By Mike Veeck
In October 1998, I accepted a job as senior vice president of marketing for the Tampa Bay Devil Rays and moved my family to Florida. When my daughter, Rebecca, who was almost seven, had a wellness check before starting school, she couldn’t read the big “E” on the eye chart. Of course, being a Veeck, we thought she was hamming it up, but she started crying and said, “I really can’t read the eye chart.” We took her to a specialist right away and it was confirmed that she had retinitis pigmentosa, a genetic degenerative eye disease. It was incurable. She was going to go blind. It was just a question of how fast.
In the course of a few moments, your world changes forever. Suddenly, there’s something wrong with your perfect child. And it shakes you. She received a lifetime sentence, and you’re thinking, We’ll win on appeal. I could hardly pronounce retinitis pigmentosa, but I had this feeling that by sheer will, by hoping and by praying and by helping in the small ways that each of us are able to do, we could overcome it. Well, that’s poppycock. It quickly became apparent that this was a seven-day-a-week, twenty-four-hours-a-day thing. And that’s what wears you out — the battering, because it’s just continual.
Little things we had wondered about now made perfect sense. She had always held books right up to her eyes; we thought it was a little quirk. And she had this cute little thing: when you’d come up, she’d turn her head and look at you out of the corner of her eye; I just thought she was trying to be Veronica Lake. But here she'd been living in shadows her whole life.
The instinct that’s almost Neanderthal, that’s ingrained in all of us, is that you take care of your family, and you especially take care of your daughter. But in this case, you’re unable to do it. You’re suspended in a kind of animated disbelief. You hear the doctor’s words, but they don’t really sink into your soul.
Of course, I made all the classic overreactions, I bought her a television monitor that magnified print. I bought her a virtual-reality headpiece. Things like that. None of which she used, because we had planted the seeds long before of raising a very independent child whose attitude was, I refuse to take any prisoners, I’m not giving in to this.
Even so, for the first 90 days after her diagnosis, it was very difficult for her. Suddenly, there were monsters under her bed. She was crying in the middle of the night and wanting to crawl in bed with us. I would open my bedroom door and find her sleeping outside our door or under a picture of my dad, her “guardian angel.” And always, the lights were on. Because even though she kept up this tremendously brave front for us, she was afraid that if she went to sleep in the dark, she might wake up blind; and if the lights were off, she wouldn’t know if she had gone completely blind or if it was just dark. I was so stupid, I didn’t realize that this was a real possibility to her. And so she was exercising her demons the only way she could.
And then I realized that my dad had always used humor to deal with uncomfortable situations. Many people had felt awkward around him because he was missing a leg, so he worked to make them comfortable. I told Rebecca every story about him that I could, about how he had used his artificial leg as an ashtray; how he would paint his wooden leg bronze every spring, then try to tan the rest of his body to match it; how he would gather the neighborhood kids around him, hammer a nail through his wooden knee, and tell them to go home and ask their dads to do the same thing.
I didn’t say this to Rebecca, but I thought it would be less frightening for her if we could joke about it. And for me, it was the old “I whistle a happy tune and no one ever knows I’m afraid.” I would start singing, to the tune of Johnny Angel, “Ret-in-i-tis!” and she would sing back, “Pig-men-to-sa!” Or I’d pretend I didn’t see a door frame and bang my head on it; she’d do the same and we’d fall on the ground laughing. “What’s the matter, kid?” I’d shout. “Are you blind?”
I’m sure she’s still frightened at times, but she doesn’t show it. Just a year after she was diagnosed, she said matter-of-factly, “I’m not scared. If I go blind, I’ll deal with it.” And one time, when we were out for a walk, she looked up at the sky and said, “It’s okay, Daddy, if I go blind, because I'll always have you and Mom with me to tell me what you see." How can you respond to that? You don’t. You tuck it away and you wait till you’re alone and then you deal with it. You just look at her and marvel.
From the beginning, my wife Libby and I weren’t sure if we should talk about Rebecca’s disease publicly. But what struck a chord with Rebecca was that we should campaign vigorously. She was very eloquent; she could describe not only her sight but her feelings. So we agreed that she would be a spokesperson. She even testified in front of Congress at age eight when we were trying to get funding to fight this disease. Going public made sense to her — she didn’t need the help, but maybe there were other kids who did. Some would call that denial, others would call it spirit.
For the first seven months after she was diagnosed, I attempted to lose myself in my job, which marked my return to major league baseball after 20 years. But there was something missing. Baseball wasn’t as much fun as I remembered, and I wasn’t either. There was a sadness gnawing at my soul. And I couldn’t work hard enough to forget how afraid I was. So finally, in May, I gave up the ghost and resigned from the Devil Rays.
I had devoted my entire life to the pursuit of this silly game. One day you’re thinking, I’ve got a dream job. And a few days later, you’d trade anything, you’d do anything. When I finally returned to the big leagues, I was like, Yes, this is it! And then to have it reduced to rubble and ashes in such short order is humbling. And you struggle; you have to rebuild your vision of yourself through the eyes of this wonderful child.
That’s one of the things that all this has taught me — that what I laughingly call my career doesn’t matter a pinch compared to what Rebecca’s going through. And so she’s become very inspirational to me. And because of that, I’ve been forced to learn more about this horrible disease. I never knew what “knowledge is power” really meant before — every time you learn a little more, the fear loosens its hold on you.
I took the next year to drive Rebecca around the country, and even fly her out of the country, so she could see all the things that had great swatches of colors that I had loved as a kid. I took her out of school to go see Death Valley and the Grand Canyon and Pike’s Peak. We drove down the Pacific Coast Highway and saw the giant sequoias. We went to Bermuda and Ireland. I took her to all the places that I thought would leave lasting, as Carrie Fisher said, “postcards from the edge.” The goal was to go to all 50 states. She and I have a disagreement on the number; I think we have eighteen left to do. We had to slow down because both Rebecca and Libby reminded me that there was an attendance clause at school.
Rebecca wanted to see her grandfather’s plaque in the Hall of Fame in Cooperstown, New York, and she wanted to see the home where I grew up. So I took her to the Eastern Shore of Maryland. It was tremendously emotional. Here I was, holding hands with my daughter and walking the paths that my father and I had walked.
And then we went to Cooperstown. It was a big gathering of my family, friends, and business partners that included Larry Doby and his wife, Helyn. My dad had signed Larry to be the first black player in the American League, eleven weeks after Jackie Robinson broke the color barrier with the Brooklyn Dodgers. One of my favorite photos is Larry picking Rebecca up that day so she can feel my dad’s plaque and feel his visage on it. It was such a touching moment.
Well, I thought everything had been wrung out of me that could. But Rebecca delivered the absolute bomb when Jeff Idelson, a vice president of the Hall of Fame and a friend of ours, took us all downstairs into the catacombs where so many of the artifacts are stored. He had set out a picture of my Dad and Larry Doby — a middle-aged white guy and a young black player. Rebecca looked down, and with perfect timing, said, “Which one’s grandfather?” And that brought down the house.
Over the years, Rebecca has resisted help every step of the way. She’s 15 now and is at blind camp this week. She went to her first camp at 14, and that was her first nod to the fact that she was different. She carries her collapsible cane surreptitiously in her backpack at school, but tries not to use it. She has learned Braille because we forced her to. But she asks for no special treatment. She still has a sliver of sight left in one eye; she’ll tell you that she can read everything but small print. She tells us, “I’ll be fine. I’m a Veeck!”
I am blown away by her courage. It’s awe-inspiring. You find yourself thinking, Could I do that? And the answer is always no. I look at it and think that it skips a generation. She just has this indefatigable spirit, this tremendous bravery, and she absolutely refuses to be brought low by it. Just recently, she told us that she had had a dream years ago, before the doctor told her that she was going to go blind, in which a little girl who looked like her but wasn’t her, came up to her, touched her eyes and said, “I’m sorry, but you have a path to take.”
In the long run, there could be a genetic-based cure for retinitis pigmentosa; in the short-term, breakthroughs have been made with microchips and miniature cameras. A dog named Lancelot had his vision restored with these implants. I live every day with this great hope that, while today may not be the day a cure is discovered, next year might be.
Yes, there are any number of times in a day when you’re drawn to tears, but she soldiers on so much that it would be betraying her to weep. I’m certainly not Pollyanna, but I don’t feel that we’re any more put upon than any other family in the world. We all have Rebeccas, every single one of us. I keep on reminding myself that there are autistic children out there and children who are dying, and I think, Well, I don’t have it so bad. There are degrees of suffering, and it makes you acutely aware that Rebecca’s condition is life-altering but it isn’t life-threatening.
And really, we’re all one family, the family of man. We need one another, we depend on one another. I depend on the scientists to come up with a cure, and they depend on Rebecca to raise funds to raise awareness, and in turn people donate more money. It’s very humbling, not only from the fact that you’re helpless, but that you have to rely on other people, and, for the first time in my life, I take great comfort in that.
I’ve come to realize that there is nothing so unifying as watching a child struggle. It prioritizes your life. You become a different person. I’m not proud of the changes I had to go through, because I really did believe that being senior vice president of marketing for the Tampa Bay Devil Rays was very important. But then you realize that, 13 seconds after you leave that job, nobody cares. And while I suffer fools easily because I am one, I no longer am able to see the loss of 20 season tickets as a failure of tragic proportions. It’s so embarrassing to have been that egocentric.
Any parent who has to go through something like this is changed forever. I don’t know what will happen when they discover a cure. Maybe you magically change back. I rather think not. I think you then look for something else to lose yourself in with another child who belongs to a friend or neighbor, because it’s so ingrained in you. All I know is that if Rebecca hadn’t had this disease, I would now at 56 be the same person I was at 48. I would be thinking, It’s all about me. I don’t think that way anymore.
Mike Veeck is a nationally renowned speaker, entrepreneur, college professor, philanthropist, marketing, promotions and customer-care expert, and owner of multiple minor league baseball clubs. Mike and the Fun Is Good philosophy has been featured on the NBC Nightly News, 60 Minutes, The Late Show with David Letterman, and many other national media outlets.
He founded Fun Is Good, an employee engagement consulting firm, because he’s passionate about helping organizations around the country develop and sustain a positive, fun, and creative culture for their employees and customers. He and his Fun Is Good partners of nationally recognized speakers and industry experts deliver inspiring, fun, and actionable keynote speeches, seminars, and training sessions around the country.
In his books, Fun Is Good: How to Create Joy and Passion in your Workplace and Career, and Another Boring, Derivative, Piece of Crap Business Book. Mike challenges his readers and audiences with questions like, “When did it become so terrible to fail? We need to encourage people to take risks so they come up with ideas that change things.” Mike and his baseball teams have delighted fans for years with this strategy. Who else would train a pig to deliver baseballs to the umpire, hire mimes to perform instant replays, or lock fans out of the stadium to set an all-time attendance record for fewest people at a game? He’s been recognized and praised by reputable business critics for exceptional employee engagement by bringing, joy, innovation, and inclusion to the workplace.
The Veeck family started in baseball nearly a century ago when Mike’s grandfather was president of the Chicago Cubs. Veeck's father, Bill, was a Hall of Fame owner with the St. Louis Browns, Cleveland Indians, Chicago White Sox, and the then-minor league Milwaukee Brewers. Famous for many occurrences at the ballpark, Bill Veeck will always be remembered for signing Larry Doby, the first black man to play in the American League and for sending 3-foot, 6-inch Eddie Gaedel to the plate for the Browns in a 1951 game against Detroit. Bill and his wife were the last owners to purchase a baseball franchise without an independent fortune, and is responsible for many innovations and contributions to baseball including planting the infamous ivy wall at Wrigley Field in Chicago.
With all the fun, creativity and innovation in Mike’s history, it should be no surprise that SNL alum and film guy Bill Murray (a co-owner and partner in several of Mike’s teams) serves as Team Psychologist / Director of Fun. Murray is sometimes seen taking tickets, selling programs, coaching third base, and giving noogies. Fans love the positive vibe, family feel, and great customer service they get at Mike’s ballparks!
Mike and his wife, Libby, reside in Mt. Pleasant, South Carolina. He is the father of two children, William “Night Train” and Rebecca.
Click here to visit Mike’s “Fun Is Good” website.
Click here to watch the 7-minute “Fun Is Good” video
This story appears in Phil Bolsta’s book, Sixty Seconds: One Moment Changes Everything. To order your copy, click here.