This May will mark five years since Norah’s hospitalization for anorexia. As a family we have each grown, changed and healed—each of us have stories and memories. Norah was 11, in May of 2017, when she spent a month hospitalized with a dangerously low heart rate and was given a feeding tube for nutrition.
I asked Norah if she would let me interview her for this piece. I suggested a few options, and when we factored in her busy 16-year-old sophomore year in high school schedule, we settled on a list of questions she could review and then send me the responses via email.
I loved the email idea, because it also gave us both a bit of distance to fully process both our questions and answers. I thought I would start with the last question I asked Norah.
A question about her own privacy.
I have never used a pseudonym in my writings about my rare disease or about her eating disorder. I used both our names in the Washington Post article and in other places I have published. After the Post article, I got some not so kind messages.
‘You have violated her privacy. She is a minor. HOW DARE YOU. She will never get a job. You are a horrible mother.’
Those were the kind comments. Jeff and I have always worked to remove the stigma of my rare disease and her anorexia by being transparent. Our goal for Norah was to be able to say, ‘I had an eating disorder as a child. It doesn’t impact my life today.’ We want her to stand in her truth as a survivor of this deadly illness and to own her recovery and story.
Each time I write an ED piece, I speak with Norah about her right to privacy. I ask Norah, ‘How do you feel about me talking about this?’ We discuss specific stories and details about her path to recovery. Norah’s response is nearly always short and direct.
I know that my story can and has helped people, so I let it be told. You also ask me before you post things if that story is ok to be told. And, I say yes.
As a family, we believe in our bones that full and complete recovery from ED is possible. We see it, we live it, and the joy never fades. If anything, it becomes more beautiful. Our story relies on two other important people. Dr. M is Norah’s primary medical doctor. She was her physician while inpatient at Rady Children’s Medical Behavioral Unit/eating disorder unit. Dr. M has continued to be actively involved in Norah’s care. For years we made regular trips (4 hours one way) for check-ups and support. Once COVID arrived, we were able to stay in touch via telehealth and Dr. M has remained our point person.
Along with Dr. M, we have Andrea. She is our family therapist; and has direct expertise working professionally in all levels of eating disorder treatment. It was through Andrea that we found UCSD and learned about FBT. She worked directly with Dr. M and our family to create the roadmap for Norah’s recovery. For a year and a half, we met twice weekly for intense behavioral health sessions, then weekly for another year plus— this was brutal work and necessary. Therapy remains an important tool for our family.
Both of these women were and are integral to Norah’s recovery.
Honestly, enough of my stalling… You all want to hear from my beauty.
1. This May will mark five years since your hospitalization. Dr. M told us it would be 2-5 years for full recovery from ED. How would you classify where you are today? Are you recovering, in recovery, or remission?
I would say in recovery. I think someday I may use the past tense, “I had anorexia”. But right now I say, “I am in recovery from anorexia”. I definitely don’t think about food and ED as much as I did in the past, it used to take up almost all of my thoughts. I only really think about it when I realize that it has been too long since I last ate and that I need to eat again. But even then, it isn’t really me thinking, “I need to eat because I have an eating disorder.” It’s more “I need to eat now because that is how I can get my body to function optimally.” One time Andrea told me to think of it a bit like Addiction- alcoholics will say that they are a recovering alcoholic because there is no one marker that it is just gone. You don’t wake up one day and just do not have an eating disorder. One day you just realize that you crave a certain food, or that you ate something just because it sounded good, or you didn’t think about the nutrition content of food you just ate it. It is a gradual thing but there are little milestones.
2. How would you say therapy with Andrea has helped your recovery? Many folks don’t find it beneficial, did you?
I genuinely hated that woman for a long time. For a while, I didn’t notice progress, or I didn’t want the progress once I felt it. But if it weren’t for her and you two (mom and dad) being so stubborn I wouldn’t be where I am today. Maybe in the literal sense, but certainly I wouldn’t be the person I am now, I wouldn’t be able to do all the things I do and have accomplished what I have. This is just the case for me, everybody is different, but one-on-one therapy with Andrea was far more helpful for me than the outpatient program with group therapy sessions and lessons on wise mind. But yes, it was entirely beneficial and 100% necessary.
3. Parents without question worry that ED will forever damage their relationship with their child. Did it ruin our relationship?
My relationship with you wasn’t ruined by these events, merely bruised for a little bit (never more than a week). Recovery wasn’t a choice for me, I was forced into it for the first couple of years. It wouldn’t have happened if it weren’t for you being hard on me and for looking like the ‘bad guy’. Let’s run with that analogy for a little bit. There wasn’t that much of me mentally, it was all the eating disorder. The ED is the bad guy, and it took me a while to know that there had to be more of me to know that. The eating disorder will hate everything you try to do against it, but once there is enough of the real you there, you will know that it was for the best. It may take some time though, there are no shortcuts. It can also help to try and compartmentalize the eating disorder and me as two different entities. It makes you feel a bit insane because it doesn’t feel like there is a Jekyll and Hyde in your head, but it can be helpful for some people to think of it that way.
4. Can you speak about ED thoughts? How often do you have them, how do you deal, and do you worry about relapse?
They are not nearly as frequent or intense, but every now and again I will think something about “good foods” and “bad foods” and I realize that the only way to make them go away is to do the opposite of what they tell me to do. “You already had a cookie today, don’t have another one.” Just means that I have to have another one even more. It was pretty recently, in the last year that I could act contrary to these thoughts on my own.
Relapse isn’t something I worry about at all. I have far too many good things in my recovered life that I want and love, and that outweighs anything the ED wants.
5. Can you talk about food? Anything.
I didn’t know what foods I actually liked because I had convinced myself for years that I hated them. I love burgers now. So much. And I never knew that. I enjoy food now. Not all the time, sometimes I just eat because I need to, but other times I genuinely find pleasure in it. I can’t remember a time before now that I could say that.
6. What do you want parents to know?
It takes a while. It’s going to be hard. There is no easy way to go about it. I didn’t want recovery for a long time. So don’t think that they have to want it in order for it to be successful at first. There will be a point where they have to take control and have to want recovery, but there is a long time before that.
I find Norah’s answers fascinating. She has developed her own views of ED, for instance, we never discussed externalizing ED. I don’t recall ever calling ED a terrorist, in her presence, I absolutely have in my writing. Her description of the Jekyll and Hyde of ED is so appropriate. You see glimmers of your child and then they disappear. And yet, Norah’s description, is exactly how I perceived ED moving in her life. Her ability to recognize the need to separate the two, I find remarkable.
For years, I have said, Norah, didn’t chose recovery, I compelled her. In year 2, Norah was sick of having anorexia, it was hindering her desire to have a full life. However, ED wasn’t done with her. Believe your children, when in their hearts they say they truly want recovery. You absolutely can affirm them, still recognizing, they lack the weight, tools and brain healing to get there. Even when Norah got to the point that she could choose recovery (and I think that was more year 3 than 2), she didn’t necessarily have the ability to achieve it without continued help and support.
When Norah says, ‘My relationship with you wasn’t ruined by these events, merely bruised for a little bit (never more than a week)” it was this messy period where she wanted to be done, and ED wasn’t. This included several brutal conversations, where we stepped in and said, No, you won’t be doing x. There was a very long time, of Norah not being able to balance the life she wanted with the requirements of her recovery. We had to bleed compassion and still hold fast to our position.
We lived the horribly messy path to recovery. And yes, it takes more time than you ever want it to. You absolutely will have oodles of moments thinking; we are never getting there. Resist the urge to rush, take that extra month or six, be uncomfortable, take your time…
Because one day you find yourself sitting outside, with the sun shining on your face, and your daughter, will turn to you saying, I’m hungry, can we get a burger from In and Out?
Norah NEVER ate burgers. Even when she was teeny tiny, McDonalds was always chicken nuggets. As she got older, it was the chicken sandwich at every burger place.
Recovery from anorexia, is the exploration of foods your child swore they never liked—there is a joy beyond description to see them move through their recovery with confidence and excitement. Our In and Out cheeseburger would lead Norah to rating every burger place in town on the quality of the burger, milkshake and fries. (Sorry, In and Out, Norah thinks your fries are weak.)
Anytime Norah says, I’m craving whatever meal we have queued up gets shelved. She was starving for years on our watch… I will spend the reminder of my life exploring foods with my beauty…. Because she says it all…
I didn’t know what foods I actually liked because I had convinced myself for years that I hated them. I love burgers now. So much. And I never knew that. I enjoy food now…
I genuinely find pleasure in it. I can’t remember a time before now that I could say that.
I’m grateful for Norah’s candor, truth, and her openness.
I like to tell parents, we are all on the same path, Norah and I are just up the road a bit… We are raising our lantern so you can follow our light.
We are humbled to accompany you, sharing your struggles and joy. Norah and I are also happy to share our thoughts or answer your questions…
Please don’t hesitate to reach out.
Peace be with you,
Xo, Kathryn and Norah