I am about to share with you the most difficult things I have ever talked about. Secrets I have held for 30 years.
These are things I have never admitted to myself, let alone to anyone else, until very recently.
Just by speaking of these things, the power they held over me already greatly diminished. By way of healing I have made the decision to no longer hide behind these secrets, and am hoping that by sharing my own personal story and related music, perhaps in some way, it may encourage others who are struggling with similar issues to speak as well.
Some of you may know about my struggles to heal from Crohn’s disease, and my success in overcoming its challenges through natural means, sans medications. But unfortunately, 2.5 years ago, while defeating one ailment, another monster of a disease was reawakened. An insidious illness much scarier, deadlier, and far more devastating. Anorexia Nervosa.
On February of 2020 I was diagnosed with severe Crohn’s disease. Although I was aware that something was not right with my body, the diagnosis had really shocked me. I’d been told by a host of gastroenterologists that I must take immune suppressing drugs in order to control it. I was bound to a recliner, and was hardly able to walk to the bathroom for months. I was so overcome by fear, that I had lost my appetite entirely, and was nauseous quite often. I began to rapidly lose weight.
Contradictory to the forecast of the doctors, after a lot of hard work, and a fundamental change in lifestyle, I did get into remission naturally, and all the symptoms of the disease had completely disappeared. I was, for all intents and purposes, Crohn’s- free. There was nothing, medically speaking, that was preventing me from regaining my weight back to a healthy range.
But instead of getting better, as time went by, I continued losing weight. And it wasn’t accidental. It was because I wanted to lose the weight, and I intentionally restricted and severely reduced my food intake. I consistently ate less and less.
I hid what I was doing from everyone, and it was not difficult to do as I had the perfect “cover” of my Crohn’s disease. No one had suspected that the on-going weight loss was from anything else. Which was partly true. Pain had prevented me from eating much. But more importantly, although this behavior was not new to me I never thought, or more precisely actually admitted to myself, that something was very wrong.
It first began when I was 15. I remember going for days without eating anything, only to have a few wafers and a cup of coffee at night. And then it came back at 18. And then at… And then… And then… Again. And Again. And over again. All. My. Life.
I’d restrict calories for weeks on end; months. And it was always coined with some fad diet and a regimented exercise routine, which in turn explained the weight loss. Then it would quietly run its course and, eventually, resolve on its own. I’d bounce back to my normal range, and it was as if nothing ever happened. That is, until the next time.
And so the vicious cycle continued throughout my entire life.
But never had it gotten so extreme, and so severe, and so damn, excruciatingly long, as this time around. Because this time around, I never bounced back. This time around the restriction and starvation had been going on consistently and without a break, not weeks or months, but sadly, for years. And this time around, things went too far. This time around, the disease’s vise on my throat was, literally, a death grip.
I would soon find myself standing on the brink of death.
In August 2021 I was down 45 lbs. My period stopped. I’d chew my food and spit it out. My intake was so meager, and my vision would go black every time I stood up. I would weigh myself obsessively, during all times of the day. I’d stumble to the bathroom in the middle of the night, half asleep, take my clothes off and step on the scale. In this demonic world, you live and die by the numbers. I couldn’t stop.
My body was consuming its own muscles, yet I continued my rigid exercise routines. I couldn’t climb the stairs leading from our basement to the top floor of our house without feeling fatigued, and always with the assistance of the railing. I was having a hard time washing my hands, lifting a cup of tea was an effort. Shopping at Home Depot with my family felt like climbing Mount Everest. I had no energy. I’d lie down on my recliner- a fossil from my Crohn’s days- like a rag doll, staring into space. A living corpse.
I told myself that I was in complete control of it. That I could stop anytime I wanted. Tomorrow, I’d promise myself, I’ll let it go. Tomorrow I’ll get back on track, I’ll let myself have that beautiful dinner with Ron and the kids, I’d let this monster go. I’ll claim my freedom.
Then tomorrow would come, and that echo in my head, a voice of the most devious of demons, would drown out everything else. If I could just push the boundaries, just a little more again today, I’d tell myself, If I could just shave off a little more weight, burn a few extra calories, if I could skip a meal or two…I’ll just “if I could”… one more time, and then I’ll stop. Next week, Next month. Next year. Next life.
Freedom never came.
I kept on losing weight. I was starving to death, literally. I would lay awake for hours, my muscles throbbing with pain, my entire body aching, and an agonizing, gnawing hunger in the pit of my stomach. The nights would wear on painfully slow, and the days were long and grueling. I knew that it was slowly killing me. But I couldn’t stop.
It was all I could think of. I had tunnel vision. Nothing else mattered anymore. I was deeply lost in the dark and lonely ambages of this eating disorder’s labyrinth, from which I could find no exit. I couldn’t hear the birds singing in our yard. I couldn’t see the colors of the trees. I couldn’t feel the wind on my face. I couldn’t hear the kids’ laughter. It had taken over my existence, it had taken over my body and my soul. And I lost myself completely to this disease.
On February 2022, after 2 years of starvation, I hit rock bottom. I was down to 96 lbs. My BMI was 15.04. I felt at that point that one morning I would simply not wake up.
I had to ask for help. It was time.
Nefrit El-Or had always taken on giants on her own. I dealt with everything with tenacity of purpose, facing my difficulties head-on, and never quit even when things were difficult. But this time, I knew, it was different. This time I couldn’t do it on my own. It would be like attempting to overcome a heroine addiction alone, at home.
I was ashamed. Embarrassed. I had no right to complain, after all, I was doing this to myself, and at my age? It was my fault. I didn’t need help. I didn’t deserve help. But I knew that if I wouldn’t reach out, I may not live to see another day.
So I did. I finally asked for help.
To borrow a quote from Peter Pan: “and with a fine candour I told what I had hitherto concealed.”
At that time, I was Zoom meeting with a remarkable therapist from Israel, Keren Kotzer, who specializes in Crohn’s and Colitis. I partly owe my recovery from Crohn’s to her. She has been an invaluable asset in my life, and I am extremely fortunate and grateful to have met her, and to have her in my corner.
For the first time in 30 years, I spoke up. I told Keren exactly what was going on. I told her that I thought I may have a problem. And that problem, she told me, was Anorexia.
It took me a long time to process this. Part of me felt like it was something that belonged to other people, some waif-like teens that survive on an apple a day. There was a part of me that never connected the dots; I never really thought I had a problem. Definitely not an eating disorder, not Anorexia.
I kept referring to it, in my conversations with Keren, as ‘the eating issue’. And besides, I didn’t have a problem, I was in control, I could stop it any time I wanted. But if I could have, I knew deep inside, I would have.
There was a slight voice, the smaller part of me, the rational, sensible bit, that wanted to live. That part of me wanted freedom, wanted release from this torture. But there was something else running the show, and as crazy as it may sound, I didn’t want to let it go.
The first Ed therapist I’d work with later on called Ron and I on the evening after our second meeting. She had extensive clinical experience working in the Ed field for 12 years, 5 of which were spent in one of the most renowned inpatient centers for eating disorders in the United States. She was extremely disinclined to work with me due to the severity of my circumstances. “Do you believe me when I tell you,” she told us that evening on the phone, “that you are one of the sickest people I have ever met?”
Several other providers whom I would begin to see soon thereafter would echo this statement. I couldn’t understand why. I knew that I was sick, but, from within the fog of the disease clouding up my perception, I did not think that things were that severe. They were merely blowing it out of proportion, I thought. Sometimes I would even think that they were simply joking. Is it really that bad? I’d ask Ron later, with much disbelief.
One of the benchmarks for being diagnosed with Anorexia, the therapist told us that evening on the phone, is that one has to be under 85% body fat. Mine was 71%.
What happened at 15 that prompted it to start? Keren asked. I shrugged my shoulders. That week I was woken by a dream that had my heart pounding, and left my throat dry. It was a dream about an assault. As I lay awake with my throat dry and my adrenaline pumping, I was flushed by memories of an assault that I had experienced when I was a child.
The memories from the incident were there my entire life. It wasn’t a sudden revelation. It’s just that I had never let myself fully remember, not really. I never let myself think them, so to speak. They’d flicker, on and off, from time to time, like a faulty lightbulb, and I’d quickly suppress them back down. As easy as flicking off the light switch. Click. Now, they are gone again. And I don’t have to feel them. But of course, nothing is ever gone. Stifling them only created other monsters, ticking time bombs. I call them, silenced memories, because they are not gone, they are simply… stilled.
I stayed with that for a while. But I knew that it was time to let that go as well.
When Anwen has a bandaid she needs taken off, she comes to me, because “you know how to take it off quickly, and it hurts less”.
One day, I mounted the courage, and I told Keren everything. I talked about the details. And I walked through the memories, whatever I could remember, one by one.
It took place in my tree house. It was a 17 year old boy whom I knew briefly. I was 12. It was like ripping off a band aid, but not the Anwen way, the painful, slow way.
But then, it was out there. I said it. It wasn’t a dark secret anymore for me alone to carry. There was someone else helping me carry the load.
Telling Ron was what I had to do next. One Saturday morning, while the kids were engaged in playing Super Mario Brothers, I came clean. I took another step forward.
We needed to seek help.
I made an appointment with my OB, who at the time acted as my PCP, was by my side throughout my Crohn’s healing journey, and whom I trusted and held in very high regards. I had asked in advance to afford me a little extra time on that day.
I dreaded the appointment. I was extremely nervous, I felt frightfully ashamed, and I feared her reaction. In my mind she was going to rebuke me harshly for my irresponsible behavior; “At your age?” she’d say, “You should be embarrassed,” she’d say, “You have two kids, and you behave like a child,” she’d say.
Once more, I plucked up the courage. I braced myself for a blow. And I walked into her office. But there was no upbraiding. There was no shaming. I was overcome by a profound sense of relief when, instead, she embraced me lovingly and told me how proud she was of me to have made the brave step to ask for help. “Thank God you came to me now, when you did,” she said.
She pulled Ron in, and made it very clear to us both that at the BMI I was in, with the effects of long term malnourishment I suffered from, that it was a life threatening situation, and she impressed upon us that we could not wait, and actions had to be taken immediately.
“You need to find help, not now, yesterday,” she said. She talked about admittance to an inpatient program, and of the necessity of a 24 hour supervision. She said I would not be able to control it on my own. That I would need to be in a hospital.
Needless to say this was a reality check for us both. Because of challenges posed by my Crohn’s disease that prevented me from going into a center, we began looking into help in an outpatient setting.
The treatment of an eating disorder is usually made by a team comprised of a dietitian, therapists, an overseeing physician and a psychiatrist all with whom you would meet on a weekly basis. With a sense of urgency a flurry of phone calls were made as we sought the proper help.
At the same time, Dr Beckerman began running tests to see where I was medically.
At that point I hadn’t had my menstrual cycle for almost a year. Which meant my body wasn’t producing estrogen. Which, in turn meant it wasn’t absorbing calcium. My DEXA scan indicated that at the age of 43, I was already losing bone density, a condition called osteopenia. I also have bradycardia- a lower than normal heart rate- which in reality means that I am at a greater risk for my body to simply die in my sleep. And then there was the looming possibility of a sudden death syndrome. My body was exhausted, depleted, and my organs were shutting down from 2.5 years of acute starvation.
All of these were conditions and risks brought on by anorexia.
Most professionals saw me as too much of a risk to treat in an outpatient situation, and refused to see me. We finally managed to put together a team of specialists who very reluctantly agreed to work with us on the stipulation that I keep all appointments with the team members on a weekly basis, and that the overseeing doctor would run weekly blood tests and blind weigh me. It was also contingent upon gaining weight, reducing exercise, and following the meal plan that was provided by the dietitians.
Deeming my condition too risky for an outpatient setting, they finally fired me, with a referral to Denver Acute, a hospital for eating disorders in Denver, Colorado.
I am currently under the care of a new team as I am attempting, not unlike a toddler making first steps in life, my first steps on the road to recovery. It is the attempt of a starved body to learn how to eat again, it’s the attempt of a lost soul to rediscover the will to live, and the search for freedom. It’s fighting over my life.
Life is too important to pass on for something so seemingly insignificant and meaningless as the next bite of food. But anorexia, contrary to what many people think, has nothing to do with food. For the constant occupation with food, in and of itself, is but a symptom.
Anorexia is the clamant need for control and perfectionism. It is a persistent and powerful physiological and psychological, self-destructive addiction. It is the devils Unworthy and Undeserving relentlessly plaguing the soul. It is self punishment. It is the haunting of ghosts of the past. It is a monster of a disease; a nauseating, cloying miasma. A nefarious, insatiable, malignant illness of the highest caliber. A special kind of evil. It is death.
Recovery is elusive for me. It is like fleeting glimpses I catch once in a while of a rainbow in a spray of water from a garden hose. It is trying to capture grains of sand draining between my fingers. It is evanescent, a thin gossamer of a spider web riding the winds.
But I spoke up. I told my story. And though I am merely at the onset of it, I took the road less traveled. And that has made all the difference. For the first time in my life, I broke the first rule of Anorexia: “Rule #1. Don’t tell”. As small as it may be yet, I broke a hole through my walls. And one day, maybe, just maybe, I may even be able to say, that I broke free.
“Two roads diverged in a wood, and I-
I took the one less traveled by;
And that has made all the difference!”