 There was a time when an ice-cream maker made all the difference. It was the early 1970s, and Barbara Meyers, the mother of a young son with retinitis pigmentosa, had recently joined what was then known as the RP Foundation. She was doing all she could to help the Michigan chapter raise money for research – pushing cupcakes and brownies at bake sales, for instance. So after she won an ice-cream maker at a Foundation-sponsored raffle, she returned it so it could be auctioned off again. “She was dedicated,” her daughter, Susan, says. “She wanted so much to help the Foundation and, of course, Andy any way she could.” Andy is Susan’s brother, and he plays a starring role in her recently published memoir, Check This Box If You Are Blind: A Brother, A Sister, a True Story, in which the ice-cream-maker anecdote is one of many characterizing both the Meyers family and life as a disabled person in the 1960s and ’70s. Although what would later become the Foundation Fighting Blindness isn’t named in the book, its significance looms large, in more ways than one. For Barbara and her husband, Gerry, it was a source of salvation. “It’s amazing to look back and see what didn’t exist then – stem cell treatment, retinal implants, gene therapy,” Susan, age 51, recalls. “We didn’t even have words for those things back then. But there was hope, and there was a lot of it.” The Foundation was also the only context in which the Meyerses felt comfortable dealing with Andy’s condition, which carried more stigma than it does today. “My parents just wanted my brother to have a good life. And that meant fitting in,” Susan explains. “That meant being able to do what everybody else did and feeling just like a regular kid.” But Andy, now 48, was far from “regular.” Aside from having RP, he’d been a sickly baby who had curvature of the spine as well as lung and kidney problems. So the quest for normalcy, which included not discussing Andy’s challenges at home, did little to help prepare him for progressive vision loss. Decades of keeping quiet finally compelled Susan, a former journalist, to compose a warts-and-all account of her family’s struggles, with a leavening dose of humor, provided mostly by Andy, thrown in. Based on conversations he had with Susan over several years, Check This Box is a book about searching for ways to feel whole when faced with physical limitations, both directly and indirectly. “It gives voice to someone who’s going through the process of losing his sight,” Susan says. “But the book is just as much for caregivers, and everybody takes care of somebody.” Their story begins in a Detroit suburb in early 1963, with the birth of a “small and startled-looking” boy, “like a baby bird pushed too early out of the nest,” Susan writes. Although diagnosed with RP at age 4, Andy wasn’t told about it till he was 10, when his mother, during a drive home from the eye doctor, shared that “he had an eye disease, that his eyesight would not improve, and that he wouldn’t drive a car, ever,” Susan writes. Andy, who’d been having night vision problems for years, simply replied, “I’m already of aware of that, Mom.” It’s a line that’s total Andy – seemingly blasé about monumental challenges which, in truth, took him a long time to understand. And, indeed, through his teens, he did have problems with night and peripheral vision and couldn’t see the blackboard clearly. But he did take driver’s ed, although he never got a license. And, after graduation – and passing on an opportunity to attend a school for the blind – he had jobs, first, at a library, then at a grocery store, where, among other duties, he’d gather carts in the parking lot at night, sometimes in the rain. What Susan makes clear, however, is that there wasn’t much public acceptance, comfort with or help for someone with RP then. The situation definitely was better than centuries earlier, when, she writes, “blind babies in ancient Western cultures were routinely killed or abandoned in fields or rivers,” but, accommodations-wise, little existed. In high school, “Andy took regular classes with no special equipment or instruction. A few of these ran at a slower pace. Vocational education programs existed, and Andy enrolled in some of those.” But his parents did not advocate in ways that now seem natural. “They pitched no fits, barnstormed no offices. Disability rights were a shaky, barely emergent concept at the time, and my parents were afraid to alienate Andy’s teachers or school administrators.” Their one place of acceptance and hope was the RP Foundation, formed in 1971 by the Gunds and other affected families. The Meyerses, helping to set up a Michigan chapter, met those families and were energized by their drive and optimism. No one could yet imagine that, over the next 40 years, the Foundation would raise $425 million, so the Michigan chapter’s ability to bring in $23,000 in one year was a big deal, recalls Susan. Meanwhile, at home, “blindness … was like a downed and sparking power line, one that we devised elaborate detours around,” Susan writes in Check This Box. “So now, as Andy’s blindness becomes a fact in the world, we are unprepared. We threw away our chance for that.” Those words were originally written several years ago, when Susan began writing the book and had yet to finish a series of interviews with Andy, who still lives with his father in Michigan. (Barbara Meyers passed away in 2009.) Many years earlier, Susan had left Michigan to embark on a life of her own: first, getting a visual arts degree in college, then settling in Massachusetts, where she married a clinical psychologist, had a son (who’s now 17) and worked as a newspaper editor and writing teacher. What she struggled with all those years was the possibility that Andy might never come to terms with his vision loss. But as they worked on the book, Susan and Andy talked openly and often about RP. They named it and gave it a space in their lives. “I accept that I'm losing my vision,” Andy says, today. “However, it's taken me a lot of years to get to this point. It's not easy, and it's definitely not fun. But it's good to realize that you have limitations, learn to live with them, and try to better yourself all the while. Things can't always be done, but you can definitely try. I never give up. I believe in miracles; I believe in better things to come. That's what's kept me going in life.” As gradual as acceptance has been for Andy, whose sight is extremely limited, Susan says she’s come to admire his tenacity. “No matter how hard he was pressed, he could only go his own speed. That’s something I learned from writing this book,” she explains. “My brother has the same right as anybody else to determine how he’s going to live in the world, how he’s going to label himself and whether blindness is going to be a large part or a small part of who he is. I can’t make those decisions for him.” That includes whether or not he wants to participate in a clinical trial. Whereas Andy once didn’t like the idea of a retinal implant, he’s reconsidering. And he’s open to Susan sharing with him the kinds of research the Foundation supports. “There’s something about the level at which researchers are working, the level at which they’ve been able to identify, for example, gene mutations,” Susan says. “It feels like we’ve gotten so close to finding not just one solution but multiple solutions for diagnosing, treating, preventing. This is a good time to be hoping to have your sight restored or to have your sight loss stopped. I think that in my lifetime, in my brother’s lifetime, that, if not remedies, there will be some sort of help. And that’s very hopeful.” To order Check This Box, see photos and watch a video of Andy talking about RP, visit checkthisboxifyouareblind.com. Susan Meyers can reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . |
