MISTER COOL
In new book, from day he learned of ALS diagnosis, ‘Ice Bucket Challenge’ of Pete Frates & his family was just beginning
The Internet search browser came up, and Pete took a deep breath. His fingers trembled. He began typing his symptoms into the computer — muscle spasms, fatigue, problems with coordination, weakness. He hit ENTER and waited. Pete’s heart pounded as the Google search engine went to work gathering and collating the appropriate links. The first to appear was a link to the ALS (amyotrophic lateral sclerosis) Association website. The ALS Association defined the disease as a “progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.” The term amyotrophic was an amalgamation of Greek words. “A” means no. “Myo” means muscle, and “Trophic,” refers to nourishment. No Muscle Nourishment.
The disease attacked the nerve cells responsible for controlling voluntary muscles in his arms, legs, and face. The website described particular symptoms that included difficulty walking and struggling to button one’s shirt.
“It was if they had put a camera on me over the last few weeks because that’s exactly what I was experiencing at the time,” Pete recalled.
The website also offered a list of notable individuals who have been diagnosed with ALS. The first name Pete read was Lou Gehrig. Because he was a fellow baseball player, Pete instantly recognized the name. Gehrig, a legendary first baseman for the New York Yankees and baseball Hall of Famer, died from the disease, as Pete recalled.
Pete’s forehead began to sweat, and his mouth went dry. But he read on to discover that ALS was a rapidly progressive disease with no cure. ALS was invariably fatal. FATAL. Pete closed the browser window and retyped his symptoms once again. This had to be a mistake. The search engine spat out another list of websites. Each listing began with three simple yet shocking letters: A-L-S.
He had worked his entire life to build a healthy body, and now his body was rebelling against him in the worst possible way. The pitch that struck his left wrist had turned into the ultimate gut punch.
Once again he gasped for breath, and tears began to form at the corners of his eyes. How could this be? ALS is an old person’s disease ....
As Pete wrestled with the uncertainly of his future in his mind, he thought about his life with Julie.
“I kept thinking to myself, what will she say if I have to tell her that I have ALS? What will she do?” Pete remembers.
He also thought about his parents. Pete knew they would support him as they had done his whole life, but would the one-time college sports star become both an emotional and financial burden on his family? He kept his pain and anxiety to himself, not wanting to hurt those he loved. Each ALS website had stressed that anyone diagnosed with the disease should get a second opinion.
Quietly, Pete began scheduling appointments with doctors around the city of Boston. He told his family and Julie that he was simply getting his nagging wrist injury checked out. Nancy and John believed that it was nothing more than an orthopedic injury that could be corrected by routine surgery or possibly therapy. They were concerned that the wrist injury could affect Pete’s ability to play the sport he loved, but that was it.
The Frates family went about their daily lives, and that is exactly how Pete wanted it. Still, the emotional pressure was building inside of him, as doctors offered no clear answer as to what was wrong. They ruled out several possibilities, including Lyme disease, but they had not ruled out the one condition that Pete had feared most — ALS.
First, doctors began testing the nerves on his left arm — the infected arm, to shock the nerves and gauge his muscle fiber. They continued to poke and prod elsewhere, a needle behind his ear, another under his chin. They asked him detailed questions about his ability to walk and whether he had difficulty buttoning his shirt.
“I had a freak-out moment right there,” he remembers. “Like me, the doctors were beginning to fear that I had Lou Gehrig’s disease.”
Several months passed and Pete’s concern grew, as the disease continued to destroy his muscles slowly and methodically. He finally shared his fear with his girlfriend Julie while the two lay in bed during a ski trip to Maine — a trip Pete knew would be his last.
“I’m scared baby,” he told her as she snuggled in his arms. “For the first time in my life, I’m truly scared about what’s gonna happen to me.”
Julie wrapped her arms around his stomach, squeezing him tighter.
“Whatever it is, we will tackle it together,” she replied with a soft kiss to his shoulder. “I love you.”
The words comforted Pete, but, inside, his mind raced, as he remained immersed in fear and doubt. Pete did not mention the dreaded acronym ALS to Julie that night. He would not speak of it until there was a formal diagnosis. Pete pulled Julie close and stared at the ceiling, waiting for sleep to come.
Pete was sitting on a time bomb. Doctors wanted to see him. They had finally discovered what was wrong. Pete had braced himself for the news but understood that
it would blindside his family. He called his mother.
“Mom, I have a doctor that has found a diagnosis for my nagging wrist,” he told her. “Do you and Dad want to come to the appointment with me?” “Of course,” Nancy replied. They arrived at the neurologist’s office at Boston’s Beth Israel Hospital a few hours later. Nancy and John had taken separate cars, as both were going to head off to work afterward. Nancy arrived late due to wet weather that had locked up traffic across the city. She entered the examination room, where Pete and John were waiting with two doctors. Minutes later two more physicians filed into the small room.
Dr. Seward Rutcove, the chief neurologist, grabbed a chair, pulled it close to the family, and sat down.
“Well, Pete, we’ve been looking at all the tests, and I have to tell you, it’s not a sprained wrist,” Dr. Rutcove said in a sober tone. “It’s not a broken wrist, it’s not nerve damage in the wrist, it’s not an infection, and it’s not Lyme disease.”
Nancy looked at the doctor curiously. Where’s he going with this? she thought.
Dr. Rutcove placed his hands on both knees and leaned forward, staring directly into Pete Frates’s eyes.
“I don’t know how to tell a twenty-seven-year-old this. Pete, you have ALS.”
Pete nodded in agreement, hearing the words he had hoped to never hear. The diagnosis was now official. However, Nancy and John did not fully understand. Nancy thought back to her own cancer diagnosis decades before. Surely, like other diseases, early detection of ALS meant a positive prognosis. Her husband was also hopeful.
“ALS? Okay, what’s the treatment?” John asked.
“Yeah, let’s go,” Nancy added. “What do we do? Let’s go.”
Dr. Rutcove sighed as he turned his attention to Pete’s parents.
“Mr. and Mrs. Frates, I’m sorry to tell you this, but there’s no treatment, and there is no cure.” No treatment. No cure. Nancy got up and ran out of the room. As she entered the hallway, her knees buckled and she collapsed onto the nearest chair, sobbing.
“Oh my God, my son’s going to die,” she screamed.
Nurses surrounded her. John rushed to comfort her. Nancy felt like her heart had just been ripped from her chest. In her mind Pete was still the baby who had fought so hard to live after a staph infection. He was the naturally gifted adult with the physique of a champion. How could this be true? How could a disease like ALS affect her son? Nothing made sense. Nancy fought to regain her composure. The last thing Pete needed to deal with right now was a hysterical parent. She took several deep breaths and wiped away the remaining tears. It was time to be strong.
After several minutes she returned to the examination room and put on a brave face for her firstborn son. Still, the realization of Pete’s fate was too much for Nancy and John to comprehend. They knew that both of them would not be going to work that day, and their future had suddenly shifted under a cloud of uncertainty.
They drove back to the family home in Beverly and immediately called Pete’s siblings Jenn and Andrew to come home. Pete had to drive to Boston College to pick up Julie and tell her the news.
Pete sat in his car as it idled in the parking lot in front of Julie’s dormitory. In his mind’s eye, he could still see the look of fear and hopelessness on his mother’s face from just hours before. Pete was sweating. He was about to tell the love of his life that he was stricken with a disease that could shorten his life span to just five more years. He had been given a death sentence, and he could not imagine sharing that burden with her. But he could also not imagine living the rest of his life without her by his side.
The front door of the dorm opened, and Julie stepped out, wrapped in a light coat, her long blond hair blowing in the March wind. She looked into the car and caught Pete’s eye. Julie froze. She sensed something was wrong.
Pete stepped out of the vehicle and called her over.
“Get in the car, baby. We need to talk,” Pete pleaded. Julie did not move. “C’mon. Please get in the car.” She walked toward him. “Tell me. Tell me what the doctors said.”
“I’ll explain when we get back to Beverly,” he replied. Julie stood her ground. “I’m not getting in your car until you tell me.”
Pete paused, trying to find the right words. “I’m sick.”
“I know you’re sick,” she said. “How sick?”
He looked down at his feet, unwilling to meet her gaze.
“I have ALS. I have Lou Gehrig’s disease.”
Taking a deep breath, Julie took a moment to process the news. “Take me home,” she told him. Pete looked back up at her. He feared that she would have this kind of reaction, but he had resigned himself to the thought of losing her forever.
“You want me to take you back to Marblehead? I guess I understand.”
“You don’t get it,” she replied. “I need to tell my mom that I’m leaving BC.”
Julie wrapped her arms around his neck. “And then I’m coming home to you. You are my home.”