I recently started singing lessons — a rather mind-blowing pursuit, since for much of my life, singing was out of the question. How can you sing when you can’t even breathe?
At 18 months old, while my dad, mom, older brother and I were driving from Virginia to San Francisco for my father's new Naval deployment, I started wheezing. The asthma attack landed me in the hospital.
Emergency room visits and hospital stays punctuated my childhood and early adulthood. I could have been a tour guide of any Intensive Care Unit: “Over on the right is a shot of adrenaline, or epinephrine — try that first. If that doesn’t work, try the nebulizer on the left and IV over there.” These visits became so routine that as I got older, I often told the doctors and nurses what medicines I needed: Prednisone. Albuterol. Theophylline. These were the mainstays, but there were many others over the years. I took them in such large doses that one time they made my blood toxic.
Emergency was a word my family understood. My mother was diagnosed with a brain tumor when I was 3 years old; she was 28. For five years, until her death, she battled her disease in and out of the hospital, too. I went to Bethesda Naval and she went across the state to Johns Hopkins in Baltimore. I don’t remember ever seeing her hospital nor do I recall her ever seeing mine.
A Motherless Child's Stress
Asthma is a disease of the respiratory system. It is serious business. Seneca, the Roman philosopher and Stoic dedicated an essay to it, called “Asthma,” in which he said that of all the ailments he'd suffered, asthma was the worst of them all. “Doctors have nicknamed [asthma] ‘rehearsing death,’ he wrote.
But asthma also has a powerful psychological or psycho-social component; with symptoms potentially exacerbated by emotional stress. As a child, I never realized it, but looking back I see it clearly: for all my suffering, asthma distinguished me. Got me noticed. In a childhood of disorder — marked by my mother's death, and family chaos and constant moving — my own illness provided order. It wasn't until the birth of my first child that my symptoms truly ceased.
In my own childhood, the asthma triggers were abundant: animal dander, dust, mold, pollen, cigarette smoke, a common cold, a change in temperature, or, yes, the particular stress of an ever-shifting "home." When I was exposed to any of this, the airways of my lungs inflamed, constricting my breath. This caused the gasping for air or wheezing sound that is asthma’s signature.
When I was in distress, everyone could see and hear me. An asthma attack is very public. When my airwaves constricted, so would I. My shoulders and back tightened and I would fold in on myself. I must have thought that by making myself small, my lungs would have less work to do. I would stay like that until help arrived.
Often help involved a round with my "Machine" — a blue, compact Maxi Mist Compressor, also known as a nebulizer. I’d wrap my lips around the mouthpiece filled with steroids and saline solution and inhale the cool medicine. Relief was usually quick.
This Machine traveled everywhere with me. Once I started wheezing on a car drive. My dad had to pull over to a 7-11. We plugged the Machine into a socket in their storeroom. I sat on a cardboard box filled with Doritos and started breathing again.
Asthma is episodic. Mostly I breathed normally. In middle school and high school, I even rowed crew, ran track, and played tennis. Asthma is also genetic. Some of my cousins on my dad’s side had it, but no one had it like I did.
Order In A Disordered World
As the daughter of a naval officer, and without a mother, I moved 12 times as a kid into 11 different houses and six different family configurations.
Wherever I went, I took my meds, wheezed and went to the hospital. It didn’t matter if it was Aiea, Hawaii or Washington, D.C. Regardless of the coast or city, of the weather or school, I always had my inhaler, my Machine and my doctors.
In one of these homes, when I was 3 years old, my mother fainted while talking to our neighbor, Mrs. Chang, on the telephone. Mrs. Chang called her name many times. When she didn’t get a response she hurried to our house and found my mom lying on the floor unconscious. That was when the doctors discovered the astrocytoma tumor in her brain. My dad was on a destroyer in the middle of the Indian Ocean. It took him three days to get home. When he finally did, I was in the hospital, too.
This time I practically stopped breathing altogether. The doctors intubated me by way of my nose to get the air moving again in my bronchial tubes. Nasal intubation happened four more times when I was a child. I only remember one of them. I lay on a bloodstained hospital bed after waking up from the anesthesia. My nose throbbed like it had been pummeled. The rubber tube scratched the back of my throat. I bled for days.
“The scariest was the time you had to be air-bagged,” my dad said recently when I asked him about these attacks. I’d never even heard of air-bagging and had to Google it.
“You stopped breathing,” he said. This time I started breathing again not through a tube but with the help of a brown bag.
Unfortunately, my mother didn’t have a brown bag. Doctors tried radiation. They tried chemotherapy. They even opened up her skull three times to scrape out the cancer. There was usually improvement after each surgery. She’d get out of bed. She’d chat again. Her hair would begin to grow back. But the tumor held firm. It won.
I have little memory of her being well. I picture her in bed leaning against a pile of pillows. She’s wearing a brightly colored, patterned silk robe to conceal her deteriorating body. Her cheeks are puffy. Her bald head is covered with either a brown wig styled like her natural hair, but with a too-perfect gloss and bounce, or a headscarf, tied gracefully to the side. Even when my mother was at her sickest she always looked elegant, as if a dignitary might stop by at any moment. She was the wife of a rising star in the Navy, after all — a man who would eventually make Admiral.
Right before she died, she called my brother and me into her room. She had something important to tell us. “I’m going to die soon,” she said. “I love you very much and will always love you. Remember that always.” I can imagine the tears and the hugs but it’s all a blur. That is the last time I remember her alive.
Seven months after we buried her on a hill, under a tree, in Arlington National Cemetery, we left her behind and moved again. Another call to duty.
Before all that, when I used to sniff the roses in our garden, eat the not-quite-ripe tomatoes off the vines, and climb the magnolia tree outside our house in Virginia, my mom called me Sassy Pants. In a picture of her, my brother and I before cancer’s arrival, that nickname seems appropriate. We are all wearing striped shirts. My hair is brushed, shiny and pulled back in a little barrette. With my eyes sparkling and my head tilted, I look as sassy as any well-tended kid might.
But as more and more chaos swirled around me as a child—sickness, packing boxes, moving vans, new towns, new schools and new caretakers — Sassy Pants retreated. And someone less demanding and more watchful emerged.
Except with my asthma. It was only my asthma that brought Sassy back out. When I was 13 years old, I was hospitalized for pneumonia. My cough ruptured my air sacs. It then collapsed my lung. I was already in bed hooked up to oxygen and IVs. To re-inflate my lung, the doctors punctured a hole in the front of my chest. They shoved a tube into the top of my lung. The pain catapulted through my back and lodged under my shoulder blade. Comfort was inconceivable. The tube connected to a burbling machine that slowly ballooned my lung. To keep up my strength, I walked the corridors of the hospital wielding this machine and its long extension cord.
After two weeks, I was fully inflated and ready to go home. But when the doctors removed the tube, air whooshed out with it. I knew something was wrong when putting on my shoes winded me. My lung had collapsed again.
This time the doctors punctured a hole in my left side, under my armpit, and shoved in a new tube.
Flash forward 32 years: I’m chatting with a psychiatrist friend of mine about psychosomatic illnesses and I start asking about asthma, and my severe and scary version of it as a child. He said the theory behind psychosomatic illness today uses the example of a three-legged stool. One leg is genetics, one is temperament and one is exposure to stress. When you have all three, you might get one sick person. But when you remove a leg, the stool can’t stand and the sickness might go away. This three-legged stool concept, also known as the biopsychosocial model, was formulated by George L. Engel a psychiatrist at the University of Rochester, who published his theory in the journal Science in 1977.
Love, Babies And Song
After my collapsed lung, the wheezing and attacks continued — through new stepmothers, new towns, new schools, new chaos. Then after college, I moved to San Francisco. I met a guy. We fell in love. I noticed that I wheezed a little less. We moved to New York City. We got married and bought an apartment. Only once did I visit the hospital — and that was when we first moved there.
When I turned 32 and was pregnant with our first child, I stopped taking medicine. I’ve wheezed a few times in the 13 years since. Doctors tell me I still have asthma. But you wouldn’t know that from my medicine cabinet. Empty.
I used to joke that the natural adrenaline needed to stay alive in New York City and not get run over by a cab cured my asthma. Or maybe it was that our apartment was dust and mold-free. Or maybe that third leg on the stool, the one of stress, wasn’t there anymore. I’ll never know.
In my last singing lesson, I had a breakthrough. For weeks, I composed myself like a classical singer with my feet firmly rooted, my body erect, and my hands at my side for maximum focus on my breath and my sound. But instead of it coming out with force, it sputtered. It was as if my breath was clenched, my air tightened. My songs were losing their resonance. And I was losing my confidence. My teacher tried everything from chanting to craniosacral adjustments. Nothing worked. My sound was inhibited, stuck in my body. Last week, she suggested I move with the music. “Throw yourself into it, do an interpretive dance. Really express yourself,” she said. As I sang the George and Ira Gershwin standard, “The Man I Love,” I swayed my body and waved my arms. The sound exploded out and something deep inside suddenly felt "untrapped" and buoyed by breath. The notes weren't perfect but they were out there — and without a single wheeze.
Sarah Baker is a freelance writer and blogger. She lives with her husband and two children in Cambridge.