It was very painful, because Dr. Kopits did it when I was awake. In fact, it was a nightmare, as I was already in so much pain. Here he was, sticking six- to eight-inch-long needles into my leg, then injecting dye into it, and then manipulating it. At one point, I flexed my quad muscle so tightly that I bent the needle while it was in my leg. But it had to be done, so we both persevered. Dr. Kopits attempted to drain the fluid he found in my hip while performing the arthrogram. He was able to remove nearly three cups of synovial fluid before he stopped, as my screaming necessitated the procedure’s end. He resumed the next day, when I was under anesthesia.
After the procedure, I landed in a hospital bed on thirty days non-weight-bearing bed rest. The timing couldn’t have been worse. The eighth-grade dance was coming up, and I was stuck in the hospital. I had even gotten a date and gone in on a limousine with my stepbrother and another friend, Glen. I had paid for the tux, the corsage, and my portion of the stretch limo with money I had been saving from mowing lawns. So, now, I lost the money, I didn’t get to go on the date, and my stepbrother and friend got to use the limo for the four of them instead of the six of us.
Well, realistically, my “date” was kind of a stretch. There had been a girl I wanted to take. She was a cute, petite little seventh grader. I had asked her to go to the dance with me over the phone, and she had said yes, but that she would have to talk to her mom. When she laid down the receiver, I could hear her mother saying, “That is not that short boy, is it?” Her mom quashed it because of my size. The feeling I got hearing that reminded me of my first “girlfriend,” who kept our relationship for nearly three periods of school before the peer pressure related to being associated with me got to her and she broke up with me. Of course, I shouldn’t make too much of it. After all, in middle school, having a girlfriend meant having a crush on someone and asking her to be your girlfriend, maybe obligating her to go to a dance with you, but nothing more.
Now the girl I had asked out hadn’t rejected me, but her mother had. I ended up inviting Doreen, a Little Person I had met through Little People of America who was a few years older than me and lived in Selden, a couple of towns over. Doreen had said yes, but I knew she was doing me a favor. I didn’t think she really liked me. She was one of the first people I had a crush on who was a Little Person. She was in eleventh grade and I was in eighth grade, so being with her at the dance would have been a little awkward for her anyway.
But going to the dance was not going to happen. I had to be 100 percent non-weight-bearing—I couldn’t stand up, I couldn’t get off the bed, I couldn’t go to the toilet, I couldn’t look out the window, and I couldn’t go home. All I could do was lie in my hospital bed, 250 miles away from my family and friends. As if that weren’t bad enough, the little bums, aka my friends, called me from the limo on the night of the dance to gloat. “Wish you were here,” they yelled into the phone.
• • •
I HAD NO friends and no family in Baltimore, and I was miserable. I completed all of my homework for the remainder of the year, watched a lot of movies, and sulked. I was so frustrated with my circumstances that I took out my frustration on one of the nurses taking care of me. I yelled at her and smacked my backscratcher against the bedrail. For that, she took away the A/V cart, raised my bed to an extreme height and unplugged it from the wall, turned off the lights in the room, pulled the curtain, and closed the door. It was a horrible feeling. Everything was totally out of control, I had no recourse, and I had nobody to tell. It just couldn’t get worse.
My hip never did get better. It would not be coaxed back into the socket, and for the next two years I was on crutches. By the time I got to tenth grade, both hips were in need of surgical repair. My right hip had become dislocated and the left was partially dislocated.
So, when I was fifteen years old, Dr. Kopits recommended we try a tricky reconstructive surgery called the Durke procedure. The goal is to reshape the femoral head and the socket of both hip joints. Very invasive, very painful, and a very long surgery—also very often unsuccessful. But it was used as a last-ditch effort to avoid early adulthood hip replacements on both my hips. These bilateral hip reconstructions were huge surgeries, ten to twelve hours each. I had to be fitted for a “bean bag,” a kind of orthopedic prop to help keep you in one place without pressure sores developing while they are leaning on you and cutting open your leg. So there was lots of preparation, four or five weeks in the hospital, a full spica cast, then ten to twelve weeks in the cast, and another ten to twelve weeks’ worth of rehab after that.
The ten or twelve weeks in the body cast were at home. My house had two stories, and all the bedrooms were on the second floor. Mom always set up my hospital bed in the living room, which was generally off-limits to kids. It was saved for holidays and special occasions such as Christmas and times we had company at the house. Other than that, we weren’t given full access, so being able to sleep in there was kind of a treat. We had a den adjacent to the living room, which was where the TV and couches were and where the family hung out. So I wasn’t really encroaching on anybody’s normal living space, and my mom could conveniently slide the entire hospital bed behind the wall if she wanted me to go to bed.
As I got older, I figured out a way to just pull the whole bed with me in it back to the den, so Mom gave up after a while. If I wanted to watch TV until one o’clock in the morning, there wasn’t much she could do to stop me.
I spent most of my recuperation period in the hospital bed. I had a triangle that I could pull myself up with, and I had a hospital tray to keep my high-in-demand sundry items such as multiple issues of Mad Libs, my urinal, a box of tissues, and my CB radio. I would do most things on my stomach, such as eat, do homework, play video games, and talk on the CB. I washed my hair in bed by using a large plastic bag, like a garbage bag, and leaning a little bit out from the mattress. I did get out of bed daily. We had a reclining wheelchair that allowed me access to the other rooms on the first floor. Navigating through the narrow thresholds between rooms was always a trick.
I even performed my frog dissection at home, in my cast. Mr. Berry, my tenth-grade biology teacher, had brought the frog to my house, along with the wax-filled tray, pins and flags, a scalpel, and a pair of scissors. We kept the frog in the fridge overnight so I could complete the task the following day. Needless to say, Mom was not happy with Mr. Berry or me. Eventually my cast would come off and life would return to “normal.” As you might imagine, Mom was as anxious as I was for me to complete my stint at home and start my therapy—but most of all, to stop dissecting amphibians and leaving them in the fridge!
CHAPTER NINE
Jen
No Date for the Dance
THE HARDEST TIMES FOR me growing up as a Little Person were during my coming-of-age years, those interminable teenage years that few of us remember fondly. These were the years when it seemed very important to fit in, be included in the big social events, and of course date a little. It was difficult never having a date to the middle and high school dances. I still went as part of a larger group of friends, and that was fine, but when the slow songs came on, I’d end up sitting along the side of the gym. I usually tried to find someone else who was also on the sidelines to talk with, but with the loud music and height discrepancies, that wasn’t always easy. Over time, I realized there were other ways to enjoy attending dances and social functions without a date—be the party planner! So I became active in student government. Because I was the class vice president or secretary and in charge of planning the prom or fall dance, I had to go, date or no date. When the slow songs came on, there was usually a “job” to do: check on food, the DJ, or decorations.
I remember coming home after one high school dance and crying profusely, having been the only girl there who didn’t have a date. I went into my parents’ room and collapsed onto their bed. “I am never going to get a boyfriend, and no one is ever going to kiss me!” I ranted in despair.
“What are you crying a
bout?” my mother demanded in a “why are you feeling sorry for yourself?” tone. “You are so lucky, and you have so many wonderful friends. There is so much going on for you that is good, and sitting here sulking is a huge waste of time.”
My mom was always tough, mostly in a supportive way. It seemed her way of dealing with my teenage angst was with tough love, which she hoped would translate into thick skin. “Stop having a pity party!” she’d say, almost making me feel bad about feeling sad. Even though I knew that was just her way of trying to deal with my emotional pain, it could sometimes be hard because at that time, that moment, all I wanted was just one night to sulk. But my mom would list all the things I had to be thankful for: my health, my academics, my friends. Just because I couldn’t get a date to the dance, it was not the end of the world. I should evaluate my priorities and get perspective, and I shouldn’t really cry over something as unimportant as a date to a dance. “You have plenty of time for that,” she’d reason. “You don’t need to worry about that now.”
I am sure it was really hard for her to see me feeling rejected or sad, so she tried to encourage me to be very tough. Being stoic was actually her way of supporting me. Both my parents always pushed me to not let my size get in the way of anything I wanted. My mom has always told me, “Jennifer, you can do absolutely anything you want.” She truly believed it, and because she did, I did, too. It didn’t mean I didn’t have my fair share of good cries alone at night. Fortunately, in the light of day, things always looked brighter.
• • •
AT SCHOOL, I didn’t let my short stature stop me from becoming a member of the cheerleading squad in the seventh grade. I even found the nerve to try out for the freshman squad when I moved from St. Charles to Bishop Moore High School in ninth grade. To this day, I still can’t believe I made it, although I think they had a “no cut” policy and anyone who tried out made it. The following year, the whole cheerleading thing was becoming less pep club and more competitive sport, and I had found new interests, such as student government, so I didn’t try out again. I didn’t think I was cut out for something that was too hard physically. I stayed active doing other things instead.
Although there were a handful of kids who switched to public school going into high school, most of the kids from St. Charles went to Bishop Moore High, the only Catholic high school in Orlando. It had quite a few students, as all the parochial schools in the area fed into it. Luckily, it was actually located on the St. Charles property, so I didn’t have to travel any farther than I already did. It was beside a lake, and we had mass under the pines there every Friday. It was truly a beautiful campus.
I was never really in the popular crowd, but of course everyone knew who I was. I did have a great group of friends. Some of them were the more studious type, like me, and others more eclectic individuals who were not afraid to be their own person. I was quite friendly with everyone. I was someone who could hang in different circles if I needed to. I liked it like that. I could be as involved or uninvolved as I wanted. I wasn’t interested in drinking and all that other stuff so many teenagers dabble in. I never tried a single drug, and my first sip of beer wasn’t until college. I was a “good girl” in high school. I was fortunate in that nobody would bully me for being a goody-goody.
At Bishop Moore, I got involved in lots of extracurricular activities, including meetings of our Christian community service association and other clubs and organizations, that took place after school. I have always been a bit of a social butterfly and loved going out. Being involved in all these activities gave me an excuse to be social and have fun with friends.
Although procuring dates for functions within my school didn’t often work out, I did have a date for one dance in middle school, arranged in part by my parents. After my “no date ever” breakdown, my mom had introduced me to another young man my age with SED from our Central Florida Chapter of Little People of America (LPA). Years earlier, my parents and I had been involved with the local chapter. Usually, these gatherings had been social get-togethers like a potluck dinner at someone’s home or outings around town. Sometimes, we’d play mini golf. However, as I got busier with school and with my summers of surgery, our participation in LPA had become less and less frequent.
Now that I wanted to have a “date,” I was willing to become involved in LPA again. It seemed to be a pretty common theme within LPA that young people got reinvolved or involved for the first time when the goal was to find a date or mate. I ended up going on a blind date with a boy named Norberto, who was about my age and lived about an hour and a half south of us. Even though his name was Norberto, everybody called him Alberto, except for my grandmother, who called him Alfredo. His parents drove him to Orlando, and we went on a real date, first to dinner at McDonald’s and then to a movie, The Naked Gun. Okay, before judging, McDonald’s may not be the most romantic spot for a first date, but we were only thirteen and accompanied by my dad. We had such a nice time that I then invited him to go with me to the homecoming dance, which he accepted. I wore a black and white party dress for the occasion. At the end of the night, he gave me a peck on the cheek. He was cute, nice, and well-mannered, but his undoing was giving me a piece of jewelry etched with the insignia of the Playboy Bunny. That was the end of that.
Bishop Moore High School, like St. Charles and the other parochial schools, didn’t have the resources that the public schools in Orlando did. The popular public high school had its own theater, a marine sciences department with all the latest technology, and a connection with NASA, so students could take really exciting electives. My school offered just the basics, but it did do the basics really well.
We didn’t have air-conditioning or an elevator, either. Even with the Americans with Disabilities Act, which passed halfway through my time in high school, this was a private school, so it didn’t have to be in full compliance. The school was only two stories, but there were lots of steps, even on one level. Because steps were so difficult and taxing on my legs, someone would often carry me up the stairs between classes. Usually, it was one of our younger teachers or my good friend Chetna. She was a petite girl herself, so it was amazing that she could even lift me up.
Academically, Bishop Moore was very intense. In ninth grade, I pulled my first “all nighter” with Chetna studying for Mrs. Thanski’s world history final—an all-essay exam. I studied my butt off all four years, taking four AP classes in my senior year. That was the year I got my only C, which was in AP calculus. Our teacher, Miss Brown, would say, “If you don’t get it, you don’t get it.” Eighty percent of the class got a D on the midterm. Even with my disappointing final grade, I still got a four on the nationwide AP exam, allowing me to get college credit for that course. By the time I got to college, I had enough AP credits to be almost a full year ahead.
In my junior year, I started looking at colleges. I always knew I was college-bound, but I had to choose a school that would be the right fit for me. I really wanted to go out of state, but my parents preferred that I stay close. I really liked Johns Hopkins, especially as I thought I’d end up in the sciences and was familiar with it, having been a patient there all those years. For most of my childhood, I had loved marine science and wanted to be the next Jacques Cousteau. When I was eleven, I was so obsessed that for my birthday my family redecorated my bedroom in an underwater theme, with pictures of sea life on the walls, statues of manatees and stuffed dolphins and whales on the shelves and surfaces, and a marine-themed Ken Done comforter and matching sheet set on my bed.
My mother, though, was not a fan of the idea of my becoming a marine biologist. “I’m afraid you would be shark bait,” she joked. I think she truly feared my being eaten by a shark or a whale. Of course, she also knew that although I loved the water, I was never successful at truly learning how to swim with my head above water. She was happy when I started seriously considering the University of Miami, not because it had a great reputation for marine science, but because at least it was in the same
state. Aside from her fears for my safety on a Calypso-like boat and the physical demands of being a marine biologist, she also worried I wouldn’t be able to support myself, because there is not a lot of money in that field. My parents wanted me to become a geneticist or get a PhD, something where I would be using my brain and not my body. I think because my mom spent so much of her work life waitressing, a physically demanding job, she never wanted a similar future for me, given my physical limitations.
In the end, I did choose the University of Miami. It had a great marine science program and gave me a substantial scholarship. Also, Chetna, my best friend, was going to be there, and we had agreed to be roommates, so I wouldn’t have to start off with no friends. The beauty of having Chetna as my roommate was that she already knew the campus. She had spent her senior year at the University of Miami as part of a special dual study program that enabled her to earn credits as a high school senior and a college freshman at the same time. Technically, she was still a member of our senior class at Bishop Moore and took part in our end-of-year ceremonies, but she had already been at the University of Miami the year before.
High school graduation was a blast. All my relatives were there for me, including my mom, my dad, my brother David, my grandma, and Aunt Chrissy. The graduating class wore white caps and gowns for the ceremony. Needless to say, my gown needed alterations. We gave the company my measurements, and they basically took an average white gown and shortened the arms and the length, but didn’t adjust the width, so it looked like a halter top for an angel. My grandmother wound up altering a new one for me, so I could receive my high school diploma looking dignified, in a gown that fit me. That was when I learned “custom ordering” did not necessarily mean custom.
Besides the ceremony for the entire senior class, there was a smaller celebration for everybody who graduated with honors. Both Chetna and I received honors and awards. In the middle of the festivities, I was floored with some really bad news. Chetna had just learned that she was not going to be at the University of Miami in the fall. This was devastating news for both of us! We were best friends and had supported each other through many challenging times in high school.
Life Is Short (No Pun Intended) Page 9
