Life Is Short (No Pun Intended) Read online

  Now, I would have to start there without my best friend and a roommate. I was definitely disappointed for both of us, but I knew I could do it. I hadn’t let anything hold me back yet.

  CHAPTER TEN

  Bill

  Brains over Brawn

  THE PROPORTIONS OF A Little Person are often different from those of the regular population. Most Little People stand approximately four feet tall, with some taller or shorter than that. Our dimensions vary greatly. Some are more proportionate, some are stronger, some have joint laxity (or overly loose joints), some have arthritis, and some aren’t able to walk due to the severity of their skeletal deformities. Depending on the type of dysplasia, other complications are part and parcel of the skeletal issues. For instance, with the type of dwarfism Jennifer and I have, a third of the people diagnosed will exhibit hearing or vision loss or both before adolescence. Another third will present with these issues before they are done growing (by approximately twenty-one years of age). And for the lucky one-third left, the statistical chances of congenital-related hearing or vision loss are greatly reduced.

  When I was eight, I had a very slender build, thirty-six inches tall and thirty-six pounds. But when I hit puberty at ten or eleven, I went from petite to massive for someone with skeletal dysplasia. I only grew about ten inches between ages eight and fourteen, but I doubled in weight. By high school, I was eighty-eight pounds with a forty-inch chest, and I stood forty-six inches tall. I was like Popeye, with tremendous upper-body strength.

  I was working out, so these numbers didn’t happen by accident. My gym class consisted of working out in the weight room for forty-two minutes a day with the “special” gym teacher, Mr. Musso. If the line was short at lunch, I would eat my French bread pizza and I would go back down to the weight room to lift for twenty more minutes. After school, I would train with the high school football and wrestling teams. At my peak, I could bench a couple of hundred pounds in the gym. I didn’t build my upper-body strength just to prove myself to my classmates. I needed it to get myself around. And, for the first time, I was able to excel in a sport. Actually, I was good at badminton, too, but that wasn’t as competitive as weight lifting.

  After that stint in the hospital in eighth grade where I was remanded to bed rest for thirty days, I didn’t have the ability to walk without crutches for the next five or six years. And because of those years on crutches, my back and chest just became huge. And with that many years with crutches, I learned a trick or two. I could lift myself off the ground, using only the crutches to walk.

  Meanwhile, my dramatic shift in proportions made finding clothes more of a problem. Casual clothes were okay. I wore mostly T-shirts, sweatshirts, turtlenecks, and jeans. In high school, my mom had a couple of suits made for me. I’d go and pick an adult-sized suit at Macy’s, and the tailor would have it cut down. The tailoring would end up costing more than the suit, so a $150 suit would be $500 by the time the alterations were finished. That was the price you had to pay to look good.

  I got along with most of my classmates in high school. I was friends with the smart kids because I was in a lot of enriched classes throughout high school. I got along with the jocks thanks to my time in the gym during and after school. I would pitch quarters with the burnouts while they smoked their cigarettes behind the school. I was also friends with the geeks, the class clowns, and the cool kids. And while I was able to easily navigate between different cliques, I never identified myself as part of any one of them. It appeared, to me at least, that everyone included my stature in their assessment of whether I was part of the group or just there for attendance. My personality was a bit more chameleon-like, but my stature made me different from everyone.

  It is sadly ironic that as teens, and even as adults, we often try to find our own identities by desperately trying to be like others and accepted by others. When you think about it, most of us spend that critical time of development trying to blend in with everyone else, not realizing that what we really want, and what is really in our very nature, is to stand out from the crowd. The qualities and characteristics that distinguish us from everyone else are the qualities and characteristics we will often go to great lengths to minimize or suppress for fear of being stuck with the most deadly label of all—“different.” Ferris took his “different” and ran with it, all the way to lip-synching the Beatles on a downtown Chicago parade float. I, like a lot of adolescents, tried to suppress and minimize my “different,” because, to me, “different” meant I was unworthy.

  My high school years were punctuated with good grades and lots of pranks and class clown behavior to garner attention. For instance, I had to ride the elevator to my courses on the second floor of the building, so my stepbrother and I may have sabotaged it a couple of times to get us out of class. There was also the time I locked the principal out of his office and took over the PA system. Of course, I got a day of detention for that. I was definitely a goofball.

  The “goofball” part was mostly for attention. I enjoyed making people laugh, but in reality, I considered myself an outsider looking in. If I went to a party, it felt as if I was looking in from the window. Over time, my attitude changed, too. I wanted to attend for the sake of attendance, but I didn’t want to be there, either. I probably tolerated the social awkwardness by overcompensating by drinking too much. I was lucky that I was funny, but I often wanted to be out of the party as quickly as possible, too. Like most kids, I drank in high school. Mom and Dad both knew about it, and they weren’t very happy. They tried their best to punish me and thwart me at every turn, but sweet sixteen parties were conveniently held where parents weren’t. I built up a tolerance to alcohol, but too often I would indulge in a foolish attempt to keep up with my friends or to escape from the party by overindulging and ending my party early.

  Believe it or not, I got into my first bar when I was only twelve years old. The sign over the door said “No admittance under the age of 25,” but I went in with a group of Little People after an LPA chapter meeting. These meetings were open to all ages, and they were not about recovery and AA, so if people wanted to go out for drinks or continue socializing afterward, they would. In fact, in my teen years, most of those in our chapter of LPA were of age and the whole point of the meeting was to decide where to go out for cocktails. My drink of choice was a bay breeze. Mostly juice, very little booze, but I just loved the fact that bartenders couldn’t tell if I was over or under age twenty-five!

  I started learning to drive when I was fourteen, even though the legal age in Suffolk County was sixteen. Cars had always been a fascination of mine. Driving was something I knew I could do well, ever since I had first sat behind the wheel of my go-cart. Of course, the only thing standing between me and the freedom of the open road was about ten inches of space between the bottom of my sneaker and the gas pedal. (Who uses the brake, anyway?)

  • • •

  TRUE TO MY age, my first driving experience ended with me in hot water. Mom had a company car she used for work, and another, slightly older car she had purchased a few years earlier, a silver Dodge Omni. It was an ugly four-door plus a hatch, and we affectionately referred to it as the “egg-mobile.” It was a weak 2.2-liter, four-cylinder engine. Zero to sixty in ten seconds! Anyway, Mom had left the keys to the Omni at the house and gone to work. I decided today was the day—I was going to go for a ride. I went out to the driveway, got into the driver’s seat, and started the car. Mom had let me “warm up” her cars for years, so I knew my way around the vehicle. I adjusted the rearview mirror all the way down, so I could see out of the back window while lying down on the seat, arms up toward the steering wheel and feet on the pedals. Imagine using the rearview mirror as a periscope with reverse as your only gear. I proceeded out of the driveway and began making my way down the block, backward. I noticed a car coming from the opposite end of the street. It was Mom, in her other car. She was home early. I pulled over, put the car in park and walked home to greet her and accept my punishment.


  It was clear that since I wasn’t going to get much taller, I would need to come up with a safer way to drive a car. When I turned sixteen, I reached out to the folks at BOCES. I had heard that New York State had a program for students with special needs called BOCES, the state’s Boards of Cooperative Educational Services. These schools are actually branches of the public school system and are not “special schools” per se. They offer an incredible number of courses and training that just wouldn’t be possible in a standard high school—unique, in-depth programs in the arts, vocational training, literacy programs, speech and occupational therapy regimens, and lots of classes for students with disabilities. Through BOCES, I was provided a drivers’ ed instructor who could teach me how to drive. I sat in the driver’s seat, and my first “legal” experience was using pedal extensions. I drove down the block from my house, made a right turn onto a neighboring street, and pulled to the side. My first half-mile in the car was jerky, unsure, and I was nervous. I didn’t trust my legs well enough to have confidence in them for something so serious. So I asked to switch to hand controls. I put on the blinker to merge onto the road again and away we went. It was as if I had been using hand controls all my life. It was smooth, my stops were perfect, and my control was masterful. It was weird. Even the instructor was a bit surprised at my performance. Like a proper teenager, I got my license as close to my sixteenth birthday as possible. Also like a proper teenager, I was a little reckless. Mom was generous and gave me her old Dodge Omni to use. It was a great car for a sixteen-year-old—it was a car, and it was mine. It afforded me the freedom all teenagers want. And I was a good—dare I say great—driver.

  Ultimately, I killed that little Dodge Omni by doing a neutral drop, while going in reverse down a hill at forty miles an hour. The tires smoked and screeched, and that was the last time that car moved any faster than your average lawn tractor. I retired Mom’s car to the driveway and sought out a new old car to abuse.

  In high school, there was a special program that helped kids with special needs interested in getting a job find work. At the job fair, I found a position I felt was suitable, summertime janitor in my old elementary school. It was a great job—manual labor throughout the hot summer in a building without air-conditioning. Our task was to clean the entire school in preparation for the following school year. We would clean and remove the gum from under the desks, dust everything, wash and paint the walls, strip and wax the floors, repair all of the lights, clean the bathrooms, and put a fresh coat of polyurethane on the gymnasium floor, among other things. My first summer there, we were a motley crew of workers. I wound up keeping the job after the summer. In fact, I worked all four years of high school in the same job, as an after-school janitor. I would push a broom, mop floors, wipe down twenty to thirty desks and counters in every classroom, and clean ten bathrooms every night, all while on crutches. I figured out a way to push a drag mop down the hall and pin one crutch under my arm at the same time. Looking back, I don’t know how (or why) I did it.

  I was also a volunteer at two hospitals in the area, kind of a male version of a candy striper. One of my favorite jobs was working at the live animal facility at Cold Spring Harbor Labs in Cold Spring Harbor for a couple of summers. On top of that, I worked in a gas station, which proved useful, since my cars were pieces of junk, and I was also able to avoid asking Mom for money. I was picking up lots of information about cars, my favorite hobby, to boot. I always liked tinkering with things. When I was young, I took apart and rebuilt toys. But I slowly graduated to bigger things, like appliances and engines.

  My height never held me back. If I wanted to take on a job, I did. If I wanted to jack up my car and change the spark plugs (weekly), I did it. The beauty of not being handed everything is you appreciate what you have and enjoy working for what you want.

  By the time my senior year came, I was definitely ready to finish it up and leave home for college. My grades were really good, my test scores were admirable, and I was in the top 10 percent of my class. I liked the challenging courses, especially the three years I spent in the Westinghouse Preparatory Class. The goal of the class was independent scientific thought in preparation for the Westinghouse Science Talent Search (now called the Intel STS). I accomplished more in that class than in any other class I took—figuring out unique ways to determine the amount of water contained in the average tomato, designing a self-sustaining environment for a Mars colonization project, and developing a renewable energy source employing carbon dioxide reformation and methanation, a project that went all to the way to the New York State Energy Competition finals. While I didn’t become a finalist in the Westinghouse competition, my project, which was a sociological study on the effects of dwarfism in deference to human development, helped me to better understand some of the challenges I would soon face as an adult, outside the protective walls of high school or my hometown.

  In my senior year, I ran for student council president and gave a popular girl in our class a run for her money. In the end, she edged me out and won the position by a fraction. Hindsight is 20/20, but our class would likely have benefited from my presidency, particularly for alumni-related activities. I think I would have been a better class reunion organizer, but that’s just me.

  When it came time to enumerate my extracurricular activities on my college applications, I needed extra sheets of paper. I was part of a group called Bring Unity To Youth (BUTY), an organization created by my fellow club members and me to help break down racial barriers. I was also a lead member of the Science Debate Team and part of both the high school band and the marching band on two instruments, the trumpet and the French horn, all four years. I even taught chemistry when our teacher, Mr. McCafferty, had to take a leave of absence to care for his ailing wife. He taught me the lesson plans in advance, and then while the substitute teacher babysat the class, I taught the lessons, so we could all pass the Chemistry Regents (I believe the topics were Stoichiometry I and II). So I had impressive assets going into the application process.

  I applied to seven schools, getting into all of them, except for Johns Hopkins. They all offered me scholarships, some full, some partial, but with enough money on the table to make the choice mine. I ultimately chose New York University in Greenwich Village for two reasons. The first was the scholarship. Nearly a full ride to a top institution! Second, NYU has many of its classes in buildings with elevators. Where most campuses are on acres of land, sprawling quads, and so on, the urban jungle made for less walking and greater convenience. The only accommodation I really needed, besides the elevators, was a footstool in each of my labs, biology and organic chemistry.

  I thought living in the city might be taxing, but when I first crutched the neighborhood around NYU, I felt great. I had never been away from home before, except for the hospital stays in Baltimore, so to go to school in the big city seemed like the adventure of a lifetime. I had only been to New York without a parent once before, on prom night, where our group of friends and respective dates went to the Catch a Rising Star comedy club to see a performance. Other than that, the closest I had come to Manhattan alone were the infrequent trips to Brooklyn to visit my aunt and uncle and a trip to see Joseph and the Amazing Technicolor Dreamcoat with my aunt Diane as a wee lad.

  My social habits carried over to college. The problem was that in college, it was easier to get away with dumb behavior, because I wasn’t accountable to my parents. My downward spirals were certainly more aggressive, so if I was in a depressed mood, I was way more depressed, and having unfettered access to bars and alcohol didn’t help.

  College for me was both better and worse than high school. It was one of those things where I had the freedom to be who I wanted to be, but I wasn’t so sure I liked who I was becoming. I was hanging around with people who were good looking and did well in school seemingly without trying. My trying to keep up with this crowd might not have been that healthy for me. Everything seemed to come easily to them, which made me feel inadequate
. Of course, you find out later on that not everybody was as happy as you thought they were. But to me, college was about getting good grades and having sex as often as possible, and I wasn’t doing either to the degree that I wanted to.

  I selected biology as my major and chose to live in the dorms at Goddard Hall on the corner of Washington Square East and Washington Square South. Most of my classes were held in the Main Building on Washington Square East and Waverly Place, literally one hundred feet from door to door. I did go to class some of the time, but like most kids in college, my schedule was more aggressive than I could keep up with, so I slept through classes that started before 10:00 a.m. My focus was not where it needed to be, but instead was directed at making friends, partying hard, “experimenting,” and finding a girlfriend. Going to class seemed to be the last thing on my mind most of the time.

  Parties were different in college than they were in high school. Going to bars was easy, my friendships were new, and the landscape was very fresh and exciting. But the attitude most people had about my stature wound up being eerily familiar to me—I was often rejected, just like in high school. Being in the biggest city in the world and being in Greenwich Village did have its advantages. No one stuck out as the coolest, the prettiest, or the smartest. Everyone was different, or was trying to be. And in the world where everyone was trying to be unique, I just wanted to blend in. Unfortunately, my unwanted and unearned celebrity transferred from high school to college seamlessly. I was called “midget,” I was teased, I was ignored, I was threatened, I was chased, I was beaten up.