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So yesterday was Pete Frates Day in Boston.  He released a new book about his life as well.  I promised Pete I’d post an excerpt from it to commemorate the day.  Unfortunately Pete forgot to send it until today.  Hey Pete that’s on you bud, not me.  Anyway here it is.   Granted it’s so long I’m not even sure you have to buy the book anymore but I urge you to support the cause anyway.   The medical bills that the Frates have to bear to fight this disease are enormous and 50% of the proceeds are going directly to the Frates family.  In all seriousness there is no better guy or family than the Frates.  It’s been an honor getting to know him over the years and his story is incredible.  Please support the cause and buy a copy.

 

The Diagnosis. An excerpt from The Ice Bucket Challenge: Pete Frates and the Fight against ALS by New York Times bestselling author Casey Sherman and acclaimed journalist Dave Wedge published by ForeEdge on 9/5/2017

That pitch.
He had not felt the same since getting hit by a pitch while playing for the Lexington Blue Sox in the Boston City League playoffs. The pain in his wrist lingered and would
not go away. Soon, the discomfort began to spread. “I started to feel a
twitch in my upper arms,” he recalls. “I thought, okay, I’ll drink an extra
Gatorade, eat an extra banana, and be okay.”

He attempted the remedy, one that always allowed him to bounce back
quickly from a sports injury in the past. But this time, it did not work. His
illness had begun to manifest itself in different ways. He suffered from
mood swings brought on by stress and fatigue. Pete tried to keep up with
the rigors of his job. He was on the road constantly meeting with clients
across New England.

“I’d get on the road at six in the morning and plow through six meetings
during the day,” Pete recalls. “All my life I had energy to spare, but now
I was growing tired very fast.” His sales job often took him to Hartford,
Connecticut, about a hundred-mile drive from his apartment in South
Boston. Halfway there Pete would get consumed by fatigue. He would
look for the nearest rest stop, pull in, and sleep.

“I felt so bad, literally sleeping on the job,” he says. “But my body was
so exhausted. I worried that if I didn’t pull over, I would crash.” Pete did
not let anyone else know what was happening to him because he had no
answers for himself. “This was my secret and I didn’t want to let on that
the soreness in my wrist was just the tip of the iceberg.”

Julie started seeing signs that had her concerned about Pete. For one,
he was sleeping late all the time. When they first met, he would get up
by five o’clock to go work out, but these days he was struggling to get up
by eleven. He was also having trouble buttoning his shirts, and when
she stayed over in his South Boston apartment, she often found herself
helping him do the simplest of tasks. He always loved to cook for Julie, but
that started to be too much for him. One night he spent all day picking
up meat, fish, and vegetables and was exhausted by the time he got back
to the apartment. He asked her to help him cook, because he just could
not physically do it.

Another evening, during a walk home from a neighborhood bar in
Southie, Pete suddenly became legless and needed the assistance of his
buddies to make it back to his apartment. The next day his friends joked
about it.

“Dude, you were pretty bent last night,” one of his friends laughed.
Pete did not see the joke.
“I wasn’t drunk last night,” he confided to them. “Something’s wrong.
Something’s happening to me.”

Pete retreated to his bedroom alone and opened his laptop. He could
not explain to his buddies, to Julie, or even to his parents how he was
feeling. 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 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.

The Frates family received a visit from Jenn and her husband, Dan
Mayo, a short time after. The couple traveled from New York City to share
exciting news. Jenn was pregnant. John and Nancy were overjoyed at
the idea of becoming grandparents for the first time, but Pete responded
differently.

“I told my brother that he was going to have a little niece or nephew, but
I didn’t expect his reaction,” she recalls. “He seemed sad. It was only later
that I truly realized why.” Jenn noticed subtle hints in Pete’s behavior and
his dexterity and realized there might be something more to his nagging
wrist injury. “He was having a hard time cutting into a strawberry on the
kitchen island. He couldn’t hold the knife quite right.”

The Frates household was filled with laughter and love that weekend,
but Pete was sitting on a time bomb. Doctors wanted to see him. They
had 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 Jenn and Andrew to come home.
Andrew awoke that morning feeling tense. He knew his big brother had
a big doctor’s appointment and was not sure what was looming ahead. He
was hoping for the best but feared his brother had a serious health problem.
He never considered that Pete’s problem could be terminal, but he was
concerned that it could be something major that would change their lives.
“Good luck today,” Andrew texted to Pete.
“Tx bro. Ttyl,” Pete replied.

Later that morning Andrew was toiling away at his IT sales job when his
phone vibrated and a text message came up from his dad: “you need to
come home right now.”

He stepped away from his desk and called John.
“What’s going on, Dad? Just tell me what’s happening,” Andrew said.
“You need to come home. We’re having a family meeting,” John said
sternly.
“Dad, what’s happened to Pete?” Tears welled up in his eyes as he paced
in the hallway of the sterile office.
“Just come home, Andrew.”

The phone went silent. Andrew felt like he was going to pass out. His
heart and mind raced. He was on the verge of a breakdown. He scurried
into his boss’s office and burst in, tears pouring down his face.
“I have to go, man. I’m sorry. There’s something with my brother. He
had a doctor’s appointment, and they won’t tell me what’s wrong, but it’s
serious. My parents are never ambiguous like that. I just have to go. I’m
sorry,” he said.

He grabbed his work bag, sprinted out the office door to his car, got
in, and hit the ignition. He raced from his office in Framingham toward
the Massachusetts Turnpike and sped onto Interstate 95 toward Beverly
with no regard for the speed limit and barely holding himself together
on the forty-minute ride.

“What does Pete have? What are we dealing with? It’s gotta be some
form of cancer,” he mumbled to himself.

When he arrived home, John and Nancy met him on the front porch.
Both looked weary and had clearly been crying. Nancy gave him a big
hug and squeezed him tight. She rested her head on his shoulder and
whispered to him, “Pete has ALS.”

“What? What’s that?”
“It’s bad, Andrew. Very bad,” John said, holding back tears.
“Pete is resting upstairs, but he wants to talk to you,” Nancy said.
Andrew waited for his brother. Pete came down after a few minutes
and found Andrew in the kitchen, pacing.

Pete opened the sliding door and asked Andrew to join him on the
back deck. It was a beautiful March day that was unseasonably warm. It
was almost seventy degrees, and there was not a cloud in the sky. The two
brothers sat in lounge chairs side by side, as they had done thousands of
times to talk about sports, girls, school, friends, and their futures.
Pete explained to his younger brother that there was no cure and no
treatment. He laid out, in stark terms, the harsh realities of ALS.

“It’s going to attack my muscles,” Pete told him. “You’re not going to
see this big strong guy anymore.”

Andrew began to sob.

“Suck it up man. This ain’t gonna stop us,” Pete said. Andrew had seen
that look in Pete’s eyes before. It was one of determination and confidence.

It was the look he saw when Pete went to play a big game for Boston College
or St. John’s Prep. Andrew saw no fear in his brother’s eyes. Only the
steely-eyed gaze of a man ready for battle. Andrew fed off Pete’s strength.

“We’re gonna beat this thing,” Andrew said, tears again coming to his
eyes.
“We’re getting to work, man,” Pete said. “I’m putting my work boots on.”
With that, he got up, hugged his brother, and headed to grab his car
keys. He 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.”
It was not what Pete had expected to hear. He thought she would ask
for a little time to process the sobering news instead of committing herself
to him instantly and with purpose. However, this determination had been
recognized by Harvard scientists when she was just a toddler.
Julie was fearless.

Jenn was back in New York City and stuck in an important meeting at
work. Nancy did not want to interrupt her daughter and feared a dire
phone call could potentially jeopardize her pregnancy. She called Jenn’s
husband, Dan, instead and relayed the news. Dan began Googling ALS
for a quick tutorial of what the family was now facing and printed out
some materials. He then jumped in a cab and headed for Jenn’s work. He
pulled out his cell phone and called his wife.
“I’m on my way to pick you up,” he said.
“What do you mean?”
“I can’t tell you right now,” he said. “Just walk out to the street. I’m in
a cab and I will pick you up.”
Jenn got into the cab and her husband broke the news. “Pete has ALS.”
She was confused. Jenn thought her husband was talking about a friend
of theirs, not her brother.
Once she realized the truth, she began howling and screaming in the
back of the taxi. “I can’t believe this,” she sobbed. “Not Pete. I just can’t
believe this.”
They returned to their apartment in Brooklyn and packed their bags
and headed for the airport.
During the flight to Boston, Jenn was catatonic. She could not move
or speak. She thought back to the previous weekend at home with Pete.

She was surprised that he had agreed to an early morning breakfast with
her instead of sleeping in as he normally would have.
“He knew what was ahead, but he wanted one more moment of normalcy
with me,” she recalls. “He knew that bad news was coming and
I didn’t. I think about that a lot and how difficult it must have been for
him, and how happy I am that he did it. ”

The Frates family gathered around the dinner table of their Beverly
home. The clan was in a fog. Nancy passed a few dishes around, and
John, Jenn, Dan, and Andrew took small portions to spread around their
plates. No one spoke. Pete sat in a chair at the end of the table, watching.
It was as if there had been a death in the family, and the departed had
been invited to join them for dinner.

Pete Frates the captain, Pete Frates the leader, had to step up to the
plate. “There will be no wallowing, people,” he announced. “We are not
looking back. We’re moving forward.”
Pete’s voice was forceful. He spoke with authority. His parents and
siblings all sat up straight in their chairs. A bolt of lightning had just
illuminated the room.

“What an amazing opportunity we now have to change the world,” Pete
continued. “I’m going to change the face of this unacceptable situation
of ALS. We’re going to move the needle and raise money to fight.” Pete
explained that he was going to get out in front of this disease like no one
had done before. “I’m gonna convince philanthropists like Bill Gates to
get involved.”

He had been a young man searching for a purpose, for a mission in
life. He had now found it—or it had found him.
That night Pete made grand promises and commitments that could
have seemed far-fetched for some, but Nancy and John knew their son
was capable of great things when he put his mind to it.

A few short miles away, Julie was engaged in a different conversation
with her own family. She had made a decision to leave college and an
opportunity for a normal life to stand by and care for the man she had
grown to love. “There’s no me without him, and there’s no him without
me,” Julie told her mother. “I love him. This is our life now.”

Kate Kowalik heard strength and resolve in her daughter’s voice, and it
would have been impossible to talk Julie out of this life-altering decision.

Julie’s mom gave both her blessing and support, helped her daughter pack
her bags, and then drove her to her new home with Pete and his family in
Beverly. Pete welcomed Julie with open arms, but he had one condition.
He knew how hard she had worked, and he wanted her to finish out her
senior year at Boston College.

“When we received the diagnosis, nothing else mattered to me than
to be by his side, but Pete was able to see the bigger picture more clearly
than I was,” Julie says.

He would drive her daily to campus, where Julie’s professors showed
their support, giving her extra help and the tools she needed to graduate
on time. While her classmates worried about entering the tight job
market and perhaps finding a place to live upon graduation, Julie set her
own goals.

On the night of the diagnosis, lying in Pete’s childhood bed, surrounded
by trophies from his past, the couple held each other close and discussed
their uncertain future. Pete’s mind raced about his newfound mission,
while Julie had a mission of her own.
“I want to have a baby,” Julie told him.
“With me?” Pete asked, only partly kidding.
“Yes with you,” she laughed.
The conversation then turned serious. He placed his hands on her soft,
delicate face. “Are you sure you want to be with me?” he asked. “You have
your whole life ahead of you. You can do anything you want.”
“Shut up,” Julie replied. “I am going to marry you and have your baby.”
There’s was an uncertain future, but there was no uncertainty in her
words. They were not individuals any longer. They were one.
“And I thought that I was the determined one,” Pete said happily.

##############################

The Ice Bucket Challenge: Pete Frates and the Fight against ALS, by Casey Sherman & Dave Wedge will be available at all major booksellers and online at Amazon on September 5, 2017.

50% of all book proceeds go directly to Pete Frates and the Frates family.

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