My parents agreed on joint custody, which had David and me going back and forth on weekends. My father insisted we stick to the schedule even when I was home and recovering from surgery. Having to change houses in that condition was difficult and upsetting. To complicate matters, not long after the divorce, my father got remarried to his longtime secretary, so I had to stay with them and all of her cats! Life was crazy during the divorce years.
Things at home had been changing, too, and although I was aware of what was going on, I felt more distant from these changes. More than ever, I immersed myself, both academically and socially, in college life. No sooner had I settled myself somewhere else than my parents announced that they were getting back together after years of separation and divorce. Both of my parents had moved on and had been seeing other people. My father had been with a new wife, Susy, and Mom had been engaged to one of her high school boyfriends from the distant past, Matt. I had gotten to know both Susy and Matt well over the years and had accepted their relationships with my parents. In fact, for the most part I was just happy if they were happy. No more fighting was welcomed in my world. However, my father had recently been diagnosed with bladder cancer, which had caused them both to have an “epiphany moment.” They had come to the realization that they had made a mistake in divorcing.
As I was immersed in my academics, I am not clear on all the details of their reunion. As I remember it, I came home for summer vacation and they announced they were getting back together. My parents were trying to make it work.
For my younger brother, who was still in high school during all this, this was a dream come true. He had been so young during the divorce that it had been very hard for him. However, I don’t think he remembered as well as I did the tough times that we all had gone through. When I heard the news that my parents were getting back together, I was concerned that they would still not be happy. The years surrounding the divorce were very tough, with quite a bit of drama. I didn’t want that to happen again. Of course, if my parents were going to be happy together again, then great, so be it! All I wanted to do was keep focused on school and hope for the best for them. Amazingly, my parents have been back together ever since.
The surgeries and recoveries were long and lingering, but getting my cast off was the best thing that could happen to a girl. There was the seventeen-hour drive back to Baltimore, as I still wasn’t auto train material, but this time I would look forward to the haul. I’d have to spend another three to four weeks in the hospital for intensive physical therapy, but that was doable after what I had just been through. First, I’d have to get a fresh pair of sneakers, something Dr. Kopits required, and something I looked forward to. A new pair of sneakers meant a day pass to leave the hospital to shop after my cast was removed so I could try on shoes! Day passes were the best, and my mother always made the time away from the hospital fun. Sometimes, she would even sign out another kid my age to join us for lunch and a few hours of people-watching down by Baltimore’s inner harbor.
Dr. Kopits’s rule that we have fresh sneakers to begin our recovery made sense. By habit, people walk with a gait without really giving it much thought, so if you are someone who drags your feet or walks more on the inside of your feet, you would wear out the backs of your shoes more quickly, whereas others might wear out the toe or outside edge. An old pair of sneakers would already carry the mark of a potential bad habit, which could adversely affect the gait going forward. Any excuse to buy a new pair of shoes was welcomed by me!
Essentially, after each surgery during physical therapy, I would have to learn how to walk again. Having been immobilized and in a cast for so long, I was always stiff, and even the slightest movement was difficult and often excruciating. If I had been in a full-body cast, it could take a week of physical therapy just to get to the point where I could sit up completely. The first day, I would just be starting to sit up, just getting cut out and propped at an angle in the whirlpool tub to get rid of as much dead skin debris as possible. The first thing I did after getting my cast removed was go directly to the whirlpool. It was heaven! Not only had I not had a real bath in six to twelve weeks or more, but my skin was so sensitive from lack of contact that just touching my legs felt like a full-body massage. The second day, I would be in the whirlpool again, maybe this time with a little bit of bending of the knee. Everyone was required to do physical therapy twice a day, morning and afternoon, every day of the week. The goal was to regain my range of motion and build up all my muscles, which had atrophied to the point that I lost most of my strength while I was in my cast.
I would start off doing the harder part of physical therapy right from my hospital bed, the first-level leg exercises to build my abductors, quads, hamstrings, and calf muscles. After a few days, I would graduate to the designated physical therapy unit on the first floor, which had two evaluation rooms, a line of fully cushioned therapy tables, and exercise equipment—everything from exercise steps, to parallel bars, to stationary bicycles, to a wall of resistance stretch bands and weights. There were also several whirlpool tubs for warming up our tense muscles before we started. As you progressed, you would get to start afternoon pool time—walking for the first time in the water, where you were weightless.
I preferred my afternoon sessions to my morning sessions, because the afternoon included time in the shallow, heated, glass-enclosed pool. In the pool, I was weightless, and even though I was working out against my own body weight, I could move around much more freely and without the pain I experienced when exercising on land.
Dr. Kopits wouldn’t discharge me until I could walk confidently on crutches, go up and down a flight of steps with crutches, and master typical daily living activities such as putting on my socks and shoes, taking a shower, going to the bathroom, and tending to my personal hygiene.
Eventually, he would give me clearance to return to my normal life. Typically, I would go back home using my crutches for about two to four more weeks until I had forced or willed my way off them.
Whether or not school had already started, after we returned from Baltimore my mom and I would hit the malls, trying to find clothes for the new school year. It was a challenge to find clothes that would fit me that were stylish and not juvenile or babyish. We could be at several malls all day and still come up empty, but we would head out the next day to keep our mission going. My mom was an absolute hero on these expeditions. She knew how frustrating this was for me, trying to be fashionable with my unusual body, and she never tried to hurry me along or talk me into getting something that wasn’t a really good choice. I loved how generous she was with her time with me during our shop-till-you-drop outings. We’d find a nice place to have lunch halfway through the day, discuss items I needed to fill my wardrobe, and figure out a way to efficiently travel to the stores where I usually had the most success. It was almost like a true treasure hunt to find exactly what I wanted and needed.
Finding Gap Kids sometime around the age of thirteen changed my world! All my classmates shopped at the Gap, but their clothing was too big for me. Gap Kids had the same styles, only in smaller sizes. On my first visit there, I got a pair of white khaki pants, a white button-down shirt, and a yellow sweater. At thirteen, I had just become the clothes connoisseur I still am today. When we found something that worked, my mother would learn to buy it for me in every color. Button-down shirts were the kicker, especially once I got a chest. Sadly, there is still not a Gap Kids shirt out there that can accommodate a pair of boobs!
Who knows if it was the many trips for new sneakers after surgery or just an innate love of fashion, but I am probably most fond of shopping for footwear. Shoes, of course, have also been the most difficult part of my wardrobe to fit. For much of my childhood, I had to wear lifts in my shoes to keep my legs equal in length and maintain proper alignment of my hips and spine. If I bought a new pair of shoes, I couldn’t wear them right away, because I had to have the lifts put in. I also had to wear heel cups, because my ankles were so flat,
and they curved out where they should have curved in. Over the years, Dr. Kopits had tried experimental surgeries on my feet, and I now have an arch on one side. Sadly, we never got to the other foot. But all that was okay. After all I had just been through, I didn’t mind a little lift in my shoes and a kick in my step!
CHAPTER EIGHT
Bill
I Will Marry Her Someday
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 beg
inning 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.
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