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.
Life Is Short (No Pun Intended) Page 7
