PENFIELD, N.Y. (WROC) — Linda and Jack Mazur hold little back in their book, Emilee – The Story of a Girl and Her Family Hijacked by Anorexia.

They wanted people to know the nightmare their daughter lived through because they want anorexia to be treated like the true illness that it is.

You see in the interview with Adam Chodak below, Linda Mazur says if her daughter had been diagnosed with cancer she would have received a much better level of care.

Emilee died in 2016 at the age of 35.

She had excelled at Penfield High School before she became a pharmacist in the Rochester area.

Those who met her found a warm, independent young woman, but they usually didn’t see what Emilee worked hard to conceal: a disease of the mind that was slowly killing her.

Before we get to the interview, please click here if you feel you need help in this area.

Adam Chodak: You wrote this incredible book where you really didn’t leave anything out. Has it been easier in a way talking to those who have read it because they know the story, now that it’s out there?

Linda Mazur: It’s been interesting. We’re pretty open, but the only way we’re going to make a difference was to be honest when we wrote it. What’s happened is people who have reached out to us because they know we get it, they know we understand, so we’ve had emails and letters from people locally and all over the country who want to share part of their story with us and they know that they won’t judge us and we haven’t lived it as a person having an eating disorder, but when a person has an eating disorder, it affects the whole family and sometimes it’s parents and sometimes it’s people, especially adults who are struggling themselves or have found some level of recovery, but it’s an honor and a privilege to hold that space for somebody. We can’t save anybody, we couldn’t save our own daughter, but we can be the person who could have been there more for Emilee, non-judgmentally and encourage them to keep on the right track and to not give up.

AC: The big takeaway for me from all of this and correct me if I’m wrong, it wasn’t about the food in and of itself, but about control, which was based on anxiety and possibly depression and think that’s what people should hear about this because they might hear anorexia and they think food and losing weight when it’s so much more.

LM: Oh, absolutely. I think anxiety is a huge component to people with all kinds of issues and certainly eating disorders. People can begin with an eating disorder if they get depressed and they get down to a certain weight or somebody who goes on a diet. With brain-based diseases, biology loads the gun, the environment pulls the trigger so it’s just a perfect storm of things so when people sometimes get to a certain weight things happen in their brain that don’t happen to everyone else so it’s very unfortunate, but I do think when we wrote the book and we look back at all the things with Emilee, she was a very normal happy, healthy girl, yes, she had trouble sleeping as a baby and she did have some anxiety issues when she was younger, but like many kids do, but they weren’t huge, really, they were really just normal, but you go back and you kind of look at all those things and you look at everything through a different lens.

Jack Mazur: The pediatrician would say, Oh, she’s fine, it’s just normal. Linda, you work at home so of course she’s going to be attached to you and be anxious when she’s not with you.

LM: But after she got into grammar school, in 1st grade, she just took off and so well-adjusted…

AC: You don’t want to be hyper-vigilant as a parent so what advice would you give so they notice this and get to it sooner…

LM: I would say just trust your instincts and if your child has trouble sleeping with some anxiety, even if a pediatrician says everything is OK I would just tap into some different avenues and get some other opinions and trust your instincts as far as that because anxiety can turn into something so much more.

AC: And can be hidden too…

LM: All the people who suffer with this disease are incredible, compassionate, wonderful human beings, but they’re also very good at hiding their true feelings at times. They’re very empathic for other people and they are people who are selfless sometimes to a fault.

AC: Speaking of selfless, as a parent, I couldn’t imagine how traumatic this must have been for literally years, you were on standby for years, going over, waiting for the calls. How are you doing now?

LM: I wish I was still on call, but there comes a point when somebody is really suffering and you’ve tried everything that’s available and it didn’t work and when enough is enough. But it affected our whole family and our son and those are the kinds of things that I worry about now and putting one foot in front of the other and being able to be there for somebody else and making people aware of the things that need to happen so other people don’t get to that point and people can recover from an eating disorder and that’s why we’re doing it and nothing gives us more satisfaction other than our wonderful son, Matthew, than being able to be there and hold that space for somebody else, that place of encouragement and support and non-judgmental understanding.

AC: And she wanted her story told…

LM: I don’t think we could have done it if she didn’t. We couldn’t share a lot of what was going on along the way. We always said it’s her story, not ours. So eventually family knew most of what was going on and a few friends, but it was her story. It was ours too, but it was hers and we just thought she would get back on track and she did, you know, she did for a time, but she never really got through the eating disorder and that was the powerlessness you feel as a parent is hard to put into words. And it’s so much different when an adult is suffering as opposed to a child. When a child lives at home, you have so much more opportunity and you’re so connected every single day and we were certainly connected with Emilee, but she was also an adult and limited what we could do, that gives me great comfort to know and she knew that she was loved and we were here for her every step of the way.

JM: In the end when we were trying to get her into hospice and I didn’t know this until afterwards when Linda told me, she was lying there in the emergency room and arguing with the doctors and she says, Dad gets it, he really gets it. So, ultimately, before this journey of ours ends, I want people to say, people get it. They really get it. The medical community, the insurance industry, that they get it. That this was just a normal little girl who had everything going for her and there are those normal little girls and boys out there everywhere and any family can have this happen to them so that’s my ultimate goal, you know?

LM: And they need to get it before their body is so broken down. There is such a high rate of suicide. It just needs to be taken so much more seriously when people are first diagnosed, it truly does. This is as serious as a cancer diagnosis and there is so much hope early on if people get the continuity of comprehensive care they need and the supports.

AC: It’s got to be hard, Jack, with parts of the medical community and the health insurance companies because they, as you say, didn’t get it when it came to this. There was must have been a huge relief in the end when you ran into the doctor who said this is Recalcitrant Anorexia Nervosa.

JM: That day in the hospital in the hall with him, I just threw my arms around him and hugged him. Not that I wanted to admit that we were coming to the end and I said to him because Emilee was around the corner, she was in a room, she had been in the ICU from Friday to Sunday and was moved to a floor on Monday and this was Tuesday and I said to him – she was sitting up in bed, she was ordering breakfast and lunch and dinner and eating the majority of those things because she wanted to get out of the hospital – and I said to him, if she could be like this going forward, I’ll take it, but we know when she gets out of here we’re going to be back in the hospital again and, again, I started to cry and threw my arms around him and thanked him for his compassion and ultimately I can’t imagine how I could continue to go on if she had died alone, I can’t. The book has kept her with us. It was something I was hoping she would do, go out and recover, speak and tell her story, but she didn’t and that’s my mission for however long I’m on this earth, to go about and tell the story and increase the awareness. It’s amazing how many people have said they’ve learned so much about anorexia and eating disorders that they never knew. This is not a clinical book, but it is informative and shows how devastating this illness is. I have very vivid memories of my childhood and everything else and I can picture myself in all of these scenes in this book and I think of them every day and I just think about how grateful I was to that doctor to allow me to be with her and at that point, we didn’t know. I still didn’t think it would 2-3 weeks, never entered my mind, but she was in a lot of pain. She went into the palliative care program in her own home. She met with friends, but that was her way of saying goodbye to everybody. She knew her body was broken. And, again, going back to 2010, she knew then how sick she was when she put herself in an eating disorder program the first time, knowing that this was starting to take over and she wasn’t able to work and she wasn’t able to sleep so she wanted to get better. She knew what was coming.

AC: Did she feel like this was the only form of control that she felt like she had?

JM: The whole illness, everyone will tell you, is about control. It’s not about the food. It’s about regulating their emotions. Her whole life she wanted the life her mother had, to grow up, get married, have children, a house in the suburbs, a little dog. I think there were many tipping points in Emilee’s life, disappointments that came along that she didn’t have control of, that she wanted to control, but it was her way of coping. Then when the alcohol came in that was her way of disconnecting from the reality of her illness, her eating disorder, not wanting to deal with it so she would just drink to pass out.

AC: Faith has played a large role…

JM: Oh my gosh yeah. I grew up Catholic and marched to church every Saturday or Sunday and I believe in God and a hereafter and all, but I think when we found Spiritus Christi, it was so welcoming to every person, transgender, gay, everybody, they don’t judge anybody, so when we found that church in 2010 and Father Jim and Reverend Mary and Sister Margie, they were just so supportive of us. Spirituality is what I call it. You don’t have to go into a building and pray to have spirituality and I gained so much spirituality from that, prayed every day to God. Before this even happened to Emilee I said if something happens to this family let it be to me, maybe all fathers will say that so I did the best I could with the knowledge that I had at the time, I trusted the system, as all parents do you, you take your child to the doctor and you think they’re going to get better. I never understood how little education they had about this illness. I’m so grateful that the book is now in a couple colleges with psych and nutrition students to give them a real-life experience in what happens. They get all the clinical stuff, but this is what can really happen to someone when they fall through the cracks.

AC: What else would you like to add that I missed?

JM: This disease touches every socioeconomic level, gender, everything that’s out there and we know that there are so many people out there that don’t even look for help because of the shame and the stigma of disease they’re going through and hoping because of all the contacts we’ve had especially Linda in the last year or so they’re starting to come out of hiding. The COVID pandemic has opened up a lot of virtual meetings and I think that might be easier for these people to come out now as opposed to meeting a person that they don’t know, but they’ll meet them online. There are more and more people saying I’m reading the book, I’m recommending the book and I’m just hoping that it’ll continue to spread the awareness and ultimately get into more classrooms as a real-life experience for people to take away. 1 out of every 52 minutes somebody dies and there’s a family going through what we went through, I just want that to stop.