WHEN I WAS TEN, I met Jen for the first time. I had had a single leg osteotomy a couple of months before and I was in a partial hip spica cast, which meant that on the leg that was operated on, the cast went all the way down to my toes, and on the other leg the cast went down to my knee to aid in immobilization. The cast still went up to my rib cage, with a space cut out for bathroom purposes. I had to be immobile and lying down for three months, but unlike many of my prior surgeries, this time I had one knee that I could move around a bit more and scratch without the aid of a hanger.
The hip spica cast was incredibly uncomfortable, and I was incessantly itchy and miserable. It was hard to sleep, but I’d try to be on my side, with one leg up against the wall, and then on my stomach, and eventually on my back once more.
I went back to Baltimore to be liberated from the cast. That was an experience in itself, riding in the back of the dark metallic blue ’78 Oldsmobile Cutlass Supreme in a full-body cast. We had a couple of station wagons when I was growing up. I’d lie down in the back on a crib mattress because I had to be flat. The mattress, which had a bed sheet and a fuzzy blanket, was placed on top of the rear seats, which folded flat.
There I’d be, lying on a crib mattress in the rear of the station wagon with no seat belt, a forty-pound kid in a fifty-pound lump of plaster going seventy-five miles an hour down the turnpike for the five-hour drive. I’d have my bologna and American cheese sandwich, a ginger ale, and my portable urinal in case I needed relief.
I wasn’t always on my back in the car. I’d rotate between my back and stomach, like a small chicken on a rotisserie, but it was something I had to do to avoid pressure sores. The roof of the car wasn’t very high, so once in a while I would whack my cast during my rotation. In a hip spica cast, your legs are spread out as far as they can go, and then you have a piece of two-by-four wood that is plastered into the cast that keeps you locked in a big triangle, like a big Y. It provided structure to the cast and also served as a way to help lift me when needed. To rotate, what you normally did was some sort of slick “slide” maneuver, kind of like flipping an egg over easy when you didn’t want to break the yolk, a really quick “flip.” The further out from surgery I was, the easier moving around on my own became. After a while almost anything was possible, from flipping over to getting in and out of the fully reclined wheelchair to get around the house.
Trips to Baltimore to get the casts off were infinitely better than going in for surgeries. Getting out of the cast wasn’t that complicated. The doctor uses a cast saw, which looks like something in a carpenter’s toolbox, a small circular saw with a vacuum attachment to catch the plaster dust. Although it makes an enormous amount of noise and can be very frightening, the blade works by vibration, not rotation. When it is put against the hard plaster surface of the cast, it vibrates through the material. However, it can’t cut the soft tissue underneath, because even if it does touch the skin, it stops vibrating because there isn’t enough resistance. The worst it can do is give you a minor burn.
There is one particular cast removal story I am fond of. I had gone to the hospital after a long stint being in the cast at home to finally have the cast removed and begin rehab. The cast removal room was basically an exam room with a table and a cast saw mounted to the wall and a very large trash receptacle for the cast material. I was wheeled into the room and put on the table, disrobed, and the doctor had begun cutting when a girl about my age suddenly (and without an invitation) entered the room. Her name was Wanda. I had met Wanda a couple of times before, so we had a level of familiarity and comfort with each other. She had been in the hospital for a few weeks for rehab. She was a huge fan of Kenny Rogers and had a major crush on Dr. Kopits. She barged into the room to serenade him with her karaoke-style rendition of a Kenny Rogers song—and didn’t care that I was in the room or what clothes I might or might not have been wearing! I quickly covered my privates with my folded gym shorts and turned a few shades of red.
Wanda’s impromptu concerts aside, it was always great being cut out of the cast. It was cold at first. My legs would be hairier than ever, thanks to the humid and still environment inside a cast. They would be stinky and pale in color, skinny and itchy. Almost immediately after being cut from my shell, I would get placed in a whirlpool bath set at a balmy one hundred plus degrees. There, I’d watch my dry skin flakes float around on top of the water and do my best to begin moving again. It was relief, grossness, and progress all at once.
I knew the best way for me to handle these surgeries was to try to make parts of it fun. If I didn’t know all the patients on the unit already, after a couple of days I certainly would. And as I grew up, my interest in the opposite sex grew as well. Two North was a great place to be if you were a Little Person with a growing interest in flirting with members of the opposite sex, too. In fact, it was one of the only places on the planet that teenagers who were short in stature would be congregating in the same place and dealing with similar circumstances. One of my first teenage crushes was on a girl named Nicky. She was the same age as me, hailed from the West Coast, was cute and funny, and laughed at all of my jokes.
But Nicky wasn’t the only girl in Two North. There was also a girl named Jen I was about to meet. She had just had a surgery—for what exactly, I didn’t know. Dr. Kopits was so amazing that each of his patients received a uniquely tailored operation designed specifically for him or her. He had personally trained all of his staff—his nursing staff, nurse practitioners, anesthesiologists, everybody who worked with him—on how to work with his patients. The level of complexity and sheer necessary trauma to our bodies was so extensive that it demanded everyone’s best efforts every day they came to work.
Anyway, Jen was in a private room in the haze of post-op medication. I, on the other hand, was feeling great. I was out of my shell, sitting up and riding around in my wheelchair, humming along with tunes I was playing on my Sony Walkman and feeling the freedom. The wheelchairs on Two North served patients that were in hip spica casts as well as those who were in the hospital for rehab and able to sit up. The wheelchairs had no arms and could shift from upright to nearly flat with just a couple of twists.
When you are finally free from a spica cast, you feel great. You want to talk to everyone, flirt with everyone, laugh, and play. When I rolled into Jen’s room, I didn’t realize she was in such pain. It was totally customary to pull into other people’s rooms and say, “Hey,” but Jennifer was miserable. She angrily grumbled something, and I can only presume that her mom or one of the nurses told me to leave. So, I did an about-face and went into the next room to the next victim of my joy. I don’t remember seeing Jen again during that trip.
• • •
FAST-FORWARD TO THE eighth grade, where girls were on my radar. I wasn’t sure they liked boys on crutches, and I certainly didn’t like being on crutches either. However, the year before I had had surgery that had not gone exactly as planned. Surgeries were always risky, but I was always willing to try. After the surgery, I went to intense outpatient physical therapy two or three times a week. I was supposed to wean myself off the crutches. My physical therapist encouraged me to go at my own pace, but I often depended on my parents to encourage me and stay on top of my rehabilitation, particularly the exercises I had to do at home between visits to the outpatient PT department at the local hospital in Port Jefferson. This time around, my dad implored me to try walking without the crutches I had been leaning on since being liberated from my plaster prison. At first, the idea of walking without the crutches seemed to work. I was walking without any aids and, while it hurt to do so, I was beginning to see progress.
Right around then, my mother’s friend and our former babysitter Audrey offered us the use of her motor home at a campground she owned, and my mother, two brothers, and I took up residence for a long weekend getaway. I wasn’t really happy we were going, but because Mom wanted to do it for my brothers, we went.
Always resourceful and ready for action, I asked Audrey if I could work at the campground’s general store. I would do just about anything to make the time pass. And making a few bucks in the process didn’t hurt either. Audrey loved the idea. She gave me a job where I did anything needed. I helped customers—sold the bug spray, citronella candles, and propane—and lifted everything, carrying bags of ice and moving stuff around. We returned home on a Sunday and on the very next morning when I woke, I couldn’t walk.
One of my hip joints had filled with synovial fluid, much like “water on the knee” but on the hip. Basically, my hip’s synovial fluid, which typically helped cushion it, had built up and inflamed the area to the point where my hip literally was pushed out of its socket. However, I bit my lip and thought I’d just grin and bear the pain, even though I couldn’t move.
“What happened?” my mom asked from the top of the stairs. “What did you do?” I hadn’t done anything. I just couldn’t walk without writhing in pain.
“Well, if you can’t walk, that is obviously a problem,” she scolded. “We have to get you down to Baltimore.”
So she made a phone call, and the next day we hopped into the car for the trip to Dr. Kopits’s office. There, he did an arthrogram, which was like a moving X-ray, where they stick needles in your leg in order to fill the space around your joints with dye to show the contrast between the bones and soft tissues. Once the dye is in place, the doctor could visualize the joint movement and see where the problems were.
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!