Chapter Five: Female Quasimodo

When I was 11-years-old, I was cordially invited to my uncle and aunt’s wedding in Hong Kong as their flower girl. Unlike most girly girls, I rolled my eyes when bright pink lipstick was slathered on to my pouted lips and cringed when the fluffy baby pink satin dress ruffled whenever I made the slightest movement. It was not my idea of fun at all.

Yet, I could not help but feel a bit of excitement when my many relatives and I gathered in the living room to watch the taped video of them proclaiming their love and union at their momentous wedding ceremony. I sat there waiting to see myself on screen with heart-pounding thrills and nervousness. It was my 15 minutes of fame, if you will. Those high feelings crashed to the ground when the camera zoomed on me as a pink and puffy ball on the screen. It was not my grand entrance in a swath full of pink that horrified me and made my eyes moisten with wetness. Nor was it the lopsided crown of roses that sat on top of my head that made me tremble. Rather, it was when I saw myself walking with a distinct and extremely crooked limp that my face turned an unforgiving shade of red. A hushed silence pervaded the living room as my family members and I watched the segment of me waddling slowly towards the Church with that limp. It was like watching a bad movie or a smashed accident on the highway; It was unsettling and disturbing to see, but you could not help but to stop and stare. The segment could not have lasted even two minutes, but it was a moment that was frozen in time for me. I was suddenly keenly aware of this limp and that a brand new health situation and physical abnormality had started and was ready consume my life. A pit formed in the center of my stomach.

Strangely, I did not feel any pain at all when I walked, or rather tottered from side to side like a small see-saw trinket toy. In fact, I always thought I walked in a “normal” way. After my first glimpse of limping on the screen, I shrugged it off as though it was nothing. I reasoned logically: “Naturally, there was no way that I could think straight, much less walk straight. After all, I was the flower girl for the first time in my life! I just walked weird because I was nervous!” This carelessness disappeared when it was more than obvious that the limp was worsening significantly as my school year forwarded on from 6th to 7th grade. My classmates took quick note of this physical difference, and so the laughter and mean teasing began. The boy classmates mimicked my limp, snorted, and scoffed aloud: “Hey, why are you limping?” They punched one another playfully and laughed like hyenas. Children are cruel and being different in junior high school is equivalent to complete doom and maybe even death. Everything is so much more magnified in either the best or worst of ways once the hormones kick in. A darkness of hatred and anger shot at them for their jibes and at the mystery of this new health condition that was slowly taking over my body and my life. If looks could kill, all my male peers would have dropped dead on the spot.

My Father and I did not want to solve this mystery. Ignorance is bliss, and too much knowledge is too much power that it knocks you to the ground and you just do not want to get up again. It was only one day and completely out of the blue that I found myself in an immaculately clean examination room with my Father pacing back and forth and biting the skin around his fingers and spitting the excess out anxiously. Glancing at my Father who was in his own little world, I thought as I studied the tiled floors: “This is not good.” We were there to see a pediatric orthopedic surgeon. She was a graceful gazelle who cat walked like a model on the runway as she came into the room. To me, it made complete sense that she went into the expertise of bones because it appeared as though she had the most perfect bone structure ever. She plastered my x-rays against the bright lights and then nervously ran her fingers through her cropped copper-colored hair. She took a deep breath, glanced at me with sympathetic and smoldering ember eyes, and then made full eye contact with my Father. I thought to myself: “Shouldn’t she be looking at me? This is my health, my body.” Before I could dwell more on this thought, she began to speak slowly and softly as she explained that this limp resulted from the Prednisone medication. While Prednisone had succeeded in keeping my first kidney transplant alive and well, it had also decreased the calcium and bone structure and strength in my left leg. The doctor said that my left leg was now shorter than my right leg. She explained that it would most likely worsen over time because I had to continue to take Prednisone to keep my kidney pumping and working. If I did not take Prednisone, my kidney was in severe danger of falling a part and the vicious cycle of hospitalizations, needles, crying, and torment would ensue. If I continued to take the Prednisone, my kidney function would last in the best of ways, but my hip and leg would fall a part. It was a no win situation. This graceful model pediatric orthopedic surgeon paused before ending that I would eventually have to undergo a hip replacement surgery. For now, she said that I was too young to have a hip replacement surgery because I was still growing.

I stared at her wide-eyed and awestruck. My immediate thought was: “Prednisone? That little, innocent-looking white round pill?”

I understood very quickly that finally achieving the dream and miracle of a kidney transplant did not mean that my health problems had come to an end. Instead, a new string of health problems were about to start and hit me full throttle. The medication side effects that I had to take to maintain my precious, first kidney transplant were about to smack me full force. Prednisone was the chief of medications in wreaking havoc on my body and life with first making me want to eat everything in sight and endlessly gaining weight and then causing my limp and hip problem. Prednisone was a complete devil in disguise. My love-hate relationship began with it right then and there in that sterile doctor office.

My Dad asked directly: “So, what is the solution here since she has no choice but to continue to take the Prednisone?”

Her solution was simple: Send me to a special shoemaker who could and would create “magical shoes” that provided the necessary support for my left foot and leg to be of equal position to my right leg. When I heard the words “magical shoes,” my ears and eyes perked up and the soured feelings towards Prednisone faded. I was excited and eager instead of sad and bitter. I began to picture a man in a red cape and a black top hat as he whipped out the miraculous and remedial glittering ruby slipper shoes. I slipped them on and the limp vanished into thin air. I could walk straight. I could be normal.

The magical shoe man did not exactly turn out how I imagined him to be. He had a dark moustache that turned up at the ends, fat protruding lips, dark and rather sinister eyes, and a rough and raspy voice. I gulped and my eyes bugged out with tension when he measured, probed, pinched, and turned my short in length, but fat in width feet. At the next visit, I fidgeted with anticipation at my beautiful new shoes. I dreamed of the ruby red sparkling shoes again or maybe cute ballet slippers or those even more adorable patented leather shoes that I could see myself tap-dancing to in a dizzy dance. The possibilities of cute shoes were endless! I grinned. He presented the shoes to me. I gaped in shock and horror. The shoes that he made were not glittery, sparkly, or beautiful at all. They were black blocked beasts that were hard, clunky, heavy—and simply and completely ugly. In simple terms: Completely unsuitable and impossible to wear at school and would bring my low social status even lower. No, even worse than the lowest of social statuses was the teasing, taunting, and cruel imitations that would follow me like a dark and relentless shadow for the remainder of my junior high school years IF I wore those ugly creatures on my feet. I could just see my girl classmates turning their noses up at my unfashionable and grotesque shoes and the boy classmates pointing and chortling. As these images invaded me, I knew that I could not tolerate my peaked puberty-induced peers pointing out even louder and prouder that I did not belong and how much of an outsider I was. The magical shoe man placed the shoes in my hands. The weight of them were overbearing that I had to place them on the table next to me. I was speechless for once in my life. I inspected the shoes carefully and with extreme curiosity. The right shoe looked fairly normal in the midst of its bulkiness, but the left shoe had an exaggerated heightened platform. The goal was that if my left leg was forced to the exact height to my right leg then all my hip problems would no longer exist.

The shoemaker looked at me with a triumphant expression: “Good shoes, huh?” His chest puffed out in pride. I hated to pulverize his ego, so I smiled weakly at him. However, I turned quickly to my Father, met his eyes, and shook my head to say: “I am not wearing those things!” I looked at the shoes once again and sighed in resignation and disappointment.

My Father pleaded with me to at least try on the shoes. He pointed out: “You won’t know unless you try, Mary.” I screwed up my face in disgust, groaned, and stepped into them. I nearly fell. They were like weighted barbells. Every step I began to tentatively make caused pains to shoot up, starting from the arch and sole of my left foot to my left hip. I bit my lip as if to say: “I give up,” but then I glimpsed my Father’s concerned gaze. I could not let him down. A dead-set determined fire in my eyes formed that said: “I am going to do this.” But, sometimes, it was accepting limitations that took the greatest strength of all.

I could not do it.

I was brought back in time to when I was a toddler. I was learning to walk all over again. As I practiced walking in the shoes more, the pain did not go away. It intensified. I told myself many times to stay patient and wait to see what happens, but every tiny step in those hideous clown shoes made me inhale sharply and my eyes water with overwhelming sharp pains that I could not withstand. It was like walking on knives. More than that, I could not and did not want to even imagine how the rest of my junior high school years were going to be. At age 11 or 12, I should not have to wear these cement blocks on my feet. If only I was not in junior high school yet, I complained inwardly. I ached for my childhood days when I did not care. I longed for the mere beginning of my junior high school years to end.

It turned out these all-mighty powerful shoes that hurled me into a tailspin of emotional turmoil and physical, knife-like pains had also somehow managed to achieve the impossible: Walking in a wobbly straight way rather than the completely crooked and Female Quasimodo way. I was not happy about this achievement. In fact, I was crushed. I did not want those shoes to work because then it meant that I had to wear them for God knows how long. One day, as I looked in the mirror to observe my straight walk that brought waves of pain, I asked myself: “Should I continue to wear these beastly shoes and endure the physical and social pain at school to eventually walk straight and be normal? Or do I ditch the shoes to not feel any physical pain at all and continue on with the social struggles of being teased, abnormal, and the full out Female Quasimodo?”

The answer was simple. I did not even need to think as I repeatedly writhed in pain with those shoes stabbing at my feet in every twisted way possible. I ditched the custom-made and hell shoes. I was going to accept my hip condition and limp. I was going to survive my pre-teen and junior high school years filled with the immature and silly school peers who were undoubtedly going to tease and taunt me. I was going to hold my head high with dignity as I slowly came to grips with the fact that my poor, aching left hip and leg was this way because of my chronic kidney failure and that devil-in-disguise Prednisone.

My Father had other ideas and plans. He saw firsthand how severe this limp was becoming. I was also sure that he sensed my social crisis at school due to my differences. We returned to the pediatric orthopedic surgeon, asking (and practically begging) for any other options. Her other recommendation? Crutches. She explained that the crutches would act as an additional pair of legs and balance me out. Within a matter of a short period of time, a shiny pair of silver crutches came to me and became my support system in every way possible. The left crutch was higher than the right crutch in order to try to balance out the length discrepancy in my legs again. With both crutches tucked under my arms, the left crutch moved forward then my left leg and then the right crutch and my right leg followed. There was a dull ache under my arms for quite awhile until I adjusted to this new walk, but I could deal with that dull ache rather than the ongoing pain of those shoes. I mentally prepared myself for the social disaster at school, but all of that was wasted energy and time. My classmates did not make fun of me with their usual mimics. Instead, they found my crutches lots of fun. They found other ways to torment me. The boys often snatched the crutches from where I had them propped up against and begin twirling them around. Some of them would write phrases and words all over the cushioned areas of the crutches. My feeble words of: “Give them back!” or “Stop!” fell on deaf ears. My face turned purple and red with embarrassment and anger. I preferred them to tease and copy my limp rather than play around with my shiny new crutches as though they were toys because then everyone began to stare awkwardly at me. I started to slightly dread each and every school day in fear of what mockery would occur that day, but I always purposefully masked my real feelings. Every single day that I went to school, I was a cheerleader in my own head with reminders and chants as to how lucky I was. I was lucky that my kidney was still working. I was lucky that I could still walk. There was always someone out there who had it worse than me, so I have no right to complain. At least the crutches were better than those blocked cemented and ugly shoes. I continued to hold on to these little positive tidbits. I was still smiling my pearly, white smile to the world. No one could break me, unless I let them.

Age 12: My crutches and me

But, by the time I was 12-years-old, my left hip and leg took a turn for a worst. The sharp pains that I did not feel and was certain would never, ever happen were turned on full blast. The pain began as a pin and needle feeling in my left hip, turned into a razor-sharp stab, and finally a numbness that left me exhausted and almost unable to walk at all. My crutches that I had just come to terms with were simply not enough assistance in walking. Walking for long durations of an hour or longer was getting to be an obstacle course that I could not even face, much less even complete. My hip was deteriorating faster than my Father and I could have ever expected. We returned to my graceful gazelle orthopedic surgeon again. Her last and final recommendation was for me to use a wheelchair when I had to walk for long periods as an addition to my crutches. Yes, a wheelchair. I never imagined that what began as a crooked limp would now confine me to a wheelchair. I thought the crutches and even those dreadful shoes were the bottom of the barrel, but when the doctor said “wheelchair,” my whole world crumbled and then crashed around me. It could not be happening, but it was. Tears slowly trickled down my face, but then quickened in speed until they were like gushing waterfalls. I broke down crying as my Father feebly tried to rub my back in soothing circular motions. A seething and sharp fury simmered in me.

I sputtered to my Father in between hiccups and jagged breaths: “Why me? Why can’t I just be normal? Why do I have to be different? Why is it that I have to be the freak and different one in my school? Why is life so unfair?? What did I ever do to deserve this stupid chronic kidney failure and now this hip condition? Why me??” My dear Dad’s hopeful and positive expression fell to pieces. He turned away from me as fast as he could so I could not see his crestfallen face, but it was already too late. I had seen that fallen facial expression. He tried to recover quickly by pasting on a weak smile on his face. He tried to stay strong for me. He sat with me as I cried and cried and continued on with my breakdown. He could not say or do anything to make it better. No one could. I immediately felt like a slave to my own body and health in that one split second of the announcement of a wheelchair. My destiny at school and life seemed to be laid out. I was different. I was a weirdo. I was a freak. Most of all, I was Female Quasimodo. I craved a bell tower that I could cower in, away from the world and from all these stinging realities. My only saving grace was when the pediatric orthopedic surgeon said that I was not going to primarily use the wheelchair.

Any wish, dream, or desire I had to simply be a normal pre-teenager or soon-to-be teenager was too much to ask for. I said that everything would get better, but the harder I tried to stay positive, the harder and nearly impossible it was. My optimism was no longer real. What started out as authentic positive vibes and an attitude had turned into lies and propaganda. I just could not muster the energy to flash a pearly smile, laugh, and say that everything was going to be okay any longer when no one and especially me knew if everything really was going to be okay. Would my hip or leg ever improve? Would I ever be able to walk without any devices helping me? Would I or could I eventually be taken off that deceptive Prednisone medication? Someday, one day, would I ever just be normal? I felt guilty for feeling angry and bitter about my worsening hip condition and even more dependency on other people and devices. I should have felt thankful to have survived Peritoneal Dialysis, Chronic Kidney Failure with a kidney transplant, and just to even be alive, but that feeling of gratefulness was slipping fast between my fingers. All these negative feelings were eating me up alive to the point that I could no longer identify who I really was or who I had become.

When I was first introduced to my brand new and gleaming navy blue wheelchair, I stared it down with disdain and doubt as if to say: “So, you are going to be my miracle cure for my hip that is just getting worse? I don’t think so.” It seemed to shine in the light in an inviting way saying: “Absolutely.” That wheelchair and I had a showdown. I squinted at it and made my determined decision right then and there: This wheelchair was going to simply be an addition to the crutches rather than a replacement. I absolutely refused to completely depend on the wheelchair because I was terrified that if I became too dependent on it that I would never want to get up and walk again or, even worse and something I refused to even think about, I would never return back to those days when I could walk pain free and normal. All those pulsating downtrodden feelings of fear, anger, and bitterness motivated me to endure the ongoing physical pain that occurred when I walked with the crutches for long periods. I was going to continue fighting and turn all that was negative into all that was positive. I was stubbornly and purposefully choosing pain and hardships over the wheelchair that would make my life easier, but would also make me feel like I was an invalid and a victim to my body and health. I would not give in, give up, or feel weak to my very own body. Easy was not always better.

At school, I continued on with my crutches and just gritted my teeth when any pain occurred. It came to a point that my wheelchair was only used for absolute emergency situations rather than as any secondary supportive tool that my orthopedic surgeon originally suggested. I deliberately only used the wheelchair for school trips that required long periods of walking or for outings with family or friends that required skyrocketing stamina that I was losing. When I was forced to use the wheelchair during those moments, I hated it with a vengeance. I could and did ignore the pitiful glances my way from my classmates or stares from strangers. However, I could not ignore how the world appeared when I sat in that wheelchair and I could not ignore the other side effects that occurred after I used the wheelchair. When I sat in the wheelchair, I felt tiny and my head spun and ached whenever I had to look up at everyone else who towered above and over me. My neck would also sore from looking up at everyone and my rear end formed a dull ache from sitting too long. My hands turned rough, blistered, and raw from rubbing against the wheels so hard and fast. I was always grateful when I was released from that wheelchair and had my crutches once again.

My only thread of hope I had left and grasped on to was that at least my life could not possibly get any worse now that I had that wheelchair to protect and confine me from my hip problems when they were intolerable. Guess again. Everything was about to get worse. Much worse.