“What are you doing?” I asked him.
“Sometimes,” he said, “sometimes I wonder if I should just end it all.” I was frightened, but he was our firstborn, and there was no template to follow. Maybe this was normal. We took him to a therapist, who said he was fine — he just had a little anxiety about going to middle school. We believed her, and we moved on. But there was something tugging at me.
We liked to call this son of mine Tall Baby, because he was always in the highest percentile in height. Tall Baby told us he wanted a space of his own, so for Christmas that year, we bought some yellow floral fabric and had a curtain sewn for him, a canopy system that went all the way around his top bunk. At first, we thought he loved his hideaway because it was private and cozy and high off the ground.
But he was in there so much, every evening and in all his spare time — disappearing to a place he called Rainbow Tomato Land. Again, something tugged at me.
Watching “My Little Pony” helped bring him back. So did talking to him, hour after hour, his thoughts circling back again and again on themselves. My second shift started when I got home from work, standing on the bunk bed ladder, peeking through the fabric, asking him if he was okay. “I’m okay,” he would reply. I would nod and say, “okay” too, but in my heart, where I’d loved him forever, I knew it was not true.
At the end of sixth grade, on the last day of school, we received a phone call. Our son was having suicidal ideations, thoughts of harming himself and others, and he heard voices. Another student had brought this to the attention of the guidance counselor. He was a danger to the school, and he could not come back without a psychiatrist’s okay. Then began our intense journey to doctors, many, many doctors, many psychiatric intake interviews. To words and labels tossed about like a salad: borderline schizophrenic, bipolar. Perhaps he might hurt somebody if the voices he heard instructed him to do so, they’d say.
We were told we could not leave him by himself. It did not fully register until my neighbor threw a backyard party a few days later. I am an introvert, but that day I could not wait to go down the street and chat with people on the block, escape the heaviness and worry. My son went into a clubhouse in their yard, and I began to relax on the patio with a glass of wine — forgetting our situation for a moment. I did not talk about what was happening with Tall Baby. It felt too private.
Then my son approached me, just 20 minutes later, and he was ready to go home. Which meant I was going home too, because he could not be alone. That is when the new reality of being tethered hit. We walked up the street, and into our house, and I wanted to scream, but I did not want him to know that.
His mood could change abruptly — one night in the kitchen, he was eating something from a bowl, and then, just like that, he hurled a spoon at my head. His piano playing was loud and angry — mostly Rachmaninoff and Khachaturian. He went partial days to a crisis center, where he was put on Abilify, an antipsychotic drug. There were pharmaceutical trucks parked outside. “Take some samples,” our psychiatrist said, offering up a few boxes of samples from a special white cupboard. The appointments were back to back, 20 minutes for each child in the waiting room. Twenty minutes and lots of drugs.
The hallucinations stopped with the Abilify, the voices in his head were quiet, but I kept asking, “What is the diagnosis?” Nobody had one. It never made any sense to me, but they all seemed satisfied. And we went on like that, through the summer and the fall. Tall Baby still seemed depressed, so our psychiatrist answered by putting him on Lexapro. His 12-year-old body, now on two psych drugs. After six months, it seemed to me like nothing had changed, and I was worried about what the meds were doing to his brain. He was missing out on his childhood, and the doctors did not want to take him off any of the drugs, and they did not seem inclined to find other solutions.
I am a literary agent in New York City, someone who can usually solve any problem, and I did not know how to help my seventh-grade son anymore. I began to think that whatever was wrong may have started long before fifth grade, remembering how little by little his friends had stopped calling, how he was paranoid that people were plotting against him and how it struck me that he liked to wear a hood most of time.
Right around then, I went to lunch with a potential client, a woman in her 40s I had never met. I sat down and poured out my story, the fear and frustration having built to the breaking point. She said to me, “Have you thought about Lyme disease?” She herself had had it, and her only symptom was panic attacks while driving, so intense that her mother had to drive over to pick her up because she could not go on.
I had not heard of Lyme. But that lunch, and the sharing of our stories, changed our lives.
There would be years of treatment, Tall Baby finally diagnosed after many tests by a highly specialized neurologist at NYU Langone, including a tissue biopsy, brain spectroscopy, MRI and spinal tap. We were finally told he had neuropsychiatric Lyme disease that started with a tick we had never seen, long enough ago that it had broken through the blood-brain barrier. I will never forget the look on Tall Baby’s face when we first got confirmation — we were sitting together in the dining room, and years of grief and confusion dissolved in an exhale.
That very first summer after seventh grade, with doxycycline, he improved. His spirit was lighter, and I think it was because he had hope, that there was a name for his illness, and that somebody could help him. At the end of that summer, Tall Baby stopped taking both his psych drugs, just like that, not saying a word about it to us for two weeks. The auditory hallucinations did not come back, and Tall Baby never went back on the drugs. There would still be years of treatment, but Tall Baby did it all willingly. Because he wanted to be better, and he wanted to be whole, and he wanted a future.
I’m telling you this story because I had that feeling, deep within my heart, bigger than all my other senses combined, that something was not right, that the doctors were not right. I listened to myself and shared my story with another person, someone I had never met, and my story matched her story. We were connected, just as we all are connected, like trees through our roots. I am like her, and she is like me and we are like each other.
Tall Baby taught me to be mindful of my heart and to go forth from there. We need to act from our truest center, from our hearts, despite all the noise around us. That is my wish for the world, that we help each other: friends, neighbors, children, and strangers, listen to our hearts — because our hearts are what connect us all.
Listen, Holly M. McGhee’s picture-book collaboration with Pascal Lemaitre, is about acting from our truest center, from our hearts, despite all the noise around us.