Excerpt for Justin Time: A Memoir of Faith and the Fight for Life by , available in its entirety at Smashwords

Justin Time

A memoir of faith and fighting for life

by Joe Lafferty and Jeff Schober

© 2017

Introduction: He Carries Me Through

Rain had stopped before sunrise, but it remained a warm, misty morning in June 2012 as I drove across damp asphalt toward the tiny town of Elderton, Pennsylvania, forty-five minutes northeast of Pittsburgh. It was strange to navigate a car again, so I focused on the road, the feel of the steering wheel against my palms. Thanks to the transplant, circulation had improved my vision enough that I could drive again, but only during daylight. It had been nine long years. Now that I was regaining my health, this would be my first stop. I needed to go alone.

I was nervous, more anxious than I had been for any first date or job interview. I kept the radio off, so the only sound was the humming engine with rare interruptions from the GPS tracker.

“In one-quarter mile,” the audio instructed me, “turn right onto Cemetery Road.”

Directions would lead me there, but I wasn’t sure how to find Justin’s grave once I arrived. More importantly, what would I say?

A few days earlier, when I had mentioned my anxiety to Justin’s mother, Rhonda’s sentiment was simple.

“Just talk to him,” she said. “He’s a great listener.”

Her advice had calmed me then. Now that peace had faded; I was jittery again.

Tire tracks were visible through the grass. Driving slowly, foot hovering over the brake, I saw a black onyx grave stone etched with the silhouette of a guitar. Too distant to read any name, I knew this was the spot.

Putting the car in park, I emerged tentatively from the driver’s seat, unsteady and humble. Morning sunshine reflected off the inscription, so I stepped forward, shading my eyes as I stooped down to read:

Precious are the memories of Justin.

He laughed often and loved much.

His love will never be forgotten and

never will his memory fade as

he now shares his smile with the angels.

“Hey,” I said without preamble. “It’s an honor.”

There was a lump in my throat. I tried to hold back the tears, but they leaked out anyway. We had never met before, but this young man would forever be part of me. His tragedy gave me another chance at life. His sacrifice was the beginning of my resurrection.

The grave was beautifully landscaped, surrounded by a bed of white pebbles and wooden edging. On the ground were weathered crosses and offerings from previous visitors: a miniature flag, a landscaping rock that read “friend,” colorful flowers. I was embarrassed that I had nothing to share. I circled to the front of the stone, which read:

Our Son, Brother, and Friend


June 23, 1993-February 13, 2010

He Lived — He Loved — He Laughed — He Smiled

I had seen the phrase “live, love, laugh” before. Justin must have read it too during his short life. But here, “smile” was added as the capstone. It seemed appropriate. The word brought forth an image of the young man.

The first time I met his family, they gave me a print of his school portrait. He had a great smile, with bright, dark eyes. Skin was creamy, with typical teenage hair, a straight brown shade that was long in front but didn’t spill onto his collar. It reminded me of the Beatles. On the bottom edge of the frame the word “smile” was written.

Smiling can be a foundation. You can’t love and laugh all the time, but you can always smile. Sometimes you just have to fake it until the sentiment becomes real. I read the Bible every day, and scripture tells us that if you have faith, faith will be delivered unto you. Justin believed that if you can force a smile, you’re on the road to living and laughing. It’s a wonderful, joyous sentiment.

His family explained that Justin had been a colorful kid. When a friend was feeling down, Justin wasn’t shy about cracking a joke or making a fool of himself simply to elicit a laugh and change the mood. How many teenagers care more about the people around them than they do about themselves?

From the top of the hill, morning fog burned off in the valley below. I stared at his headstone, wishing that I was musical so I could play a song for Justin. He loved the guitar.

Fifty yards away was a stout, squat tree with branches curling down in a mushroom shape. An adult would have to crouch and duck beneath low-hanging leaves to touch the trunk. Despite the sun, the base of the tree was wreathed in shadow. It was a perfect spot. I took a deep breath.

“I guess that’s your spot to sit and play guitar, right?” I said out loud. I heard only silence, but I’m certain he agreed. It was a peaceful, quiet morning.

Two years earlier, I had major health struggles. I was only in my thirties, but my body had endured too much, and things were slowly shutting down. By volunteering to be organ donors, Justin and his family had given me a gift. They sent a blessing into the world not knowing how it would affect the future. They believed in goodness and helping others.

Now, before his grave, I wondered why Justin wasn’t on this earth any longer but I was. It didn’t seem fair. I foolishly wished that I could trade places with him. He had been sixteen and deserved a shot to grow up. But those are decisions that only God gets to make.

Justin is part of me now. As a Christian, I know I’m not responsible for two souls. I don’t believe it works that way. But I do believe that I’m responsible for whatever time I have left here. I want to use that time to honor Justin’s memory. I want my time to be good so I can contribute positively in the world. I want to love people and spread peace and not take a moment for granted.

But that can be a tough hang. It’s not always easy.

To reflect back on my days, I’m amazed. I’ve had so many once-in-a-lifetime opportunities. I’ve experienced so many blessings.

I became friends with Dan Marino while I was in high school and he was the best quarterback in football, setting NFL records. I’ve befriended celebrities like Bucky Dent and spent time with legendary football coaches Chuck Knox and Mike Ditka. I’ve coached young men, many of whom went on to play in the NFL, like Rob Gronkowski and Ryan Mundy. I have great friends, a wonderful family, and the love of a beautiful woman.

But there have been dark times too. Cancer. Diabetes. I’ve lost my eye and endured a kidney and pancreas transplant. I even died on a hospital table. Six days passed before I woke, and I have no memory of that missing time. I’ve cheated death more than once, so I understand hope and value each new day. I’m alive because God carries me through.

I was once asked what I would give to be healthy again. At the time, I felt weak. My answer came quickly, surprising those around me.

“I’d jump off a building and break every bone in my body,” I professed.

It would be a fair tradeoff for kidneys that worked perfectly or having 20-20 vision. With broken bones, despite the casts, the pain and the hardships, there is an end in sight. I could rehab and heal and eventually work my way back to normal. That’s not a luxury I have.

But I refuse to complain. It’s been an incredible life, and there’s plenty to come. This is my story so far.

Chapter 1: In the Deep End

After finishing third grade, like any eight-year-old, I was excited to begin summer. During the winter of 1980 and into the spring of 1981, I had begun swimming competitively and had quickly gotten good at racing.

At the start of summer, I looked forward to two months of freedom, splashing in the pool and playing with my friends through a wonderful realm of childhood. My home swimming club, just a short walk from my house, was hosting the championships that year. I knew it would be the highlight of the season. As June turned toward July, it was all I could think about.

I grew up in Forest Hills, a suburb on the eastern side of Pittsburgh. Pittsburgh is known as a blue-collar town, famous for its industry and full of people who find simple pleasure in sports and family. It’s ethnically diverse. My family embraced many of those working class values.

My father, Joseph Lafferty Sr., was a 24-year-old Irishman when I was born. He was part-owner of a gas station, and later became a Teamster who worked for thirty-six years in the circulation department of the Pittsburgh Post-Gazette before retiring in 2011.

Linda Persichetti, my mother, was the same age as my dad. She is a proud Italian who worked as a Pittsburgh school teacher. While I was in high school, she earned a master’s degree in library information systems and became a computer teacher.

Our family was close-knit. I have one sister, Tara, who is fourteen months older than I am. Also living in our house was my grandfather, Jim Lafferty. He was a stern man who married for the first time at age 36. My grandmother had died before I was born and Grandpa had survived a heart attack. Since the time he had been alone, my parents took care of him. He had lived with us all my life.

Like most boys, I was active. My father had gotten me involved with an outdoor group called Indian Guides. It’s like fathers and sons boy scouts based on the history of the Native Americans, trying to teach kids respect for the land and living life outdoors. We went camping and canoeing and shot BB guns. I had a group of friends, and we were part of the Genesee Tribe. We believe our fathers came up with this name after a night of drinking. These were good men, and there was always Genesee beer around.

We went on an overnight camping trip in Ohio, where we slept in tents. All the boys clustered into one big tent and the dads occupied another. It was a fun experience, something different, and we boys bubbled with excitement.

Problem was, nobody got any sleep because of me. Once I dozed off, I snored so loudly that I cleared the tent. My dad woke me and for the sake of everyone else, we moved to sleep in our own tent. I fell back to snoring quickly. While I wheezed, he put his hand on the back of my neck and could feel that my glands were swollen. That was the cause of my loud noises. Dad compared the thickness of my neck with an older neighbor boy’s who was with us, and my neck was much bigger. He sensed something was wrong.

So we went to the doctor. I had this old, plain-spoken, very loving Jewish doctor named Dr. Schwartz. He must have been in his seventies. He treated me for swollen glands for about a week, but nothing much was helping. Dr. Schwartz pulled Mom aside and said we may need to do a biopsy. He feared something bad. I learned later that he was worried it might be cancer. If so, he told Mom, he was going to retire because he didn’t want to see this happen.

After two weeks of antibiotics, I wasn’t getting any better. My parents explained that I was going to West Penn Hospital to have a test. They were going to put a little hole in my neck and look at things. No one had any idea what the problem was. After the biopsy, I was transferred to Pittsburgh Children’s Hospital.

I remember that July 14 was a blazing hot day. It was also my sister’s birthday. In the hospital lobby, there is a six-foot-high Curious George stuffed animal in the corner. Little kids ran up to hug it. It was touching to see.

I was led into a little side room and my parents explained my diagnosis. I had cancer of the lymph notes. It was called non-Hogkin lymphoma. These were big words that I didn’t fully understand. That day I was given a seventy-percent chance of survival.

If you’re betting money, seven out of ten are great odds. A gambler would take those odds every day. But if you’re talking about the life of your child, that is a horrible probability. Imagine being at a dinner with nine relatives, and someone walks in with a gun and says three of you aren’t leaving. Those are terrible chances. Even if I gave the same scenario to a parent with ninety-nine other kids in a room, and said three of them aren’t leaving, that’s three percent, not thirty. No parent would accept those terms.

But my parents didn’t have any choice. They were smart, and turned into expert salespeople. They sold me that seven out of ten were great odds. If you said that to an adult, it would almost sound stupid, but I was a child and they made it very obvious. They had a great way of putting things, and they sold me that day.

Even at that young age, I was well versed in life and death. Just the year before, I had lost two grandparents and a great grandparent. My mom’s mom died after a nine-year battle with cancer. A week later, her mom died. Earlier that year, my grandfather who lived with us passed away. So I understood about death. For a while I thought we lived part-time in a funeral home.

Non-Hogkin lymphoma. A scary disease for anyone, especially an eight-year old. But my family made sure I didn’t get hung up on the fear.

What my father told me in the hospital lobby that day shaped me for life. Chemo, he explained, was going to make me sick. No one likes getting sick, but that would be my reality. He said I could go on swimming and playing tennis in the afternoon and run around and have as much activity as I can during summer when I wasn’t sick. Sure, I’d be down for a few days, but after the sickness wore off, I could get back up, go out, and have fun. The other option he pitched was that I could lay on the couch for two years through the cycle of treatments. He looked me square in the eye.

“So what do you want to do?” he asked.

That’s a no-brainer for an eight-year-old. I wasted no time in my reply. If I didn’t feel well, I promised to lie down. When I wasn’t sick, I planned to be at the pool or playing on the tennis team because that’s what I loved to do. From that day on, it became the mantra.

My parents are amazing people. They strived to be sure all of us had a sense of normalcy. There was no pity. They didn’t treat me any differently because I was sick. If I got in an argument with my sister, they didn’t take my side because I was the kid with cancer. I was still responsible for chores. I was a good kid, but if I did something wrong, I was punished. If I didn’t clean up after myself, I was reprimanded. The only exception was if I was lying on the couch after a chemo treatment.

The Bible says, “He that spareth the rod hateth his child.” I needed to be reined in from time to time. My dad did the heavy lifting on discipline. He was authoritarian, but fair with his punishment and measured with his praise.

I don’t want anyone to think my parents were heartless dragons. They didn’t say, hey, it’s only cancer. Just get over it. Our house was very loving. They didn’t want to worry me. They empowered me to get better. Listen to the doctors and nurses, I was told. And they were adults and authority figures, so I followed what they said.

It seems laughable now, but when I was told I had cancer, all I cared about was getting back to my swim team. That’s how passionate I was. It was the middle of summer swim season, and I was having a great year, pretty much first place at every meet. My birthday is late — September 2 — so I got to swim in the eight-and-under age group. Everyone in my grade was already in the nine-and-ten group.

The winter swim season had been good for my confidence. I was swimming better than many of the older kids. I had set the pool record for 25-meter freestyle, and participated in the mixed relay, a race that involves someone from every age group. I was the best backstroker in that relay.

Shortly after my first chemo treatment, I got my head shaved. I didn’t want my golden locks falling out. My barber, Denny Pasquzzi, came to the hospital and gave me a military crew cut. Denny had been cutting my hair since I was two, and remains a family friend. I justified the new look because I had swim championships coming up.

My home pool, Forest Hills, hosted that year. It was a big deal. The day before, I watched them erect the winner’s platform where kids stand to take pictures. Everything about it was exciting. Our team was strong from top to bottom, and I believed we had a “home field advantage.”

On the day of the meet, twelve teams and their parents packed the deck. I was swimming the fifth event. As swimmers approached the blocks, kids’ names were broadcast and supporters cheered. When Mr. Spahr, the announcer, said my name for lane four, the eruption was louder than it had been for other kids. This was more than just home fans cheering. It amped me up.

Standing behind me was Debbie Spahr, the announcer’s daughter, who I had met in first grade. I had fallen in love with her the day I met her. She was my elementary school crush, and she was cheering for me, yelling “come on, Joey!” She was an athlete herself, intense with a competitive streak. (Debbie and I later became lab partners in tenth grade, and with it came the realization that I never had a shot. She thought of me as a brother, and was kind enough to let me down easy. Being her friend was the best consolation prize. By senior year, she was our homecoming queen in a class of five-hundred-thirty-five... so I can pick a winner.)

In the lane next to me was Matt Brady. He was my rival in summer, although we swam together during the winter season. Matt was a great guy. In fact, my only loss in the prior months had been to him, and I was hoping to flip that scenario here.

“Swimmers, take your mark,” Mr. Spahr boomed, then fired the starter pistol.

I stretched far, lunging into the water. It was just a 25-meter sprint. Stroking and kicking fast, I could see Matt right next to me, a little bit ahead. I knew it would be close. I wanted to win, so pushed even harder. We almost hit the wall at the same time, but he touched me out. Matt took first place and I was second. My time was 16.08 seconds, the fastest I had ever swum. I had broken my own personal best. Although I didn’t win, I was content, knowing I had given everything I could. Matt was just a beast. He was better than me, and I was happy for him. Years later, he went on to swim for the University of Pittsburgh on full scholarship and was All Big East nine times.

When it came time to stand on the podium, they announced my name for second place. The deck erupted. People stood and cheered. It dawned on me how loud it was.

I hadn’t wanted everyone to know I had cancer, but they all did. My story had spread. Thirteen days earlier I had taken chemo. Later I recognized that this was one of the crowning achievements of my childhood. This moment reinforced what my parents had taught me: that you can have cancer but still do interesting and exciting things. Cancer doesn’t have to take over your life.

After mine, Matt’s name was announced as the winner. It was anticlimactic, and I always felt like I stole my friend’s moment. But he was such a generous guy. As I looked up at him on the top step, he reached down, grasped my hand, and raised it up with his. We both waved to the cheering crowd.

Sports can bring out the best of people, even eight-year-olds.

* * *

The most important thing in my adult life is being a Christian and honoring God. As a kid, however, it was sports that kept a stranglehold on me. Games and competition were such a big part of growing up in Pittsburgh. The stereotype surrounding the Steel City is that ethnic men work at the factory for five days, drink beer on weekends, and are passionate about the Steelers, Pirates, and Penguins. Truth is, it’s not only men. Pittsburgh women can be rabid Steelers’ fans as well. They know football and love the game. Count my mom among those women. She once bought her best friend a Steelers’ jersey as a Christmas present, knowing her friend already owned jerseys — but not the one Mom had chosen for her.

Local travel agencies played off the Steelers’ popularity. They offered weekend packages for away games that included airfare, hotel accommodations, and game tickets. Because of the time invested and the emotional drain caused by my treatments, Dad thought a weekend getaway would be a great gift for Mom. The Steelers were playing the Saints, so she could fly to New Orleans, spend Friday night and Saturday in the Big Easy with her friend Ellen, see the game Sunday and then be home before bed.

Mom was reluctant. It would be the first time she was away since my diagnosis. We assured her that everyone would be fine. An English pastor once said, “the bow that is always bent will break,” but Mom needed convincing. She had provided strength to our family and served as our backbone. Everyone knew she deserved a couple days away. Besides, we implored her, what could go wrong?

She left on Friday, and when I woke Saturday morning, I didn’t feel right. Dad made breakfast, but I threw it up. He had me lie on the couch. As afternoon progressed, I suffered severe pain in my stomach and back. I’d never felt pain like that before, and after what I’d been through so far, I was accustomed to pain. We didn’t know what was wrong. Dad thought maybe I had a cold or the flu, brought on by my weakened immune system due to chemotherapy. As darkness fell, Dad put me in his bed so he could keep an eye on me overnight. Soon things turned worse. After throwing up everything in my stomach, I began to dry heave, spitting out bile.

Dad phoned Mom in New Orleans, then loaded Tara and I into the car and we headed for the Pittsburgh Children’s Hospital Emergency Room around 2 a.m. It was busy that night, or maybe the hospital was short staffed. I spent hours in the waiting room. It wasn’t until sunrise when I was led back to have a battery of blood tests, followed by more waiting. My sister remembers attending CCD class that morning, so it was just Dad and me at the hospital. He tried to remain composed, but I sensed his frustration from the long delay.

On Sunday afternoon, nearing 1 p.m., I laid in a narrow room by myself. I wanted the nurses to turn on the overhead TV so I could watch the Steelers game. As silly as it sounds, I hoped to catch a glimpse of Mom in the crowd. But the TV and lights remained off. Doctors had ordered me to rest.

As I laid there, I heard my dad’s voice from the room across the hall. He was on the phone, but his tone sounded different. My bed was near the door, so I leaned over and tugged the handle to eavesdrop. It was wrong and disrespectful — I knew that — but I was curious. I shifted slowly so he didn’t hear the paper sheet crinkle beneath me as I moved. His words terrified me. Even now, more than thirty-five years later, I don’t ever remember being as afraid as I was at that moment.

My dad was crying. I had never heard him cry.

“I don’t know what to tell him, Lin,” he spoke in low tones, addressing my mother. “I don’t know how to tell him like you would.”

I eased the door shut again. Pain was excruciating, and now it felt like added daggers stabbing at my brain. The only thing that would made Dad cry, I realized, was if I was about to die.

So this was it. I was going to die, and Dad didn’t know how to tell me. He needed my mom there to break the news.

I was nine years old, convinced I would soon leave this earth, but a strange aura of peace settled over me. I resigned myself. I had fought the good fight and when I died, it would be okay. After what I’d been through, I was acutely aware that death could happen, that for me it was a very real possibility. So this was my time. This was the way it had to be.

A few minutes later, my dad came back into the room. Since the phone call to Mom, he had composed himself. There was no evidence of his tears, no hint he had been crying.

“Okay, they found a bed for you upstairs,” he said evenly. “You’ve got something called pancreatitis.”

“Am I going to be okay?” I asked.

“They’re going to pump your stomach and you won’t eat anything for a while,” he explained. “They’ll feed you through a tube because your insides are inflamed and infected.”

I was impressed with his acting. Here was his only son, about to pass on, and he was calming talking about feeding tubes. Dad could demand an Oscar for this performance.

Well, I knew what was going on and wanted to cut through the unspoken truth. I took a breath and asked the next question, steeling myself for the hard facts.

“Dad, am I going to die?”

His face split into a warm, reassuring smile. “Of course not, Joey.”

I didn’t understand, but I knew then that I would be okay, because Dad was a straight shooter. He’d never lie to me about what was going on, despite the challenges we faced. I must have misread the situation. It was only later, as I got older, that I realized why he had been crying. Mom was the primary caregiver who dealt with hard medical decisions. Dad had been busy caring for Tara, carting her to dance lessons, making sure her childhood was as normal as possible. She was an active kid too, and so much of Mom’s time had been filled with my sickness that he had taken up the slack everywhere else. I had been attached to Mom, and without her there, Dad didn’t have the confidence or experience to deal with unexpected health issues.

Mom never made it to the Steelers game that day. She flew home early, and I spent three weeks in the hospital eating nothing but ice chips. My stomach was pumped with gallons of fluids. Mom slept in the chair next to me, summoning nurses to change the sheets whenever I wet the bed. The two of them giggled at my tan lines, fading evidence from an active summer. Laughing was a way for Mom to mask the pain of watching her son struggle. My treatment was hardest on Mom.

There were many nights when a chemo session ran long or blood work got delayed. Our family always ate well, but I know that Dad and Tara grabbed take out from a drive-thru while Mom stayed behind with me. Food, in fact, was one of the ways my parents motivated me through tough times.

The day before a chemo treatment, Mom would take me to the store and let me pick out a special treat in advance of the nausea and vomiting that were to follow. Once those passed, the food was waiting for me. I chose Mancini’s bread or a Hostess pie, things I didn’t normally eat. Mom would also prepare delicious homemade pasta. Even with lingering effects, I couldn’t wait to dive into such goodies.

My parents were motivating me to get past the treatments and feel better. Having a mini celebration seems simple, but it’s really visionary. They were empowering me to get better.

When I’d go in to the short stay unit for a chemo treatment, other children would be crying, throwing up before the needle hit their arm. I never understood that. Early on, I became accustomed to being injected with needles. It’s never fun, but I went to a quiet place in my head, training myself to not think about it.

Part of it was my upbringing. My parents taught me to respect older people and those in authority. I was instructed to listen to my teachers, pay attention to doctors and nurses and follow the rules, because that’s what you should do. Everyone insisted that if you tense up, you make it worse than it is. I remembered that.

Of course getting jabbed with needles hurts. I’ve taken them in my arm and back and neck and hip for bone marrow extractions. I’ve had four of those. It’s very painful. I had regular spinal taps to be sure the cancer didn’t spread there. I laid on my back, uncomfortable while fluid was drawn.

I give credit to God. He makes me strong. People sometimes assume that I can withstand more pain than others because of everything I’ve gone through. They think needles don’t hurt me, that my nerve endings are somehow dulled. That’s not clear thinking. I don’t know of any study that would show my body is more or less sensitive than yours. It’s very cut and dried with me. Pain is pain.

When the needle hits, it hurts. But rather than shout about it and make it worse, I choose to relax and stay calm. I’m willing to listen to the experts and remain disciplined.

Across a year and a half of my childhood, I just kept taking chemotherapy. Yeah, I was a kid, but I knew it was always too early to give up.

Chapter 2: Whirlwind

Shortly after my diagnosis, I had brushes with the media spotlight. Three times, I appeared on a show called “Pittsburgh’s Talking” as part of a segment featuring young people who suffered from medical issues. In one visit, I sat on a couch and answered questions with a boy who had been born without the lower half of his body. His name was Kenny, and he walked on his hands and moved around on a skateboard. Kenny later became famous as a regular on The Jerry Springer Show. He was a neat kid, but his segment alongside his father was bland. He and his parents were not great interview subjects. I was told that because of my personality, my spot played better to the audience.

Maybe that’s why I was approached by KDKA, a CBS-affiliate TV station, in the fall of 1981. The call letters KDKA are famous because it was the first radio station in America, and remains one of the the rare broadcast networks east of the Mississippi River that start with K rather than W. Every year, KDKA-TV ran a Christmas telethon, featuring three or four children undergoing health challenges. The producers wanted to film me and highlight my story.

Money raised from the telethon was donated to Pittsburgh Children’s Hospital. We were fortunate to live nearby — it was a twenty minute car ride from our house to the hospital. This was a world-class facility, and some families traveled long distances to receive treatment there. The telethon solicited money offset such expenses. I was eager to do anything to help.

So a camera crew followed me around for several days, taking footage everywhere I went. They filmed me at home, having dinner, doing all the things I would normally do. They filmed me at school, reading a book report to my class, eating with friends in the lunchroom, playing basketball and kickball. They even filmed me taking chemotherapy. The camera framed my arm in close-up while the needle was inserted, and in the background, a voice groaned “ouch!” My friends made fun of me, thinking I was whining, but it wasn’t me that complained. It was my mom. She always cringed, nearly crying each time I had to have a needle inserted. She still does that today.

Over several November days, I was filmed for nearly nine total hours, and that footage was edited down to a final product that lasted thirty minutes. The camera crew didn’t make us redo anything. I learned how time consuming it is to produce something for TV.

Today you’d call it a reality show, but we didn’t use the phrase back then. The experience was fun and I loved doing it, but it also lent an air of falsehood to my life. It was unnerving to have someone stick a camera in my face for so long. I began to understand that I wasn’t the same person when I was being observed all the time. Who I was changed when I was in frame.

The only true reality is when someone is observed without knowing it. But I played along, displaying my bravery to the world.

* * *

The late 1970s and early 80s were a difficult time in Pittsburgh with a transitioning economy and steel mills shutting down. Politics reared its head. Around this time, a court order decreed that a merger needed to happen between the Churchill Area School District and several other schools. People were moving out of Braddock, a nearby town, because the tax base was eroding. Because of that, the judge deemed the schools weren’t fit for children. The plan was to bus students across different municipalities and shift kids into nicer schools. The problem was that some kids were transported far from home and into poorer schools. Unfortunately, the issue became racial, split along color lines.

My mother was politically active back then. She was a council member for the Borough of Forest Hills and became president of a group called “SOS,” short for “Save our Schools.” She spoke against the shift as a public figure, as a mother, and as a teacher. If schools were too bad for black kids to attend, what was the point of shipping white kids there? Why not bring the black kids to our schools? These changes affected me. Years later, I became friends with people all over the sprawling district, both black and white, and it became a large part of who I am. But at the time, little about this shift made sense. I was supposed to attend Forest Hills Middle School, which was close to my house. In fact, from my front yard, I could see a corner of the building. Instead, new laws required that I be bussed across town. It didn’t seem like the best idea for anyone, so my parents pulled me from public school and sent me to St. Philomena’s in the Squirrel Hill neighborhood. They wanted to try a Catholic school for a year or two to see how everything would shake out.

Changing schools is traumatic for a kid. It’s hard to leave behind the familiarity and comfort of a routine. I knew I would miss my public school friends, although everyone said I would keep them and add new friends to the mix. One way to do this was by joining the football team.

As I neared fifth grade, I had lost interest in swimming. I wanted to do something in the fall, and St. Philomena’s had a football team. That excited me because I had grown curious about the sport. I found myself on Cloud Nine anticipating our opening practice. I was so excited that driving to the field that first day felt like it took forever.

I wore shorts and a colored jersey when I got out of the car at Magee Field. The other kids had jerseys too, but it was a rainbow of colors. No one matched. The field seemed shorter too. Grass didn’t span 120 yards. This created a unique set of challenges. As a team drove toward the end zone, referees had to stop the game and move the ball back fifteen yards. If a runner broke away, the refs had to make a judgement about whether the ball carrier would have been tackled before reaching the end zone.

I noticed right away that I was one of the bigger kids at practice. Most of the other boys were younger. I introduced myself to the coach, Steve Orlando, and told him my name was Joe.

“I thought your name was Josh,” he said.

“No, it’s Joe,” I assured him. “I’m from Forest Hills.”

“You’re the one,” he nodded. “Put your spikes on, stretch and talk to the guys.”

We began jogging and warming up, while a coach for the older boys on the grade seven and eight varsity team came by, spitting gross puddles of maroon tobacco onto the hard ground. I noticed him staring at me as he crossed the field.

“Who’s that kid?” the varsity coach wondered. When Orlando told him, he was met with a head shake. “The kid from Forest Hills has red hair. This kid is blonde. That ain’t him.”

I learned they had been looking forward to the arrival of Josh Hogan, a fellow fifth-grader from Forest Hills. He ended up being the tallest kid on the team, and the coaches had heard about him in advance. A big kid at a small school was worth waiting for.

That autumn was my introduction to football and I quickly grew to love it. With such a small roster — Josh’s arrival gave us thirteen boys — everyone played both ways and contributed on special teams. I was a guard on offense and defense. This was where I learned how to hit.

Our drills were intense. One guy ran the ball while three others tried to tackle him. We sprinted up hills for conditioning. Coach Orlando whipped us into shape and made us tough, even though we looked like the Bad News Bears. We didn’t have matching uniforms and we stored our footballs and kicking tees in old tattered laundry bags.

We never knew we were any good until we started playing other teams. Quarters lasted eight minutes. We went undefeated that year, even beating St. Peter’s, a school whose sports programs were funded by the Rooney family, owners of the Pittsburgh Steelers. They had fancy uniforms and brand new footballs and were skeptical of our record when they noticed how small our roster was. We shut them out that day.

St. Philomena’s was great for another reason. The parish was rich in Italians and Irish families. It fit me perfectly because that was my ethnic makeup. The football team was made up of Irish kids like me, Kevin McSwigan, Dennis Hanley, Pat Knipp, Danny Murphy, Marty Devine. There were also Italians like Todd Orlando, the coach’s son, and Eugene and Rocco DePasquale. Two of the kids from that roster went on to play Division 1 college football, another played Quad A football, which in Pennsylvania is the division with the biggest schools, and another played Quad A baseball. Todd later played linebacker at Wisconsin despite being only six feet tall. He was a great guy who went on to be a defensive coordinator at several colleges, including UConn and the University of Texas. And we didn’t just excel at football. Eugene is the auditor general of Pennsylvania. It was an impressive group.

With a limited roster, we were all given the opportunity to play. I had responsibility for anything that happened on the field. And once again, I listened to adults. Coaches taught us if you run hard and train well and stretch, you’ll be a stronger player. I took that as chapter and verse.

This experience ignited my hunger for everything about football. I would continue to play through middle school, high school, and into college. I later went on to coach and work in professional sports. So much happened in my life around this time. Amid the whirlwind of illness, shifting schools, and changing social factors, football helped ground me and provide something to look forward to.

* * *

While I underwent chemotherapy, I visited doctors regularly. I never went more than two weeks without seeing a pediatric oncologist. Sometimes appointments were more frequent, like once a week.

I dealt with Dr. Michael Wollman, a Jewish doctor originally from Brooklyn. I say that he was Jewish with all the love and respect in my heart, because he was the first person of that faith with whom I had frequent contact. Dr. Wollman was very matter-of-fact. Like my parents, he didn’t pull any punches. He could be hilarious, but also knew when to be serious and caring. Part of the reason I felt strong was because he told me what to do. I was convinced he wouldn’t con me or tell me something that wasn’t true. He promised that I’d get through cancer treatments and be okay. So I believed him.

At an appointment during the late stages of my treatment, after we dispensed with the update, Dr. Wollman asked my mom and me a pointed question.

“Are you interested in working with the Leukemia Society?” he wondered.

I frowned, confused. I didn’t have leukemia.

Non-Hogkin lymphoma, he explained, was a cousin of leukemia. The Leukemia Society had phoned his office looking for a child approaching the end of chemotherapy. They wanted an outgoing kid to participate in some of their events. They needed someone who was responding well to treatment. Their last few ad campaigns had been grim, showing sickly children, bald but covered by hats. It was clear that cancer was a hard thing for a young person to endure. They hoped to shift directions: find a kid with a personality and highlight a success story.

“Joe, you’re a success story,” Dr. Wollman said proudly.

This made me feel good. There was a finish line. Without using the words, the doctor was telling me that he didn’t believe I would stumble along the way.

“Absolutely,” I replied, nodding to mom. “I’d love to help raise money to fight cancer.”

We were given the name and phone number of George Omiros, the Executive Director of the Leukemia and Lymphoma Society of Western Pennsylvania and West Virginia. We set up an appointment, and within a few days, mom drove me to their office downtown.

I was excited. They had already asked what my favorite foods were, so there were cookies and milk laid out when I arrived. From the moment I walked in, they treated me like a star. After introductions and getting comfortable, George ushered me into his office. He requested that mom wait outside. George wanted to hear my words without interruption.

We sat across the desk from each other and he asked a series of questions. How did your cancer start? How do you feel now? What was the secret to getting through tough days? He took notes during our chat. I didn’t realize it then, but we were developing what I would later refer to as my “stump speech.” When I was called on to speak in public, these responses would form the basis of my presentation.

“If you were standing in a room full of donors,” George wondered, “what would you want to say to them?”

I thought for a moment. “I know the money that’s donated today won’t have helped me,” I reflected. “But the generosity of donors like you in years past probably saved my life.”

“Perfect,” George beamed.

We honed the lines and, over time, worked the presentation into five good minutes. Eventually, I could stand in front of any crowd and talk with authority. The speech was general enough that it could be adapted to almost any situation. Going through cancer wasn’t easy for anyone, I explained. One of the main pillars of the speech came when I talked about surviving the odds. In my mind, it was a speech of thanks.

Studies show that people’s number one phobia is speaking in public. Number two is dying. I’d eventually be able to make that comparison.

People can get butterflies before giving a presentation, but I started young. After doing it once, it became easy for me to get up in front of a crowd. Now, as an adult, I sometimes challenge myself, and wonder if could I present to strangers for five minutes in some unfamiliar setting. Most often, I think I could.

The first speech I gave was a big one. It was at the Foge Fazio Leukemia Golf Open, and I was being given the Courage Award. It was May, 1984, at the Pittsburgh Field Club in Fox Chapel. Picture a regal old banquet hall, with dark wood paneling. The room seated 450. I was only eleven years old.

Foge Fazio coached the Pitt Panthers. He was a hometown guy. Everyone knew who he was, because the Panthers were a good football team. The golf tournament began on a Monday, and the night before was the kickoff dinner. Husbands in suits and ties brought their wives, clad in cocktail dresses. It was swanky, and I was excited.

My sister and I were the only kids in the room, and I was The Kid. I remember being nervous when I surveyed the adults. There were so many important people there. It was a who’s who of future football stars: Dan Marino, Chris Doleman, Bill Fralic, Craig “Ironhead” Heyward, and Keith Hamilton.

Each dinner table featured a celebrity. At our table was Mike Wagner, a safety for the Pittsburgh Steelers. What a down-to-earth guy. He sat next to me and we talked the whole time. He was twelve or thirteen years older than I was, and treated me like a little brother. That’s when I learned that players in the NFL are regular guys.

After the meal, I stood and adjusted the microphone before delivering my stump speech. I spoke clearly and confidently, the way George and I had practiced. The five minutes passed quickly. When I finished, I received a standing ovation. People were grabbing me, shaking my hand, patting me on the back. It had gone better than I expected. I felt very special, and more importantly, I felt like I was doing good for other kids battling cancer.

* * *

Following the dinner, I was invited to a Pitt football practice with my dad. It was the last spring practice and everyone was in a great mood. At the facility, I was given a t-shirt that read “Tough 20.” I had no idea what it meant, but later learned there were 20 spring practices. Players who attended all 20 were rewarded with a limited edition t-shirt.

At the end of practice, Coach Fazio called the team together. After speaking to his players, he signaled toward dad to send me over.

I hurried to the huddle and Fazio rested his hands on my shoulders. I was surrounded by 120 guys in uniforms. They were big, burly, and sweaty.

“Hey everybody, this is Joey,” Fazio said. “He’s going to be our mascot this year.” He recounted the health struggles I had gone through and how I had won the Courage Award at his golf tournament. Players began clapping and cheering. I was then instructed to call the team. A hairy stack of hands thrust toward the middle, and I yelled “P-I-T-T!” They repeated the letters, followed by an explosion of noise as they shouted “Pitt! Pitt! Pitt!” Afterward, many players came up and patted my back, saying “good job, buddy.”

During the fall of 1984, I became a ball boy for the Pitt Panthers. I attended all the home games, and even went to training camp in Edinboro. I loved every minute of it, making fast friends with the rest of the staff. Decades later, their names still roll off my tongue.

The equipment manager was Tommy Connors, but his nickname was “Boo.” He succeeded his father, who continued to show up at every practice. The head student trainer was Joe Wall, whose voice was damaged due to throat cancer. Speaking in raspy tones, he identified with me immediately, and relied on me to help out.

I’d get to the stadium before the team. My job was to assemble clean socks, jocks, and pants into a roll so they would be ready when players arrived. Jerseys were already hung in the stalls. I helped Joe Wall do whatever was needed. Sometimes I’d run errands. Eventually, other boys showed up. I had expected to throw balls onto the field during the games, but coaches’ sons were given that job. Sometimes, a recruit’s little brother was told he could do that for a Saturday. It was a way to woo a promising prospect. I understood and didn’t mind.

Many of the players befriended me. Craig “Ironhead” Heyward was a freshman that fall. Chris Doleman approached me too, and he was very kind. At the first practice, Bob Buczkowski came up to me. He was a defensive end who, by 1986, would be drafted in the first round by the Los Angeles Raiders. He went on to play for the Arizona Cardinals and Cleveland Browns. His Wikipedia page identifies him as “one of the biggest busts in NFL Draft History.” Twenty-one years later, he arrested for a series of crimes. But all that was still to come. On this hot summer day, he was a college kid who asked where I was from. When I said Forest Hills, he smiled and nodded.

“I’m from Monroeville,” he said, referring to the next town.

Bob’s best friend on the team was Dennis Atiyeh. Dennis was raised in Scranton, one of several children from a big Syrian family. His brother George wrestled in the 1984 Olympics. Dennis was a hellraiser. At nineteen, he was arrested after drinking too much, getting into a fight, and pushing a female cop through a window. Like Bob, he got in trouble with the law as an adult too.

But I never saw that side of either of them. I only knew their good parts. Bob and Dennis became my buddies right off the bat. They would pick me up at home, take me to the movies, and we’d share ice cream afterwards. They didn’t have to do any of that. They were legitimately nice guys around me. Dennis had married in college and had a baby son named Adam. He and his wife were struggling college kids, so my mom bought them gifts. Ironically, she thought Dennis was a saint. Around this time, I participated in a fashion show for the Leukemia Society and was told by the organizers that I could keep the clothes. Instead, I requested baby clothes so I could pass them on to Adam. It felt pretty special to be twelve years old and hang out with the Pitt Panthers.

Not everyone embraced me. Some players treated me differently. Some didn’t want me around because they worried they had to watch their mouth. There wasn’t one specific group that kept me at arm’s length. It cut across race or position. I learned quickly who to stay away from, and settled into the role so I didn’t offend anyone.

More than anything, I spent the season appreciating the unique experience that had been granted to me. I was beginning to realize that having cancer had led me down a special path, so different from anyone else that I knew.

Other Voices

A Mother’s Love: Linda Lafferty

As a twenty-three-year-old first time mother, Linda Lafferty sat her daughter atop the dining room table, watching to be sure the baby didn’t crawl toward the edge. Little Tara, seven months old, looked adorable in her tiny red dress. She smiled and cooed while Linda beamed with admiration.

“I was so in love with her,” Linda recalled. “She was such a good baby, and she was gorgeous. I couldn’t believe that she was mine.”

Linda turned to her own mother, Antoinette Persichetti, who was visiting.

“I don’t know what I’d do if something ever happened to Tara,” she said.

Linda’s mother gasped. The older woman maintained a deep Christian faith, although she rarely preached to others and did not attend regular church services.

“Don’t you say that,” she scolded. “This little girl is on loan to you from God. You’re taking care of her. But Linda, if God wants to take her back, he can!”

The moment was sobering. Linda was forced to acknowledge that so much of life was beyond her control. The conversation came to mind a decade later when Joe contracted non-Hogkin lymphoma.

“After he was diagnosed, I came home and cried,” Linda said. “I cried and cried and cried and cried. But it was very important that Joey didn’t see me cry, and he never did. Once I got all the crying out, I made a deal with God.”

Doctors had promised the family that the survival rate of non-Hogkin lymphoma was seventy percent. If you’re going to get a cancer, they were told, this is the one to get. They proscribed an eighteen-month cycle of chemotherapy. Knowing there was a rigid protocol brought comfort to Linda. Nevertheless, this was her beloved son. What parent would be comfortable with a thirty-percent chance of death?

“I said to God, if you want him, you take him now!” Linda recalled, voice tinged with fire. “But don’t you dare let him suffer through eighteen months of chemotherapy and then take him! I’m willing to give him to you now!” She paused and nodded. “When God didn’t take him early, I thought, this is good.”

Linda has led an active life. Growing up in Edgewood, a neighborhood outside of Pittsburgh, she met her future husband when they were both sixteen and her dog impregnated the Lafferty family dog who lived several houses away. Linda grew up to work in Pittsburgh City schools as a computer teacher and school librarian. During eastern Pittsburgh’s district consolidations in the 1980s, she became a political activist, forming “Save Our Schools” — S.O.S. — and serving two years on the Forest Hills Borough Council.

Now retired, she volunteers with the national program “Blessings in a Backpack,” which fights childhood hunger by providing healthy snacks for children to bring home on weekends. The time between school lunches on Friday and school breakfasts on Monday is sixty-five hours — too long a span for kids to go without a good meal. Since 2011, Linda has averaged ten hours each week coordinating food distribution in Wilkinsburg.

In 1981-1982, the cycle of Joe’s chemotherapy became predictable. He underwent treatment on Friday, then came home and began throwing up at six o’clock Saturday morning. Through bouts of vomiting, he laid on the living room couch watching cartoons. By 2 p.m., the sickness would pass.

When Joe called, “Mom, can I have my Doritos and Coke now?” Linda knew he had made it through another cycle.

“Joe was always very different from a typical nine-year-old,” she said. “He was bright and wise beyond his years. One day after we left the hospital, I was driving down Fifth Avenue in Pittsburgh. He stared at the car next to us.”

“Mom, that guy’s got a lot of dough,” Joe said.

Linda watched on the road. “How do you know he’s got money?” Then she glanced sidelong to see loaves of Italian bread protruding from grocery bags in the backseat.

“That’s how Joe was,” Linda explained. “He joked and never complained. Honestly, he could have laid on the couch for eighteen months and not done anything, and I would have let him. But that wasn’t what he wanted. That first Halloween after he was diagnosed, Rubik’s Cube was very popular. So I got a cardboard box, cut out holes for his head and arms, and decorated his costume. He went to two or three houses to collect candy, then came home. It was all he could handle because he was so tired, but he still wanted to do it.”

Once, Linda tried to sympathize with her son as he prepared for yet another medical procedure.

“I’m so sorry, honey,” she said. “I know how you feel.”

“No you don’t,” Joe replied.

Linda paused, then realized that she chosen her words poorly. Her son was right. Although she had coordinated his health plan and provided daily support, she had never undergone the challenges he faced. To assume otherwise was not fair.

“He was always an enigma to doctors and nurses,” she recalled. “Even when he was little, he asked questions about chemotherapy. He wanted to know everything that was going into his body and what its effect would be.”

The medications had short-term effects, including hair loss, nausea, hives. Long-term effects included developing diabetes and even an increased risk for different forms of cancer. Linda was by his side through all Joe endured.

“Attitude is important, and he had such a positive attitude,” she said. “We believed that after eighteen months, the journey would be over and Joe would be cured.”

Joe faced new obstacles along the way, including pancreatitis, and later, becoming an insulin-dependent diabetic.

“There were plenty of times when Joe could have complained, but he didn’t,” Linda reflected. “He never turned mean or hateful. He’s never worn his troubles on his sleeve, and he could have, many times over. I sometimes forget he’s been through so much. How can he have endured everything and still be a good, wholesome person?”

Linda shook her head, searching for the proper words.

“Joe says I made him strong, but that’s not the way it was. The reality is he kept me strong.”

Chapter 3: Flash

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