ann kathryn kelly
I called it Angie.
It made what I had sound less clinical. I wanted the term for my diagnosis, cavernous angioma, to roll off the tongue easily. Ironically, Angie is close to my given name: Ann. Family and friends call me Annie.
Angie worked. It—she?—was yin to my yang.
“You have a cavernous angioma. It’s on your brain stem.”
The surgeon rolled his chair back, angled the monitor, and pointed to a series of images: my skull, in two-dimensional slices. I saw my left and right brain lobes. Eye sockets. Nasal cavity. He held a pen to the screen, hovering over layers of gray, and traced the single black mass in each, just right of center.
The part that wasn’t supposed to be there.
He spoke to me in a windowless exam room, telling me what I had—a neurovascular disease—and what it could, and already was, doing to me. Healthy vascular walls, I learned, run smooth while a cavernous angioma is a malformation of dilated blood vessels [angi] that result in a tumor [oma].
“Picture a raspberry,” he said.
Red, juicy berries materialized in my head. When washing them in a colander at home for breakfast, I’d sometimes study the fine, individual hairs sprouting across the fruit’s velvet flesh. I preferred the tang of raspberries over blackberries, finding the latter often bitter.
The word “rupture” pierced my berry breakfast reverie. Had the surgeon just used that word to describe something that could happen? To me?
“I’m sorry, I caught only half of what you said. Can you repeat that?”
We looked at each other in silence for a beat before he continued. “I was explaining that a cavernous angioma forms in clusters, like chambers you’d see in a raspberry. These caverns fill with blood, to the point of rupture. After a bleed they flatten out, then start, over time, refilling. This could take months, sometimes years, but eventually it will rupture again. It’s cyclical.”
Christ. He had meant to say that about me. A wave of heat skyrocketed from my stomach to my scalp.
A reel began looping endlessly in my head: Angioma. Angioma. Angi. Oma.
Oma God, I thought, do I really have a cluster of bleeding blood vessels leaking into my brain?
“Small, infrequent bleeds can be reabsorbed into brain tissue, but a history of larger bleeds, like yours”—pen in hand, he circled my scans again—“introduce a range of motor and neurological deficits.”
The angioma, I learned, was on my brain stem, the small but mighty, tube-shaped mass of nervous tissue roughly three inches long and about an inch-and-a-half wide that connects the spinal cord to the brain. What it lacks in size it makes up for in rank, controlling functions essential to life. Breathing. Heartbeat.
He recommended open-head surgery. Sooner, not later.
I wanted a second opinion. Said I needed more time. I pointed to a full schedule of excuses; work and personal commitments. Could we do this in six months? What about radiation?
Let’s just not go in there. I spun the antique diamond cocktail ring on my right hand. Clockwise. Counterclockwise. Clockwise. Anything but that.
“I wouldn’t wait,” he said.
Surely, I could find a doctor who would advise against opening my head. Brain surgery only happens on soap operas.
I met with another leading surgeon at a neighboring Boston hospital, respected for his specialty in treating cerebrovascular tumors. After reviewing my case and consulting with colleagues, he referred me to a third specialist, a Chief of Neurosurgery and Harvard Medical School professor.
The August afternoon I received my third opinion that concurred with the previous two, I willed my legs to hold me when it was time to stand and leave.
I called it Angie because it made what I had sound less threatening. It was easier to tell friends and coworkers that Angie, not some disease with a long name, was behind my declining vitality. It was Angie’s fault I was a shadow of my former self.
As yin, Angie delivered dark, escalating blows. Crippling headaches, of course, but also strange strikes. I dry-heaved bile, mostly after waking in the morning, but also when I brushed my teeth, drank coffee, or ate pulpy fruits like oranges. I often hiccupped without pause, days on end, my chest burning like I’d been branded with a poker.
Annie. Angie. One letter separating these names.
I wasn’t being clever, nicknaming my diagnosis. Part of it was ease. Economy. Two syllables in Angie; seven in cavernous angioma. Yet, it held greater meaning the more I used it. Naming confers identity to people, a way we connect; but with things, also a way to understand. To accept.
My name, Ann, derives from Hebrew and means grace. Prayer.
Angie, a variation of Angela, is “angelos” in Greek; “angelus”—angel—in Latin. The Biblical meaning? Messenger from God.
Far-fetched, I know, thinking Angie bore a message. Were it possible, though, what might it be?
God does not give more than you can handle?
Bull. Happens all the time, all around us, and many get crushed.
A block of concrete plunged into my stomach the day I scheduled my craniotomy. I had to trust in my doctors, in the science. Lean on family and friends.
Pray, in the vein of my given name.
Ann Kathryn Kelly is writing a memoir about living with a bleeding brain tumor that went undiagnosed for forty years, and the day-long surgery to remove it. Her essays have appeared, or are forthcoming, in Under the Gum Tree, the tiny journal, WOW! Women On Writing global community ezine, the Pink Pangea travel writing website, and others. She lives in New Hampshire's Seacoast region, works in the technology industry, and volunteers with a nonprofit that serves community members living with brain injury. Connect with Ann on Twitter and Instagram @annkkelly