If you read Hungry, an essay I wrote two years ago, you know that watching my son battle an eating disorder has been the worst possible karma. If you haven’t read it, please give it a read or even just a skim now – so you can understand the magnitude of what I’m about to write… My son, Joshua, is doing better. (Knock on wood. Kinnehora. And every other incantation meant to keep away the evil eye.) He’s far from perfect, but he’s better. He’s only the in fourth percentile for weight, but he’s on the chart – for the first time in years, perhaps even for the first time since he was a chubby cheeked infant, the biggest of all my babies at a whopping eight and a half pounds. (I’m barely five feet and weighed one hundred and twenty-four pounds nine months pregnant – with the biggest belly you’ve ever seen – so eight and a half pounds was quite whopping.) I nearly cried when the pediatrician showed me the little dot that marked his weight on a curved line – an actual curved line, not below. He still needs to gain a good twenty pounds, but his life is no longer in imminent danger and the eating disorder clinic no longer wants to send him off to Wisconsin, to an in-patient clinic better equipped to deal with the severity of his illness.
Joshua’s journey toward a healthier weight began with a trip to the asthma doctor this past spring. Joshua’s breathing was labored and he suffered from chest pain. I was worried that his early childhood asthma returned. Only, the doctor said his small airways (the area affected by asthma) were perfect – it was his large airway, the sturdy muscles needed to push air in and out, keeping his body oxygenated, that was woefully inadequate. At fourteen years old, he had the lung capacity of an old man.
The doctor put his hand on Joshua’s chest and pushed. “I can push right through. There’s no resistance, no muscle,” he told me, concern lacing his voice. Joshua’s body was using his muscles for fuel, because he wasn’t giving it what it needed through food. The body is very smart; it will do what it needs to do to survive. But, it can only use itself for so long, before there’s nothing left. And that was the grim possibility we were looking at. It was terrifying.
Dr. Bruce Edwards is Joshua’s asthma doctor (and mine, as well) and I’m naming him, because I have no doubt that he saved Joshua’s life. He was the first doctor to say, “He needs help. He has an eating disorder and he needs treatment right away.” Over the years, there had been some concern – translating to weight checks and bottles of Boost (which Joshua would drink inconsistently) – but no true alarm. And since no doctor seemed overly concerned (I was told years ago by one that obese children are far more worrisome than too skinny children), I thought that Joshua’s fear of going to an eating disorder clinic was more important than getting him help. But I was wrong. And I finally realized it.
I made an appointment that day with the Eating Disorder Treatment Collaborative (EDTC). The first psychologist and nutritionist we saw at EDTC told us that they would give Joshua five weeks to show improvement (for that I was extremely grateful), but if he didn’t gain at least a little weight in that time frame, it would be dangerous to keep him in an outpatient setting. They recommended sending him to Wisconsin for treatment at a clinic specializing in treating boys with eating disorders. I was also told that if he was dizzy at all or had a racing pulse, we should take him to the hospital. That’s how dire his situation was. Joshua did not want to spend his summer in Wisconsin, so he vowed to get better in the outpatient program.
He reached out to our friend, and favorite cheerleader, Rangers sportscaster, John Giannone. John told him that if the Rangers could come back from seemingly hopeless situations, he could beat this thing, no problem. I’m forever grateful for the kindness John has shown Joshua. (If you’ve read The Power of Kindness and The Power of Kindness 2, you know all about this. If you haven’t read them, please do. It will restore your faith in humanity.) John’s encouragement, coupled with Joshua’s resolve not to go to Wisconsin – plus his desire to play ice hockey, a sport nixed by the doctors – gave him the push he needed to slowly start to gain weight. But, we needed more ammunition to win the war.
When I took Joshua to a psychiatrist, Dr. Stanley Hertz Dr. (again – giving credit where it’s due), I never anticipated that his diagnosis would resonate so deeply with me. ARFID. That one little acronym, uttered by Dr. Hertz, brought tears to my eyes. ARFID stands for Avoidant / Restrictive Food Intake Disorder and it meant that there’s a name for what my son has been suffering from, in addition to Obsessive Compulsive Disorder, for years. Again, if you read Hungry, you know that it also gave a name to what I had battled in my early twenties. I beat it through talk therapy with a social worker, but Joshua needed more. He finally acquiesced to taking medication – I finally acquiesced to giving him medication.
After a while on the medication, Joshua was eating Chinese food (with his therapist, Dr. Jay Saul) and strawberry Greek yogurt (with his nutritionist, Kerry Fannon). And then suddenly, he didn’t need their support to keep eating all of the new things on his plate outside of their offices. He’ll now grab a slice of pizza out of the box on pizza night, instead of opting for a bowl of spaghetti and ketchup. He’ll try new things – like miso soup and sweet and sour chicken, instead of sticking to steamed chicken and rice. He looks forward to his therapy sessions with Dr. Saul, not only for the support Dr. Saul gives him, but also because on the way to every appointment, we pick up a new Chinese dish to try.
It was slow going at first – everything, from medication to a nutrition plan – takes time to work. There were still anxieties lingering over eating in new restaurants for a few months, and then like the fog suddenly lifting, there weren’t. Probably the best moment was when his pediatrician, Dr. Maggie Chalson, said the words he had been waiting to hear, “You can play hockey.”
It felt like the biggest victory I had ever witnessed watching Joshua skate out onto the ice with the rest of the junior varsity hockey team. He hasn’t been medically cleared to play in a game yet, but he’s practiced with the team almost every Saturday, and even a few weeknights, since October 18th – just over two months ago. I must have looked like a loony that first time, taking a million photos of just a practice. But, I wanted to record a moment I never thought I’d see.
There have been setbacks to be sure – he hasn’t gained any weight since he started playing hockey and this past week he lost weight. It’s concerning, but he’s still light years ahead of where he was. In fact, when Joshua went back to Dr. Edwards last week, the doctor walked back into the exam room after Joshua’s breathing test and said, “I can only say, ‘Wow!'” Joshua’s lung function had improved by 20%. He’s still not perfect – his lungs are functioning at 80%, but he’s out of the danger zone. Even better, when Dr. Edwards pressed on his chest, he said it felt normal. He felt muscle, not a tissue thin covering over major organs. When Joshua takes his shirt off, I can’t count every rib. He’s got some heft to him, some meat on him. Since he first started this journey, Joshua has gained fifteen pounds (and lost one and a half this past week, for a net of thirteen and a half pounds). And… He’s grown two and a half inches – at nearly 5’6″, he towers over me. And he’s not even close to being done growing at a week shy of fifteen – he’s only had two growth spurts.
It’s been a long battle – one step forward and two steps back, but the glimmers of hope every time we’ve thought that we hit rock bottom has kept us going. And the battle isn’t over, but we relish every small victory along the way.
Note: If you’re battling an eating disorder, you’re not alone. When I wrote Hungry, that was all I could offer – that you’re not alone, because I didn’t have any advice on how to battle an eating disorder. I had no idea myself. But now, I can offer some hope, which is one of the reasons I wrote this essay. Click on the names of those on Joshua’s team for more information and to make an appointment, if you’re in the New York metropolitan area. Also, visit the National Eating Disorders Association’s Facebook page. And always feel free to message me on my Facebook page – I will answer all messages. I have connected with so many people – who have since become friends – when they reached out to me, because they or their children were going through the same battles. It’s always good to have someone to talk to – you’re not alone…