One of my earliest broadcasting memories is calling the World Series in 1980. It wasn't for any network, just my tape recorder, while watching it on the TV in my parents' bedroom. I was 10 years old. No one ever heard it but me.
In June 2002, at the Staples Center in Los Angeles, I called my first NBA Finals game on WOR radio in New York. I'm fairly certain a few more people heard that broadcast.
Somewhere in between, I was diagnosed with fascio scapulo humeral dystrophy or FSHD for short, a form of muscular dystrophy.
FSHD is a thief in the night, slowly robbing you of your ability to use your arms and legs and even to smile the way you want to. I was born with it, but didn't know it until my college years. That's when I started to lose some of the athleticism I had always enjoyed. My running was slowed to a fast walk, shooting a basketball felt like shooting a medicine ball, and I started falling every now and then.
I went to a doctor thinking he would tell me to take vitamins or hit the weight room. Instead he told me I had a type of muscular dystrophy, a degenerative condition for which there is no treatment and no cure. It was a punch to the stomach.
FSHD is believed to be the most common form of muscular dystrophy. It affects people of all ages in a variety of ways. Generally it is not life threatening but it drastically alters the way you live your life.
Consider the things you do without thinking, like rising from a chair, stepping up onto a curb, reaching for something over your head, or walking up a flight of stairs. These are all the things that I struggle to do. Every step in my life has to be calculated, every seat evaluated.
It makes traveling the country a challenge, hoisting myself up the stairs to the plane, one step at a time. Most of the team bus drivers around the league know to lower the steps of the bus or have a stepstool to help me board that first step. I've gotten to know every elevator in every arena and stadium I visit, avoiding stairs whenever possible. I do the pre-game show standing, knowing the national anthem is coming, trying to limit the amount of times I have to get up from my seat.
For years I hid my condition from most people. I didn’t want to be looked at differently, nor did I want it to appear like I was exploiting it in any way. I simply tried to go on with life as if nothing was wrong. I didn’t even want to see anyone else with it. Emotionally, it was my way of coping with this disease.
My plan was always to make a name for myself, then reveal my condition and try to help others. But I procrastinated. It was never the right time. I was always waiting for my career to evolve more and more. But, with my 40th birthday bearing down, my wife convinced me it was time.
My wife, Laura, only knows me with FSHD. We met when I was 30 and the disease was already progressing to the point where it made many physical activities difficult. One day last spring, Laura let me know she was getting frustrated with my passive attitude toward my condition. It was then I finally admitted to her how much my condition frustrated me, more than she or any one else could possibly imagine. It made me take stock of my life and realize that I needed to explore what was out there in the world of FSHD.
One of the things I'm passionate about is the band Pearl Jam. In May of last year, I was at Madison Square Garden to see the band with a friend of mine, Chris Hughes, a physical therapist who knows many young people with disabilities. Standing in the crowd waiting for the show to begin, I verbalized my idea about starting a foundation for FSHD. "Now that you said it, you have to do it,” Chris said to me. "It’s not a matter of if you're going to help anyone, it's how many people you're going to help."
Next, the lights darkened, the band sauntered out on stage and they eased their way into a slow building song called "Sometimes." I've always interpreted the song about how we look to a higher power to help us with the challenges we face in life, but sometimes we need to reach within ourselves to find the answers. By the end of the song, I knew what I had to do.
Now I began to share my ideas with my inner circle of friends. My radio partner, Tim Capstraw, was the first to volunteer his services. He sees, more than anyone, what I go through on the road and he helps me immensely. Tim, who is now on the board of the foundation, told me, "So many people want to help you
but don't know how. This will give them a way to do it."
Another friend, Tom Papa, gave us the start we needed by reaching out to a woman in Long Island running an
independent FSHD foundation, one of only three in the country specifically targeting this disease. Her name is Jennifer Burgess, a dedicated mother of three who has been personally affected by FSHD. Jennifer and I joined forces to form the Chris Carrino Foundation for FSHD.
I feel like I have an obligation to the FSHD community to give it a louder voice. Not enough money has been spent to find a treatment or cure. A very small percentage of the research money spent in regards to muscular dystrophy in this country goes specifically to FSHD research. We are trying to raise awareness so everyone knows that FSHD affects tens of thousands of people of all ages and we need help.
I am blessed to have a loving wife, a wonderful son and the support of friends and family. I know how fortunate I am to make a living doing something I loved to do when I was 10 years old. I've tried very hard over the years to establish myself as a solid, professional broadcaster. That's what I’d like to be known for.
Since we began this foundation, I've heard from so many people with FSHD. Although we have this disease, FSHD is not who we are. How we overcome it will ultimately define us.
-- Chris Carrino has been the radio play-by-play announcer for the Nets since 2001. He has also called NFL games on national radio and Olympic basketball for NBC. For more information about fighting FSHD, please visit the foundation's website ChrisCarrinoFoundation.org or send an email to Jennifer Burgess.
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