Chris Carrino: Grace and Dignity in the Face of FSHD

By Lenn Robbins | @lennrobbins

The first time I met Chris Carrino, the radio voice of the Brooklyn Nets, I made a fool of myself.

We were in Cleveland for the Nets season opener against the Cavaliers. Chris was standing, his plate of food resting atop one of those industrial-sized plastic garbage containers.

“Chris, grab a chair,’’ I said.

“I’m fine,’’ he said.

And that was that. Or so I thought.

Later that night I watched him slowly make his way to the Nets’ broadcast position. A black cushion, about eight inches thick (named Phil, after Phil Jackson), was resting on his chair. I figured this was to give him a better view of the action.

After the game I found myself behind Chris as we boarded the team bus. Slowly, he started to make his way up the first step. His body bent forward awkwardly from the waist. I thought he had fallen, or was about to fall.

"Chris, you need a hand?’’ I asked.

“I’m O.K.,’’ he said.

So, check that: The first two times I meet Chris Carrino, I made a fool of myself.

When I got back to my apartment, I Googled “Chris Carrino” and the first result that popped up was “The Chris Carrino Foundation for FSHD.’’

FSHD?

I’d never heard of FSHD. The more I read, the more I could feel my heart plunging into my gut.

FSHD stands for Facio Scapulo Humeral Dystrophy, a form of muscular dystrophy that affects thousands of adults and children worldwide.

Chris had his plate on top of the trash container because it was easier to eat standing up than trying to get up from one of the low, black folding chairs.

And he was laboring to climb the stairs of the team bus because FSHD has zapped a lot of the muscle strength in his legs.

Of course, 20 years ago Carrino hadn’t heard of FSHD either. He was 23 years old, just out of Fordham University where he played in competitive baseball and basketball leagues, when he decided to see a doctor.

His complaints were seemingly minor. He couldn’t run as well as he did. The basketball felt heavy in his hands.

His father suggested he start taking a multivitamin. Wouldn’t that have been terrific? A multivitamin.

If only it was that simple. If only there was a pill for FSHD.

“Picture yourself as a 22-year-old, 23-year-old guy, just out of college with dreams of making it in a very competitive business, which we know this is,’’ Carrino told BrooklynNets.com. “And now all of sudden you’re getting hit with this. It’s a punch to the stomach.’’

Here’s the combination to that first punch: There is no known cure for FSHD. There’s not even any treatment.

But that’s going to change one of these days. Carrino, with the urging of his wife, Laura, is taking a blowtorch to FSHD.

He established the Chris Carrino Foundation for FSHD. On Thursday night, July 17, he’ll host the 4th Annual Chris Carrino Foundation Dinner/Dance at Russo’s on the Bay in Howard Beach.

Carrino has raised more than $200,000, all of which goes to research for FSHD. He’s got scientists and doctors - some of whom had never heard of FSHD - and hospitals around the country working to find a treatment, find a cure.

“I’ve always said this is the most selfish thing I’ve ever done in my life,” Carrino said, “because I did this because I want a cure for me. I have this disease and I want to cure it. I had never even met anybody or spoken to anyone who had until I decided I wanted to launch a foundation.’’

Carrino says this with an intense determination. But when I press him, he softens.

He has lived with this insidious disease for 20 years, the muscles in his legs slowly and cruelly getting a little weaker.

He has learned how to negotiate the portable staircase he must climb to board the Nets’ team plane. He now knows how to position himself to get out of his chair.

But he thinks back to the day he got the FSHD punch in the gut. And he knows that right now, today, some child, or teenager, or adult is hearing the acronym FSHD for the first time.

Chris Carrino is not selfish, not by a long shot.

“I was having a tough day, maybe I fell or couldn’t do something I wanted to do,’’ Carrino said. “My wife was getting frustrated. Laura said to me, ‘You have to try to help yourself. You can’t keep trying to pretend like nothing’s wrong.’’’

“And I just broke down. And I kind of said, ‘This frustrates me more than I ever let on to anybody.’ That’s when I knew I’ve got to start to do something here.

“What can I do to make sure that a doctor has something to tell a young patient, give him a prescription, or something? That’s the kid I think about. The 12-, the 13-, the 16-year-old. The high school, the college student who just all of a sudden is getting hit with this. I got to be able to try to do something.’’

I tell Chris that not so long ago another former New York native, Jimmy Valvano, delivered a speech that led to the creation of the Jimmy V Fund, which has advanced cancer research at warp speed.

I tell him he could do for the fight against FSHD what Valvano has done for the battle against cancer. Chris doesn’t respond to that. He has learned not to look too far into the future.

“I’m not going to let the fear of what’s going to come in 10 years paralyze me in the present,’’ he says. “Right now I have a job I love. I have a family I love. I’m living out the life I imagined for myself.

“Whether we get there or not with a cure or a treatment, we always talk about, ‘Enjoy the journey and not just the destination.’

“The journey on our way to a cure or treatment is to tell the stories – the positive stories of living with this disease – and how you can thrive while still battling this disease and how to get help with some grace and dignity.’’

Grace and dignity.

If Chris Carrino ever decides to write a book, he has the title: Grace and Dignity in the Face of FSHD.

Maybe I’ll be the fool lucky enough to write it.

NOTES: Anyone interested in attending the 4th Annual Chris Carrino Foundation Dinner/Dance or wants to learn more about FSHD can log on to www.ChrisCarrinoFoundation.org