My Upright Life

Written by Christina Bucciere on . Posted in Features

Christina Bucciere learns the power of the mind as she faces the biggest challenge of her life.


Christina

Photo by Jacob Byk

The Answer

The doctor with the sparkling white teeth and chocolate-brown hair walks into my room. He flashes his Colgate smile, and I answer with the slightest raise of one corner of my mouth, all I can possibly muster. Every part of my body aches, more from exhaustion at this point than real pain. I resent the ease of his smile. I resent the ease with which he walks into my room. I want him out, but I have to sit through yet another even-tempered evaluation of my future. Doctors cannot show any signs of optimism. In fact, I'm not certain their vocabularies include the words yes and no at all.

He unwraps the gauze coddling my blackened feet. His back is turned to me, but even still I squeeze my eyes shut. Even if he is a doctor, I cannot imagine one easily stomachs the view of mummified feet, and I am convinced someone will eventually lose their lunch at the sight and smell of my decaying appendages.

My mom stands at my bedside. She peppers him with questions.

Before he could possibly have time to process the question — let alone develop an answer — the standard reply flies from his mouth.

"We'll know in time."

My mom rebuts with the most-asked question in any hospital.

"How much time?"

Cue the next standard reply.

"It's hard to say," he says with a persuasive look of uncertainty.

But is it? Too often doctors actually have a solid idea of "how much time," but they are trained to manage expectations. Hopes should never get too high. This is why I am shocked by what comes next. After performing his routine examination, he asks if I have any questions. Just one. The one. Always the one.

"Will I ever walk again?" I whisper, moisture coating the edges of my eyelashes.

I expect a tempered answer. Most doctors, up to this point, evade this question like it is their life's mission. Instead, with an unwavering voice and the full attention of his eyes boring into mine, he replies with the monosyllabic symphony that is a "yes."

Tears. Pouring, racing, pooling onto my oversized, mint-green hospital gown.

This I am not expecting. This is a miracle. I will use my feet again. I will feel earth under my soles. I will feel waves crash against my ankles. I will be OK.

In retrospect, the answer to this question was obvious, but for a different reason. At that time, my thoughts were irrational; I could only focus on impossible outcomes. Otherwise, I would have shattered.

Months later, sitting in the passenger's seat in my dad's sedan, I think back to this moment. Suddenly, I taste salty tears on my lips. This time, however, the tears are unwelcome. It took me more than a year to realize the doctor meant what he said. I would walk again, but not with those feet.

The Nightmare

On May 22, 2011, I woke up feeling like I had the flu. The symptoms were typical, nothing I hadn't experienced before, so I brushed them aside and went to work. Within two hours, a pounding headache had set in, and I was chilled to the bone. My body screamed to go home, so I left work early and collapsed into bed, expecting to sleep off what I hoped was a 24-hour bug. My head had other plans. Within 30 minutes, I was writhing. A headache like I'd never experienced took control of my entire body. The pain was crushing, as though my skull was splitting from the inside out. By 11 p.m., when I finally knew I had to go to the ER, I could hardly see straight.

The ER doctor diagnosed me with mono and sent me home. The virus must have still been in my system from when I had it four months prior. Even so, I knew something was dangerously wrong. I stayed up the rest of the night. All attempts to ease my pain were useless. At some point, I finally dozed off on my couch — in part from exhaustion, I'm sure — but largely because my body was shutting down, giving up. At about 6 a.m., my dad came to check on me and noticed a bruise-like lesion on my ankle. He pushed the blanket covering my legs to one side and discovered the lesions were covering my entire body — a rash called petechiae, resulting from toxic levels of bacteria in the bloodstream, I learned later.

Christina in the hospital

This is from the first day in the Akron General Intensive Care Unit about 24 hours after my initial flu-like symptoms. My feet are wrapped in protective materials to increase circulation, and the dialysis machine (right) is continuously cleaning my kidneys.

Before long, I arrived at the ER once again, this time in a far worse state. My mom helped me, in my disoriented state, walk through the sliding doors. Immediately, I stumbled to the bathroom, fell to my knees against the cold, hard, tile floor and vomited harshly into the toilet, another sign of toxic shock. Soon after, I was laid down on a bed. The fluorescent lights were harsh on my searing skull. And then, black.

The next time I would wake, my life would be changed forever.

Bacterial meningitis. My newest and most aggressive enemy. The bacteria infect the meninges, the tissues around the brain, causing them to swell. Soon, the body enters septic shock, causing vital organs to shut down. In order to save me, the doctors used a medication called pressors to pull blood toward my vital organs, leaving little on which my extremities could survive, so they began to die.

By May of the following year, I would be a bilateral below-knee and fingertips amputee, all 10.

Awake

My eyes opened to see the tear-stained face of my dad. This wasn't the dad I was used to. The room was blurry, but my other senses made up for my lack of visual clarity. My ears picked up the scurrying of feet, the hushed voices and the incessant, high-pitched beeping coming from the many machines to which my life was clinging, including a 5-foot-tall dialysis machine, cleaning my broken kidneys 24 hours a day. Wires everywhere, sprouting from my body like rivulets transporting fluids back to the main river. I knew I was lying on some sort of bed. I felt weak. I felt pain. It spread throughout all the extremities of my body, pulsating like angry, ocean waves. I heard a question, one I wasn't sure how to answer. It came from my own mouth.

"What happened?"

I don't remember the answer, though I'm sure there was only a muted version of the truth in reply. Because if my family were being truthful, they would have told me I should be dead. My eyes closed once more, too exhausted from my brief excursion to the surface. The next time they opened, I would know the truth.

Panic overtook me when I realized I couldn't speak. Try as I might, no words would make it past my lips. My throat was overtaken by a ventilator sprouting from my mouth, coaxing my lungs to pump air through my body. It's difficult to pinpoint the details — the people who were there, the conversations that took place, but there are moments I will never forget. Moments that will never leave me alone. Moments that will haunt me like spirits too angry to move on.

Alphabet

This alphabet was my family's attempt to create a way for me to communicate while I was ventilated. I used this paper to ask for pain medication, blankets and to get answers about what happened.

I cannot say how many days passed until the ventilator was removed, but I remember, so vividly, when the doctor removed it from my throat. The feeling of words forming in my throat and fighting their way out until, faint and feeble as they might have been, I heard them singing to me. With them came heavy tears of joy and pain. Joy for regaining my sense of verbal freedom, pain for knowing the world would want some answers, answers I wasn't ready to articulate.

My mom had called my dad to let him know of the new development. When he came to my bedside, I looked at him with tears in my eyes and a shy smile and, barely audible, spoke two words: "Hi, Dad." I had never seen my dad cry so easily, but he did then, round droplets forming rivers along his sunken cheekbones. He nodded, stroking my hair, tacit, understanding that this moment meant everything would be OK. And it would be. In time.

I spent two months in the hospital. First the intensive care unit, then the pediatric intensive care unit at Akron General Hospital, then a combination PICU and rehabilitation hospital and, finally, a concentrated rehabilitation hospital. Once I returned home, I spent the next eight months waiting to see how much of my feet and fingers would heal before determining what would have to go. On Sept. 13, 2011, I underwent surgery at the Cleveland Clinic to remove all 10 fingertips. On Jan. 3, 2012, my right foot was amputated, and on Jan. 20, 2012, my left foot followed suit.

About three weeks after the surgery on my hands, I sat in an office while two nurses unwrapped the thick bandages. As they got closer to the last layer, my breathing became shallow. I resolved not to close my eyes. If I couldn't face my own hands, who could?

One by one, they removed the final, yellow patches protecting the wounded tips. A single tear fell from my lower lashes as I saw the swollen, short and stubby remnants of my fingers.

"Some people are bawling when they only have to have one of their fingertips amputated," one of the nurses said. "You're being very brave."

Brave, or stoically seething. She didn't need to know the difference.

That was the first surgery I ever had. My swollen fingers were practically useless to me for the next month, and I was convinced they would be forever.

But after nearly eight months of living with feet that were no longer mine, I begged my doctor for amputation. He and my parents were hesitant to make any quick decisions because of the finality of amputation, but I saw my future for what it was, and it included amputation. It always had.

With so many months of mental preparation, surgery day was relatively easy.

I lay on a transportation bed parked outside the silver operating room doors. Nurses, aides and surgeons rushed past on their way to the next surgery, the next life-changing moment. I was calm, so calm in fact that I alarmed one of the nurses who stopped to ask me the purpose of my surgery.

"I'm just having my right foot amputated," I said.

He smiled tensely, surprised by my lack of anxiety. He moved on quickly to the next patient, eager to get away from the girl who was so relaxed about losing a limb. Has she done this before? Should I call the police?

The truth is, I was happy. I couldn't have been any more ready for surgery. I couldn't wait to wake up, look down at my feet and no longer see two lifeless forms. Their absence would mean my new beginning.

One down, one to go.

The Mind's Way

Memories of the first three hospital stays are incomplete, consisting mostly of isolated moments charged with emotions too powerful to forget. However, much of this time has been pieced together by family members who were at my side for every second. Odd as it may seem, there were actually some fairly humorous moments that are too funny to forget, even if they were amidst a near-death experience. While under the influence of a constant cocktail of the strongest painkillers, I posed some rather philosophical questions.

"Hey Dad, do you think Gina (my oldest sister) would look better in kelly green or olive green?"

"Olive green," he assured me. He was right. It's the Italian complexion.

The final hospital stay, however, is all too vivid. By then, the physical pain had reached its peak and was slowly subsiding, allowing for the haze of the drugs to melt away. The problem with this was, without the assurance of a steady high — keeping me too strung-out to internalize the magnitude of what had happened — reality began to take shape around me. Suddenly, I was truly aware. And then I sobbed. I sobbed for days at a time, it seemed, only broken up by the three hours of daily physical and occupational therapy. But even though the weeks I spent there were the most emotionally draining of my entire journey, my mind was subconsciously protecting me from breaking completely, letting bits and pieces register at a time. And thinking back to that moment in the passenger's seat of my dad's car, I realized this new phase of my life — the rest of my life — would be, more than anything, a lesson in mind control.

Once I made this realization, that my mind was capable of protecting me from my conscious self, it forced me to be better than I wanted to be. I wanted to sulk in my misery forever, but I knew what my mind was capable of. If it could protect me, I have to protect it, too. That means although there were, and still are, plenty of pity parties and irritating bouts of what-ifs, I hold myself to a higher standard than allowing those thoughts to win. I'm not always successful. In fact, I lose more often than not, but I know my endgame.

In my first draft of this story, I wrote that I won't stop until I get there, to the moment in which I finally extinguish the anger, frustrations and sadness. It sounded so good. It felt like it was actually possible. But the truth, the truth I resent, is there is no final win in store for me. Every day is a battle, a chance to fight and conquer, or be defeated. And those small victories are, and always will be, followed by crushing defeats. And I'm slowly learning that as long as I do win, at least sometimes, I can have control over my life.

Getting Up

It's a steep, slippery, Mount Everest-like climb to attaining control of my feelings. And my balance — as I walk on glorified, anthropomorphized stilts — isn't all that great.

Take, for instance, the time I fell down the steps of Franklin Hall in front of a group of writers and editors I highly respect, and my leg came off. That's right, it fell off, like dropping a mitten or losing an earring.

Eerily enough, I had envisioned myself in that exact predicament earlier in the day, like my mind's way of at least giving me fair warning of the humiliation in store. I think, based on my highly subjective opinion, every amputee has a fear of their prosthetic coming off in public. One might think this would be hard to do, but I assure you it's far too easy. Granted, I had only been using my prosthetics without any assistive walking devices for about four months, so I was still in the infantile stages of amputeehood. Every step I took was measured and anticipated. If I lost focus for even a second, I was likely to fall over, and because I hadn't mastered the getting-up part yet, this was not ideal, especially at a new school where I was not only the new kid, I was the new kid with missing limbs. (And a bad haircut, but that's beside the point.)

I was leaving a newspaper staff meeting, and a group of my peers was gathered outside on the steps leading down to my car. Already self-conscious of people watching me walk, I couldn't think of anything else but the vision of me falling I had earlier in the day. Completely overthinking each step and desperately trying to look normal, down I went in a blaze of awkward yelping, exploding phone parts as it hit the concrete, and a fake leg sliding down the steps. It was a spectacle I'm sure neither I nor those present will soon, or ever, forget. Of course, being the nice students they are, several of them rushed to my aid, kindly ignoring the fact that my leg was detached from the rest of my body like a poor attempt at a Halloween prank. I retrieved my leg and shoved it on as quickly as possible all the while apologizing like a maniac for making them bear witness to my unfortunate mishap. Honestly, I haven't the slightest idea what they said in response because I was too focused on getting my leg back on and booking it out of there as soon as possible. As soon as my leg was on just well enough to make it to my car, I was off, avoiding eye contact with any witnesses. To this day, I have no idea which of my peers saw this absurd moment in my life, but to whoever you are … actually, no. I'd still rather not know. Too soon.

To make a tragic story more tragic, I cried all the way home, cursing the gods and goddesses and the God and Allah and Buddha and any and all other spiritual beings I could think of for giving me this life. I spent the rest of the night replaying the scene frame by frame. And if it hadn't been for the moment of clarity in my dad's car, I would still be dwelling on this moment today. But I had to be better. If there was any hope of finding happiness again, I had to win the mental game.

Baby Steps

I often think back to the first time I saw my hands post-surgery. The tips looked like hard, black caps I could pull off one by one to reveal my real fingers underneath. The fingers on my left hand fared worse. My index finger contracted forming a hook I couldn't unfurl.

"I look like a monster," I cried to my mom.

That's a moment with which I'll never lose touch. To see yourself as a non-human. I felt the same emotion the day I looked at myself in the mirror and saw metal where flesh used to be. Instead of elation, all I felt was heat. An anger so palpable my cheeks flushed. I was looking into the face of a broken person.

I stood at the end of the parallel bars. The 8-foot walk seemed like miles. I slowly eased my weight off of my hands and sunk into my sockets. The pressure mounted in the ends of my stumps. A pressure I was sure the bones at the base of my legs couldn't withstand. I lifted my right foot, inched it forward and set it down on the linoleum.

"Remember to bend your knees, Christina," my prosthetist said.

Oh, that's right, I still have knees, I thought to myself.

Suddenly, I was a toddler again, learning the basics for the very first time. The movement was unnatural. There was no give in my feet, like walking in wooden shoes. No ankle movement either. How was I supposed to make this work? My internal dialogue was chaotic, but I forced a smile to spare my family any further grief at such a pivotal moment. After walking up and down the parallel bars a few times, my prosthetist placed a walker in front of me. Tennis balls and all. Lift, move forward, drop, step, step, repeat. After one lap, the atrophied muscles in my legs began to quiver, and I had enough. On the ride home, my dad and sister were all smiles. Inside, I cried. I honestly believed I would never walk on my own again.

PROTECT YOURSELF

Meningitis affects nearly 1,500 people every year, and 11 percent of those affected will die. Fifteen percent of those affected are adolescents and young adults. Among those who survive, about 20 percent of them will live with permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb loss. Meningococcal meningitis is often misdiagnosed because its early symptoms are much like the flu.

Health officials recommend routine vaccination at the age of 11 or 12 with a booster at age 16. Meningococcal meningitis is contagious. The bacteria are transmitted through air and direct contact with infected persons. Early symptoms might include sudden fever, headache, nausea and stiff neck.

The disease is especially prevalent among college students because of lifestyle factors such as living in close quarters, going to bars and irregular sleep patterns. Though the vaccine is recommended, there are three strains of bacteria the vaccine does not protect against.

Kent State does not require incoming students to have had a meningitis vaccine. However, students must disclose whether or not they have been vaccinated to live on campus.

Sources: National Meningitis Association and Kent State University Health Services

I was lost in self-doubt for the next few days, as I muddled through the pain that came with getting used to the legs. But with each new day, I could walk farther, balance better and wear my legs for longer periods of time. I began going to physical therapy three times a week. Each day brought a unique set of challenges, but the physical challenges paled in comparison to the amount of mental strength it took to pick myself up and push past each new wall.

I used to admire those who say they do not allow one trait to define them. I don't either. But in many ways, my story absolutely defines me, and I won't pretend it doesn't just to prove I'm not inhibited by my imperfections. Ironically, the missing parts make me whole.

Soon, I was setting foot on Kent State's campus, ready to begin another terrifying new experience. I arrived at Franklin Hall, two weeks before classes began for newspaper training week. I had contacted an editor earlier in the summer to inquire about how to work for student media. I wanted to dive in; no more baby steps. I walked slowly down the long hallway leading to the newsroom. The sound of my new peers catching up on each other's summer vacations and discussing the school year ahead escaped through the double doors. I paused. I took a long, deep breath to calm my racing heart. I looked down at my metal legs, exposed by my khaki shorts. As scared as I was to face the inevitable stares, hiding was not an option.

I lifted my chin, glued a smile to my face and sat down in the center of the room.

I turned to the person sitting next to me.

"Hi, I'm Christina."

This story originally appeared in the December 2013 issue.