Mom entered the workforce willing to give anything a try. And once Joe started school, she started working as a sales rep for various food distributors. She’d go to the supermarkets within her territory to check for expired or almost-expired products and remove them from the shelves, alerting the restocker about the change in inventory. She would perform store resets and document the work with photos. Even though the work didn’t pay that well, she was able to get a lot of food free that way, which was the unexpected perk that benefited us the most. With three boys at home, food was a big part of the home expenses. After traveling long miles between supermarkets in the mornings and afternoons, Mom usually got home after Joe, Tom, and I got home from school.
She would often run out of money no matter how much she stretched her dollar. The food stamps helped, but I wanted to help, too. I developed an uncanny ability to fix things or work for pay. I learned to repair anything I could to help out, maybe even to prove I could be the man of the house. I’d mow lawns in the neighborhood. Once, Mom got a super extra-large box of pretzels, and my brothers and I set up a stand similar to a lemonade stand and sold them for a dollar each. Another time, after the old dryer broke, Mom got a new one, but she was going to have to pay someone fifty dollars to rig it up for her. I told her I could figure it out, and soon I had put the whole thing together. I still laugh at how entrepreneurial I was. I had a motorized, two-seater go-cart rigged up with pedal extensions that my dad got me for my tenth birthday. It was the most awesome toy to tear up the fields behind Boyle Road Elementary, and I’d charge a dollar a ride for a quick trip around the neighborhood.
Meanwhile, there was life at Dad’s. With his three children and my stepmother’s two, there were five rambunctious boys quite close in age under one roof. To accommodate everybody, Dad and Debbie’s house had four bedrooms. Two of the bedrooms were for the kids—one for James and Jonathan, of whom Debbie had full custody, and one for Tom, Joe, and me. Dad made sure the house was in the same school district to help make life easier for all of us when it came to school and continuity.
Nobody was given preferential treatment, even though Jonathan and James lived with my father and Debbie full-time. The kids’ bedrooms had bunk beds and/or a twin in each one, and everybody had the run of the house beyond that. Dad and Debbie didn’t have children with each other, so I never had half-siblings, even though I would have liked a baby sister.
My dad had joint custody of us, and he would have us Tuesdays, Thursdays, and every other weekend. If it were a school night, we would go from school, hang out with James and Jonathan through dinner, and get driven back to the house by nine o’clock. Dad was extremely reliable and missed a designated day only if there was absolutely no way around it, such as if he had to work unexpectedly for any of his three jobs.
My brothers and I lived pretty much the same lives at both houses, but we did have a list of pros and cons for each. At Dad’s, we had our stepbrothers. They had some newer toys, a computer, more games for the Nintendo, and so on. But the rules were a bit stricter. Our chores were more regular and playtime was predicated on our willingness to do our chores.
At Mom’s, we had our long-time neighborhood friends, David and Andria for me; a neighbor by the name of Andrew for Tommy; and a boy named Michael for Joey. We also had a Nintendo, a TV, and many toys. Mom’s house was a bit more comfortable, meaning that because she was too busy to police our chores, things were a bit more relaxed. She relied on me to help wrangle my brothers and their games, clutter, and clothes. I didn’t mind. Strangely, I liked vacuuming and dusting the house. Frankly, I didn’t want to have friends over if the house wasn’t in tip-top shape.
Besides the strain of living in two houses, I still had the unbelievable stress of those trips to the hospital for surgery. These were the worst, and I was always scared! I made a number of trips to Baltimore over the years. Before my parents’ divorce, they would both make the trip and would normally leave my brothers in my grandmother’s care. After the divorce, this, too, became a bit more complicated. Now, normally one parent would make the trip with me, and the other would stay in New York with my brothers. Other times, they would make the trip in two cars. And on rare occasions, my brothers would come and we would make it a family affair. My lengths of stay would depend on the procedure I was getting done, but because this was the skeletal system, I would often have to be in Baltimore for a period of weeks.
Pre-op routines varied by circumstance, but they always involved me starving myself before the physical so I would be lighter and easier to manage. Blood work and X-rays were also part of the deal. After we checked in, we would get the lab stuff out of the way, and then the radiology, where the hospital gowns were always too big in the front and too cold in the back. Then we’d have to sit around until the doctor was ready to see me. Mom would struggle with nerves, and Dad would fall asleep in the waiting room chairs while we killed time. I wish I could say I took naps, too, but I was too nervous. I would normally pace around the waiting rooms, unable to sit still and going through the possible scenarios of what we would hear from Dr. Kopits.
These were always difficult trips. We never knew what the doctor would say in terms of how much surgery he was going to do, and we always anticipated there would be some bad news in there somewhere. The upside was that as time went on, we would see the same patients over and over, and we became friendly. Soon, the anxiety of those surgeries was tempered by anticipation of seeing old friends at the hospital.
Johns Hopkins Hospital was huge and intimidating, with color-coded stripes on the floors and pipes to follow to lead you to your destination. St. Joseph’s in Towson, Maryland, where Dr. Kopits eventually moved his practice, was a much smaller facility, newer-looking and very accessible. There, he was able to have an entire ward appropriated for his patients. Two North, the floor we were on, was great. The lounges were nothing special, but the playroom was fantastic, and we had access to an arcade game almost 24/7. Movies were accessed via a separate AV cart and a wait list. Everything in the physical therapy department was customized for Little People, so the tables were very low, the equipment was designed for short-stature individuals, and a custom pool went from two feet to four feet deep. The water was kept at a balmy ninety degrees. For those getting cut out of their casts, there were also appropriate-sized whirlpool tubs.
The rooms I stayed in usually had two patients, with a shared TV and bathroom. The room was pretty plain, and maybe twelve by twenty-five feet. Most of the time, I had a roommate. Some of them I liked, some I didn’t, and some I conned for candy machine money because the hospital food wasn’t that good. It wasn’t that bad either, just hospital food. For the most part, I ate a lot of BLTs and drank a lot of iced tea. For dessert, the best they had was the lemon meringue pie.
Since most of us were not “first-timers,” we already knew the staff, nurses, nurse practitioners, physical therapists, lab techs, and each other. I liked the primary nursing staff. There was Mary Beth, Katie, Janine, and Bill. They were all great, but my buddy Bill was the best. I think he was the best in most people’s minds. Janine was pretty awesome, too.
Mom would normally stay in the hospital or at the Pierre House, a home on the grounds of St. Joseph’s Hospital that was afforded to the families of those undergoing procedures who needed a place to stay. If Mom and Dad were there, Mom would stay at my bedside, and Dad would stay at the Pierre House. If the Pierre House wasn’t available, the Quality Inn was the go-to hotel with reasonable rates.
The surgeries were like works of art executed by a fine sculptor. For something like an osteotomy to correct a curved femur, a surgery I had more than once, the surgeons would cut you open, then cut your femur in half, take out a triangular wedge, and reconnect the two bones together with a plate, a couple of screws, and some surgical wire. Then they’d reconnect all of the muscles and tendons and sew you back up.
I would be out of school for two to three weeks for the surgery, then up to three months to heal in t
he cast at home, and then six to eight more weeks for inpatient physical therapy at the hospital. To avoid falling behind in school, tutoring was imperative. During my recovery in the spica casts, many of my regular teachers would tutor me at home in addition to their school schedule. This made for a consistent learning experience and helped me perform well in school. When I relocated to Baltimore for six to eight weeks of inpatient physical therapy, I had tutors there, arranged through the hospital, and they would receive instructions, lesson plans, homework assignments, and exams for me to take from my school. Normally, my parents would come down for the initial cast removal and first few days of physical therapy. Afterward, they would travel back to New York and return to my brothers, stepbrothers, and their jobs.
As far as my spirits were concerned, I definitely had my moments, lying in a hospital bed with a cast up to my rib cage, asking, “Why me?” There was a part of me that was angry that I had to deal with this stuff, and I was old enough to have those feelings, but I was also old enough to know there was nothing I could do about it, so why complain?
For a while, my family and I were involved in Long Island’s chapter of Little People of America, the Islanders. It was the local branch of the national nonprofit organization for people of short stature. The group convened for occasional get-togethers to discuss experiences, discovery of innovations, or solutions to problems common in the world of people with dwarfism. Sometimes, field trips to the movies, amusement parks, or tourist attractions in New York City would punctuate our regular meetings. Unfortunately, many of the people in our chapter of LPA were older than I was, and many of the children were much younger than I was. Because of that age gap, I didn’t participate very regularly.
I did have one Little Person acquaintance, Frank, who was a couple of years older than me and lived a few towns away. We would hang out once in a while, but for the most part, I was busy navigating what was happening to me in school. I was beginning to get picked on by the bullies in earnest. In my sixth-grade class, I was once poked in the eye with a paperclip. Another time, my pants and underwear were raked down in front of everyone. My teacher, however, turned a blind eye. He really made me feel powerless by not seeming to care. I suddenly feared that once people figured out my vulnerability, I would have even less recourse than I already had. Now, every situation had the potential to turn into something threatening, or become a chance for me to be excluded or ignored or negated, as if I didn’t matter.
Mom was still an incredible advocate for me. She wanted the kid who was the instigator of the pants-pulling incident suspended, but the school principal wouldn’t do it. So my mother talked to the other boy’s mother instead. She addressed the issue with the boy’s parents, as she had done a few times before with other kids’ parents. At least nobody ever pulled my pants down again, but I can’t say all the teasing stopped.
There was the embarrassing gym class situation, in which kids were taking my clothes and throwing them above the locker. We addressed this problem by asking the gym teacher to allow me to change before everyone else, both before class when we were getting into gym clothes, and after class, when we were changing back, so that no one could bother me. The teacher agreed, and with that, another problem was solved.
Not everything ended badly. I remember uplifting things from my childhood, too. When I was in the third grade, I had a surgery at Children’s Hospital in Silver Springs, Maryland. It was there that I met someone who changed my life. Her name was Lori and she was a patient there.
Dr. Kopits had temporarily moved his practice to Children’s Hospital while the new unit dedicated solely to skeletal dysplasia was being built for him at St. Joseph’s Hospital in Towson. As I was cruising down the hallway of the hospital wing where I would be staying for my inpatient physical therapy, I came upon a room that said ISOLATION—DO NOT ENTER. There was plastic over the door and a doorbell outside the room on the wall. I didn’t see anyone in there, so I kept going. On my way back, I saw a person sitting in a wheelchair inside the room. After I got her attention, she came to the door, exuberant, cheerful, and welcoming.
At the sight of her, I was more upset than frightened. She looked like a burn victim who had a slim chance of surviving the night. Her skin, taut and blotchy, was so tight that it pulled on her face. She had no eyelids, and her eyeballs protruded from her skull. She had no hair, barely any lips, teeth that were crowded behind each other due to a malformed jaw, no legs below the knee, and not much of a nose. Her arms were so thin that she wore a finger watch around her wrist. She looked as if she had a severe skin disorder or leprosy.
While the initial sight of her was shocking, we soon became great friends. Lori was quite a bit older than me, somewhere in her early twenties. She had been abandoned by her family when she was very young and had been a resident of that room and others like it for twenty years. But, despite that, she was the most upbeat, positive, inspiring person I have ever met.
Lori was a “lifer,” someone who would stay in this kind of setting forever. Louis was another “lifer” on that wing, afflicted with cerebral palsy. For some reason, my most fond memory of Louis was that for Halloween, he dressed up as a Ghostbuster. He had the logo on the back of his power chair and was riding around the halls, squirting everyone with an IV bag of solution, with tubing and a cannula, which made for a perfect stream. The lifers were on the pediatric floor even though they were no longer adolescents, mostly because the care typically provided on pediatric floors and in pediatric hospitals is much more compassionate than that of an adult hospital. (And no, Jen didn’t make me say that.)
Lori had a weakened immune system, which was why she had the plastic sheet over her door. It hung from the ceiling to the floor and created a positive pressure environment so air wouldn’t go into the room, but only blow out. She had a very rare skin condition that lent itself to other complications, which was how she’d lost her legs just above the knees. I remember the freshly changed gauze wrapped around the amputation sites.
Besides the bell, Lori’s door had a sign that described what you needed to do in order to enter the room. There were enormous precautions involved, from wearing a surgical mask to covering everything with fully sterilized gear. I would visit her multiple times a day.
Lori’s room was set up with everything she needed. She had a microwave and a fridge. I, on the other hand, was on the quintessential hospital food diet, a scoop of green Jell-O with lima beans, green beans, or string beans bouncing around in the middle. How could you do that to patients, when everybody in here was already hurting and miserable?
Lori didn’t seem to mind the hospital food as much as I did. She didn’t worry about things like that. She smiled all the time, and she never complained. She was always upbeat, and she was always happy when she saw me. I could never understand how she could muster up such a positive attitude when she had so many things she could be miserable about. I have never met anybody like her.
I am proud to say I had a friendship with someone as incredible as Lori. I was so glad I didn’t turn away from her because of what she looked like. Her attitude, the way she carried herself, and her personality far outweighed any physical detractions. That was the key to that relationship and why it was so influential in my life. I realized that personality and heart go a heck of a lot further than physical beauty. You have to wrap your brain around the idea that it takes time and openness to get past the physical barrier. Even now, when I might start to feel sorry for myself, I think of Lori and the wonderful courage she displayed. I know she didn’t live much longer after I saw her for the final time, but meeting her was one of the greatest things that ever happened to me.
After I left the hospital, I had to heal at home for a few weeks. It was during this time that one of the kids in my third-grade class wrote a story about me and my positive impact on him and my other classmates. The story was about a salamander, me personified via the salamander, and how the salamander had gone away and the things that had happened to him wh
ile he was gone. Through perseverance, the salamander was able to make it back home, to the great pleasure of his community. It was such a cool story. The kid who wrote it was a really good artist, too, so he even illustrated it. When I did come back to school, my schoolmates were super thrilled, maybe in part because of the salamander fable.
It was the first time I realized that I might have something special to offer because of the things I had been experiencing, and that my influence was greater than I had given myself credit for. With this in mind, I tried hard not to feel sorry for myself. Besides, I wasn’t that type of person.
CHAPTER SEVEN
Jen
Summers in Baltimore
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.
Life Is Short (No Pun Intended) Page 6
