MOST SCHOOL-AGE KIDS REALLY look forward to summer vacation and those crazy lazy fun-filled days of July and August, but I often feared and dreaded the last day of the school year. That was because most of my surgeries were scheduled for the summer. As my classmates were gearing up for days at the shore or a week or two at summer camp, I was en route from Orlando to Maryland for orthopedic procedures and six to twelve weeks in either a leg or full-body cast, and then a return trip to Baltimore for more weeks of physical therapy. It wasn’t uncommon for me to undergo several consecutive orthopedic corrective surgeries in one summer, because often so much reconstruction was needed that it would have been impossible or dangerous to attempt it in one surgery. My surgeries could last anywhere from six to twelve hours at a time.
My dysplasia was more complicated than most cases, so I had many more surgeries than many kids with other skeletal dysplasias. By the time I was eighteen, I had had twenty-two surgeries, including one for the placement of thoracic scoliosis spinal rods in my back when I was fourteen and many osteotomies on my knees, hips, and ankles. My last “reconstructive” surgery was in college, and then I had a relatively calm period until I was twenty-eight and had hip replacements while I was doing my pediatric residency.
A huge chunk of my childhood was spent anticipating, undergoing, and recovering from surgery. We would make the decision to have surgery as early as five or six months before I would actually have it. I would see Dr. Kopits in January, and we would schedule a procedure for the summer. I can’t recall how explicit Dr. Kopits was when he described what I could expect, but he knew not to tell me too much, for fear of making me more anxious than I already was. He had a warm, positive bedside manner that made everyone in the family feel comfortable that everything was going to go off without a hitch. As I got older, I just knew what was coming. It was kind of a no-brainer. My main concern was how many surgeries I would have, whether I was going to be in a body cast or a leg cast after surgery, and whether I would miss any school. I had my preference. “Please, just make it a leg cast,” I’d plead, always pushing for the option that would at least keep me from being fully prone and plastered from head to toe for six to eight weeks.
The type of cast I got depended on the surgery. If Dr. Kopits was operating on my hips, I would end up in a full-body cast, known as a spica cast. I was more likely to have a leg cast when he operated on my knees and below, but even then he might put me in a body cast. I think he was worried that little kids liked to move around too much and we could inhibit the healing and potentially mess things up. Each surgery would involve breaking many bones, so stability and alignment during healing was critical. Dr. Kopits was a little old school and believed that the hip spica cast was more stable and better in the long run.
Being confined to a hip spica was not much fun. It was a plaster cast that went from right around my belly button all the way to my toes. My toes would be peeking out, and my legs would be spread apart with a bar, like a two-by-four, wrapped in plaster of Paris. It was a great tool for my parents to lift me, because it was actually plastered right into the cast and was very secure. There would be an oval cutout around my bum that was open from the front to the back so I could pass urine and have bowel movements.
When I was really young and in and out of body casts all the time, Donna, my primary nurse, loved to joke around with me about the “taping of the buns.” This was a “ritual” a few days after surgery. She’d come into my hospital room after my surgery, hold up a roll of pink tape, and announce the inevitable. The pink tape was a waterproof tape that the nurses would have to mold around the opening in the cast to protect it from getting wet. Things weren’t as high-tech back then, so “waterproofing” was literally putting one strip of pink tape at a time all the way around the entire border of the cast’s “bathroom” cutout. This way, if you soiled, it wouldn’t actually soak into the plaster of Paris and smell and stink and stay wet for the next six to eight weeks. The tape could even be changed, if necessary, without having to do anything to the cast.
Donna was my super-heroine, my super-nurse. All the primary nurses had huge roles in a patient’s post-op and recovery regimen. They worked closely with Dr. Kopits in terms of care plans, from medication issues to meals to morning baths and hygiene. Even though they were charged with more than one patient on the floor at a time, they were as close to a private nurse as you could get. Donna, my second mother, seemed to be with me every waking hour.
Surgery in general was rough for me. I was always scared, but I would try not to think about it too much. Each spring when I had a surgery planned for the summer, I would begin my ritual of counting down the weeks before the big trip to Baltimore: “Oh, my surgery is only twelve weeks away. . . . Oh, it is only three weeks away.” I knew it was coming, but by counting I felt I was in more control than if I completely ignored it.
My mom was a straight-shooter, a no-nonsense person. “Everything is going to be okay, and we’ve got to do it,” she’d say to me without an abundance of emotion. Of course, I knew it had to be hard for her watching me being rolled toward the operating room surrounded by a surgical team on a gurney. She tried to hide her fear, especially from me. But, during my eight- to ten-hour surgeries, she would pace in the waiting area, desperate for word on my status. Sometimes my dad was with her, other times one of my aunts. Probably too many times, she was alone during these summers of surgery. My parents knew that skipping these surgeries and opting for a more conservative treatment approach was not an option. They had met children who had not had any orthopedic care, and most of them had debilitating complications from their skeletal dysplasias, sometimes resulting in shortening their life span. For example, their scoliosis might be so bad they would be unable to walk, eat, or even breathe on their own because their distorted skeletons put too much pressure on their lungs and diaphragms. My parents knew they were incredibly lucky to have found Dr. Kopits and his team. Before every surgery, right before anesthesia, he would try to comfort my mom and at the same time distract me with silly jokes. As I became older, I came to notice how on the morning of surgery, he was not only the compassionate and dedicated surgeon I had grown to know, but also a serious surgeon with his “game face” on.
As I got older, even Dr. Kopits’s reassurances could not stop me from panicking. Starting around middle school, I could become paralyzed with fear at what might happen. “Oh, my goodness,” I’d say to myself, “this might be the end. This might be the time I don’t make it. How many surgeries can one person have and still come out okay every time?” I would be lying on the operating table as they were giving me anesthesia, desperately trying to be positive. Okay, just try to imagine yourself . . . and I would think of milestones in my life I wanted to achieve, then even bigger milestones. Can I imagine myself graduating from high school? Can I imagine myself graduating from college? Can I imagine myself getting married? Can I imagine myself being a mom? When I couldn’t imagine, really visualize any of my fantasies, I would think, Well, that is because I am going to die, because I am never going to experience it. It sounds very morbid now, but that was what would consume me as I lay on the operating table, looking up at all the eyes above the surgical masks. Whenever I had trouble visualizing my future, that was my sign that this surgery was going to be my last. I couldn’t tell my mom, though, because I was even more afraid that if I said it out loud, it really would happen. I knew she would say, “Don’t be ridiculous,” just to make me feel better, and that was not what I wanted to hear.
I still do this visualization routine even to this day, when something scary or big is happening. For example, when Bill had his first surgery after we got married, I felt almost too lucky to have found this love of my life. When he had surgery, I would force myself to visualize: Okay, he is going to come out, he is going to be fine. I would have to tell myself that over and over. I have gotten better about it as I have gotten older. Actually, I do this when I am on a plane and there is bad weather, because I hate to fly. I think to myself, Okay, can I visualize myself landing and just calling Bill and saying I landed safe? And sometimes I can and sometimes I can’t. It’s when I can’t that I start to hyperventilate.
My parents, especially my mom, always tried to build me up right around the times of my surgeries. She would always try to plan something fun for me to look forward to either before we left for Baltimore or after we arrived. It could be a week at the beach with my aunt Barbara and uncle Jack in St. Petersburg, which I loved, or a big party for my school friends and me.
One year, she threw an amazing luau party, a full-on genuine luau in our backyard! My mom had started waitressing at the Polynesian Village Resort at Disney, and she knew all the staff, so she got everybody to come over and do a real Polynesian performance at my party. Basically we had a live Walt Disney World–quality luau show in my backyard. We had kids who weren’t technically invited hanging off the fences trying to see the fire dancers, and I mean climbing up anything they could climb to get a view. There was a DJ running the music, and my mom brought in a huge grill to prepare the food. One of her girlfriends even made me an official luau skirt.
In the photos of me, my one leg is completely bent. That pre-op leg looks horrible to me now, but I was so thrilled showing off my luau skirt that I wasn’t self-conscious. I see the pictures now and recall the greatest presurgery party any girl could wish for, thanks to my mother.
• • •
WHEN I WAS an only child, often both my parents accompanied me to Baltimore for surgery when they could, but after my brother David was born, typically just my mom and I made the trip, while my dad, Aunt Chrissy, and Grandma stayed home with him. My mother did not like to fly, especially after one particularly scary flight that had us flying through heavy turbulence in a thunderstorm. That was a flight to Baltimore after my cervical spinal fusion with my aunt Barbara. Aunt Barbara didn’t get on another plane for over thirty years due to the trauma from that flight. Fortunately, I was too young to remember. Back in the 1970s, plane crashes were not as uncommon as they are today. Given her fear of flying, my mom and I would often drive to the Amtrak auto-train station in Sanford, Florida, not far from Orlando, where we’d check in the car and board the overnight train to Lorton, Virginia, right outside Washington, D.C. From there, we’d drive the couple of hours to Baltimore.
Once in Baltimore, my mother and I would try to have our traditional presurgery dinner with Dr. Kopits, which always made me feel as if I was as special as it got. It was almost as if there weren’t anything inauspicious looming in my future. I was a person, not a patient. I think because I was one of Dr. Kopits’s first patients with skeletal dysplasias, he and my mom became very close. We’d also try to get to a Maryland crab restaurant with Donna, my primary care nurse. Sometimes, Diane, Dr. Kopits’s nurse practitioner, would join us for fun, too, and we’d spend hours laughing and catching up. Diane had also become a very close family friend. She was Dr. Kopits’s right-hand woman, always keeping up with all his patients and helping us with the medical and social challenges we faced. To this day, I feel extraordinarily lucky to have had Diane, Donna, and Dr. Kopits as such close friends—basically family—in our lives.
Mom and I would stay a couple of nights in a hotel near the hospital. After my surgery, my mom always stayed with me on a cot in my hospital room, no matter how long my stay was. If my dad was with us, he typically stayed in a hotel somewhere nearby. There was a Ronald McDonald house nearby, which was available for the parents or families of patients, but my dad liked the hotel idea better, for both privacy and amenities. For one of my early surgeries, my dad stayed in Reed Hall, a dormitory on the Johns Hopkins Hospital campus, where I would later live my first year of medical school.
Post-op was probably the most miserable time, especially the first couple of days. I was so nauseated and sick due to the pain meds (opioids), which did not agree with me, that I would be vomiting for two to three days straight. They didn’t even really take the pain away, they just took the edge off and sedated me some. My bones had just been surgically hacked apart, and every nerve in my skeletal system was complaining. Even post-op, I was at huge risk for blood clots, infection, or nerve damage, and some of those were life-threatening. More than fear of complications, though, I just hated the nausea and vomiting and never got used to it. I’d usually be in the hospital two to three weeks before I was able to be discharged home safely.
My mom and I got to know lots of other kids being treated for skeletal dysplasia by Dr. Kopits who were on this same kind of summer surgical schedule. We were all about the same age, and our skeletal problems usually manifested at the same time. There was Jenny, exactly my age and with the same first name. Jenny was from Idaho, had blond hair, and had SED like me. We both had a fracture that wouldn’t heal in our humerus bones in the exact same spot. Dr. Kopits called us twins. Besides “growing up” with Jenny, I remember Martha, Mark, David, and Vincent by name, too. And then there was Benji, who was a little younger. He ended up being my first kiss many, many years later when I was in medical school. We all knew each other because we crossed paths and shared surgical journeys. The fun part after check-in for surgery was figuring out who else was going to be on the unit at the same time and how long they were going to stay. It was a two- or four-week summer session at Camp Why-Do-We-Have-to-Be-Here.
My post-op hospital stays varied in length and depended on what procedures I was undergoing. My mom was always pushing for me to be discharged ASAP, as she was missing work, my dad, and my brother. I have to admit that I was always relieved to be on my way home as well, even if I was still struggling with pain. Some of my buds would be gone already, some in the middle of their stay, and some just checking in, but I would see them soon enough, and I had paid my dues.
My mother and I would typically not take the auto train home. Instead, she would drive the seventeen hours back to Orlando on a route she had memorized, so that she knew exactly how long it was going to take us door-to-door. If I was in the body cast, I wouldn’t be able to sit up, so I would have to lie down for the entire trip. My mom was a pro at positioning me in the back of the SUV, supine and safe. One year, she even agreed to transport our friend Donna’s Weimaraner from Baltimore back to Florida with us, so I had to share my space with a seventy-five-pound hunting dog. Donna is an avid Weimaraner owner and breeder. My mom would stop at roadside rests to put me on the bedpan, and when she was done with me, she’d walk and water the dog. Crazy times!
Recovery time at home meant long periods of frustration and pain. I wouldn’t be strong enough to turn or flip myself for several weeks, so I would just scream for someone to come and help me. I would cry out at least five times a night, because I would just be so uncomfortable and in so much pain, completely unable to help myself. Even if I wanted to go to the bathroom, I had to wake somebody up. The feeling of not being able to control your own destiny on a day-to-day basis was very trying as I got older.
When I was really young, I would sleep in my parents’ room during these periods. They would put a mattress on the floor and cover it with padding, blankets, and pillows, and they could get to me right away. They were incredibly patient. They’d work around me and prop pillows in weird ways, and say, “Okay, let’s try it on your back.” The cast had my legs sticking straight up in the air, and I couldn’t turn my neck because of the surgical fusion. I couldn’t lie flat on my belly and turn my head, so I became very good at leaning, half turning my torso and trying to find a comfortable stretch for my neck. It was pretty hideous. There was basically not much my parents could do, but they tried. And fortunately, most nights they were patient. I know I am not always an easy patient to take care of.
When I was older and recovering in my own room, I had a TV to keep me from being bored out of my mind. It didn’t always work. I’d be stir-crazy to get out of the house. “Take me to the movies, take me to the grocery store. Just get me out of the house!” I’d beg. Even if my request wasn’t practical, I could not stand all those hours of being cooped up at home and found it incredibly depressing.
My parents tried to take me on outings occasionally, but it was a huge undertaking, with many complicated details, especially if I was in a body cast. The more restrictive the cast, the harder it was. I remember going to the movies a couple of times, and my dad setting up the wheelchair on an angle in the aisle, so I could be on my back and still be able to see the film. Sometimes, I’d go with them to Home Depot or Costco if I were in just a leg cast. These days, I am not fond of going to Home Depot, but during those times, it might have been the highlight of my week.
Basically, I was pretty isolated during recovery time. I didn’t get a lot of visits from my friends, but my mom’s or Aunt Chrissy’s friends would come by the house to say hi. They’d try to do things for me to make me feel “normal,” to keep me feeling like I mattered. That I was in a body cast didn’t mean I couldn’t have a haircut or perm if I wanted. Back then, perms were pretty popular, so my mom’s friends would help my mother cut and perm my hair on the kitchen table and sink.
Sometimes, I would still be home recovering when school started again in the fall. My teachers would send get-well notes and cards, and my mother would always figure out a way for me to see my classmates, whether she took me to school for a visit or she invited all the kids to come to me, and I would have everybody sign my cast. Then I’d look at the signatures over the next few weeks and be very grateful I had friends, which I’d lose sight of in some of the longer periods of isolation. My schoolwork and assignments were sent home for me to complete and return, and tutors came to the house to provide home instruction.
When I was older and more stressed from the workload of school, I started to like these “down times” more than I had previously. I still had schoolwork, homework assignments, and people visiting, but now I almost liked my time to check out from the world. I could watch TV whenever I wanted. I’d stay up late, and sleep in. I don’t want to make it sound as if it was a walk in the park or fun, because I was still completely dependent on others, unable to get comfortable because my legs were in a cast in a hot and humid Florida summer, and I was in a constant state of sweat, pain, and itchiness. But I was finally learning to appreciate my time to not have to stress about anything. I had no choice but to chill, and I tried to like it and accept it in a positive way.
My recoveries at home became more complicated when my parents got divorced. I was thirteen and David was six when we first learned that they were separating. My mom told us it had nothing to do with us kids. They had married young, had had kids right away, and now they were thinking their time together had run its course. But it was rough on all of us.
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!