Chapter 5 – Bullies and Doctors and Boys, Oh My!

Chapter 5 – Bullies and Doctors and Boys, Oh My!

Courage is not having the strength to go on; it is going on when you don't have the strength. --Theodore Roosevelt (1858-1919), 26th President of the United States

I was fourteen years old and halfway through my freshman year of high school when I started skipping school. I can’t remember exactly when the symptoms began; they just started one day and progressively got worse. I didn’t want to miss school. I liked school, but some mornings, no matter how hard I tried, I just couldn’t get out of bed. I would try to mentally force my legs to slide across the sheets and support me as I attempted to get up, but my legs felt foreign and detached from the rest of my body. I knew my legs were there. I could see and feel them, but the sensation was dull and almost numb like my legs were still asleep. Despite having mastered my mother’s handwriting and signature, I didn’t get away with skipping school for long. The school eventually called her, and she was pretty angry with me when she found out.

I tried to explain to my mother what I had been experiencing before I started skipping school, but she either didn’t believe me or was too busy to listen. The problem was that there wasn’t anything noticeably wrong with me. I didn’t have any visible wounds, I didn’t have the sniffles, a cough, or a fever to monitor, so when my mother looked at me, she saw me walking, and from the outside, I looked normal. She couldn’t feel how heavy my legs felt sometimes, like every step I took felt like I was trudging through thick mud, and the muscles themselves felt like a pile of spaghetti inside a bowl of jello. She couldn’t see, or rather, couldn’t hear, the thoughts that ran through my head when my mind tried to bargain with my legs to just keep walking when walking felt like such a challenge. I didn’t know how to explain it to her because walking isn’t something you think about; it’s just something you do once you know how.

I had hoped she would finally listen when I got caught not going to school, but instead, my mother thought I was staying home to avoid being bullied. There was some validity to her theory since I had been bullied throughout most of middle school by two girls in particular who didn’t like me and made middle school feel like my own personal hell. Most of their harassment was more passive, like “accidentally” bumping into me, making nasty comments, spreading rumors, or trying to turn my friends against me. However, the harassment escalated one day when they ganged up on me and took turns punching me in the stomach while one of their friends held my arms behind my back. Eventually, someone stopped them, and despite them getting into trouble, they didn’t change.

While I wasn’t the only girl they treated that way, I definitely felt as though they targeted me more than anyone else. I was also a bit of a wise-ass, so I am sure my mouth didn’t help my situation. I cried a lot during those years and didn’t want to go to school most days, but once high school started, I just stopped being afraid of them for some reason. Maybe since we became freshmen and were all the lowest species on the social totem pole, they didn’t seem as significant or important to me anymore. They still harassed me occasionally and sometimes waited for me at my locker, but I would either just make a smart remark or ignore them and walk away. It still hurt, but I no longer allowed their ridiculous behavior to ruin my day.

*

After practically begging my mother to take me seriously, she finally made an appointment for me to see a doctor. Now, let me preface this next part by saying that while I am sure most chiropractors make valuable contributions to the medical profession and the communities they serve, this doctor, this chiropractor, was a complete moron who seemed to like listening to the sound of his own voice more than actually listening to his patients.

After he examined me and I answered a ton of questions that I am sure he didn’t listen to any of my responses to, he told my mother and me that he thought I was experiencing growing pains. He then assured us that if that were the case, my symptoms would eventually go away on their own. However, in almost the same breath, he also insinuated that he couldn’t find anything wrong with me and wondered if I was faking my symptoms to get attention. My mother immediately jumped onto the second option bandwagon since she was convinced that I would do anything for attention. I was beyond frustrated. My symptoms were real, and I felt as though even if I screamed about them from the rooftops, no one would listen. When we left his office, I had hoped I would never have to see that doctor again.

*

A few more months passed, and despite my symptoms worsening, I completed my freshman year of high school and planned on enjoying summer break. I had always been an active child, running amok all over the neighborhood, playing tag, riding bikes, building forts, chasing boys, being chased by boys, etc. I played soccer in 7th and 8th grade and tried to play basketball and softball, but I wasn’t very good at either of those sports. I had also been taking dance classes since I was eight years old, and every year, I looked forward to the yearly dance recitals.

From a young age, I had always loved being on stage. Whether it was singing, acting, or dancing, I had always excelled at and absolutely loved performing. I had never experienced stage fright before, but with the yearly dance recital occurring about a month after school got out for the summer, I started feeling a little nervous that year.

On the day of the recital, I finally understood what stage fright felt like. I found myself plagued with fears that I wouldn’t be able to make it through all three of my dance routines. As the day progressed and I had made it through the first dance routine with few issues, I felt a sense of relief. However, my second routine, a more fast-paced and fun choreography paired with a compilation of music from the 50’s, did not go as well.

Six girls, including myself, dressed in bright pink poodle skirts, short-sleeved white shirts, and saddle shoes, peeked out from behind the curtains as we anxiously waited for our turn to take the stage. Finally, the music started, and that was our cue. One by one, we were supposed to complete three cartwheels each across the stage. It should have been easy, but during my second cartwheel, I fell, and no matter how hard I tried to get back up, my legs just wouldn’t let me.

I remember looking out into the audience when the music stopped and being blinded by the bright lights as the tears swelled in my eyes. I felt so embarrassed, but more than anything, I was angry and frustrated because I couldn’t understand what was wrong with me. My mother and dance instructor rushed onto the stage to help me, and I could immediately tell by the look of concern on my mother’s face that she finally believed me.

The following Monday, she made another appointment with the same idiot doctor I had hoped never to see again. At least during the second appointment, he took an X-ray of my lower back, and surprisingly, the images didn’t show growing pains or attention-seeking behavior but a herniated disc. Mystery solved, right? No, wrong. So very wrong. That herniated disc wasn’t even close to being the tip of the iceberg.

My mother and I left the chiropractor’s office, hopeful we finally had answers. So, the next step was to schedule an appointment with a neurosurgeon and have a myelogram done. For those unfamiliar with the term, a myelogram is a diagnostic test in which the patient lies on a tilting table under an X-ray machine. A dye is injected into the spine through a hollow needle, and as the table is tilted downward, the X-ray records images of the dye as it flows through the spinal canal. This allows doctors to look for any blockages or damage to the spine that could cause symptoms similar to the ones I was experiencing.

*

When the day of my appointment for the myelogram and the appointment to meet the neurosurgeon finally arrived, I was already two weeks into my sophomore year. By this point, my legs had become so weak that walking more than a few feet had become extremely difficult. I had also turned another year older, so I was now a fifteen-year-old girl who still didn’t want to be bothered by any of this. I had more important things to worry about, like boys and the fact that an incredibly cute senior named Derek, who also happened to be the captain of the basketball team, had asked me out. I was probably around 5’2 then, so he was at least a foot taller than me. He had wavy dark brown hair and stunning blue eyes, but his slightly crooked smile and deep laugh were his best features.

All I knew was that I needed to hurry up and get better because homecoming was just around the corner, and for the first time in my life, a “popular” boy had noticed me. It wasn’t that I was unattractive; I was actually quite cute, but I was also a bit of a nerd. I was in choir and drama club and played the flute in the school band. You know, all the “cool” extracurriculars. I had a handful of friends, but I certainly wasn’t popular. He and I were from very different social circles, so when he started talking to me in study hall and then asked me out, I was a bit shocked. I felt like I was in my very own version of Sixteen Candles, except Molly Ringwald wasn’t the star, I was, and I was about to win over the handsome, popular jock.

*

I had been dreading the myelogram since it was first explained to me. Still, I put on a brave face and kept hoping that at the end of this chaos, once there were no more doctors and tests, my life would finally return to normal. Before the myelogram started, meaning before the dye was injected, the radiologist decided to take a few X-rays of my entire spine so that the doctor would have images of my spine before the contrast was present. We didn’t make it to the dye being injected that day. When the radiologist saw the X-ray images, he immediately called the neurosurgeon and canceled the rest of the test.

Both my mother and I were nervous when we entered the neurosurgeon's office. He sat behind an enormous desk, and my mother and I sat across from him in a pair of oversized chairs that made me feel so small. I don’t know why I remember that part so clearly when I can barely remember what he said to us. Maybe because I didn’t quite understand what was happening, or I did and didn’t want to think about it.

After the cordial introductions, the doctor explained that the X-ray images showed an enormous tumor that appeared to be wrapped around my thoracic spine (the entire middle of my back), and it looked like it had spread throughout my chest cavity as well. He explained that my situation was out of his wheelhouse of expertise and suggested that the best place for me to go would be Children’s Hospital in Boston. Within days, we were headed to Boston to meet with more doctors and have more tests done.

I remember hearing my mother on the phone several times after we got home from the doctor’s office that day. I also remember hearing her cry a lot on those calls as well. At one point, I heard her talking to my dad over the phone. I couldn’t hear his side of the conversation, but I could tell that my mother was getting frustrated with him. My parents were divorced and didn’t really get along, so frustration on my mother’s behalf wasn’t that unusual. I didn’t want to hear any of it, so I went to my room to be alone.

Later that night, the phone rang again. It was Derek, the boy from school who had asked me out. He was calling to see if I was okay because he had noticed I wasn’t in school that day. I couldn’t believe he had noticed I hadn’t been there. I didn’t know what to say to him. I certainly didn’t want to be the weird girl with a tumor. He knew about the herniated disc, so I just left it at that and told him I had to go to Boston for more tests and wouldn’t be at school for a couple of days. Since the following day was a school day, he asked if he could come by after school to see me. Of course, I said yes.

We sat on the porch and mostly talked about school. When the conversation got around to him asking me when I would be back so he could take me out, I told him I would let him know how things went in Boston. Everything happened so fast after my initial appointment in Boston that I never did let him know. I don’t think I wanted to once I knew what was really going on with me. The last thing I wanted to do was scare him off. I just wanted to get better, and somewhere in the back of my mind, I hung on to the hope he would still ask me to homecoming. I didn’t make it to homecoming that year, and it took a bit longer than anticipated for me to get better and see Derek again.

*

The first doctor we met at Boston Children’s Hospital was a neurosurgeon named Dr. Scott. He was an older man with a slim physique, a balding head, and kind but wise eyes. My mother and I traveled to and from Boston several times because of all the tests I had to take. Not much was known about the tumor at this point other than it was estimated to be the size of a basketball, and they weren’t sure yet if it was benign or cancerous.

Eventually, an entire team of surgeons was assigned to my case, including a General Surgeon named Dr. Schamberger and an Orthopedic Surgeon named Dr. Rand. Since the Children’s Hospital was located in Boston and not far from Harvard, each of my surgeons constantly had an entourage of medical students following them around as well. It was all so overwhelming, and by the time the team of doctors had been assembled, I was rarely included in the conversations regarding my care or the discussions between my parents and the doctors to determine the best way to remove the tumor.

Within two weeks of discovering the tumor, surgery one of four was scheduled for October 5th.

*

I remember sitting in the lobby at the Children’s Hospital the day before my surgery while my mother filled out the registration paperwork. I remember feeling numb, like the depth of what was about to happen hadn’t really sunk in yet. I just sat there, staring out the window, thinking about how beautiful the lobby and the flower garden located just outside the lobby area were.

A couple of my friends had come over to spend the night a few nights before I was admitted to the hospital. My mother had cooked out and set up the tent in the backyard, so my friends and I could sleep outside, which was one of my favorite things to do when I had a sleepover. Since it was early October, there was a slight chill in the air, but we didn’t care. We stayed up all night talking about school, the latest gossip, and, of course, boys. I hadn’t heard from Derek since the day he came to my house, which was okay since I really didn’t want to explain what was happening anyway. When my friends left the next day and we said goodbye, it hadn’t immediately dawned on me that that might have been the last time I saw them. They all promised to come see me as soon as possible, but the hospital was almost two hours away, so I didn’t expect much.

I was assigned a private room on my first night in the hospital. My whole family came to spend time with me that first day, and my mother stayed the night with me. At some point that afternoon, a horde of doctors, including my three primary surgeons, crowded into my tiny room to go over the plan for my surgery the next day. I was scared, but more than anything, I was looking forward to getting everything over with so I could walk again. By the time of my surgery, I couldn’t walk at all, and a future confined to a wheelchair wasn’t really an option in my mind.

Early the next morning, a very tall man from Jamaica came to my room to take me to the surgery floor. I remember that I loved his accent and thought it was soothing as he made small talk in the elevator. Once we reached the double doors to the surgery ward, my parents kissed me goodbye and said they would see me in a little bit. I was then taken to the surgery room, which was absolutely freezing.

The mask that delivered the gas to put me to sleep was placed snuggly over my face. I started the countdown backward from ten. The number eight was the last thing I remember before the fight of my life truly began.