23 Jan 2013, Posted by elizabeth in Blog, 12 Comments.
I was sitting in a wing back chair at my aunt’s house, listening to a detailed story about how her Achilles’s tendon had dissolved over a matter of weeks. It was almost 10:30, and we were preparing to turn in for the night in anticipation of our flight back to Albuquerque the next day when Maikael had innocently asked, “So what happened to your foot anyway?” Equally blessed and cursed with a fertile imagination, it wasn’t difficult for me to envision the ropy muscle separating from the bone and then ceasing to exist altogether, like acid poured over metal, and my mind circled around this mystery in an infinite loop until I was overcome with a familiar sensation.
The trip “home” for the holidays, our first time in Seattle for Christmas in nine years, had been high-contrast. It is always wonderful to visit with some of my oldest, dearest friends and family, drink too much excellent coffee, and let my eyes soak in the vibrant green landscape for a few days. But Abra, who doesn’t travel very well in the first place, had a terrible, fever-y cold that settled in for the majority of our trip, making her miserable, cranky and in need of long afternoon naps that kept us house-bound for big stretches of each day. There is always a lot of going and doing on these trips, and more than once I found myself secretly grateful that Abra’s illness was keeping some of that at bay. At the end of most visits back I whiff a little longing for the life I left behind 10 years ago, but tonight I was just ready to be home.
I wasn’t surprised when I suddenly started to feel nauseous and woozy, a perfect storm of exhaustion, dehydration, and a gross medical story having finally washed up against my shores. It’s a feeling I am intimately acquainted with, and in an effort to prevent what I knew was going to happen next, I stood up and made my way to the kitchen to get myself a glass of water. I think I’ve got this under control, I remember thinking as I gripped the kitchen counter. The next thing I knew, the darkness was pricked by a fireworks show of white starbursts, and the sound of a thousand radio stations, all competing for airtime, flooded my consciousness. I always hear the voices before I see their accompanying faces. Yes, she’s coming back, I hear my uncle say. Okay, we’ll keep her still until the paramedics get here. Then Maikael’s face, inches from mine, a mix of worry and relief.
I am a fainter. The technical term is vasovagal syncope. The first time it happened to me, at age 16, I had hurt my wrist during tear-down for a show and suddenly found myself slumped on the floor of the theatre, having hit my head on the stage’s lip on the way down. The emergency room doctor that attended me warned that it would probably happen again, so when it does, usually every couple of years, I don’t think much of it. Usually these spells are precipitated by pain, exhaustion, dehydration, emotional stress, or some combination of factors that I don’t fully understand. I’ve always thought of it as my body’s way of protecting itself, as if my nervous system simply shuts down when I become too overwhelmed by life.
Maikael, aware of my history, probably wouldn’t have called the ambulance except for the fact that no one saw what happened. Much like my return to consciousness, they heard me before they saw me, a loud crash reverberating through the condominium. Maikael found me in the kitchen lying prostrate on the floor, the cat’s food and water scattered at my feet. My eyes were rolled back in my head, a terrible grimace, “like a dead fish,” arranged on my face. “I thought you had slipped on the water, hit your head,” he said. “It looked like you were a vegetable.”
Normally after fainting I immediately feel better, but the nausea persisted and my head throbbed. After checking my vital signs the paramedics determined that my blood pressure was too low and decided to transport me to the nearest hospital. They gave me a tab of Zofran for the nausea and conducted a routine EKG en route. As the ambulance slid through the night, headlights slicing through the cold January rain, I told the paramedic, “The last time we were in Seattle our daughter was rushed by ambulance to Children’s Hospital when she vomited blood.” “Man, that’s too bad,” he said. “And then we spent last Christmas vacation in a Mexican emergency clinic when my husband and I got terrible food poisoning,” I added. It sounded ridiculous, saying all of this out loud, but I knew the paramedic was right when he innocently asked, “Maybe you should stay home next year?”
The emergency room is bright and quiet this Thursday night. Nurses enter the curtained room, an IV is inserted, a family medical history is taken, a hospital gown donned, another EKG conducted. Having been through this routine before I am waiting for the doctor to return with the results and send me home with an admonishment to rest and stay low to the ground the next time this happens. Instead, he says, “I’m concerned with the results of your EKG. The one taken in the ambulance was highly abnormal, and the one we took when you first got here was borderline.” He tells me about something called Burgata Syndrome, a very rare but very serious hereditary heart condition with three main risk factors: a family history of sudden cardiac death, a history of fainting episodes, and an abnormal EKG. Without treatment, 100% of cases result in death. I must not be behaving sufficiently freaked out because the doctor, as if to impress upon me the gravity of the situation, warns me that, if it’s concluded I have Burgata Syndrome, a cardiac surgeon will be implanting a defibrillator in my chest the next morning.
While we wait for the technician to perform another EKG, and then another, I ask Maikael to Google Burgata Syndrome on his smartphone. He reads me snippets of the entry on Wikipedia, and as he talks my mind allows myself to imagine this possibility. What is the recovery period like from a surgery of this magnitude? How big will the scar be? Will I have to go through a separate TSA line at the airport? Will I be able to keep running? Will Abra lose a mother too-early, just like me? I think about how life can so quickly slip off its seemingly sturdy tracks, how one small question from Maikael to my aunt led us tumbling down this rabbit hole, creating a series of circumstances that will either save my life or amount to one big headache. I think about how my mother’s sudden death continues to pursue me in the most oblique ways, even 10 years later. I wonder if I will ever be free of it.
My heart has always been stronger than my head and it tells me that this is not what is wrong with me. I am not surprised when the next two EKGs come back perfectly normal. Still, the doctor, who strikes me now as overly cautious, is concerned about the dramatic fluctuations between each reading and assures me that I’m not going home tonight, and that I should re-book my flight scheduled for tomorrow.
It is 4 am before my mammoth hospital bed is barged down a darkened corridor on the cardiac wing. I can’t help but crane my neck into the dimly-lit rooms; a man, wrapped in a ratty bathrobe, hair askance, balances himself on the edge of his bed, head bowed. Everyone I see is old, a fact that simultaneously startles and comforts me, a tangible reminder that I don’t really belong here, at least not yet. A dry cough issues from another room, but mostly there is silence. I try to settle myself in for a few hours of sleep – I’ve been warned that the nursing staff will be back in an hour and a half to take my vital signs and begin their daily rounds – but my mind circles around a hard pebble of truth. I have spent more time interacting with the world of emergency medicine the past two years than the rest of my life combined. How strange, to be an otherwise perfectly healthy family who finds themselves either out of the shadows of doctor’s offices or lurking around hospital emergency rooms in faraway places, a case study in extremes.
As I turn the facts over in my mind, searching for the lesson, I feel a flame of self-inflicted anger licking at me, overcome by the sense that I have brought these circumstances down upon myself. If I had just gone to bed 10 minutes earlier. If I had just told someone I didn’t feel well. If I had just stayed seated. If I had just asked for a glass of water. If I had just told the paramedics, “I’m fine,” none of this would have happened. I have always been a firm believer in the notion that if you don’t listen to the Universe’s whispers then it will start to shout, and what I’m really mad at myself for is not listening better. The lesson, while so obvious that even a paramedic who didn’t know me could plainly see it, is one I am persistently blind to, and I wonder what further dramatic circumstances are in store if I don’t finally pay attention and listen to the call, issued loud and clear.
Stay at home. Stop moving.
Later that afternoon, I lie on my side in a darkened room, an ultra-sonographer skimming a wand over an open flap in my hospital gown to peer inside my heart. Although a series of expensive medical tests and the cardiologist have told me what I already know – that the chance I have Burgata Syndrome is highly unlikely, and that I’m probably just a fainter – he wants to make sure there are no structural abnormalities. So I watch the valves of my heart open and close on the screen, like a fish moving its lips. I see that essential muscle flex and release in a steady rhythm, watching the pulse of my life, so close to the surface yet deep within me. I’m not sure how anyone can tell much of anything from the grainy picture, but later the physician’s assistant breezily reports that, while everything is essentially fine, they discovered a small hole in my heart. “You’ve probably always had it – lots of people do. It usually closes up at birth, but sometimes it doesn’t. It’s not likely related to what happened,” she says, with a shrug in her voice.
A few weeks after I’ve been discharged from the hospital into another cold, January night with a clean bill of health, my friend, Meghan, notes the metaphor and poetry of having a hole in one’s heart. A grief counselor once told me that the bereaved are like “the walking wounded:” seemingly fine on the outside but moving through the world with a gaping hole somewhere inside, where no one can see, a crucial piece of their anatomy missing. That’s a bit how this feels, the presence of something felt through its absence. One night I am reading Katrina Kenison’s new book, Magical Journey, which arrived in the mail while I was out of town. Maybe even while I was in the hospital. Home, she comes to realize in her own journey towards wholeness, is “the invisible, inviolable place deep within me, a still point to which I could always return.” I can’t help but wonder if that’s the piece of my heart that’s missing, that deep-seated sense of place that I’ve never seemed to possess, a congenital loss. What I most need to cultivate in my life, what might begin to fill that negative space, is home.
The above photo was taken in a moment of levity (yes, that is me, checking my email from a hospital bed, IV and all); near the end of this ordeal, Maikael had the wherewithal to snap a photo for posterity.
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