‘This disease does not discriminate’: Former Jesuit star Jeremy Merz battles ALS
Jeremy Merz can’t do the things he’d really like to do, tasks and joys his heart and soul crave.
The tasks include engaging in lively conversation. Or chasing down his 4-year-old daughter Jordyn with a ball in hand. Or tending to his month-old twin girls. Or debate and discuss the merits of his job in pushing for fairness as a lawyer, or in insurance, or as a lobbyist.
Merz has much to give. If only his body would cooperate.
It won’t. And that’s the crusher about ALS. Merz towered as a 6-foot-7 football player at Jesuit High School in the late 1990s. He went to Idaho State to play in the trenches. Just a year ago, he could hike up and down a coastline without breaking much of a sweat.
But it was also about a year ago when Merz sensed something was off. There were muscle twitches that alarmed him. His hands didn’t feel right. He struggled to do normal things. His condition got worse.
You know where this is going. Amyotrophic Lateral Sclerosis is a progressive disease that affects the nerve cells in the brain. It leads to a loss of muscle control. ALS is often referred to as “Lou Gehrig’s Disease,” named after the famed New York Yankees star who died from it in 1941 at age 37. Merz is 42.
All these decades later and the progress isn’t fast enough to help people survive. There is no cure. The prognosis is always grim. In time, the disease takes control of the muscles required to move, to speak, to eat and, sometimes, to breathe. Merz needs help getting dressed. He needs assistance walking and doing normal daily things. Every day is a challenge, he said, but every day he is alive is also a gift.
Merz and wife Megan found out they were going to have twins a month before the diagnosis. He called it a “gut punch to me and my family.”
In a phone conversation, Merz said he was moved that I reached out. Well, no, sir. I’m moved that you sent an email hoping we would at least retweet The Greater Sacramento ALS walk in Elk Grove on Saturday at 10 a.m. to help raise awareness. I remembered Merz from his Jesuit playing days, how coaches raved about him, how he was a big-picture speaker even then, mature beyond his years. So here’s a man with much to offer but trapped in a body that once gave him so much to do.
“This disease does not discriminate,” Merz said. “You have to adjust. I appreciate the things that bring me joy.”
He added, “My legs are going. It’s getting harder. You can hear my voice and how hard it is for me to talk. It’s hard. This disease is awful. We’re all still trying to learn what it’s about and that’s why, with the time I have left, I want to do as much as I can to get people to learn about this disease, to raise awareness and money. I’m learning to live every day. I constantly have to adjust.”
I asked Merz if he wondered, “Why me?”
“Oh sure,” he said. “We’ve all got battles in life, every one of us. This is mine. It’s something I’ve got to deal with.”
When I attended Saturday’s Holy Bowl between Jesuit and Christian Brothers at Hughes Stadium, some of Merz’s old Jesuit coaches told me about his plight. It dampened the glow of what was supposed to be a joyous day of football celebration. The coaches spoke about how giving he was, how talented. And how they feel his hurt and anguish.
“Just so sad,” said Ross Evans, Merz’s line coach at Jesuit. Days later, said Phil Nuxol, another coach who worked with Merz, “Sad about Jeremy. Great player and an even better young man.”
Merz has faced hardship before. He didn’t get to play football at Idaho State because of a brain tumor. It was removed. His football career over, he transferred to UC Davis, graduated and later went to law school. Merz was emotional in talking about the outpouring of support. It’s true what they say. You find out in a hurry who cares when you’re in need of a hand. He is moved by the money raised through an ALS profile on his behalf.
“I know I’m loved,” Merz said. “People, the way they’ve rallied around me, helping with meals, helping me walk, talking to me, the Sacramento community support has been absolutely amazing.”
Merz and Megan have been married five years. She is an assistant legal counsel for Sutter Health. Husband and wife will be hand-in-hand Saturday for the ALS walk, going as slow as they need to go.
“Megan,” Merz said with the emotion heavy in his voice, “is the strongest person I’ve ever met.”
Megan said she first met Merz in 2008, when they were at the same law firm in Sacramento. She was struck by his smile, how much of a gentleman he was, his height and how handsome he was.
“I thought, ‘Oh, OK! That’s trouble! I was very attracted to him!” she said. “That was in 2009. We didn’t start dating until 2012. He’s an amazing husband, an amazing father, an amazing person.”
She added, “It doesn’t seem fair, but life isn’t fair. It’s such a cruel disease, how it takes away every function you have, and you don’t know how long you’ll live. Our twins are 4 weeks old today (Wednesday). It’s hard to see the difference, these healthy babies, growing, living, and their dad, who’s body is failing him. That’s the hardest thing about this. The body fails but the mind doesn’t. You slowly lose the ability to talk but the mind is still there. I’m so incredibly proud of Jeremy and what he’s done since he was diagnosed, how quickly he jumped into fundraising, lobbying efforts to raise money for ALS research, meeting people at the State Capitol.”
Merz has close friends who stop by his Sacramento home regularly to talk, to comfort him, to help him through his day. This includes Jason Schmelzer.
“Oh, man,” Schmelzer said, tearing up. “I can’t even begin to fathom how much he’s meant to me, to all of us. The grit and perseverance Jeremy has is mind-blowing. He’s staying in the moment. I’m taking notes for personal growth perspective. We work in a rough-and-tumble business, in lobbying, and he’s pulled a lot of knives out of my back, so I’ve got his back.”
Said Merz, “My friends and family, I can’t thank them enough.”
Megan said she isn’t sure how to explain all of this to 4-year-old Jordyn.
Megan will say that, “Daddy isn’t feeling well today.” In time, the parents will tell Jordyn what is happening, why the body fails but the mind does not. For now, the parents soak in the good moments, the laughter.
Jordyn, for example, has delighted in watching her twin sisters — Taylor and Peyton — grow and develop.
“She loves being the big sister and she’s really sweet,” Megan said. “She wants to say hi and give them hugs and kisses. She wants to pet them. Can I pet the babies?’ That’s hilarious.”
Enjoying and appreciating every hour of every day. It’s the one thing Merz can control.