I wrote the essay below over a year ago, at the lowest point in my struggle with undiagnosed Cyclic Vomiting Syndrome, a rare disorder that affects both children and adults. It is thought to be a migraine variant, as many children with CVS later develop migraine headaches; there’s often a family history of migraines in people who develop CVS at any age. Migraines don’t run in my family, and my episodes started at about age 30, for no reason I’ve been able to understand. Much like migraines, however, my episodes have been triggered by certain foods, stress, and lack of sleep.
There is no cure for CVS, but there are ways to manage symptoms. Some people with childhood-onset CVS “grow out” of the disorder. Some people find relief from migraine medications, some from hormonal birth control, and some (like me) from a tricyclic antidepressant. I had been having symptoms for about seven years before diagnosis, and during the fall before I wrote this, they had increased in both intensity and frequency, maybe due to the stress of juggling school and parenting two young children. Just a few weeks after I wrote this, I found a doctor who diagnosed me with CVS and prescribed a preventative low-dose of amitriptyline, which finally made the episodes go away.
Today is CVS Awareness Day. CVSA, the national advocacy and research body, funds research initiatives and provides resources for people who suffer from CVS. Knowing I am not alone, and finally having a name and a treatment for this awful disorder, has made such a difference in my life. Go here to make a donation to join CVSA in the fight for a cure.
I wrote the following essay during a Literary Kitchen workshop. When I couldn’t yet see a way out, writing helped me imagine one.
I hang the hummingbird feeder outside the living room window. My children climb the sofa to watch, all soft round cheeks and tangled hair. Like the tiny birds we hope will visit the feeder, my children are usually a blur of vibrant, lively energy. But focused on the feeder, if just for a moment, they are still.
Hummingbird nectar grows mold easily in our damp climate, and this can make hummingbirds sick. Every few days, I boil fresh water and sugar. I wash the feeder parts with hot water, scrub out the false flower centers with a tiny brush, fill it and hang it again. In winter, I bring the feeder indoors at night and out again in the morning. On the coldest days, the nectar freezes solid again within an hour, and I bring it inside to warm up again.
A hummingbird nest, built by the mother, is a tiny cup woven from plants, spider webs, and sometimes feathers. In it, she will lay one or two eggs per season, each the size of a pea or a bean.
I can’t eat peas or beans. Or any kind of legume. Or any kind of grain, or dairy. I mostly eat chicken and vegetables. So many eggs I grow bored of them. Some mornings I’m so tired of food, so tired of being scared that something I eat will make me sick, that I don’t eat anything, even though I’m hungry.
The episodes started about seven years ago, every month at first. It is always the same. I wake up at the same time, around 3 a.m., completely nauseated. Violently, my body empties itself of everything, until I am dry heaving over the toilet as the sun comes up.
In the first months, I bought pregnancy tests, always negative. I saw specialist after specialist. It was definitely hormonal, and then it wasn’t. It was definitely Celiac, and then it wasn’t. Gluten intolerance, dairy intolerance, legume intolerance, caffeine intolerance. Hiatal hernia. SIBO. Crohn’s. Cancer. All the tests and procedures came back negative, and still I had symptoms.
Even more than other nestlings, baby hummingbirds are dependent on their mothers for the first three weeks of life. They are born featherless and blind, unable to regulate their own body heat. The mother hummingbird must sit on the nest to warm them, leaving only to gather food.
We watch the hummingbirds sip from the feeder, hovering as if by magic, their wings a blur around brilliant, toy-like bodies. My son tucks himself into my side, slips his tiny hands under my shirt, for comfort. At two, he no longer nurses, but he’s hungry for contact, for closeness. In the kitchen, where I am making the third snack of the morning, he cries and pulls on my pant leg– desperate, whenever I’m in sight, to be as close to me as possible. Even then, held in one arm while I spread peanut butter with the other, it’s not enough. I am not enough. He grieves me while I’m still here, cries into a sadness, ancient, about separateness. Aloneness.
Without the ability to see, baby hummingbirds sense their mother’s presence by feeling the wind from her wings in flight. They lift their heads up and open their mouths to receive food.
I am a mother and a student with a wide network of loving friends. I am not supposed to feel alone in this, but I do. I feel abandoned by God, and pitied by those who love me but can do little but shake their heads, perplexed. I don’t know anyone else who experiences this mysterious, unpredictable sickness.
During my pregnancies and early postpartum months, I had a break from episodes. I experienced only normal morning sickness, normal nausea– nausea with purpose, connecting me to the ordinary mystery of carrying another life within me. I felt only what any other pregnant person would feel, and so I felt less alone. With my unknown child in my belly, I was doubled, in company, all hours of the day.
Once my son turned one, the episodes started again. Few and far between at first, random enough that I felt hopeful, and then with increasing frequency. More specialists. It was definitely chocolate, fish sauce, or coconut, and then it wasn’t. Now it’s definitely anxiety. Or a parasite, even though the tests– the expensive kind– are negative.
Negative. To negate an experience. Don’t be so negative. Negative space, the space around the thing and not the thing itself, the constant questioning of everything outside and around my body. Negative capability– to be comfortable in not knowing, as in faith, as in prayer. I try, but I cannot feel the wind from the wings of the Mother, the Father, my God. I can only open my mouth to ask for help, for answers.
Because hummingbirds are so tiny when they are born, they grow rapidly, doubling in size within just a few days. Their beaks begin to darken, and they grow their first pinfeathers.
When I’m away from my kids all day, they seem suddenly bigger at night. My son has new words– “Christmas lights,” Kiss-Muss-Yites— and my daughter has made a family picture in which our heads, arms, and bodies are shockingly recognizable. I find her studying herself in the mirror, placing barrettes this way and that, like a teenager. No more changelings, they slip into fully human bodies, move around in fully human lives.
But they still run to me, at the end of separation. They push and shout at each other, jostling for more of me, for the most real estate on the limited land of my lap and chest. How can I admit how wonderful it feels, being away from them, having my body to myself during the days when I’m at school? How can that be when this– these tiny hands so simultaneously gigantic– also feels fleeting? With their bodies climbing mine, I feel irritation, and parallel to it, the desperation of an hourglass. They are the sand slipping through me.
At nine days old, the hummingbirds are large enough that the mother cannot fit in the nest with them anymore, but she must still feed them around the clock. Once fully grown, they will consume half their body weight in bugs and nectar every day, and will need to eat every 10-15 minutes.
I’ve decided not to eat today. What’s the point? Everything makes me sick, or nothing does. There’s no pattern to when or why my body will roust me from sleep, compel me to the bathroom, and void itself of everything. No logic to why afterward I want to sleep for hours in the middle of the day. I put on Elmo or Mr. Rogers and nestle them around me in a nest of blankets, half dozing while the music of the alphabet slips in and out, my body a sea of nausea and apathy.
At two weeks, true feathers begin to appear on a baby hummingbird’s body. Deep green with a red cap and neck, if it’s an Anna’s hummingbird. Brilliant copper if it’s a Rufous, like a winged penny.
I fill the feeder again, a sippy cup with diluted apple juice, a dish with puffs. I settle my son with his trucks, his snack, his Sesame Street. In the mirror I am inspecting the patch of hair at the back of my head. Sharp, dark hair grows in tufts. At my chest, a bright swath of green, shimmering in the light. Between my shoulder blades, two sharp protrusions. I feel light, nimbler somehow. My heart has begun to race in my chest.
At three weeks, the baby hummingbirds are full-size, ready to leave the nest. My babies, sweet tethers, watch the feeder. For the past few days, a flurry of birds. Sometimes, a tiny battle outside the pane– green and red breasts flashing, beaks wielded as swords. My children laugh and clap their hands.
For a few days after the fledglings leave the nest, the mother still feeds them, teaching them where to catch bugs and find nectar. If the weather is poor, she’ll extend the nesting period by a few days. Then she sends them off toward their independence.
This time, what wakes me at 3 a.m is my new body– green, white, a flecking of red at the breast. My perfect wings rise out from the covers. I leave my husband sleeping. No sounds of retching to wake him, just a quiet hum as I lift out of the room. I fly down the hallway, out into the backyard, pungent with night. My body is quick, precise. My thoughts become color and sound, scent of nectar, shape of the feeder tilting in streetlight. The nectar is clear and bright, and I drink it in like air.
