Nutley singer remains optimistic while facing an impossible future with ALS

A week ago, he was signing the “Star Spangled Banner” at Yankee Stadium in the Bronx. Sure, sure, he’s sung the anthem before at pro sporting events before — including for the New Jersey Devils and the team once known as the New Jersey Nets.

But this.

This was different.

This was a bucket-list item for Nutley’s Jerry Tolve.

And it all happened by fate (and we’ll get back to how it happened later.)

But there he was, on the Jumbotron, for every one of the 13,824 fans who were lucky enough to get into the House that Steinbrenner Built. Because of pandemic rules still in play, the size of the crowd was limited to 29% capacity.

It was June 2, 2021. Major League Baseball teams across the country were hosting Lou Gehrig Night. And as luck would have it, the Yankees got a rare 4-3 win over the dreaded Tampa Bay Rays to top it all off.

Yet it was extra special, wasn’t it, considering Amyotrophic Lateral Sclerosis (ALS) is also known as Lou Gehrig’s Disease. And, just across the street, where the original Yankee Stadium once stood, Gehrig delivered one of the most iconic speeches in sports history — perhaps in modern American history, period — when he said he considered “myself, the luckiest man on the face of the earth” on July 4, 1939, having learned he was going to die.

Gehrig was only 37 when lost his life June 2, 1941, less two years after he delivered the stunning speech.

There he was. A Nutley guy. A man who has accomplished so much as a singer. A guy who has belted out tunes on stage with the likes of Stevie Wonder, Whitney Houston and countless other household names. This was something special. It was an item for Tolve, as he acknowledged, to check off his bucket list.

And though you might not have been able to notice from the video of his anthem rendition that was pre-recorded since non-players weren’t allowed on the field that early June night — thanks again, COVID-19 — Tolve, whose singing could make the late Robert Merrill jealous, has something in common with Gehrig.

He, too, has ALS, a diagnosis he only learned of nine months ago.

We spoke with Tolve late last week about his experience at the Stadium, but also about being afflicted with a disease that will, barring a medical or scientific breakthrough of epic proportions, take his life sometime in the next 4¼ years. He was told by doctors he had between 2 to 5 years to live when he was diagnosed in September 2020.

Three-fourths of that first year have already gone by.

And the ALS, a progressive neurological disease that weakens a human being’s muscles, has already taken a strong grip on Tolve, though you’d absolutely never know it based on the way he speaks so bravely and positively — and how he has accepted the reality that one day, when his disease progresses to the very end, it will literally suffocate him — his lungs will no longer be able to expand enough for him to properly breathe.

“It shocks you at first,” Tolve says. “But it would be easy to sit there and cry. I am a performer. I can’t cry. I have to be able to sing. My lung capacity is at 75% now. When I sang at the Stadium, I had to wear two belts — one on my waist, another on my diaphragm” to help sing properly.

While he says he could be angry with getting a death sentence, he’s not.

“I go at my own pace and get through this with my faith in Jesus,” he says, proudly. “It’s the source of my strength. I don’t blame God for this happening to me. I’ve accepted that this is all in God’s hands and that I am blessed to be surrounded by wonderful friends and family.”

Among those friends is Phil Cuzzi, a Belleville native and Major League Baseball umpire, who has been featured on the pages of this newspaper before by our own Jim Hague. Cuzzi, as fate would have it, is already an ALS ally and has hosted fundraisers for it — including one right in Nanina’s in the Park, Belleville.

Turn back the clock to 1996, and Cuzzi and Tolve have a conversation about getting him in to sing at the old Stadium. Long story short, Cuzzi gets it done — and Tolve is set to sing at the stadium sometime during the ’96 campaign, a special season, one in which you might recall the Yankees were World Series champions for the first time since 1978.

But as luck would have it, it never happened.

“I was actually the one to have to back out,” Tolve says. “It was set for the same night where I would make a lot of money to perform at a wedding.”

And, to make it even more disappointing, the PR woman who made the arrangements with Cuzzi and Tolve — and who said she’d make it happen in the ’97 season — wound up leaving the Yankees for the Minnesota Twins to take a similar position in Minneapolis.

“So I never got that chance,” he says.

That was, of course, until Tolve and Cuzzi talked before the start of the 2021 season.

The ump had Tolve film a rendition of the anthem on his phone.

Cuzzi brought the rendition to Yankees General Manager Brian Cashman down in Tampa in Spring Training. Cuzzi says Cash loved it. And, perhaps perfectly, Tolve was chosen to sing for the first of what will likely be annual Lou Gehrig nights around MLB every June 2.

Perhaps the most disappointing aspect of the whole affair, which Tolve got to witness from the stands with 50 of his closest friends and family, was that the YES Network, the TV home of the Yankees, on Lou Gehrig night of all nights, did not broadcast his rendition of the anthem over the air. (The Yanks did, nonetheless, Tweet the entire video to its followers — you may see it now at www.theobserver.com.)

It appears this has been a YES policy since players began taking knees during the anthem following the death of George Floyd at the hands of former Minneapolis Police Officer Derrick Chauvin.

Yet it was no less disappointing, regardless of the rationale.

“YES absolutely dropped the ball,” Tolve says, whilst noting at least 87,000 people have already viewed the Tweeted video.

Now, as upbeat and optimistic as Tolve remains, the challenges that lie ahead for him are unfathomable.

Since he was diagnosed, his ALS has already progressed so much so that he can’t go to the bathroom without help. He needs a cane now to walk. He continues to perform, locally, but when he plays the piano — something he’s done expertly for decades — he can only use his right hand. The musculature in his left hand and left arm have already depleted enough to make them unusable.

In the coming weeks, he says he expects to begin using a wheelchair.

He says he can no longer brush his own hair — and though he can begin to brush his teeth on his own, he can’t finish without someone’s help. And just a few weeks ago, he drove a car for what he knows will be the very last time.

It has all happened so quickly — nine months to be precise — yet he keeps an amazingly positive outlook on life and plans to continue to sing for as long as he physically can.

“I’m on the ‘Jerry’s Dying’ tour,” he says, somewhat serious, somewhat tongue-in-cheek. “I want more people to be educated about ALS.” And with the help of WABC’s Michelle Charlesworth, he’s pushing for a bill that stalled in Congress to be adopted and signed by President Joseph R. Biden Jr. that would end the long waiting period for those with ALS to get experimental treatments and medications.

“If we have to wait 10 years, but have 2 to 5 to live, what sense does it make?” he says. “We need this bill passed.”

And considering how positive Tolve has been, despite his fate, we can only pray the bill is passed in time to make a difference for him.

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Kevin A. Canessa Jr. is the editor of and broadcaster at The Observer, a place where he has served on and off since 2006. He is responsible for the editorial content of the newspaper and website, the production of the e-Newspaper, writing several stories per week (including the weekly editorial), conducting live broadcasts on Facebook Live, including a weekly recap of the news — and much more behind the scenes. Between 2006 and 2008, he introduced the newspaper to its first-ever blog — which included podcasts, audio and video. Originally from Jersey City, Kevin lived in Kearny until 2004, lived in Port St. Lucie. Florida, for four years until February 2016 and in March of that year, he moved back to West Hudson to return to The Observer full time. Click Here to send Kevin an email.