The Gift of Fire (5 page)

As I got older, my horizons would expand even further when a friend took me on a day trip to go whale watching on the New England coastline, or when someone who heard about my love of basketball invited me to a Boston Celtics game. But those early trips through the tunnel with Shriner Bob stand out in my mind.

It was during my exploration of the hospital that I began to wrestle with deep philosophical issues five-year-olds have no business thinking about. Sometimes I’d pass through different wards in the hospital and see kids curled up in their beds with their heads buried beneath their blankets. They’d just lie there for weeks, never looking beyond the foot of their beds or acknowledging that there were other children who were suffering just as much as they were on either side of them. To be sure, they were in some level of pain, but for the most part their afflictions were being treated. I could see that what was trapping them in their beds was not physical pain but fear. They couldn’t accept whatever injury had happened to them and didn’t know how to cope with the personal battles ahead. Instead, they retreated beneath their blankets.

Being intimately acquainted with the challenges a young burn victim faces, I was empathetic when I saw these kids. But as I grew older, I’d see the same attitude everywhere I looked in the world, and not just in the hospital. I realized that whether we are 4 or 44, we are responsible for making choices about how we deal with difficulties—we can face them head-on, or we can hide.

I made a choice at a very young age to confront the world and not hide away just because I was afraid of something. It was perhaps a more practical decision than a courageous one; I mean,
look
at me! Even back then, I knew I’d never be able to hide what happened to me or conceal the way I looked. Years later I saw a movie—which went on to become one of my all-time favorites—called
The Shawshank Redemption,
in which the lead character says that the course of everyone’s life is determined by one simple choice: get busy living, or get busy dying.

At five years old, I chose to get busy living.

O
THER LESSONS WOULD PRESENT THEMSELVES
to me at Shriners Hospital during my return visits. As I said, I learned early on the folly of viewing yourself based on how others see you. My first inkling of that truth came when I noticed the way parents of other, less severely burned patients looked at me.

You may find it hard to believe that discrimination based on physical appearance would exist on a burn ward, but believe me, it does. As early as age four, I remember noticing the looks and hearing the whispers when I’d walk by the bed of a new arrival on the ward. “Thank God—at least our child doesn’t look like that!” one mother said once. Another time, a family literally backed up against a wall when I wandered past them. Most of the time I just heard gasps of horror as I approached, or snickering and “Tsk-tsk” behind my back. These reactions stung.

Ever since I’d been discharged, my parents had kept me close to home for the most part. Home was safe: Mom and Dad protected me from the judgmental eyes of the public, and my brothers—with the exception of a “no roughhousing” policy—treated me as they always had. Now I found myself being confronted by prejudice in the very place one would expect the most sympathy and understanding.

Those upsetting reactions didn’t happen often, because my mother was with me most of the time. Mom protected me like a mother bear and was fierce with people who treated me unfairly or with disrespect. Yet the cruel looks and cutting remarks on those few occasions when I was alone in the hospital troubled and confused me. I couldn’t understand it—every kid on the ward was scarred or disfigured in some way, so weren’t we all the same? What was it about the way
I
looked that made grown-ups back away in fear or even say mean and hurtful things?

At first I was taken aback by their attitude and stewed about it during the many long days I spent alone in the germ-free isolation room after surgery. Somehow, and I’m still not sure how, my young mind was open and versatile enough to believe that there was nothing wrong with me; if there
was
something wrong, it was with the adults who’d treated me poorly.

I studied my reflection in the mirror—and finding a mirror on a burn ward is not an easy task—the way an artist would study his subject. The longer I looked at my face, the more pleased I became with it. I appreciated the way I looked and the fact that I had, for starters, two holes in the center of my face instead of a nose. I was unique! Eventually, I decided that it didn’t matter what strangers thought of me. Everyone who knew me loved me, and I was determined to love myself, too. To hell with what other people thought!

Of course, I was just a kid and hadn’t experienced the harsh reality of life yet. That would come a little later, when I entered the dog-eat-dog world of kindergarten.

Chapter Three

A New Thumb, and New Challenges

When I first arrived home from my initial four-month stay at the hospital, my family had to adjust to having a delicate child in their midst. Before the accident I’d been a bouncy, resilient kid who clamored to be in the thick of things. Now things were vastly different. Dad and Mom put my two big brothers on high alert: they could play with me but had to be careful not to knock me over, nor could they haul me around the house as they often did before the fire. I was still a very sick, severely injured little boy who was extremely fragile.

At first, my family had to do everything for me. Mom, quite literally, became a nurse to me. She changed my bandages several times each day, spoon-fed me, helped me go to the bathroom, and was my main link to the world around me.

Still, I was an energetic youngster and curious about the world. The fire hadn’t burned away my desire to be part of everything that was going on in my midst, and I was included in all the family activities (even if everyone had to be supervigilant about my safety and keep an extracareful eye out if I wandered off somewhere in the house). Sure, I had weekly sessions with a physiotherapist and had a gazillion doctor and hospital visits, but thanks to my parents’ and brothers’ total acceptance of me as an equal member of the family, I felt like a normal kid during those first couple of years back home.

Of course, I was far from normal.

By the age of two or three, most children have mastered the simple everyday tasks people perform a hundred times a day without thinking about them. Picking up a fork, combing one’s hair, pulling on a pair of pants, and the like are automatically done without a second thought. But for me, those everyday tasks became gargantuan undertakings. At least they were at first, when I was trying to do things the way everyone else did them, which was impossible.

Take using cutlery, for example. I must have tried to pick up a spoon to dig into a bowl of pudding a thousand times before it became obvious that without fingers, I wasn’t going to eat like everyone else did. One of my physiotherapists tried to remedy that situation by fastening a strap onto my wrists and sticking a fork under the right wrist strap and a knife under the left one. It was a total disaster. Either the utensils dropped to the floor or the chinaware did.

I was born with a deeply rooted independent streak, so not being able to do things for myself was very troubling. I kept trying to do everything on my own by copying what everyone else did, and I kept failing. Finally, I decided that if I couldn’t do things the way “normal” people did, then the normal rules didn’t apply to me. This was an incredibly important lesson for me to learn at an early age, and extremely liberating!

I glanced at the ends of my arms and told myself that if I didn’t have fingers, there was no point in acting like I did. Instead, I’d start working with what I had—I’d simply use the ends of both of my arms to pick up my fork and bring food to my mouth. Success! At that moment, I could feed myself, and my entire future was suddenly changed. I would no longer be dependent on either the kindness of strangers or the goodness of my family. I would now take care of myself.

Next, I realized that if I could manipulate a fork with my two arms, then why couldn’t I do the same with a pen? Soon I was doodling and eventually writing by gripping a pen between both arms. Then I discovered that by using my mouth and wrists together, I could button my shirt. Before long I’d learned how to do just about every daily task all by myself: I could pull on my pajamas, slip into a T-shirt, and zip up a zipper. I could also toss a Frisbee and swing a baseball bat. I could even use a bow and arrow on family camping trips.

I may not have looked particularly graceful doing most things, such as using my mouth to yank a button through a buttonhole, but I didn’t care what I looked like. What mattered was that I was doing almost everything on my own and in my own way … except tying my shoelaces. No matter how hard I tried, I couldn’t grasp those narrow laces and pull them into a knot. While shoelaces were a source of constant frustration for me, I was proud that I’d accomplished so much and mastered so many other everyday challenges.

Then I turned five. That’s when the doctors told me that they thought they could successfully build a “thumb” on my left hand. As I’ve already mentioned, I’ve had scores of reconstructive surgeries since the fire, but the series of operations in which my thumb was constructed stands out most clearly in my mind because it changed my life in so many wonderful ways, allowing me to accomplish more than anyone ever dreamed possible.

Believe it or not, I hated the change at first. It had taken nearly three years after returning from my initial stint in Boston to become independent performing most daily tasks. But after my new thumb, I had to learn to do everything all over again! It was like being sent back a few grades in school and told that everything you’d learned up to then was all a lie!
Start over, kid! Do it again!

Actually, the fact that they figured out how to build me a thumb from my own flesh and bone (and a little bit of steel wire for good measure) was pretty amazing. The procedure was complex and involved separating my first metacarpal from the rest of the bones in my left hand, elongating it with wires, and then slowly “twisting” the bone over time. I had at least five separate thumb surgeries, and after each one, I had to wear a metal cage over my hand. The doctors at Shriners called it a “hay raker” because it looked like the rake farmers used during harvest to collect (you guessed it) hay. The doctors also harvested my own skin to graft the new thumb, which eventually allowed me to grip and hold things quite firmly.

As I said, though, I had to relearn everything I’d already accomplished and was pretty upset about my new digit at first. It seemed as though I’d gone through a ton of work up to that point for nothing. My doctors sent me to physical therapy to learn how to use the thumb, but I refused to cooperate at first. I had been getting along fine without one and hoped that if I just ignored it, it might go away. But it
didn’t
go away—and as time went by and I got used to that thumb, my whole world opened up.

I
T WAS DURING THE NEW STRUGGLE
to master my thumb that I first began to notice God in my life. Of course, just like when I was in the hospital and intuitively sensed that I was a spiritual being, I wasn’t actually thinking about God specifically. What happened after I started using my thumb is that I caught a glimpse of the possibilities life held in store for me—or for any of us—when fear is put aside and we open ourselves up to the universe. I became aware of the soul’s desire to be inspired and to achieve a dream. In short, I began to
realize
God without
understanding
it. For me, “God” was the force pushing me from within to get the job done and move my heart and mind forward. I developed a belief that I could run headlong and headstrong toward any challenge with assurance and confidence. It gave me an immense feeling of freedom.

Until I looked down at my shoes.

Tying your than you think. usually spend weeks learning how to do it, they then have it down pat for the rest of their lives and never give it another thought. My experience, as you can imagine, was a little different. Even with my new thumb, the task of tying my shoes was more difficult and more frustrating than anything I’d had to endure up until that point.

Ironically, while my new thumb was opening up a galaxy of possibilities for me, the fact that I couldn’t tie my shoes haunted me like a demon. My inability to perform this task created such a deep sense of personal failure in me that I secretly began to view it as a kind of character flaw.

My parents thought they’d addressed the problem when they brought home loafers, slip-ons, and Velcro-closing running shoes for me. But those shortcuts just intensified my embarrassment; I was ashamed to be the only one in the neighborhood wearing Velcro sneakers. Still, I wasn’t about to let my shoelaces mock the fresh sense of possibility my new thumb had given me. Instead of admitting defeat, I promised myself that no matter how long it took or how difficult it was, I’d practice tying my shoes every day of my life until I succeeded. At five years old, I made tying my shoelaces my mission in life.