Q: How did you come to co-write a memoir with your daughter, Elena, about her eating disorder?
A: Elena had asked me every now and then for several years to help her write a memoir, but I hadn’t wanted to do it. I didn’t feel that memoirs are my genre, and I felt that this was her story to tell. But in 2009, Elena went through a very serious crisis with her anorexia nervosa. She was in a treatment center for months, and she was fuzzed out on a lot of medications. I felt as if I couldn’t recognize my daughter anymore, so I offered to help her write the memoir if she still wanted my help. It seemed like our only chance to reconnect.
Q: What was the experience of co-writing this brutally honest book with your daughter like?
A: It was heartbreaking and gut-wrenching, but it was also absolutely amazing. The very first thing Elena said was “Ask me anything.” Her courage just astounded me; she answered every question I asked, and she never hedged or tried to make herself seem better. She’s the reason ELENA VANISHING is brutally honest.
Q: Your memoir, Hope and Other Luxuries, shares a perspective often overlooked in eating disorder literature—that of the parent. Why do you think this makes it all the more important?
A: I think it’s important because of how blindsided we parents can feel by these disorders. I think that young people like Elena expect that they might have some problems on their journey toward adulthood. Their generation is much more open about seeking therapy or hospitalization for mental illness than mine was. But somehow, I don’t think that we parents expect this sort of thing to happen to our children. At least, I didn’t expect it. When I thought about this kind of thing at all, I thought that dysfunctional teens come from dysfunctional families. Since my family was happy and high-achieving, I didn’t worry about it for a second. But eating disorders and mental illness are everywhere. They can show up in any kind of family. I hope my book helps other parents realize that.
Q: When did you notice a change in Elena? Were there clear warning signs?
A: The change was instant. One week, Elena was goofy and chatty, just a typical young adolescent. The next, she was silent, glaring, and furious. She couldn’t eat, and she couldn’t sleep. She was one raw nerve. We couldn’t get her to tell us what had happened, so we hoped for a few weeks that it was something that would just work itself out. It didn’t, and soon Valerie was showing signs of stress as well. Her sister had been a dear friend, but now Elena was a bitter stranger. Valerie didn’t know what she had done wrong. At that point, we took Elena to a child psychiatrist who was known for his work with adolescents and also with eating disorders. But somehow, he just missed it. He told us Elena was fine.
Q: In addition to suffering alongside your daughter as she was withering away, you, as a parent, had to remain composed to deal with the many professionals involved with your daughter’s care from doctors and specialists to healthcare workers. How did you manage? What are some of the biggest lessons you learned from these, likely, daunting encounters?
A: One of the big takeaways I have from that time is to find out something about a professional before working with him or her. The best, most productive experiences we had were with professionals who came highly recommended. That seems obvious, but it can be hard to put in the work to find out about a professional’s reputation. I think I tended to trust back then that the white coat would automatically mean a certain level of care, but this is too important and complicated a problem to trust to a mediocre health care provider.
The other big takeaway I have is that, daunting or not, these professionals do hold the key to recovery. Time alone isn’t going to solve the problem. Serious eating disorders need professional help. If the first doctor or therapist doesn’t click with you or your child, keep researching and try another one. You need a good care team to get you through this.
Q: From the perspective of a parent and caretaker, do you think the medical community (healthcare companies included) has a handle on this disease? Based on your experience, what are they failing to do to treat and protect patients suffering from eating disorders?
A: Elena’s journey took a lot of twists and turns, and we had some rough experiences with medical professionals along the way, but she’s alive today because of the medical community. That makes it hard for me to feel anything but gratitude. Still, anorexia nervosa seems to be far more complicated than the medical professionals anticipated it would be when the number of its victims first started rising. We watched Elena’s treatment change several times as the prevailing theories changed. Success still seems to be a moving target.
The most serious failure I see here isn’t the fault of the healthcare providers or the insurance companies. It’s a broader problem than that. Anorexia nervosa is not getting sufficient research dollars to find solutions for the victims who need them. We all need to work to change that. We need to make this a priority.
The National Association of Anorexia Nervosa and Associated Disorders (ANAD) reports that anorexia is the third most common illness among adolescents. It kills young women 12 times more often than all the other causes of death for that age group combined. It is well known to be the deadliest mental disorder, twice as deadly as schizophrenia and four times more deadly than major depression. Nevertheless, according to the numbers reported by the National Institutes of Health, anorexia research will receive fewer funding dollars this year than the great majority of other illnesses on their list. It will receive only 1 dollar, for instance, for every 36 dollars spent on depression research. It will receive 1 dollar for every 23 dollars spent on schizophrenia studies. Even psoriasis research will be better funded. That’s not to say that these other diseases don’t matter. They do. But anorexia nervosa is a killer, and it is killing our children at a terrifying rate. (http://report.nih.gov/categorical_spending.aspx)
Q: Some sobering statistics that you’re familiar with about eating disorders include: 1/3 of those who’ve suffered won’t ever recover, 1/3 will relapse, and 1/3 will be fine. The relapse rate is 65%. How do these numbers effect you as a parent?
A: According to the New York Times, the statistics for anorexia are even more sobering than that: 1/3 will recover, 1/3 will remain chronically ill—and the other 1/3 will die. It all makes me feel pretty desperate. I want to grab strangers by the collar and shake them and say, “This isn’t just about silly little girls going on a diet. This is about shock, trauma, life, and death. Could you eat if violent memories and emotions were tearing you apart? Could you enjoy a nice snack if you were walking through a mine field?”
Q: What do you hope readers will take away from Hope and Other Luxuries?
A: I hope our books make anorexia nervosa feel real to readers. I think that the reality of this disease still eludes the majority of people. It certainly eluded me. Before Elena was diagnosed, I thought I understood what anorexia was about, but I’m ashamed to admit that I didn’t feel much sympathy. To me, it seemed like a diet gone wrong, just a few high-strung school children indulging in a first-world problem. And I don’t think my former attitude is unusual, either. There’s an emotional disconnect about eating disorders in our society. There’s a feeling that it’s “somebody else’s problem.”
It’s this thought that got me through the pain of writing the memoirs. I know that people know about anorexia nervosa. Now I want to make them feel. I want to take away that emotional distance and put them inside Elena’s head, or inside mine. I want to make readers cry.
Q: Your memoir Elena Vanishing, is a memoir that you co-wrote with your mother, Clare B.
Dunkle, about your struggles with a life-threatening eating disorder. What makes your book
different from other books on this topic out there already?
A: The motivation behind writing this memoir for both my mother and me was to bring the journey of the recovery process to the forefront. Many of the books on eating disorders that I sought out while in the worst stages of anorexia seemed either to glorify the eating disorder or to gloss over the actual stages of recovery. I wanted to bring to life the gritty, gut-wrenching side of anorexia and show the readers how long and painful the process can be. It is not as simple as deciding to start eating again. Many cases of eating disorders stem from trauma, and there is a lot of work involved in overcoming the self-hatred and loathing before progress can be made. The disorder is dangerous both mentally and physically, and through the book, we strive to show how long it takes to recalibrate the mental side before the physical side can be bettered. Recovery from anorexia is a life-long battle, much like alcoholism and drug addiction. Our book is different in that it shows both the initial fall into the disorder as well as the long uphill climb to try to reach a healthy mindset and body.
Q: Was it difficult co-writing this book with your mother? Why or why not?
A: Yes, the book was difficult to write. Anorexia is a disorder that thrives on secrets and manipulation. When we set out to write the book together, we had to strip away the lies and deceit, and that caused many moments of pain and betrayal for both of us. The hardest part of the writing process was that when we started the book, I was still very deep in my disorder. There were times when my mother was sure that the book would only have one ending: my death. There were times when writing the book made both of us feel very hopeless and vulnerable. But as we continued to write the book, we began to treat it almost like a form of family therapy. My sister and father were involved in the book as well, and as hard as the entire process was, it allowed us to be completely open and honest with one another. We were able to analyze and revisit incredibly painful moments, but also the beautiful moments as well.
Q: Elena Vanishing targets the Young Adult audience. Why is this so important to you?
A: I was blessed with a very open and communicative family, but even for me, being in my disorder as a young teen was incredibly lonely. I sought out books on eating disorders, not to get answers, but to see other people out there asking the same questions I was asking myself. It was a powerful source of motivation to know that I was not the only one on this planet completely overwhelmed and consumed by a mental illness.
Anorexia and sexual assault are prevalent in young teens, both boys and girls. That feeling of confusion before the diagnosis of an eating disorder, as well as the terror of knowing that your mind is somehow different and warped compared to the average population, are things I will never forget. I hope that those adolescents out there who are struggling with the aftermath of rape or who are making their own personal journey with an eating disorder can turn to my book and find solace in the knowledge that they are not alone. I do not have many answers to give, but I am asking the same questions that many of them are asking themselves as they struggle through their isolating and terrifying illness. I hope seeing those same thoughts and behaviors on paper will give them comfort.
Q: You are now in recovery and say that you will be for the rest of your life. How does recovery from anorexia differ from other illnesses, such as alcoholism?
A: Recovery from anorexia is a unique process because it involves so much work on the mental side before the physical side can be properly helped. And the processes involved in that recovery are different from other types of addiction. With alcoholism, the recovery process is built around removing something toxic from one's life while building a core support group. With anorexia, the process is built around simultaneously bringing something into one's life that one deems very negative and toxic while also removing things from one's mental process. It can be very hard to work to overcome trauma when the coping mechanism is restriction of food. During recovery, the anorexic must learn how to work on trauma while radically changing that coping mechanism.
Having to face food multiple times a day is extremely challenging for the recovering anorexic. Unlike treatment for alcohol or drug abuse, there can be no avoidance of the “toxic substance” because the substance in not actually toxic—it’s food, necessary for a healthy body. But facing food like that after having demonized it for so long is terrifying. The frustration and overwhelming terror in the early recovery stages are brutal. It takes many slips and falls before the process gets any easier.
Q: Years of starvation and other self-destructive behaviors led to serious, irreversible damage to your body. Can you speak to this?
A: My body has taken a severe beating from my abuse over the years. I still have to deal with severe osteoporosis and have broken bones, including my hip, because of it. I have fertility issues because of the many years of restricting, and my husband and I still do not know if my body will ever be able to support a full-term pregnancy. I have damaged nasal passages and taste buds, enamel corrosion, a damaged esophageal sphincter, and gastroesophageal reflux disease from purging. I have neurological problems that have affected my long-term memory. My digestive tract has many problems with proper digestion, and I have to battle bloating, cramps and constipation continually.
The most frustrating part of the recovery process was realizing how much damage I have done to my body that will never be able to repair itself—damage that causes pain and prevents me from living completely normally. It is another reason why anorexia is not something that disappears completely once progress is made. The effects are there. The human body cannot recover fully after years of improper nutrition and purging. It is a constant reminder of how dangerous and deadly this disease can be.
Q: What do you want readers to take away from Elena Vanishing?
A: I hope that readers come away from Elena Vanishing with a deeper understanding of how devastating an eating disorder truly is. Each time this book is read, I hope it erases the stigma of anorexia being a superficial, temporary disorder of vain, vapid model-wannabes. I hope that readers can find comfort, understanding and strength from reading my journey and come away with a greater feeling of empathy and respect others, and even for themselves.
Sexual assault and anorexia do not just affect one individual. They are like atom bombs. They hit, and entire families crumble. The process of reclaiming one’s life afterwards is painful. It takes years, and it may never go back to the way it was. I am still in the process of rebuilding mine. If just one reader can see himself or herself in my story and feel less alone and confused, then the whole journey that led me to write this book will have been worth it.
Author of Hope and Other Luxuries
and Co-Author of Elena Vanishing
Elena Vanishing: A Memoir and Hope and Other Luxuries...
function together as a duology to create a complete and realistic picture of anorexia nervosa in one young woman’s life with her mother looking on. Clare B. Dunkle describes anorexia nervosa, her daughter's eating disorder/mental illness, as “a complicated ecosystem made up of nervous tics, odd compulsions, biochemical changes, neurological adjustments, obsessive anxieties, attitude issues, comfort mechanisms, and unconscious reactions.”
Hope and Other Luxuries acts, in many ways, as a commentary, relaying to readers a more objective view to the extremely subjective events and mentality of Elena Vanishing (being 2nd person to Elena, who maintains the clear focus of both novels). The unique duology perspective is educational to all readers, obtaining an acute sense of audience, designed to be received as a whole (Elena Vanishing with commentary) or the parts of the whole (either read separately from the other), taking into account who exactly the reader may be in reference to the disorder or related disorders. Know thy self. Know who you are in reference to the concepts presented.
The concepts presented in Elena Vanishing are universal. Elena’s narration and externalization of internal conflict will be comparable in concept if not in actuality. She struggles with control over her life, anxiety of confronting the true root of her anguish (even to the point of stubborn rejection of logical thought processing), and finally acceptance of psychology 101 rule number one: bottled up or ignored mental illnesses do not go away, they only build up, fermenting into deeper issues.
Anorexia is the deadliest mental illness, killing 1/3 of those suffering from it according to the New York Times. Of the remaining third, half continue to relapse through out their life due partially to deprioritized research on treatment, despite the high death rates.
Hope and Other Luxuries: a Mother's Life and a Daughter's Anorexia
By Clare B. Dunkle
Chronicle Books LLC, (2015) $25.00
Genre: Biography-Anorexia nervosa-Treatment-Mothers
Elena Vanishing: A Memoir
By Elena Dunkle
and Clare B. Dunkle
Chronicle Books LLC, (2015) $17.99
Age: Young Adult
Genre: Biography-Patients-Anorexia nervosa
Elena and Clare B. Dunkle
Co-Author of Elena Vanishing