posted on social media that I came across later that day, confirmed the doctor's concerns. Despite her sick state, the doctor assured me that Emma seemed to be motivated to improve her health, but she was too malnourished to heal herself on her own. Little to my knowledge at the time, Emma could have caused serious harm to herself if she began to increase her caloric intake by herself. By introducing more calories too quickly she could have caused an imbalance in her electrolytes which, in turn, would have sent her further back in her journey to recovery.
Without hesitation, I drove eight hours to pick Emma up from college in Vermont. When I called to give her the blunt news, I had to repeat myself three times, as her brain was too fogged from malnutrition to understand. Through the fog, I could clearly hear that she was terrified. Through tears, she admitted to me that she set an alarm once every hour during the night, as she was concerned that her heart would fail her as she slept. Deep bruises lined her fragile spine from lying on her mattress and she had to sit on her backpack during classes to avoid the wooden chairs. For the first time, I felt an overwhelming sense of hope. As hard as it was for a parent to admit, I found hope in the reality that Emma had reached her lowest weight. Knowing that she could no longer sustain this painful way of life, Emma would now be willing to accept the help she needed. During high school, Emma managed to hover just above rock bottom despite our efforts. We were all petrified of the outcome of her reaching the depths of her suffering. Rock bottom, however, was exactly what she needed.
For the past six years, our family has fought an uphill battle. Since the beginning of Emma's journey, we had desperately vied for the route of hospitalization. Despite our pleas for help, professionals maintained that Emma did not fully meet the criteria for having an eating disorder; her BMI was not low enough to meet inpatient criteria. With this, it was our responsibility to nurse her back to health, and it was Emma's job to meet us halfway. But Emma never saw herself as sick; she never believed that she needed help or was not, in fact, living her most abundant, fulfilling life. Her powerful brain restrained her from seeing reality. In reflection of Emma's journey, there is nothing that could have been changed or forced. Every individual has a journey tailored specifically for them. If we had forced Emma into recovery six years ago against her will, she would have never whole-heartedly invested herself into reclaiming her health.
After two and a half week at the Children's Hospital of Philadelphia and nearly two months into a home-based family therapy program, I truly see food as medicine. With the right nutrition has come a rebirth. Emma's once murky brain is now clear and sharp again. The hair she had lost to her illness has returned with vibrance, and her supple skin shows that she is very much alive. Her once absent muscles are now ever-present and powering her through workouts. Over the past few months, I have been re-introduced to my spirited, resilient daughter, who had been lost for so many years.
An eating disorder does not follow a linear path from illness to recovery both for the sufferer and the family. Although Emma has made strides towards recovery since leaving college on October 4th, this does not indicate that she is cured of this disease. We continue to closely follow the plan that her medical team has advised.
Over Emma's lifetime, the way our family views food has undergone an evolution: first being viewed as a pleasure that brought us closer together, then being seen as a threat, and finally being regarded as a healer. Our family's hope is to come full circle during this journey, bringing us back to rock and roll themed weekend brunches, and dinner tables overflowing with meaningful conversation and joy.