John Hirschbeck's Survival Guide

This article originally ran on Sports on Earth.

POLAND, Ohio -- There is a barn on 11 acres of property in this village southeast of Youngstown. And in that barn, there is a book.

The book is not the first thing that captures your attention. Your eyes will likely dart toward the stuffed Osceola wild turkey that guards the door, the large photo of a black bear from the Florida swamps that hangs on one wall or the John Deere tractor holed up for another long winter.

But you'll soon get to the book with the green cover and orange lettering. It's titled "How to Stay Alive in the Woods," and hunters such as John Hirschbeck, the owner of this barn and this book, consider it indispensable.

You might look at the book, which sits on a coffee table between two leather recliners, and ponder everything Hirschbeck, one of the game's longest-tenured and most-respected umpires, has endured. Think about the two sons he lost to a rare disease and the cancer he twice battled and beat. Then listen to him talk about his decision to go back to work in 2015, about the gratitude he feels, about the faith he holds in a God that some would say has let him down.

That's when you realize John Hirschbeck doesn't need somebody else's guide to survival.

He's already written his own.

Chapter 1: How to Treat a Wound

Breakfast. The Golden Rye Grille. The place is packed with high school kids on their winter break and families enjoying the holiday season. And here's Hirschbeck, a few months after his 60th birthday and four days after Christmas, picking at a spinach and tomato omelet and telling you about the morning his youngest son died.

This isn't fair, you think, because that's what you're supposed to think. But the warmth and color of the holidays only serve to underscore all that has been taken from Hirschbeck and all that has just been given to you, a new father with an 18-day-old baby at home.

"Believe me," Hirschbeck says, "if someone had told me when I was a young dad like you that this is what's going to happen, I'd say, 'Give me a gun! I'm out! I'm shooting myself right now!' But when you're faced with something, you just say, 'Why not me? Why should it be anybody else? What makes me different?'

"You have to realize that. Otherwise, you're going to cry for yourself forever."

For Hirschbeck, the first hard tears came in April 1992. That was when he and his wife, Denise, learned that 7-year-old John Drew, or "Little John," was diagnosed with something called adrenoleukodystrophy (ALD) and given one year to live. That was also when John and Denise learned that their 5-year-old son, Michael, had the same disease and that their 3-year-old daughter, Erin, and 8-month-old daughter, Megan, were ALD carriers.

ALD, they would learn, is a genetic disease that affects a small subset of the population (the latest estimates from the ALD Foundation are 1 in 17,900 boys worldwide, which is why Hirschbeck calls it "winning the lottery in reverse") and destroys the protective sheath surrounding the brain's neurons, affecting thought and muscle control. And while women can carry ALD and pass it on to their children, the disease mostly plagues boys and men, for whom it usually leads to death or permanent disability within two to five years of diagnosis.

This, doctors explained, must have been the reason Denise's uncle, Charles, had died at the age of 7 in the 1930s. And because Denise did not have brothers, the disease went undetected for a generation.

With treatment of the disease limited to experimental measures, doctors suggested a bone marrow transplant for young John. But there was too much pressure in the boy's brain to perform the procedure. Michael, however, was a genetic match with baby Megan, so he received a transplant from his sister.

For Little John, it was too late. On March 7, 1993, 11 months after his diagnosis, the 8-year-old died in his parents' arms.

John still thinks about his oldest son every day. All he has to do is hear an Alabama song to remember how, at such a young age, Little John had memorized every word. All he has to do is see the John Deere that sits in the barn -- the one John and Denise bought for their son for his last Christmas present -- to recall how much he loved those tractors. Friends had wheeled it down the Hirschbecks' street on a flatbed on Christmas Eve, delighting the child. That was the last time John heard his little boy laugh.

The pain of losing Little John never left, but Michael's survival was the one victory that emerged from that devastating time.

Not that Michael was unaffected. For his entire life, from April 1992 forward, he suffered consistent seizures that prevented him from driving a car, moving out of his parents' house, maintaining a steady job and living anything resembling a so-called "normal" life.

Still, he never complained. And not once did he ask, "Am I going to die?"

Baseball was what Michael lived for. He loved the sport, loved tagging along whenever John would umpire games in Cleveland or Pittsburgh, loved the friends he made in the locker room. His favorite team was the Indians, and he worked as a bat boy for every Tribe manager from Mike Hargrove through Terry Francona, as well as for multiple visiting clubs. On special trips, he got to fulfill the same role in Yankee Stadium, in Fenway Park, in Camden Yards. And every March, Michael would be right alongside his dad in Florida, on the Spring Training circuit. That was the one time of year when father and son were inseparable.

Michael was lost a lot of places in life. A ballpark was not one of them.

Sometimes, he would have a seizure and try to hide it from his dad, lest it ruin his chance of going to that day's game. One time, he suffered one while sitting in the Rangers' dugout during a spring exhibition in Port Charlotte, Fla., and John, who was behind the plate that day, remembers the sight of Michael lying in the lap of manager Johnny Oates.

During the season, when John would be on the road for weeks at a time, it was Michael and Denise. Always. Megan became a pre-med student at Ohio State; Erin moved down to Tampa, Fla. But Michael remained. Whether it was yard work, shopping or picking Dad up from the airport, he and Denise were always together, and Michael always had the support he needed.

"We thought we'd have Michael forever," Denise says.

On April 7, 2014, John was scheduled to work the Indians' home game against the Padres, but he could tell from the weather forecast that the game was bound to get called. He told Michael, who was coming down with a cold, "Don't bother coming along." To which the undaunted Michael replied, "Yeah, right."

So Michael packed up his bag, planning to be a bat boy for Francona, and the two got in the car for the 80-mile trek to Progressive Field. Halfway there, John got the call he expected: The game was postponed. So he turned around, headed home, and then John, Michael and Denise went for a drive through the countryside.

They loved those drives. It was their time to chat, to catch up on all John had missed in his time away. And afterward, the three settled in and watched UConn win the NCAA men's basketball national championship before retiring to bed.

The next morning, John and Denise were going to run some errands, and Denise went to Michael's room to see if he wanted to tag along.

That's when John heard a horrible sound.

"I had heard her scream so many times when he's had bad seizures," John says. "But yet, there was something different. I ran upstairs, and we found him, face down. He had suffocated. He had what's called a grand mal seizure."

He was 27.

In the aftermath, Denise would ask aloud, "Why didn't I hear him? Why didn't I go down there earlier?" And John would remind her that they were there for their son through everything, through the bone-marrow procedure and God only knows how many seizures. This time, he said, it just wasn't meant to be.

That sight, though, of Michael getting taken out of the house? You don't get over that. You don't get over any of this. What you do, if you're John Hirschbeck, is remind yourself that terrible things happen in the world every day and that you are as susceptible to them as anybody else.

So rather than succumb to self-pity, hit the bottle or wreck your marriage, you do your best to keep going.

Because your family needs you.

Chapter 2: How to Find Shelter

After breakfast, back in the barn, John gets a call from the bank. He and Denise are about to close on a plot of land a few miles from here. They've lived on this property for 23 years and finished a drastic renovation of their house about a year ago. But that was before Michael died. There are too many memories here. And so the home, the barn and the vast tract the Hirschbecks call a "backyard" will go on the market this spring.

John and Denise will build something new.

That they are still together after the death of two children is a simple testament to the strength of their bond. The two have been tested in unimaginable ways, and Michael's death has been particularly hard on Denise.

"I have so much respect for her as a person, as a mother, as a human being and as a friend," John says. "I think that a marriage is more about friendship and respect than anything else. I've learned that in life. You marry your best friend, and you show them respect."

Megan and Erin are both home now. After Michael's death, Erin moved back north, and Megan is working at a nearby hospital before she begins medical school this summer. And so the umpire, his daughters and their three German Shorthaired Pointers -- Macie, Ellie and Dixie -- are all here for one another and, most important, for Denise.

"Grieving is not something you really do together," Denise says. "We each have our meltdowns, but we have them at different times. I cry every day. So at times, John doesn't want me to see him get upset, because he doesn't want to upset me another time that day. We communicate a lot, we talk a lot. And that helps. It keeps us close."

The holiday season was especially trying. The Hirschbecks put a wreath on the door and strung a few lights around a pole, but that was it. No tree, no ornaments, no candles. On Christmas Eve, the four of them ate dinner, then went to the cemetery where John Drew and Michael Craig were laid to rest. They stared solemnly at the gravestones of two boys dealt an impossible genetic hand.

It hasn't gotten easier, but the Hirschbecks have taught themselves small ways to avoid situations that might evoke emotions.

Take church. The Hirschbecks are a religious family. John even grew up thinking he was going to become a Catholic priest until the day he started calling balls and strikes for $5 a game as a way to raise money for his prom. But ever since Little John's death, the family doesn't attend services. Church is supposed to be a happy time, a family time. And the sight of full, happy families packing the pews is hard on the Hirschbecks.

But John still prays, and he thanks God all the time. For an employer that has been so understanding and so helpful. For the friends and family members who have been there for him. And for life itself.

John was first diagnosed with testicular cancer in 2009. The tumor was removed, and he was told the cancer had just a 5 percent chance of recurrence. Just a little more than two years later, however, John found himself in agony in his lower back. He went to the doctor the Monday morning after the 2012 Super Bowl and, after a brief check, was told to go straight to the hospital. He was dangerously close to renal failure and had to go on dialysis for the next three days. A large, cancerous tumor was pushing on his kidneys. Had he waited one more day to go to the doctor, he was told, his body would have shut down.

Having beat cancer both times, John knows what it means to fight for your life. And he also knows that dreadful feeling of going in for an MRI every few months for yet another check to see if the disease has come back. But through it all, he remembers what his sons went through, how strong they were, the quiet dignity they displayed in the face of an unfair fate.

"OK, God," he'll think, "whatever you can give me, I can handle."

Little John and Michael didn't get to enjoy a life fully lived. And yet, in their own way, they taught their father how to survive when the world deals its harshest.

Chapter 3: How to Build a Fire

It's mid-January, and John is getting ready to head to Phoenix for a series of umpires' meetings, the ceremonial start to another baseball season. Crews and schedules have been assigned, and a five-year labor agreement with Major League Baseball has been ratified.

John, though, might not work the length of that contract. He didn't even expect to make it this far. He was going to retire at 55. That was the plan. But then he had neck surgery. Then cancer. Then back problems. Then cancer again. All these things kept limiting his workload and delaying his timetable. He was finally ready to hang it up after the second bout with cancer, but something stopped him.

It was Michael.

"Dad, you can't retire," Michael had said. "You've got to work another year."

So he did. Hirschbeck was crew chief at the jewel events, the 2013 All-Star Game and World Series. Michael and Denise were with him for both. It was a year to remember. And John decided to keep going in '14, only to have his season ended abruptly on that awful April morning.

That John didn't work another game after Michael's death wasn't entirely by choice. He had hoped to return after the All-Star break, but one day, just a few weeks after the funeral, he tripped on the back patio, broke his kneecap and tore his quadriceps. Yet another hurdle.

It turned out to be for the best, because by midseason Denise still wasn't ready for John to leave for weeks at a time. And though John's physical state didn't lend itself to the extensive travel of the typical umpire's schedule, he did, late in the season, begin spending a few days at a time in New York, serving as a replay official. It felt good to be involved again, even on that limited basis.

The umpire has other interests and pursuits. He's putting together the plans for the new house. He loves to go on hunting trips with his buddies. He's got a stake in a restaurant opening soon in his Stratford, Conn., hometown. He and Denise serve on the board for The Difference Makers, a local nonprofit that helps the underprivileged and disabled.

But the field still beckons.

John, who turned 60 in September, has thought about how difficult this is going to be. It's not the travel. It's not the long nights. It's not the occasional arguments over balls and strikes.

It's Michael. It's knowing his son won't be there on March mornings, won't be packing up his bag for another day of volunteering at the ballpark, the place where he was happiest. Christmas didn't mean nearly as much to Michael as the first day of the Grapefruit League schedule, so this will be even harder than the holidays.

But John wants to do this, for himself and for his family. Denise has mixed emotions about her husband going back on the road, but husband and wife agree this is what Michael would have wanted. John thinks about last season and concludes, "I don't want to go out like that." So he'll do this season, and then see what the future holds. He'll go out on his terms.

Many baseball fans know Hirschbeck, who worked his first Major League game in 1983, as the umpire who was spat on by Roberto Alomar. Not as many know about the relationship the two men would go on to form, with Alomar making generous donations toward ALD research.

Alas, as is the case with many rare diseases, the research remains underfunded, and the treatments -- mostly dietary in nature -- remain experimental. The vicious disease remains an inescapable presence for the Hirschbecks, though genetic counseling would be available to Megan or Erin if they were to conceive a child. In fact, the extensive travails endured by the family were what inspired Megan to pursue a career in medicine.

"It just seemed a natural choice," she said.

As hard as it seems, as unfair as it seems, the family members will continue to count the blessings that remain in their lives. For John, those nine innings a night will be a welcome diversion, and he thanks God for the opportunity and for the health to seize it.

This faith in God, this gratitude toward God … one would think it would have its limits. One would think that, at some point, a man like Hirschbeck might assume his face is on God's dartboard.

John used to tell people, "When I get to heaven, I'm going to kick His butt, and then I'm going to give Him a hug."

His friends would laugh.

Until one day, one of them -- a close friend of Denise's -- didn't.

"How dare you say that?" she said. "God doesn't put these things in front of you to challenge you. That's life. And it's your faith in God that gets you through those hard times."

So this is what John Hirschbeck remembers. This is what he's learned about survival. God's not out to get him. The thought of "Why me?" is worthless. It's the love for his wife, the love for his daughters, the character instilled in him and his unyielding belief in a higher power that have allowed him to carry on.

And now, at the dawn of a new year, it's time to get back to work.