Henry's world became dark in August 1995. She was 46. There would be no more crimson-hued sunrises, no more watching sparrows build their nests in spring, no more watching her son's soccer team play its heart out. And her sight wasn't ever coming back, not unless they invent one of those visors that Lt. Cmdr. Geordi La Forge wears on Star Trek: The Next Generation. She deals with it pretty darn well. "What I've missed most of all is seeing my kids, especially the little ones," she remarks. "The last time I saw them, they were just getting their baby teeth, and now they're 8 and 9. Not seeing them grow up is, well, tough."
The thief of her vision was a nonmalignant brain tumor, a meningioma, which had been causing gradual visual-field loss for several years. She'd already had two operations, but this time the growth was expanding and pressing on her optic nerve. The operation removed the tumor as well as her sight. "I came home totally blind," she recalls. "I couldn't make my way from the living room to the kitchen. I was depressed and frustrated and terrified how I was going to cope."
The Shrewsbury housewife had seven children -- four at home, two of them preschoolers. Her husband, Ray, worked days. If anybody needed help pronto, it was Nancy Henry. Happily, her family picked up the slack. Her sisters drove the kids to school and appointments. Someone called the St. Louis Society for the Blind and Visually Impaired, located on Manchester at Brentwood. That was a good move. Karen Skender, the society's volunteer coordinator, says, "Only about 2 percent of people who need rehabilitation services access them."
Within two days the society sent a caseworker for a home interview. It wasn't long before Sheri Keller, a life-skills specialist with the society, came knocking. Keller showed Henry how to function in the home, how to do all the little things she had once done without much thought -- cooking, cleaning, basic homemaking. Keller marked the stove and microwave so Henry could start making meals, gave her a battery-operated thingamajig that beeps when the coffee being poured nears the rim of the cup. They became friends.
But what about the world beyond the oasis of her home? Would she ever walk to the store again, take her kids to the playground?
"I had these irrational fears of leaving the house, that something was going to happen," she says. "I remember going to restaurants and wanting to get up and leave, get back home, worried that something would happen to the kids. But that didn't last very long. Once I started getting any kind of skills back, that fear let up."
Sonya Flick, an orientation and mobility trainer with the society, also came to the rescue. Flick taught Henry the art of ambulation, not only the little tricks of moving about the house but orienteering her way outdoors. Finally the day came when Flick gave Henry a white cane. She was a quick learner. Henry lights up at the memory: "The first time I walked around the block unassisted, it was the biggest high! I called everybody I knew and told them how I could go out on my own and find my way back."
But the scariest thing is traffic. Try crossing a busy intersection such as Laclede Station Road and Big Bend blindfolded, as it were; see how it feels. The average joe would probably go into the fetal position at the first sound of an approaching car. That's where Henry has to cross if she wants to get to Old Orchard with all its shops and restaurants. That's where she almost got creamed. "I still have anxiety crossing streets," she says. "I know where to line up, I know when to step out, but you're still at the mercy of drivers not paying attention."
Learning to bake a cake, finding your way to the corner and back, taking a bus to the mall -- stepping-stones to independence for the blind person, no doubt, but another huge challenge is tapping into the galaxy of information out there. Not just pertinent data such as encyclopedia entries but also the loopy, vapid and miscellaneous claptrap found in books, tabloids, radio, TV, Internet, even junk mail. The stuff people gab about at parties.
Within a month of the operation, Henry began learning Braille, the raised-point reading system devised more than 150 years ago by a French prodigy, Louis Braille, himself blind from age 3. Sheri Keller became Henry's teacher, giving hourlong lessons during the weekly visits. Braille, however, can be as difficult as Chinese algebra, especially if one does not possess sensitive fingertips. After a year of lessons, Henry describes her Braille ability as merely competent. She uses Braille, she says, for reading labels and perhaps to find the right restroom in public buildings, but otherwise it sort of gathers moss. "If you don't use it all the time," she says, "you're not going to have any speed; it won't stay with you."
Fortunately, there are zillions of talking books these days, something the blind and dim-visioned didn't have much of until 15 or 20 years ago. Nancy had been an avid reader, a fan of mystery and true crime. No dearth of those in the audio-book section at the bookstore. But what if those books on tape could be delivered right to your door? Having met the eligibility requirements, Henry orders audio books from the Wolfner Library for the Blind and Physically Handicapped in Jefferson City. The Library of Congress facility has a whopping 336,148 copies of audio books on hand -- this in addition to Braille books, books on records and audio versions of magazines. Henry likes the service because it's free and easy. "The mailman drops them off, and when you're done you reverse the label and send it back." The library service helps her keep up with some of her favorite authors, such Ann Rule. Too, she feels more in touch with the world, getting the lowdown from Newsweek, People and Consumer Reports. One of the bennies of mags on tape: no ads.
Then there is Radio Information Service (RIS), a boon to the visually impaired. Mornings, 8-11, they read the Post-Dispatch and the Belleville News Democrat. USA Today comes later. A one-hour reading of The Riverfront Times comes way later, on Sundays. The blind and disabled don't worry about setting their dial to this unique broadcast; the radios they receive from RIS, free on approval of an application, have only one knob: on/off. Nor do they expect professionally trained voices on the closed-circuit programming, which emanates from the campus of Our Lady of the Snows in Belleville, Ill., though it must be said that some voices are quite felicitous. According to program director John Weidlich, RIS has some "150-200 volunteer readers, for the most part amateurs -- high-school students, retired people, housewives."
Turn on the RIS radio on Nancy's kitchen table and a male voice, obviously reading, expounds on the riveting topic of car dealers on the East Side. Some sort of dispute with labor. Who cares? "You have to listen through lots you don't want to hear to get to what's interesting," says Nancy. "And sometimes it's taxing to listen to; a few could enunciate better. But don't misunderstand -- the radio service is actually very helpful; two, three times a day they list TV shows and times. They also tell about sales at the various supermarkets. Oh, and there's the obituaries."
Nancy also listens to National Public Radio. As far as television, she likes 20/20, Dateline and the biographies on A&E. "I have to stay with the documentary-type shows," she explains, "where the format is more verbal than visual. Biography, I can't see the pictures, but I have someone who's telling the whole story. I'd love to watch ER, but there's too much noise in the background of the show for me to follow."
As far as pragmatic amenities, there are more and more gadgets that talk: Watches, calculators, thermometers, heart monitors, caller ID and many more devices provide data in robot voices with varying degrees of annoyance. The Lighthouse International catalog, incidentally, has gobs of neat stuff for the sightless and low-visioned. Both the Society for the Blind and the St. Louis city and county library systems have the Kurzweil Reader, a relatively new device that scans the pages of a book and reads them aloud in a computer voice -- though, with a $3,000 price tag, you won't see too many of these in the home. A more likely item is the JAWS program (about $600), a voice deck that can be programmed into your PC. As you type, it vocalizes what you've entered. JAWS reads e-mail and generally facilitates computer use, but the big thing is that it gives the blind a way to log onto the Internet.
But after all is said and done, the sound of the human voice is sweetest. No Braille goosebumps, no talking microwave, no well-meaning retiree parroting the latest sales at Dillard's will ever compare with Henry's daughter's excited squeal as she runs from her room to show Mommy some craft she's created with Popsicle sticks and yarn, or the soothing voice of her husband, Sunday mornings, as he patiently works through the paper, reading the stories she wants to hear.
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