by Ann Kathryn Kelly

The revolving door into 75 Francis Street, one of three entrances into Boston’s Brigham and Women’s Hospital, conveys people from the city’s congested streets into its halls like a major vein into the hospital’s heart. I spent many Friday afternoons—Mondays and the occasional Saturday, too—rotating through that door. My diagnosis was confirmed on the other side of it, and a plan mapped to open my head.  

I got to know the place, its rhythm, that summer-into-autumn. It was 2009, I was forty, and I’d been diagnosed with a neurovascular disease: a cavernous angioma that was bleeding in my brain. Fewer than one percent of the population is diagnosed with this type of neurovascular tumor. Some patients live out their lives never knowing they have one, if symptomless. 

Not so, with mine. I’d had severe headaches, muscle atrophy in my limbs, and a mysterious limp for decades—all, documented deficits. I’d grown up in the 1970s and 1980s in a time when MRIs were not widely used, at least in the rural environs of my childhood. At twenty-nine, with my first MRI, specialists saw a shadow. It wouldn’t be definitively diagnosed as a cavernous angioma for eleven years. Surgeons recommended at the time that we watch, wait, and manage my symptoms with a prescription.  

By forty, my headaches crashed almost daily. I developed nonstop hiccupping and bouts of dry heaving. Paralysis crept into my left foot and ankle. I was fitted for a brace. They told me my next hemorrhage, if large enough, could cause stroke-like deficits.  

Managing my symptoms was no longer an option. 

***

I was nine the first time I remembered feeling pain that radiated, like stars. It was Walter Burke’s fault. 

Walter was dark-haired, chubby, with a fringe of springy eyelashes that seemed almost to touch his brows. Even at nine, I knew lashes like that were something to covet. Walter wasn’t the meanest kid in the schoolyard. That distinction went to Ricky Adams. Walter routinely gave away his dessert in return for being invited to the lunch table. Ricky? He just grabbed dessert—anyone’s—before booting them to the curb. I’m sure Ricky would have kicked me on purpose that day, if given a clean shot. Yet it was meek, portly Walter who landed the blow.  

Walter’s foot was merely part of a large jumble of limbs swinging with abandon and fiercely pedaling that April afternoon; an army of sneakers making our merry-go-round spin faster. We were a crush of screaming, laughing third graders, gulping in the spring air and waving to those unable to squeeze onto our pig pile of merriment. Round and round we went in dizzying delight, circling a muddied patch of earth.  

It happened so fast, I don’t remember how I fell. One minute I was gripping the metal bar as a blur of trees, buildings, and onlookers roared past. The next, I was on the ground. I heard a thud as a shoe—Walter’s—collided with my skull.  

I saw stars. 

I felt my friend Laura’s hands wrapping around my arm. She tugged and I sat up in the dirt. Nausea stirred, and I heard a funny ringing. I spied Walter over Laura’s shoulder, absorbed in stubbing the toe of his sneaker into the ground when he wasn’t stealing peeks in my direction.  

“I didn’t mean it. I was sliding off just like you.” Walter glanced from me to Laura, his eyes pleading for backup. “Everyone was pushing.” He slid his glance toward me again. “You OK?”  

Laura pulled me to my feet. I was going to get my own swift kick in, maybe to his shin, once the sky stopped swirling. I bit down on my rage when I saw how nervous he looked.  

“It’s OK, Walter. I’m alright.”  

I rubbed circles into my forehead, massaging my right eyebrow. Classmates raced toward the school building where our teacher waited, clanging a bell. I’m sure Walter wanted to join them; to put safe distance between himself and the scene of the crime. He stayed, though, quiet and walking beside us the whole way back. Walter was loyal like that.  

I don’t remember much from the rest of that school day, only that I had a throbbing headache. The nausea subsided, the ear ringing quieted, but the double vision reminded me of the years I’d spent in glasses before my eye had been corrected with surgery.  

The story goes that I was four when my left eye crossed.  

“You’d gone to bed the night before just fine,” Mom remembered. “The next morning, your left eye was crossed and looking at your nose, Annie. We had no idea why.” 

My parents took me to an eye doctor who spent the next two years trying to correct it with glasses. We ended up with three pairs: blue ovals, brown rectangular ones, and pink cat-eye frames. I looked sassy in my pink cats, but my eye was still crossed. My parents moved on to another eye doctor who finally corrected it with surgery when I was six.  

I keep a wallet-sized photo from kindergarten class picture day in an envelope in my bureau. I’m wearing a sunshine-yellow shirt, silkscreened with a laughing cartoon turtle, and my blue glasses. My right eye looks straight into the camera, my left eye looks at my nose, and I’m missing a front tooth.  

I look happy.  

My limp showed up around the time my eye crossed, afflicting my left leg. My thigh and calf were underdeveloped, and I had trouble flexing my ankle. Instead of pointing my toes skyward when walking and landing on the heel, lifting again on the ball to complete my stride, I swung my left hip out to compensate. Slap…slap…slap. My foot fell like a pancake to the ground. 

My right side, because it worked harder, had noticeably more developed muscles. I don’t recall being bothered by my lopsided gait as a young child. It wasn’t until grade school, when dreaded recess or gym beckoned, that I began resenting it. I couldn’t keep up when the girls jumped rope. Running? Snails could cross a finish line before me.  

By third grade, Mom and Dad began taking me to a Rolodex of specialists as we searched for a root cause. Our family doctor theorized that I was entering a growth spurt and suggested my right leg might be longer than my left. He recommended a customized hard plastic lift for my shoe. The only thing it delivered was a bill to my parents and a sore heel to me.  

By twelve, my parents were consulting with orthopedic surgeons. X-rays were ordered; my left thigh, calf, and foot muscles manipulated over a series of appointments. They studied the clockwise and counterclockwise rotation of my ankle. Another time they stuck small round electrodes to me, and a technician shocked me while a beeping machine charted muscle responses. It felt like someone was pushing cigarette butts into my skin. When he peeled off the nodes forty-five minutes later, I had red welts traveling to my thigh. The detour shed little light on why I limped, and I left the room with what looked like chickenpox.  

Questions abounded, but answers evaded. Was it a polio vaccination gone awry? Scoliosis? A torn tendon? An inner ear issue impacting my balance?  

I walked with a limp for decades. By forty, my ankle started locking. My free-falling foot thwacked the ground. My headaches, more frequent and vice-like.  

In 2009, after a decade of periodic MRIs and a confusing, imprecise “calcium deposit” diagnosis from eleven years earlier, three neurosurgeons at three hospitals reached an agreement. Thirty-five years after I had eye surgery, thirty-one years after I fell off a merry-go-round, and after a lifetime of limping and headaches severe enough to make me vomit, I had my answer. A specialist quietly confirmed that I had a brain tumor.  

My mind rewound the reel to my childhood, as I sat beside my brother Sean in a windowless exam room. I reflected on the march of doctors I’d seen, the theories they’d tried on for size through the 1970s and 1980s, the medical fork in the 1990s road that led me, eleven years later, to that room.  

The root cause, at last, isolated. 

I watched the surgeon circle the tumor on the MRI splashed across his monitor. He called it a cavernous angioma. Fed by blood, it was slowly hemorrhaging in my brain. Had been, he believed, for decades. I studied the image on his screen. My previous bleeds looked like rings on a tree trunk.  

He told me I was likely born with it, its pressure the culprit behind my lifelong symptoms. I also had new complications. Dry heaving. Nonstop hiccupping that sometimes lasted days. He told me I needed brain surgery if I wanted my health—my life—back.  

Of course, I did. I just didn’t want the plan he laid out to get me there.  

***

“We know it’s not around the corner for you.” The young woman calling from the neuro suite’s scheduling desk started most phone conversations this way. “I’m sorry, but we need you here again. Dr. Fuller dots every i and crosses every t.”  

There was never a discussion in my family if we should look outside Boston, somewhere closer to home. With some of the best hospitals in the world, and widely considered a center for elite universities and medical training, Boston was the logical, the only, choice. 

And so, Sean drove me the hour-and-twenty-minutes through traffic from southern New Hampshire to meet with Dr. Fuller, renowned brain surgeon and a Harvard Medical School professor. We drove the hour-and-twenty-minutes for additional procedures, like the cerebral angiogram that used contrast dye and a needle inserted through the femoral artery near my groin and snaked up veins into my head. They studied the resulting x-ray to rule out abnormalities in my brain’s blood vessels prior to surgery. We drove the hour-and-twenty-minutes for another MRI across the hall, for more lab work, for whatever was asked, because we wanted—needed—those t’s crossed.   

I remember the clammy embrace of summer that leached from the asphalt and pushed from the sky as we crossed from the parking garage to the hospital’s entrance. I remember car horns, the hiss of buses braking, people weaving through the sidewalks immersed in conversation with each other or scrolling on phones. Life, loud and surging outside, drifted in as the lobby door turned and pulled me into a world of quiet, somber diagnosis. Disbelief. Decisions.   

Inside the 75 Francis Street lobby, lines frequently queued into an Au Bon Pain café. Patrons file up to glass cases filled with chilled fruit cups, pastries, sandwiches. When we were early for an appointment, Sean and I would sit at a table squeezed into a back corner, near the condiment station. I watched our neighbors. Were they visitors? Soon-to-be patients, like me, here for a consult that could upend a life they thought they controlled? Were they looking for more than a jolt of caffeine—hope, perhaps?—in their shot of espresso?  

I watched doctors and nurses carry out coffees and salads in plastic containers, looking at their watches and phones, striding with purpose. I knew that feeling and wanted it again, the rushing to a work meeting that, weeks earlier, I would have resented. We stood in line to get coffee for the road, tall dark roast for my brother, iced hazelnut for me. From the lobby, we rotated through the door and into the street. A line of wheelchairs on the pavement, some empty, others occupied, backed up to the café’s windows.  

In the passenger seat headed home, I lifted my iced coffee to my forehead to soothe the pounding while Sean jumped lanes and steered the conversation. He drove me to all my appointments as another set of ears, but mostly because I didn’t have the guts to take on belligerent Boston drivers. He told me I’d get through this.  

“And when you do, Annie, you’ll be able to handle anything life throws at you.”  

I nodded yes when what I wanted was to clap my hands over my ears. I didn’t want to hear him, to acknowledge what I needed to do.  

***

A Spanish proverb tells us we can have anything we want as long as we accept there is a price to pay. It’s Biblical, as many are.  

Take what you want but pay for it, says God. 

Would they get my tumor? All of it? What if it was cancerous? Would I still be me, after my head was opened?  

Take what you want but pay for it. 

The promise on the other side of a scalpel beckoned. A chance at fewer headaches, perhaps a reprieve from my hiccupping, vomiting, vertigo. Hopefully, a reversal of the paralysis that had taken hold in my left foot and ankle. It outweighed the panic clawing in my gut.  

I was willing to pay. 

***

When we peer into a darkness without answers—assurances—that’s when the starkest, the truest fear surfaces. Still, I had family, friends, a renowned surgeon on my side.  

Ten years have passed since my surgery. My mind knows I’m healed. My body agrees. I haven’t had a debilitating headache that has made me vomit in a decade. I’m no longer sapped of energy. My hiccupping, a constant that punctuated my days, now gone. Yet every so often, I’ll be reminded that Angie—the nickname I gave my cavernous angioma—once shared my life. It’s subtle, like a soft tap on the shoulder. 

Remember me?  

It comes when I get vertigo in the supermarket as I crane my neck to look at the top shelf, scanning too fast across rows of cereal boxes. My head swims in an instant and I look down into my cart to regain my equilibrium. It comes, at times, when I’m brushing my teeth. As I lift my head from the sink after rinsing, my neck at times will release a pop. It’s always where Dr. Fuller cut into me, where I now have a piece of metal mesh layered over my skull. The pop is fleeting, a mere second, but it radiates a tingling feeling deep into my scalp.  

The shadow of Angie is there, once again. 

I’m reminded, too, when I eat something spicy or dry; Indian perhaps, or Thai food, and often when I eat croutons. It tickles my throat, makes it constrict, as do the first tingling sips of wine or beer. It leaves as quickly as it starts; a reminder of the twelve hours of surgery I endured, face down on an OR table with my head locked into a vice. Swallowing and vocal cord paralysis were among the temporary deficits with which I came away from surgery. Over the eighteen months that followed, I had gel injected into my throat to prevent possible choking until my cords strengthened and could close my airway again while eating.  

Dr. Fuller moved out of state about a year after my surgery. I see another neurosurgeon now for check-ups. I’ve been told my cavernous angioma is unlikely to come back, yet my new surgeon keeps a standing appointment on the calendar every two years. To be sure.  

I comply and go to Boston for another forty-five-minute MRI. When the contrast dye is injected into my arm and the vibrations and sound of jackhammers start in the machine, it brings it all back. The pain I was in, the relentless headaches that made me sick across every inch of my body. The fear.  

I return, for the peace of mind that comes with retracing those steps. My stomach relaxes each time I walk out with another all-clear assessment. My brother and I sit in a Boston restaurant and raise our glasses, knowing we’ll be back in two years seeking a similar assurance. I compare the then to the now, remembering how quiet he was the summer he shuttled me back and forth to appointments, a stark contrast to his usual animation. Sean lives to regale his audience, any audience; to tell just one more story before calling it a night. Not so, that summer. The toll my diagnosis took on my family is something I pray will never be revisited. 

I still don’t handle city traffic well. Sean still drives, never complaining, always finding the time. He fills the hour-long ride each way with limitless stories and observations.  

It’s good when what we know, what we love and need, returns. 

ABOUT THE AUTHOR

Ann Kathryn Kelly lives and writes in New Hampshire’s Seacoast region. She’s an editor with Barren Magazine, works in the technology sector, and leads writing workshops for a nonprofit that offers therapeutic arts programming to people living with brain injury. Her essays have appeared in a number of literary journals.