04 May NEWS STORY: Chris Carrino, voice of the Nets, speaks out on disease that afflicts him
April 26, 2014 8:26 PM By email@example.com
Chris Carrino has spent more than a decade as the radio voice of the Nets, the key word being “voice.” So there was no pressing need for listeners to know what he looked like, let alone what physical challenges he faces.
And that was that. Until three years ago this month, when at the urging of his wife, Laura, and with his 40th birthday at hand, he went public about a disease that complicates his life, with the hope of reaching others in the same situation.
Nothing has been quite the same since.
“It was really difficult, because I never would really even talk about it to anybody unless people needed to know,” he said. “Now I stand in front of a room of 450 people at our event and pour my heart out about what it means to live with the disease.
“It’s been cathartic for me to be out in the open with it and not worry about how people perceive me.”
The disease is a mouthful, a form of muscular dystrophy called facioscapulohumeral, or FSHD for short, and differs from the type of MD known worldwide through decades of Jerry Lewis telethons.
FSHD sufferers typically have normal lifespans but endure progressive deterioration in the muscles of their faces, shoulders, upper arms and, in cases such as Carrino’s, upper legs. This results in a very slight frame and makes it difficult to perform tasks such as rising from a low seat or walking up steps or carrying heavy bags — precisely the sorts of things one encounters daily on the grueling NBA travel circuit.
With the Nets leading the Raptors 2-1 in their first-round playoff series, there could be conference semifinal travel in Carrino’s future for the first time since 2007, adding to the thrill of the job and to the demands on his body.
“I couldn’t have done this without the support of the Nets,” said Carrino, who in particular credits his longtime partner, analyst Tim Capstraw.
“A guy like Tim or the equipment managers, or really everybody in the organization, looks out for me on the road and is there to grab my bag or help me up steps or let me hold onto them if I have to walk across the tarmac if there is ice,” he said.
He travels with a seat cushion that makes it easier for him to get up, nicknaming it “Phil” in recognition of a similar one that Knicks president Phil Jackson used during his coaching days.
Carrino, the lead play-by-play man for 13 years — dating to the first of the Nets’ back-to-back NBA Finals seasons in 2001-02 — has not had that role because people feel sorry for him.
His work is highly regarded, and he is a cherished member of the Fordham alumni club that dominates radio and TV play-by-play gigs for New York-area teams.
It was shortly after his Fordham days that Carrino was diagnosed, and in the ensuing 20 years, he has watched his body gradually give out on him. But although there is no cure, during the past year, he has improved how he feels through acupuncture, diet changes — yup, that includes kale — and even dabbling in meditation.
“I sort of said to myself, I have to control the things I can control,” he said.
Carrino, 43, never had so much as met a fellow sufferer before going public. Now he is asked to speak to groups and individuals and runs a foundation (chriscarrinofoundation.org) that hosts a fundraising dinner each July.
“It’s been an amazing three years, to think going from where I totally ignored it and never told anybody about it, never talked about it, to now I get emails from around the world,” he said.
The most important lesson he teaches for those who are first diagnosed, usually as teenagers or young adults, is that while “if you want to be a linebacker for the Giants, yeah, realistically, you have to change your mind about that,” the rest of the world remains open to them.
“I want people to know when you get this kind of diagnosis,” he said, “it is not a dream-killer.”