by Robert Hoge
I was Robert Hoge, born a second time.
6
A Different Little Boy
I emerged from the operation a very different little boy.
In Mater’s intensive-care unit I was hooked up to life support to make sure my heart kept beating and my lungs kept breathing. I progressed well for the first few days, until my kidneys started malfunctioning. The kidneys are the umpires of the body. They regulate lots of its functions—filtering blood, producing hormones, helping to control blood pressure, and removing waste from the body.
My kidneys were blowing the whistle on my body.
The doctors warned Mom and Dad I might have to be put on kidney dialysis. My parents waited nervously as the doctors tried every trick they knew. Perhaps my kidneys were listening in, though, because just in time, they started working properly again.
“When will Robert be out of danger?” Mom asked a few days after the surgery.
“Each day, one more danger is eliminated,” Dr. Atkinson said. There were plenty more days left.
Although I was still groggy when I came out of the operating room, I had managed to squeeze Mom’s finger to tell her I was okay. But I had been kept under heavy sedation for the first few days and hadn’t managed to speak to my parents. On arriving for a visit one day, Mom was told I had spoken my first words since the procedure.
Deep down Mom was probably hoping for something profound or sweet—maybe “I’m alive” or “Where’s Mommy?”
“What did he say?” Mom asked the nurse.
“I want to do a poo,” she replied. It wasn’t very exciting, but it was what I always said when I wanted to use the toilet. It was a sign I probably hadn’t suffered brain damage during the half day on the operating table.
When the doctors took my bandages off, they discovered I’d been replaced by a small, ugly alien. All my messy, sandy-brown hair was gone and in its place was reddened and raw skin. I had long lines of ragged stitches holding the skin together across the top of my head and down the middle of my face, right over the center of my new nose. I had two huge, swollen black eyes. Plastic tubes hung out of each nostril, draining phlegm and mucus.
Despite all the mess, the doctors looked at me and smiled. They had done what they’d set out to do. My face wasn’t perfect, but the building blocks were better. Techniques the doctors had pioneered on me would later be used to help hundreds of other patients around Australia and the world.
Nothing comes without a cost, though.
My left eye was slightly damaged when it was moved, leaving the vision permanently blurred. Doctors tried to correct it with glasses, but had no luck. Still, it was a small price to pay for better depth perception.
The doctors told Mom and Dad they wanted to operate again in the future, but the hard work had been done. Future operations would do even more to improve my looks—fix up the bumps and scars they had been unable to remedy this time.
I left the hospital three weeks after the operation. Around the same time, Mom was contacted to see if she and Dad would be interested in having a journalist from the Australian, a newspaper, do a story on me and the operation. They spent some time thinking it over. Mom and Dad weren’t sure at first, but two things swayed them in the end.
The first was that they wanted the doctors and medical staff who had performed the operation, and all of the staff at the hospital, to receive some recognition for their efforts. The second and more important reason, from their perspective, was that they thought my story might help someone else. Maybe there were parents like them who had a child like me, who needed a gentle tap on the shoulder and someone to tell them there was hope.
After meeting my parents and me, and talking to the doctors responsible, journalist Hugh Lunn wrote a feature that was published in the newspaper in May 1977. The story talked about my birth and my parents’ roller coaster of emotions, but focused mainly on the planning of the operation and the procedure itself. All the details of the surgery were spelled out, including the doctors’ wonderful ingenuity in making me a new nose out of my toe.
When I had been home from the hospital for six weeks, I developed what at first seemed like a slight infection. I was readmitted to Mater for observation. The infection proved to be decidedly stubborn. The doctors became increasingly worried, and I ended up spending five long months in the hospital while they tried to beat it. As a child, it seemed like an eternity—but at least it was a familiar environment. Every time I went to the hospital, I’d stay in the same ward, often in the same bed, and while some of the doctors and nurses and ward staff caring for me came and went, most of the faces remained the same.
Mom would visit every day during the week. She’d arrive and give me a hug. The necklace she often wore—a large coin with Queen Victoria set in silver on one side—would brush across my forehead as she bent down. She would sit with me and we’d play and read together. Then she would wander the ward, talking to nurses and other regular patients.
Dad would visit on Saturday while Mom stayed home and made cupcakes—usually with help from Paula and Catherine. On Sunday the whole family came to visit. Mom would distribute the cakes she’d made the day before to the other sick children—some for the boys’ ward and some for the girls’.
• • •
With my right leg amputated, I had to learn how to get around with no legs. It wasn’t hard. Getting around without artificial legs was a joyous freedom. I no longer had a leg that got in the way. I could crawl or raise myself up on both arms and swing my body forward underneath me. And I could leap—onto couches, off beds, down stairs. I was fast in a way I never had been before.
Then I had an artificial leg made and fitted for my right stump. It was a lot easier to keep on than my left. It hugged tightly to my stump and was held on with a strap above my knee. Once it was all ready, I had to learn to walk on two artificial legs.
Imagine putting on shoes that have big heels on them. Then imagine getting six cans of soda and stacking them in two towers close to each other. Now imagine trying to stand on top of those two towers of soda cans and balance in your big shoes. That’s what it felt like the first time I stood up with two artificial legs on. It was hard to balance, and I had to hang on to a railing for support. As soon as I let go, I’d feel my hips start to wobble and then I’d fall over—like a stack of books piled too high.
It was even worse when I tried to walk. I’d put one foot down and start walking, then I’d sway to one side. Immediately I’d try to fix it by shifting my weight to the other side, but often I’d go too far and overbalance. Pretty quickly I became an expert at falling down, shoving my hands in front of me so I didn’t smash my already ugly face into the ground. Each time I’d manage a few more steps before falling over, and eventually I got the hang of it.
It was perfect timing, because I’d be off to school in a few short months. Mom had no intention of sending me to a school for the disabled, even though she was constantly asked if that’s where I was headed. She was determined that I would attend Guardian Angels School at Wynnum, just like my siblings.
First the school had to be convinced, though. Sister Pauline, the head nun, insisted on coming to our home to assess whether I was suitable for the school. She wanted to understand exactly how challenging a student I might be. So Mom organized a visit.
Catherine thought it was very impressive that her school principal was coming to our house.
“Is she going to want to talk to me?” she asked Mom.
Mom paused. “Probably not,” she said. “But she may want to have a look at your bedroom, so you’d better go and clean it up.” The visit was a success, and I was outfitted with a new school uniform—gray shorts and a blue shirt. It was time to see if my shiny new pair of artificial legs and my not-so-shiny face would be up to the challenge.
7
Two Apples for David
I wasn’t one of those
kids who worried about going to school on my first day.
I’d been dispatched to the hospital, admitted overnight and then stayed there for months, brought home for weekend visits, placed in the care of doctors, nurses and specialists, hugged hello and good-bye, and then been picked up perfectly well—sometimes in even better condition—hundreds of times. If nothing else, the hospital had prepared me well for school.
Guardian Angels was a small Catholic elementary school run by an order of monks and an order of nuns. Girls attended until grade seven. Boys stayed only until grade four, then headed to Iona, a combined middle-grade and high school that catered to students from grades five to twelve. One after the other, Michael, Gary, Paula, and Catherine had all managed just fine at Guardian Angels, which was at least some comfort for Mom and Dad.
Mom was worried I might have difficulties getting to the bathrooms, which were up a long flight of stairs from the grade-one classrooms. She petitioned local politicians to provide funds to have a new bathroom block built on the lower level, to no avail. But I was quite capable of using the stairs at home, so there was no reason I couldn’t use the stairs at school too.
On my first day of school I was dressed and ready to go half an hour before we had to leave and pestering Mom to get me there as soon as possible. I’d wanted to take the bus to school, like the other kids, but Mom wanted me to spend a few days getting used to school itself before tackling the challenge of the bus. She drove me instead.
I don’t remember many details about that day. I remember being lost among a sea of small heads and matching green-and-blue-and-gray uniforms. I remember trees with trunks bursting through the asphalt providing some shade from the sun. I remember older kids playing with tennis balls and skipping ropes. And I remember Mom. I remember her standing there watching me walk away, her face a mix of sadness and pride. It was a scary day for her. Her youngest child was heading off into the wild. She could no longer supervise me all day, every day. There was no knowing what might happen—one of my legs might break, I might fall over, I might be too slow getting from place to place. I might be teased. But I survived that first day unscathed, and returned home happy and excited.
On the second day, Mom walked me to the top of the long, steep steps down to the grade-one classrooms.
“I’ll be okay, Mom,” I said, letting go of her hand. She looked nervous, but nodded. Two-thirds of the way down, another grade-one boy came up the stairs, heading straight for me. He was walking right alongside the rail. If I wanted to get past, I’d either have to stop and wait for him to pass, or grab the railing on the other side, but there was too much hustle and bustle to try to reach for the other side. I didn’t know what to do, so I just kept walking, hoping the other boy would get out of my way. He didn’t, and when we reached each other, we both stopped. I looked back for Mom, but could not see her among the wave of kids.
Then I felt a small hand reach out and grab mine. It was the other boy. We walked down the rest of the stairs hand in hand.
“Hi,” I said.
“Hi, I’m David,” he said.
“I’m Robert.”
David had dark hair and olive skin, and spoke in quiet, clipped tones.
Our classroom was at the bottom of the stairs, and had long wooden racks outside where we left our schoolbags. David took my schoolbag from me, started shoving others’ out of the way, and put mine down. Then he took me into the classroom. David did exactly the same thing the next day. I’d made my first friend at school.
At the start of the second week, David went to get my bag.
“Leave it, David,” I said. “I can do it myself.”
Luckily David was getting something out of the friendship too. Mom was sending me to school with sandwiches and an apple. I wasn’t always overly keen on eating the apples, and kept giving them to David. It was only fair, I thought, given how much he helped me.
Mom eventually found out. Rather than insist I eat my own apple, she started sending me to school with two apples.
“Now, Robert,” she said, “there’s one for you and one for David, okay?”
I nodded.
“Do you understand, you can both have an apple?”
“Yes, Mom,” I said. “Two apples. I understand.”
I took the two apples to school. One day when Mom came to pick me up, she saw David and asked if I had given him one of my apples.
“No,” David replied with a wide smile. “He gave me two apples!”
• • •
That first week of school, I did break my leg. I was going up the stairs to meet Mom when one of the metal shafts snapped. David helped me to the car.
Dad phoned the people who had made my legs and they said it could be repaired by anyone who had a spot welder. So Dad took the leg to the local service station to see if they could weld it together.
He walked in and explained what he needed.
“Sorry, mate,” the service station owner said. “Too busy.”
It was the same story with the second.
At the third service station, the owner took one look at my leg and listened to Dad’s explanation.
“This is what I call an urgent job,” he said. Then he welded my leg back together, good as new.
After a few weeks, Mom let me start catching the bus to school with Paula and Catherine. The bus stop was about five minutes away—we had to walk up a small hill to the top of our street, around the corner, and then up another small hill.
The first time I only made it up our street and around the corner before stopping.
“I need a rest,” I said.
“Why?” Paula asked.
“My legs aren’t used to it,” I said.
“We haven’t got far to go,” she said.
I just sat down on the side of the road.
“You’ve got one minute,” Paula said.
After a few more weeks, I adjusted to the journey and could do it more quickly and without having to rest.
• • •
If other kids realized exactly how different from them I was when I started school, I didn’t notice. Eventually it became obvious when my classmates started asking me questions—the sort of questions Mom and Dad usually answered for me—and I didn’t know what to say.
It started to add up pretty quickly. My very first math lesson. Some kids didn’t seem to care how I looked, but for every kid who didn’t care, there were ten who did.
One gray Monday morning a few weeks after school started, Mom hurried me to get dressed for a hospital appointment.
“Mom, can you put my long pants on?”
“No,” Mom said. “I’ve got shorts here for you. Why would you want long pants on?”
I stayed silent.
“You don’t really want to wear long pants, do you?” she asked.
“Yes.”
“Why?”
“Some people look at me and say, ‘That boy hasn’t got any legs. He must have been in an accident,’” I said.
“You don’t really care about that, do you?” Mom asked.
“Yes, I do.”
“People really aren’t trying to be unkind when they say that. If you wear your shorts, they’ll be able to see how clever you are and how well you can manage and all the things you can do that they can’t do.”
I still didn’t want to, but I wore shorts.
• • •
Medical dramas made it even harder for me to blend in at school. In August 1978, the hospital did a scan that showed a half-inch-wide pocket of infection around some of the bones in my forehead. Infections can eat away at bone, so this was serious. It had the potential to undo all the good work the doctors had done. Dr. Atkinson told Mom and Dad he needed to operate to see what was going on.
Both my parents were on edge, but especially Dad. He now regretted letting me have
the big operation, because it seemed to him that afterward I was constantly ill. Before I had been ugly but healthy.
At home, Mom received a bulky envelope from the school that she assumed was schoolwork I’d missed out on. Instead, there were letters from every grade-one student, all reading: “Dear Robert, We love you very much and we hope you will be better soon.”
The operation to investigate the infection was very short. After two hours, one of my doctors greeted Mom and Dad at the operating room door. He told them surgeons had cleaned out the infected area. They had removed a few small pieces of wire and silk that had failed to dissolve after my operation the previous February.
I went home at the beginning of December, just in time to finish grade one. Spending months away from school didn’t really hinder my education. I’d learned the lessons I was supposed to learn and done well enough at the start of the year to progress to grade two.
After a year of being exposed to other kids, I knew most of them didn’t have squashed noses or dents in the sides of their heads where their eyes used to be. Other kids had legs. You could tickle their feet. I started to realize that each of the kids I regularly saw in the hospital had something different about them. There was the kid in a wheelchair. There was the kid with the strange lump on his neck. But I also started to see them at school too. There was the kid with the harelip. There was the one with flaming red hair and pale white skin. There was the girl who was already taller than all of the boys in the class. There was this one really skinny kid and all the fat ones.
Each one had something different about them. I just had different differences.
8
All Downhill from Here
After I came along there were seven of us in the house in Manly West, a suburb of Brisbane. My two sisters shared one bedroom, while I alternated between sharing a room with my two older brothers and sleeping in a single bed in my parents’ room.