Linda and John Mazur joined us for an interview on their book, Emílee: The Story of a Girl and Her Family Hijacked by Anorexia. What follows are our questions in italics and their thoughtful and heartfelt responses.
Your book, Emílee: The Story of a Girl and Her Family Hijacked by Anorexia, was published with a mission. Please explain.
In writing our story, we first wanted to honor Emilee’s wish to have her story told to help others. And though it wasn’t easy to tell the whole story, we soon realized we had no choice. We didn’t want another parent to lose a child, and we felt that anything we could do to prevent that tragic end, honored Emilee, her memory, and her battle. It soon became our mission and our passion. The systems we learned to trust failed our daughter and failed us. There are many things we learned along the way, many too late to benefit Emilee. We felt a duty to bring these obstacles to light. We realized our family story, told honestly, would have the potential to educate readers about anorexia, its comorbidities, and all that patients and families go through, but don’t openly talk about, for a multitude of reasons. Through the power of narrative, we felt we could reach a vast number of people and perhaps evoke compassion, awareness, change, and maybe even save a life.
Can you please capture Emílee’s spirit before and during her fight with Anorexia Nervosa?
Emilee was an extremely compassionate soul. She was bright, athletic, and kind. Her energy and her smile lit up the room. People loved to be around her. She was musically talented and enjoyed playing the violin and playing soccer. Emilee was quick to lend a hand and help a friend. She won The Citizenship Award in eighth-grade and The Woman’s Leadership Scholarship to attend Wells College. Emilee was the friend others turned to for support and advice. There was no moss growing under Emilee’s feet, she was always on the go, doing things with friends and family at every opportunity. Emilee was neat and organized. She especially loved her family, children, animals, Christmas, and family reunions. When Emilee began to suffer from anorexia, she smiled less, had less vim and vigor, and began to spend more time alone. As the disease progressed, we saw less and less of the vibrant young woman Emilee had always had been. Emilee didn’t have the energy or the desire to socialize, and eventually, it became a chore for her to do the littlest things. She became a shadow of her former self, literally and figuratively. The more time that passed, the sicker Emilee became. She was losing her passion for the life she loved so much.
There’s a fascinating detail you include. You and Emílee visit Sanibel Island in Florida. After giving Emílee a Sanibel jacket you bought for her, she says, “You always know just what I need.” Why did you choose this quote?
This took place early in the illness, and Emilee was working hard to get well. Emilee prided herself on being independent, but she came to the realization that she needed extra support and asked to come back home. Jack and I were thrilled to have her home and eager to support her efforts. As the weeks turned into months, we could see that Emilee was recharging. She was smiling, socializing, and she had gained weight. Our trip to Sanibel was her gift to me, and I wanted to give her a remembrance gift of our time together. It was sunny and warm when we began biking, but an hour into our ride it started to rain. Emilee was dumbfounded when I reached into my purse and pulled out the jacket I’d secretly purchased for her that morning. Emilee’s eyes lit up when she said, “You always know just what I need.” The jacket was merely a token of my appreciation, yet there are times when someone says something to you, and the truth of their words strikes a chord. A flood of memories flashed through my mind. I remembered when Emilee was a baby and had trouble sleeping, and when she had ear infections, when she grew older and asked for my advice about friends, and for counsel when there were disappointments in her life. I understood that a calm, reassuring voice always helped Emilee to settle down and helped her find her way. I couldn’t always fix things, but she wasn’t afraid to ask for my opinion. As mothers, we know our children well, sometimes better than they know themselves. This maxim holds true, even when they are grown, and even more so when they suffer from a brain disease. At that time, I was confident Emilee was going to be okay. However, as the years passed, anorexia slowly hijacked that extraordinary brain, and her bubbly personality. I knew what Emilee needed, but she no longer trusted me because her hijacked brain wouldn’t let her.
What helped with your decision to share Emílee’s writings with your readers?
In 2009, Emilee said she was going to write a book. She began writing about her healing journey, sought professional help, and began rebuilding her life. We wish she would have recovered and finished that book. But that didn’t happen. If we were going to honor Emilee’s wish to have her story told, and write a book, Emilee’s writing had to be included. Her voice needed to be heard. She was the gifted writer in the family. Unfortunately, when her anorexia became severe and enduring, she was unable to continue writing. After Emilee passed, we went through boxes and boxes of crafts and writings we’d saved from the time she was little. Some of the poems we found, from Emilee’s fourth-grade poetry book, took on a whole different meaning as we read them, and her words shed new light on the fact that she felt things, from an early age, that she didn’t share with us. The inferences are subtle. We didn’t think anything of them at the time, but looking back, they speak volumes. We needed people to know who Emilee was before she got sick. Telling our story from the beginning and sharing Emilee’s writing was the best way to do that.
Having this tragic lived experience, who do you suggest others go to for support in a similar situation?
That is a difficult question because the resources in every community differ. Eating disorders are often recognized early in adolescents, and that is ideal so that treatment can begin early in the disease. There are fewer resources available for adults who have eating disorders, and adults tend to harbor even more shame and stigma for having an eating disorder making them more reluctant to reach out for help. We would strongly suggest people search out practitioners that specialize in eating disorders. Unfortunately, even in this age of specialization, they are hard to find. Most physicians, therapists, counselors, social workers, and dieticians receive very little training about anorexia and other eating disorders. It takes a collaborative team of healthcare professionals that understand eating disorders and the kind of support their patients and families need. When people feel alone in their suffering and frustration, they will also benefit by reaching out to others who have lived eating disorder experience or have experience supporting someone with an eating disorder. Individuals can either find support groups within their own community or through online support or take advantage of both. Counseling, validation, and social connection are essential to begin healing, foster growth, and help discover new ways to support one another.
Can you share a “take-away” for your readers?
Trust your instincts when something doesn’t feel right. Don’t accept it when a physician tells you that your child or a family member doesn’t have an eating disorder, or they aren’t sick enough yet to meet the criteria for having an eating disorder. Don’t accept it when you sense something is wrong with your loved one, and they deny it. Children and adults with eating disorders are masterful at hiding their behaviors until they no longer can. By the time you notice something is wrong, the person has been struggling for quite a while. The sooner an individual begins getting help, the more likely they are to find recovery.
What can you tell us about your involvement with WNYCCCED?
The director of the board, Dr. Mary Tantillo, visited us after Emilee passed. She was compassionate and understood that we wanted to try and make a difference, to honor Emilee’s life, and help others. She invited us to join the community advisory board for The Western New York Comprehensive Care Center for Eating Disorders. We advocate with the board for funding in Rochester, New York, and in Albany, New York. We are active members because of the excellent services they provide for individuals who suffer from eating disorders, as well as for their families. WNYCCCED serves 30 counties in Western New York and provides services not covered by insurance at no charge to the recipient. These services include parent peer mentoring, care management, young adult peer mentoring, life coaching, and they also provide education about eating disorders for medical professionals, schools, and colleges with project ECHO-a web-based video conferencing technology. At the time Emilee would have benefitted from some of these services, there were drastic budget cuts in New York State, and the WNYCCCED funding was cut by ninety percent. We hope the services WNYCCCED provides will continue to expand and help patients and their families stay on their healing paths. We will continue to advocate collectively and individually to stop the stigma surrounding eating disorders and begin the conversations that need to happen to enhance awareness, evoke compassion, social connection, and highlight the need for research and increased education for medical professionals.