A Michigan State hockey player, his father and a fatal disease

EAST LANSING — Scurrying out to his car and speeding toward his son’s middle school, Paul Apap was running late.

That wasn’t like him.

A corporate attorney by trade, Apap prided himself on being accountable and on time. His wife, Maureen, was already in the audience. She gave him that look. Not only was he tardy for their son, Tommy Apap's, eighth-grade graduation, he wasn’t wearing a tie.

Because he couldn’t knot his own tie. That's the reason he was late. 

This wasn’t the first warning sign. At a Christmas party in 2009, he couldn’t carry a tray of food. He feared he'd had a stroke.

Now, both seem like landmark moments.

Days later, inside a doctor’s office in suburban Detroit, Paul Apap heard three letters, the name of a disease that would leave him a prisoner in his own body.

Motionless from the neck down and sitting in a black, electric wheelchair on a wintery Thursday night in East Lansing, Apap said he knew very little about ALS, a fatal neurological disease that causes dysfunction in the nerves that control muscle movement. 

He had read “Tuesdays with Morrie,” a story about an elderly man with the disease. All he knew is it is a certain death penalty.

His doctor gave him 2 to 5 years.

It's been more than seven.

Slowly, his arms gave up on him. Then his legs. He has been in a wheelchair since 2015.

Paul said he is “blessed” that he has a slow-progressing form of ALS, commonly referred to as Lou Gehrig’s Disease. It has prolonged his life. On the other, it has simply delayed the inevitable.

It’s a long, agonizing goodbye, a farewell tour that could end at any time. 

The diagnosis was "overwhelming,” Apap said. “It was devastating news. It was like we were blindsided. We didn’t see that coming. Shortly after, we realized our goal has to be keeping our three young kids’ lives as normal as possible.”

The family motto became: Acknowledge. Proceed. Live.

And in Paul’s case — positivity.

That frame of mind has paid major dividends for his children.

Tommy Apap's youthful grin and playful nature can fool you. Inside, the Michigan State freshman is scared. Only his father’s attitude helps to ease his thoughts as he prepares for each game as a member of the Spartans hockey team.

Playing at MSU has always been Tommy Apap’s dream. 

On this cold Thursday night in January, the Spartans are hosting 13th-ranked Minnesota. And on a concrete platform 15 rows up from the ice in a shady corner of section D, Paul eagerly looks on during warmups. He's wearing a green MSU hoodie and covered in a blanket of the same color. The illness may have claimed much of his body, but not the joy in his eyes.

His son can feel it, too.

“Yeah, I look up there,” Tommy Apap said, peering up to his parents’ seats. “It’s nice to see him up there, because he was my coach growing up and for most of my life. He built a rink in our backyard. Those are some of my favorite memories. As a kid, he was wheeling us around out there, teaching me how to skate and shoot a puck. That’s where my love of the game grew.”

'A really lucky guy'

Before making the 88-mile trek west from their home in Bloomfield Hills to East Lansing on game day, Maureen Apap goes through a rigorous routine. An in-home nurse helps Paul in and out of bed, assists him with hygiene and getting dressed.

Maureen, his primary caretaker and his wife of 23 years, handles the rest.

When it comes to traveling, logistics play a major role. Where will they park? How will she get him into the rink? What if it’s rainy or cold?

“She is amazing. She really is,” Paul said in a hushed and weakened voice. “I am a really lucky guy.”

Paul credits his wife with making his day-to-day as painless as possible.

Maureen disagrees. She smiles. It is Paul’s spirit that makes her family go, she says.

“I think it’s a lot of work and effort on his part to be so positive and optimistic,” she said. “It’s a gift for our kids and our family that he is like that, because it makes our lives happier. If he’s not happy, it’s hard for us to be happy. Every day, he really tries to embrace the best part of his life. He has a lot of faith, and I think he leans on that a lot, so we do, too. We just try to follow his example.”

95% of the time, life is good.

It’s the remaining five that Paul wishes would go away.

There are moments when he cries to the sky. Why me? Why did this have to happen? What did I do to deserve this?

His family has those moments, too. They quickly fade away thanks to Paul’s quick wit and loving nature.

Tommy Apap didn’t know if he even wanted to go to play junior hockey or leave town for college. He was an emerging hockey star in the Detroit area, but after his father’s diagnosis, he didn’t know if he could leave his side. He didn’t want the burden to fall to his mom. As the oldest, he didn’t want to leave his two younger siblings, Teddy and Ellie.

Paul was having none of that.

“I think that was hard for (Tommy),” Maureen she said. “Paul wants them to go and do their life and follow their dreams. So, I think him giving not only his permission but his insistence helped.”

This was Tommy’s chance to show what he learned on the backyard rink. 

“My dad really wanted me to go, and he encouraged me,” Tommy said of his first year of juniors in Texas. “It was hard being so far away and not knowing how he was doing. I mean, I called all the time, but not knowing what was going on made it tough. Talking to him on the phone made everything easier.”

Paul is good at that.

A son's resolve

Danton Cole calls Tommy Apap a leader.

MSU’s first-year head coach raves about Tommy’s character. He calls him genuine — “someone you can win a championship with.”

Through 22 games, Tommy has a goal and a pair of assists. The 6-foot-2, 202-pound forward tallied his first collegiate goal in the Spartans first win of the season, a 3-2 home victory over Bowling Green. His most impressive stat has come in the face-off circle, where Tommy leads all rookies in the conference and is third in the Big Ten.

Cole said he has been impressed with Apap’s resolve. He knows what is going on at home. He also knows how difficult it is to be a student-athlete.

“I think you find out when things are like that what kind of people they are,” Cole said of Tommy’s ability to focus through adversity. “He’s a tremendous young man to have around. He’s mature and plays hard. You need guys like that. We are lucky to have him.”

A shoulder injury sidelined Tommy midway through the season. He missed six games. He feared it would be more. When most players would find reasons to sulk, Tommy did the opposite.

And it all stems from a life-changing family conversation on a June day in 2010 that he wishes he could forget.

It was Father’s Day. And his own father had disturbing news.

“That was obviously a horrible day,” Tommy said. “I didn’t know what ALS even really was. Once he explained it, it was pretty much some of the worst news you can get. It was really tough for everybody. When he was telling us, he didn’t even cry. It’s just incredible how happy he still was and how positive he was about the whole situation. He just told us everything was going to be OK.”

That was a lie. And Paul knows it.

He wanted to soften the blow. He wanted to put a positive spin on it. He just failed to find the words.

“We just laid it out for them and said, 'this is the diagnosis and it’s not good. There’s no cure for this. Let’s just make the best of every minute we have together,'” Paul said. “They have been extremely helpful and that’s a big part of the reason why I am still here.”

'I can't have a bad day'

Roughly 6,000 people in the United States are diagnosed with ALS each year. More than 20,000 people are living with the disease, the ALS Association says.

Only 10% of patients live for a decade after diagnosis.

Paul wants to make it 11. At the very least.

That’s when Tommy should walk across the stage as an MSU graduate just like Paul did back in 1987.

Paul is optimistic about the future. He said ALS is not an incurable disease, it’s an underfunded one. He pointed to the ice bucket challenge as something that brought ALS to the forefront of people’s minds.

“I just told my family that I need to hang in there long enough for a cure or a treatment,” he said with a grin.

He lives for nights like this. Watching his son fly around the ice, his only care in the world is making a play and doing his job.

“When I get to see Tommy play, feel really lucky,” he said. “I forget about (ALS) on nights like this. It’s a way to get away from everything and really enjoy it.”

Time is also not the Spartans friend on this night. Apap and his teammates battled back to erase an early two-goal deficit, but in the end, couldn’t get the winning tally. MSU fell 5-4 to the visiting Gophers.

Visually unhappy, Tommy made his way up the concrete stairs toward his parents. He hugged his mother first before leaning down and giving Paul and kiss on the forehead. His bad mood was fleeting.

“Whenever I’m down about something, I try to think, my dad is never down about anything,” Tommy said. “Whenever I say, ‘dad, how are you doing?’ He says, ‘it’s a good day for a good day.’ That’s nice to hear from a guy who has one of the worst diseases ever.

“I can’t have a bad day compared to what he is having.”

Carrying the burden

Paul said a priest once told him that God never gives people a cross that you can’t carry. He respectfully disagrees. Paul said God gives you people to help carry that burden.

The people who carry Paul’s cross are scared.

Maureen said watching a once-active man who once coached hockey and built rinks yearly relegated to a chair has been devastating.

“Oh yeah, I’m scared,” she said. “He doesn’t seem very scared.”

Paul can’t deny it, he is fearful, too. What if he needs to cough and can’t? What if he can’t swallow? How long will it be until he relies on the assistance of a feeding tube or a breathing machine?

He feels good right now. Only his voice has weakened over the last year.

Inside Munn Arena that night, his smile said more than words. For Paul, wins and losses don’t seem to matter quite as much these days.

“I really have a different viewpoint on life now,” Paul paused. “I realize — a lot of times — will this be the last time I will be here? So, I want to make the most of it."

Contact Cody Tucker at (517) 377-1070 or cjtucker@lsj.com and follow him on Twitter @CodyTucker_LSJ

MSU HOCKEY

WHO: Michigan State vs. Penn State

WHAT: The Spartans host their final home series of the season

WHEN: Friday, Feb. 16 at 6:30 p.m., and Saturday, Feb. 17 at 5 p.m.

WHERE: Munn Ice Arena, East Lansing

TV/ RADIO: Big Ten Network/ Spartan Sports Network