By Kitry Krause
Last September Bill Graham got a cochlear implant. A receiver about the size of three stacked quarters was set into his skull behind his ear, and a thin wire attached to the receiver was threaded through the bone and into his inner ear. A month later the incisions have healed, and he’s scheduled to be hooked up to a small computer that should let him hear at least some sounds he hasn’t heard in 20 years.
Yet the afternoon before the hookup he’s in a somber mood, showing little of his usual wisecracking cheerfulness. “I don’t have any doubts about the functional stuff,” he says. “I’m pretty confident I’m going to use the implant well. It’s a challenge, and I like that aspect of it.” But all month long Graham, who’s 43 and has been deaf since he was in his early 20s, has been worried about the implications of his decision to get the implant. “It’s hard to get comfortable with being deaf–or it was really hard for me. And having struggled for a long time, feeling detached from both the hearing world and the deaf world and everybody in general, having finally found an identity as a late-deafened person–to leave that identity, possibly, is a little bit scary.”
Eight years ago he cofounded the first national organization for people who become deaf after adolescence, the Association for Late-Deafened Adults. “The whole idea of ALDA was that it was a place where it was OK to be deaf. My reputation was pretty much built on–not celebrate deafness, but at least deal with it as well as you can and not be afraid of it. For the last eight years I put all my creative energy into hearing-impaired issues and hearing-impaired arguments. Where do I go tomorrow? What will happen to my deaf friends? Will they feel like I’m not part of the gang anymore?”
He and some other ALDA members had once frowned on getting cochlear implants. “In a way implants represented a type of denial or at least an obstacle to the idea of accepting deafness.” He pauses, then says quietly, “But although I face deafness as well as I can, it still makes me feel lousy most of the time. I don’t like to be with people in an elevator. I don’t like to pass them on the street–simply because I’m afraid they’re going to talk to me and I’m going to be embarrassed again. And I can’t shake that feeling. I’m tired of being inhibited by my deafness. I’m tired of being afraid of people.”
Graham grew up in the south-side neighborhood of Brighton Park, the fourth and last son in his Irish-Polish Catholic family. His father was a dentist, his mother a bookkeeper at a hospital. Neither was deaf. He doesn’t know why the nerve cells inside the tiny cochlea in his inner ear started dying off, though he guesses it was in some way hereditary–no one knows in half of all cases the cause of deafness. Graham’s oldest brother, Pat, lost some of his hearing as a child, and when Graham was six or seven his mother, who was always very protective of her youngest son, took him to an ear doctor. He’d already lost some of his hearing at the higher frequencies–most people lose the high sounds first and then progressively lower ones. He’s not sure he ever heard the highest audible sounds.
The doctor recommended that Graham take speech-therapy classes to help him learn sounds he might be missing, and he started them the summer he was seven. “I hated it. I resented it. Because all my friends were playing, and I had to go to stupid speech therapy.” He already knew that deafness carried a stigma, though he’d met only one deaf person, the mother of one of his uncles. “She was very old when I was very young, and I think I saw her about twice before she died,” he wrote years later in the ALDA newsletter. “She hid or was hidden away whenever we visited my uncle. I thought she was a hired cook, actually, the way she stayed in the kitchen or wherever it was we weren’t. Everyone else seemed to ignore her, so it was easy for me to do the same.”
When Graham was 13 his doctor decided he should try a hearing aid. He remembers crying in the elevator on the way up to the hearing-aid dealer’s office. His mother ordered a device that went in the temple of a pair of glasses, which he wouldn’t wear except to watch television at home in the dark. “Nobody’s ever seen me with that hearing aid,” he says, laughing. “Only the guy who fit me.”
He got through high school, De La Salle Institute, certain that most people believed he could hear perfectly well. “In class I didn’t sit any special place. Alphabetical order. Got in trouble like everybody else.” He helped write and edit the school newspaper and won a national award for his sportswriting, but he and the other writers and editors were kicked off the staff for doing a fiction issue with an antiadministration slant.
Because he’d skipped a grade in grammar school, Graham graduated from high school when he was 16. In the fall of 1969, with his father covering part of the tuition and a scholarship the rest, he started in the architecture program at the Illinois Institute of Technology. It wasn’t what he’d expected. “It was all drafting the first year or two. It was boring, and I was in with all these sons of famous architects. I was just a kid from the south side.” By this time his hearing was disappearing rapidly, though at first he wasn’t aware that that was why he was missing so much in class. “I didn’t realize at the time that I wasn’t understanding the teacher–I just didn’t know what was going on.”
At the end of his freshman year he announced that he wanted out of the program, which angered his father. “I had all this expensive drafting equipment, and I didn’t know what I wanted to do. I just wanted to get out.” He applied to journalism schools, thinking he’d go back to something he’d been good at in high school, but he wasn’t accepted. So he stayed on at IIT in English literature, one of two people in the program.
In class he tried to pass for hearing. When a teacher would ask him a question, he’d shrug and say he didn’t know the answer rather than admit he couldn’t hear. And he didn’t volunteer ideas, because he couldn’t know whether someone else had already said what he wanted to. By the end of his second year he’d stopped going to class unless a teacher insisted he attend, but he wrote such good papers that he got away with it.
He didn’t date much, largely because he couldn’t hear women’s high voices. But he didn’t know what to say to them anyway. “You learn socialization skills in adolescence, and you’re not going to learn them if you become deaf. I spent years not knowing what the hell to say to somebody in small talk.” When he began to admit to himself how bad his hearing was, he didn’t know what to do about it. He’d bought a new behind-the-ear hearing aid, which he concealed by growing his hair long. Hearing aids only amplify sound, and most of the nerve cells in his cochlea that picked up speech were already dead. But the vibrations of the aid did help him monitor the sound of his own voice, letting him pronounce words right and gauge how loud he was talking.
He also didn’t know how to ask for help. Always being the youngest in his class as a child had made him tentative, unsure of himself, he says, and that tendency had been reinforced by his mother’s protectiveness. “All my mother’s love made me almost helpless as a deaf person for a long time. My mother did everything for us, so when I faced deafness I didn’t have the resources that a lot of people have.” And besides, in blue-collar Brighton Park guys didn’t ask for help.
He was still living at home, and though his mother’s general concern for him had become stifling, neither she nor his father wanted to talk about his hearing loss or the anguish it caused him. “My mother did not want me to be deaf. She didn’t want to face it, so that made it even harder for me to deal with it. She always said I was OK, that I could hear when I wanted to hear. I got that from a lot of people in my family. I remember mostly my brother Mike saying stuff like that. He’d come home from college or the army, and every time he’d say, “Oh, you’re hearing better now.’ And my hearing was getting worse by the minute.”
Instead of going to class at IIT Graham hung out in the gym or on the baseball diamond. He’d always loved sports, especially baseball. In high school he’d managed Little League teams for three years and played varsity as a junior and senior. At IIT he played varsity all four years and was voted most valuable player his senior year; in the summer he played semipro and Stan Musial leagues. But every year he had to work harder to compensate for his hearing loss. When he played shortstop and had to be the cutoff he’d stand sideways in the outfield, trying to watch both the ball and the other infielders, who’d point to where he was to throw the ball. “That was stressful. And I would run out for pop-ups, and anything I called for they would let me get. But that’s also stressful. You don’t believe they’re gonna do it. You wonder, where’s that other guy comin’ at me full speed?”
He also missed the cheering and the bench chatter and was sometimes humiliated by mistakes he made because he couldn’t hear. Most of his teammates knew he didn’t hear well, but he hated admitting that that caused him problems. In one important game he struck out but didn’t see that the catcher had missed the ball. He trudged head down back to the dugout while his teammates yelled at him to run to first. He didn’t hear them, and the catcher tagged him out. His teammates were furious. “I made up a story about pulling a muscle in my calf, and I faked a limp the rest of the game,” he later wrote in ALDA News. “I felt uncomfortable on the team the rest of the summer.” The next summer he didn’t even sign up. “I used to feel really in control in baseball. I loved pitching. Get me out there on the mound with the ball–nothing starts until I throw it. But after I lost my hearing I couldn’t hear what people were shouting to me, and I started to get nervous about it. I wasn’t as confident anymore. I used to love to come in as a relief pitcher with the bases loaded, nobody out. But you have to be really together to pitch in a situation like that. By the time I was 23 or 24, I didn’t have that anymore.”
Yet he knows he can’t just blame his hearing loss. “There’s a deaf guy in the major leagues, you know? For Montreal. Curtis Pride. It can be done. I could have gotten through baseball if I was good enough. I was a good player–most valuable player on a shitty team–but I didn’t have the talent, the speed to go beyond what I did.”
Every summer since high school Graham had worked for the Chicago Park District testing pool and beach water, a job he expanded to include baseball games and long lunches–he says it’s the best job he’s ever had. But in the summer of ’73, after he’d graduated from IIT, he got hired as a crane operator at an electroplating plant on the west side. “I thought I was going to get a blue-collar job and spend the rest of my life doing it. About two weeks of that convinced me I wasn’t suited for blue-collar work.” He laughs and throws his hands up. “I didn’t know what they were saying. I was just punching the clock and doing things wrong.”
He applied to graduate schools and was accepted into the creative-writing program at Colorado State University. He started classes still bluffing, still pretending he heard much better than he did. “I didn’t want to be different. I wanted to fit in,” he later wrote in ALDA News. “I’d learned to read lips fairly well, and I became a master of anticipation. I’d watch the facial expression and body language of whoever was talking, consider the situation, and then extrapolate like crazy trying to figure out what was probably said. There seemed no other way, no conceivable alternative. I grew up as a hearing person, and the hearing world was my only reality. How could I catch any dreams if I let go of that reality?”
It was exhausting–even the best lip-readers pick up only about 40 percent of what they see–and he was understanding little of what was said. “I just sat there shaking. I didn’t talk to anyone, and I didn’t know what was going on. Then one night somebody said something to me, and everybody laughed. I said something like, “I don’t know what you said, but I’d like to punch you out.’ I said it in a funny way, you know, and everybody laughed. So I started to use humor as a way of getting out of my defensiveness about my deafness. And when I saw that people really warmed up and responded to me when I made fun of my deafness, it became a common thing for me to break up the class.”
By the spring of 1975 Graham had finished his coursework and was working on a novel as his thesis. But he failed his oral exams, mostly because he couldn’t understand what one of the professors, an anthropologist, was asking him. He never got the degree. He hung around for another year, then moved back to Chicago. Back in the old neighborhood, back among old friends, he began bluffing again.
Over the next few years he would lose most of the little hearing he had left, until he could hear only the lowest frequencies–trucks rumbling by but not words. And during those years he would continue trying to deny what was happening to him. How does one deny a fact? “Don’t tell anybody. Just act like everything’s fine. Don’t put yourself in situations where your bluffing will be exposed. And you just don’t dwell on that stuff. In a way you’re dwelling on it all the time, because though you’re not really facing it in your mind, everything you do is focused on not letting it come front and center.” He pauses. “I was pretty miserable and depressed, and a loner after a while. That’s not the way I felt I was genetically. I felt I was an outgoing person. It was ugly. I didn’t think so at the time, but when I look back on it, it was kind of ugly and stupid, the way I was living.”
He began to avoid strangers, especially children. First it was conscious, then it became habit. He’d walk down the street without looking at people, cross to the other side if someone approached, stay home. He came to hate being in elevators, because he couldn’t know if people were talking to him unless he looked at them. If he watched someone, the person would think he was weird; if he didn’t watch and the person said something to him, he wouldn’t respond and the person would think he was a snob.
Occasionally salesclerks or waiters were rude or assumed he was retarded. “I wouldn’t say that hearing people are particularly bad to late-deafened people, but bad enough that the deaf person feels insecure and feels ashamed that they can’t cope with something they used to be able to cope with easily. It doesn’t take much to make me feel really bad. Late-deafened people are overly sensitive.”
Even with people he knew, Graham strained so hard just to catch a fraction of the words they said that he often missed their import–and then he couldn’t marshal a thoughtful response. He began panicking anytime he had to deal with someone he knew was smart. “It happened first with my brother Pat. I lost him somewhere along the way. We used to talk about books and movies and things like that. It was an intellectual relationship. I stopped trying to follow him because I couldn’t. I couldn’t participate anymore
Cut off from stimulating discussions, Graham felt that even his ability to think intelligently was slipping. He read a lot, but says that how well one grasps a book is often shaped by discussions with someone else. “Sometimes the minor feedback you get from another person will lead you to a thought you wouldn’t have had on your own–that’s what late-deafened people miss so much.” He adds that how one thinks about anything is influenced by all the incidental information one picks up without realizing it from radio, television, talk overheard on the el. He found himself growing less curious, less willing to ask questions.
Slowly his conversations with most people degenerated into trivial exchanges–about the weather, his general health–that he found humiliating. “These were dark, difficult years for me,” he later wrote in ALDA News, “full of tension, bitterness, and self-pity.”
When Graham got back from Colorado in 1976 he found a job writing scripts for educational videos. A year later he was hired as an editor at World Book. “That was a big step up for me. Good atmosphere. Good training. Good people. I didn’t have to hear to do the job. It’s a controlled environment. I could do the work, so it was a confidence builder. But it did isolate me more in a lot of ways.” He worked alone much of the time and was lost at meetings. “I would go to them with sweaty palms, sit in an inconspicuous place, and hope that nothing would be said about me or to me.” Most people knew he couldn’t hear well, but he was still pretending that that didn’t affect much.
His first year at World Book he could still hear some sounds on the phone, though he couldn’t understand words. He and his mother worked out a code so that she could still call him. She’d use one syllable for no, two for yes, three for maybe. She would spell words by reciting the alphabet until she came to the first letter of a word, then run through it again for the second letter. He later wrote in ALDA News, “She used the word ‘worry’ a lot–she worried about me, about my brothers, about my father, about dinner–and ‘worry’ takes forever using our code.”
Unable to use the phone with anyone else and often uncomfortable face-to-face, he drifted away from his south-side friends, who were getting married and starting families. “I was still the same as I had been. Alone, single. There were a lot of years there where I was basically by myself with my dog in my apartment.” He couldn’t play team sports competitively anymore, so he took up running, finishing his first marathon in 1978. He was still a professional-sports addict, and when a friend left World Book in 1979 to start Metro’s Chicago Sports magazine he agreed to help out by writing and editing stories after work. In 1980 the magazine fell apart, and though Graham wanted to keep writing about sports, he couldn’t find a job.
He’d made friends at World Book and was bluffing less. But by this time he was almost completely deaf. At the big Friday happy hours he organized he could barely participate in the talk. “What I was doing wasn’t working. I finally figured that out–it took me long enough. I needed to try something else.” He’d taken a sign language class after he started at World Book. Now he enrolled for a full series of courses at the Chicago Hearing Society. “I thought I was a failure to have come to that–communicating with my hands,” he later said in a speech. “But it was the first major thing I did for myself as a deaf person.”
Yet in the summer of 1980 Graham was trying to cope with something worse than his deafness. His father, who’d been a heavy smoker, had been sick for several years with emphysema, heart trouble, and skin cancer, and for months he’d been bedridden and in great pain. Graham loved his father but had always been cowed by him. “He was a great guy, but I felt I could never meet his expectations. That’s where I got my ideas of what it means to be a guy and be a success. His expectations made me work hard at times, and they made me a perfectionist. But I don’t think my father would accept being an editor as a success, you know? He wanted his kids to be doctors like him.” Graham went to the hospital every other day, though it was painful to watch his father deteriorate. Toward the end his father could no longer speak.
After Graham finished a couple of sign language classes, his teacher took him to the Chicago Club for the Deaf to practice. Everyone he met there was culturally deaf, prelingually deaf people who’d chosen the culture of deafness over mainstreaming. “I couldn’t understand anybody. They all signed real fast, and they all looked at me like I was a hearing person. I signed badly, and it was a kind of depressing place–stark, lots of smoke, people drinking. Nobody wanted to talk about politics or English literature or even personal feelings. I felt really lost after that experience. Until that time I had this idea that learning sign language would make it easier for me to meet people that I could really relate to. I didn’t know anything about the deaf community, so I had a lot of hopes. I thought I had lost most of my friends, any meaningful dialogue with friends, because of my hearing loss, and inside I felt that this was going to replace something.”
He retreated to the hearing world and a few months later began teaching sign language to interested World Book coworkers at lunchtime two days a week. More women than men came; he’s always found women more willing to accommodate other people’s deafness. Over the years he would teach more than 150 people, and a couple of them eventually learned sign well enough that they could interpret for him at company meetings.
Yet he wouldn’t teach sign to the members of his own family. “I felt this was something that they should do for me. Why do I have to pull the whole load of my disability? Why couldn’t they meet me halfway?” None of his family ever learned more than the basics, and sometimes that angered him. Yet he knows it was partly his fault, because he never asked them to learn. “I felt that my deafness had destroyed the family status quo and that the Grahams could not be themselves with me around,” he later wrote in ALDA News. “I hated being a burden. I wanted our dinner table conversations to go on as they always had. Learning sign language would change the way my family acted, and solely for my benefit. Deafness was my problem, not theirs. In my most guilt-ridden moments I didn’t want members of my family to inconvenience themselves for me in any way whatsoever.”
His mother never even tried to learn the 26 signs for the alphabet, saying she was too old, though he believes it was because she still couldn’t accept his deafness. “To her, my deafness was a terrible thing that stood between me and a happy life,” he wrote. “Inwardly she prayed for my hearing to return.” His brother Pat took classes the longest. “He got really frustrated, but he tried very hard. He never really got beyond the fourth-grade level, and it was uncomfortable for me to see him struggle with baby words.” Besides, none of the brothers saw each other much anymore–they had their own homes, their own careers, their own friends. He didn’t see the point of pressing them.
In 1982 Graham was promoted to life sciences editor, supervising several people who wrote and edited articles. He was proud to have the responsibility and for the next few years threw himself into the job.
Slowly he also discovered a larger deaf world where he felt welcome. An artist on the World Book staff who was hard-of-hearing (and with whom Graham would later write a humorous book about TTYs, tele- typewriters) took him to an organizing meeting for the Chicagoland Advocates for Signed Theatre, most of whose members were hearing. “There were nice people–a lot of sign language interpreters and deaf people who would sign slowly for me.” Eventually he became head of the PR committee, then vice president of the group. In 1984 he and a new deaf friend, Steve Wilhelm, raised more than $6,000 for CAST doing a team triathlon across Minnesota–435 miles on bikes, 50 on foot, and 50 in a canoe.
Graham also made friends in the Chicago Telecommunications Club for the Deaf, whose members were almost all prelingually deaf. In 1987 he was entertainment chairman for the club’s annual banquet, held on Saint Patrick’s Day. For the occasion he wrote deaf-oriented lyrics to several old Irish songs and practiced them with five deaf friends, with Wilhelm pounding the piano. They sang for several hundred people, few of whom could hear a note. “They’d never heard any of these Irish songs in their life. There was one song they sang in all the Irish bars I went to.” He starts singing in a clear tenor, on key, “No, never no morrre,” then bursts out laughing. “It gets really loud in bars, because people hit the table. Lost on deaf people!”
A few months before, he’d joined a support group of late-deafened adults started by a woman named Kathie Hering. Graham and Hering made a list of all the local late-deafened people they knew of, and in March 1987 they threw a party at his apartment. Most of the guests were strangers, yet he was more comfortable than he’d been in years. A week later he sent a letter to everyone who’d come and the few people who hadn’t. Several wrote back, he sent another letter, and the Association for Late-Deafened Adults was started. Within a year he was sending a newsletter all over the country.
He quickly realized that there were huge numbers of late-deafened adults in this country who could no longer communicate well with the hearing world but who couldn’t communicate with the culturally deaf world either. Many late-deafened adults never learn sign language well, no matter how hard they try, and what they do learn is often used simply as cues for lipreading. It’s difficult to learn any new language as an adult, and sign is a visual language–a complex way of communicating so radically different from what hearing people know that few ever learn it as well as the prelingually deaf.
Like many late-deafened adults, Graham had looked for publications for the deaf and hard-of-hearing that would help him learn to cope with his deafness, but the hard-of-hearing newsletters focused on devices such as hearing aids, and the culturally deaf newsletters didn’t ask his questions. “They didn’t talk about deafness being a disability or anything bad. I thought it was a lot of bullshit, a lot of tough stuff. But that’s the way they are–they don’t think about deafness the way I do.”
The culturally deaf people he met were happy in their world and couldn’t understand why he hated being deaf–which only made him feel worse. “You feel like there’s something wrong with you. You feel like you’re not a good deaf person. And because they set the agenda, that puts you out of the mainstream of deafness.” Later he would discover that the “mainstream” represented only a fraction of the deaf population–it’s estimated that more than three-quarters of the two million deaf people in this country become deaf after they’re 19.
“It’s hard for late-deafened people to find an identity, because they can’t coexist with hearing people anymore, but they’re not attracted to being deaf people either. So they hang on to the hearing part of themselves–and they’re not happy that way, because they’re just ghosts of what they used to be.”
ALDA began as a social organization, with frequent parties and occasional meetings where anyone who came could exchange stories with people who also felt lost. “There was nowhere else to go to really feel comfortable about being inept with communication,” Graham says. “It’s important to know that it’s OK to be inept.”
Early on he started leading a support group of several north-side ALDA members. Some signed, some didn’t. Some could lip-read well, some couldn’t. At first they communicated by having the people who signed or lip-read the best take turns typing what was said and then passing the typed sheet and carbons around. Then Steve Wilhelm rigged up a computer that could throw words up on a television screen as they were typed, the first step toward live or real-time captioning for group discussions. Later they hired court reporters for big meetings, and their conversations raced along nearly as fast as they do among the hearing. Graham says that without real-time captioning ALDA might never have made it; other people had tried to start similar organizations but never got far because they didn’t have the technology to crack the communication problem.
Because late-deafened people get most of their information through reading, the newsletter was also critical to ALDA. Passage of the Americans With Disabilities Act in 1990 also helped keep the organization going because it erased some of the stigma of being deaf. Graham, who became ALDA’s president and later its executive director, never took people off the mailing list even if they didn’t pay dues. “It’s going to take a lot of years for a lot of people to come out of the closet. I had all kinds of people tell me, “Oh, I read that newsletter for years, and this is the first time I’ve come out.’ They need the lifeline.” Especially men, who seem to have a harder time coping with deafness than women.
Graham wrote much of the newsletter himself and solicited and edited ideas and columns from others. He threw out questions–“When shopping, how do you react when you can’t see the amount on the cash register?” “How do you react when someone tells you that you have good speech for a deaf person?” “Are you deaf in your dreams?”–and people sent in answers that were published anonymously. He described in amusing detail a New Year’s Eve party at Wilhelm’s, an ALDA bowling night, his own move to a new apartment on North Sedgwick. “I now live on the second floor of an old frame building that houses a music school on the first floor. Who else but a deafo could live in blissful peace with screeching violins and cellos down below?” He signed off as the Galloping Goofus, the Social Sluggard, the Nervous Nellie of Confessional Conversation. “I would make fun of my deafness and deaf situations. People liked to laugh about their deafness–that wasn’t on the table before, I don’t think. If you can see deafness isn’t the worst thing in the world, then it’s not so bad, you know?”
Being around other late-deafened people who understood the compulsion to bluff, who felt isolated and angry with hearing people, Graham began to feel comfortable writing about those things too. “I have all these insecurities that everyone else has, but I wasn’t afraid to talk about them. I wasn’t a real special person. I was coping poorly with deafness, and that was important to a lot of people who were also coping poorly. I was always kind of shocked that people would respond so ebulliently. I’d get letters from people, and I couldn’t believe that they’d say I’m changing their lives.” He pauses. “It seemed like the more I would admit, the more things that I was ashamed of that I would talk about, the more people loved me.”
He was happier than he’d been in years, and the euphoria would last a long time. “When ALDA came along and I met other late-deafened people, for once it seemed that things had come together, like there was a pattern to life that I had never seen before. ALDA gave me the chance to be with people again. I broke through this tremendous barrier for me–facing my deafness. And that made it possible for me to do other things–speak, go to meetings, just deal with people and be a leader. It was great to get out of that feeling that I was somehow less of a person than other people.”
At a bowling benefit in 1988 Graham met Karen Kozlowski, a hearing clinical social worker who’d directed group homes for mentally ill deaf people for nearly 12 years. Two years later, when he was 37, they married.
Marriages between the hearing and the deaf can be fragile, because communication is often poor. “The hearing spouse doesn’t know sign language–they have to write things down. The hearing person’s on the phone and gets off, and the late-deafened spouse says, what was that? You get like a ten-words-or-less summation of an hour’s call. You can’t talk about complex things because you can’t communicate the hard words and it takes so long.”
But Karen had been an interpreter and didn’t mind signing all the time–she’s always been much better at it than he is. And one afternoon he discovered that if he held her nose while she was talking, the vibrations helped him read her lips much better. She already belonged to his world. “She didn’t have a lot of interests that I couldn’t do–she wasn’t going to opera, doing hearing stuff.” Yet he felt guilty that sometimes his deafness pushed extra responsibilities onto her.
She’d long been an advocate of deaf rights and pressed him to speak up more for himself at work. “Before she met me she knew only culturally deaf people, who were very assertive and very visual and would catch everything around them in a second. And I’m a hearing person in deaf clothing. She thought I shouldn’t put up with not getting access.” He got a little more demanding at World Book, though it wasn’t until the Americans With Disabilities Act was passed, 13 years after he began the job, that he insisted on having a professional interpreter at meetings instead of one of his coworkers.
ALDA grew quickly. A year after it was founded 100 people were on the mailing list, and a year after that almost 400. By the end of 1989 there were nearly 600 in 12 national chapters. Many more women than men joined–almost three-quarters of ALDA members are now women–though many more men than women are deaf.
Graham, who was still working hard at World Book, spent all his free time on ALDA. For the first couple of years he went largely unnoticed by the deaf world, but suddenly people wanted him to sit on panels, give speeches at conventions, be a member of boards, write articles for journals. He was also given awards, among them the Chicago Department on Aging and Disability’s August Christmann award in 1989, the luncheon for which was held that fall. Graham’s mother, who’d told him earlier in the year that she was still praying he would hear again, agreed to come only at the last minute. He gave a speech about how ALDA had helped him start living without being ashamed of his deafness. “Afterwards, my mother said my speech made her cry,” he wrote a couple of months later. “She said she felt very proud of me and that she was happy that she had come. I accompanied her to the door of the building and watched her walk off in the rain to shop at Marshall Field’s. A few days later I found her dead of a heart attack in her bathtub. In the strange way that people have of making sense out of unexpected events . . . I concluded that my mother, having realized that her youngest son had found peace with himself, was now herself at peace and could let go.”
In 1990 Graham was a member of, among other things, the city’s Advisory Council on Disability. In 1991 he testified at U.S. Justice Department hearings on the Americans With Disabilities Act, made the cover of Deaf Life magazine, and became a member of the board of trustees at Gallaudet University, the highly regarded school for the deaf in Washington, D.C. “National recognition for me happened really fast. And everything came so easily. I’d do a speech, and everybody wanted me to speak. I’d write an article, and everybody wanted me to write articles. I’d show up, and everybody’d want to follow. I couldn’t figure it out. It made me nervous. I knew that there was going to be a price to pay for it, because it was happening too fast. I just didn’t feel confident in my ability to do some of the things I was being asked to do. I lost some of the meaning in what I was doing, and I became a symbol.”
But he didn’t slow down much. That fall, in a humorous article in ALDA News titled “Confessions of an ALDA Widow,” Karen wrote, “I found him asleep at the TDD one morning and I realized I was married to an ALDAholic. ALDAnonymous clippings under the bed. Profiles of deafened people stuffed in the telephone book. Deaf newspapers everywhere, constantly flashing phone lights, and more mail than I could have imagined.” Graham began to write less, but what he wrote was more serious. “I lost some of the humor part. I got a little bit more pedantic or something. I would speak more directly to the problems of deafness. I think that was my wife’s influence, because she saw serious problems in the late-deafened community.” One of the biggest issues was that very few service agencies for the deaf knew anything about late-deafened adults, so people who managed to find their way to an agency were often simply told to learn sign language and join the culturally deaf world.
Graham says the focus within ALDA had also begun to shift from socializing and support to advocacy, and he shifted with it. “I thought, yeah. Stand up for late-deafened rights.” Speeches and presentations by ALDA members to public and private agencies were making more people aware of the special needs of late-deafened adults. National boards were looking for late-deafened members, and articles in culturally deaf publications were regularly being written by late-deafened people. Yet later he came to believe the shift had been a mistake. “When you get into advocacy you get into arguments and differences of opinion, and these things get totally out of control. People get hot about it, and they don’t feel accepted. It’s real life again, and ALDA isn’t the real world, you know? It’s a place to go to heal. That’s what its members need most. That’s what I needed. They need total acceptance and understanding and respect from other people.”
For much of 1992 Graham felt trapped in the middle of arguments. “We weren’t going anywhere with the organization. All we were doing was yelling and screaming back and forth. Nasty letters on E-mail. It was getting very tiresome. I was seeing some very gentle people being hurt.” Then he and another board member got into a dispute, and people he’d thought were friends didn’t stand up for him. He resigned, though he told only a handful of people why.
“For about a year I was hard to live with. It was very difficult for me to get on with my life. I was hurt badly, and I was tired.” He pauses. “I don’t think I’ll ever do anything that has such an impact on people again. So I felt like an athlete who’s retired. What are you going to do now? What will ever give me that sense of accomplishment again?”
A couple of months before he resigned, the Illinois Department of Rehabilitation Services had given ALDA a grant to start its own service agency in Chicago for late-deafened people, especially those who didn’t know sign language. Hearing Loss Link, which offers counseling, classes, and referrals, opened in February 1993 with a staff of four, including Graham as executive director and Karen as supervisor. “It was her brainchild mostly. I was able to facilitate it and bring it into being because I was late-deafened and I had contacts. It was badly needed–much more than ALDA.” He tried to throw himself into Link the way he had with ALDA, but he was worn out from the ALDA infighting. And he was being asked to be an administrator when he already had a full-time job at World Book.
Gradually he also realized that he couldn’t make the kind of personal connections through Link that he had through ALDA–he hadn’t known how much he’d come to depend on the constant dialogue with other ALDA members. Some of them still kept in touch on E-mail, but it wasn’t the same. And he’d cut himself off from his Chicago signing friends by moving to Crystal Lake in the fall of ’92. Suddenly most of his interactions were with the hearing again, and he was often forced to depend on his wife to interpret for him. They’d also decided to try to adopt, which he knew would push him even further into the hearing world.
He wasn’t eager to go, yet by this time he’d become frustrated with signing. For years he’d thought he’d eventually be good at it, but he’d hit a plateau. “I really worked hard at sign language, and I wondered, what’s wrong with me? Is it a motivational thing? Maybe I think I’m working hard, but in my mind I really don’t want to do this. Or is it just a visual thing–I’m not really visually oriented? I never figured it out. I can understand pretty well, but that’s just one-way. I can’t respond like I would like to. Signing is a slow process of first figuring out what the words are, then figuring out what it all means, and then trying to think of something to say. But I can’t think of something to say while somebody’s still signing, because I’ve got to follow closely what those hands are doing.”
He began to think seriously about a cochlear implant. For years hearing friends and relatives had been sending him articles about the operation, which annoyed him because he thought they were pushing him to make a huge effort to communicate in their way so they wouldn’t have to make the effort to communicate in his. Within ALDA the watchword had been to accept whatever a person needed to communicate better–hearing aids, sign language, cochlear implants–but even so some members didn’t approve of implants. The mid-80s models weren’t very good, and people who had them would sometimes pretend they heard better than they did, which irritated people like Graham who had no patience left for bluffing. When he and other ALDA members raised legitimate concerns about the implants–no one knew what their life expectancy was or what they would do to the auditory nerve or brain after years of use–some implant users were indignant.
And implants seemed to undermine the ALDA message that being deaf was OK. “We thought implants were another form for some people to be in denial and not get with the program. To really face deafness you have to stop believing it’s gonna go away. Why bother to learn sign language? Why bother to learn a different way to communicate? Why ask other people to communicate differently? So we had a grudge against implantees, some of us in ALDA.” Privately they made fun of implant users. “People would rave about their implants, and part of every goddamn testimonial was “I can hear crickets.”‘ He throws his head back laughing. “I didn’t remember crickets as being so memorable. So every time some of us in ALDA got together we’d just say “crickets,’ and we’d all start laughing.” One night a police car with its lights flashing passed a group of them, and someone joked that it was the implant police prowling for another victim. After that, “implant police” would set them off too.
Yet Graham had been tested in 1989 to see if he was a candidate for the surgery. “I think I was in denial then about my fascination with the implant,” he said in a speech last fall. “I told myself that I only wanted to go through the evaluation process to see exactly how profound my deafness had become and because I wanted to have that CT scan. I never had any type of medical imaging done on my head, and I reasoned that maybe there was a simple, curable cause for my deafness that my doctors hadn’t been able to diagnose with standard otological tools.” The doctors saw nothing they could cure, but they did tell him he could have the operation. He told them he didn’t think what he’d gain would be worth the trouble.
Six years later it seemed worth it. The technology had improved remarkably: users could pick up a much higher percentage of words without lipreading, and the sound of human voices was much closer to what they remembered–early users had described people as “chipmunks.” Doctors also had more experience with the surgery, and Graham had a doctor he trusted, Richard Wiet, who’d done the first implant surgery in Illinois and who’d come to Link on his own offering to help out.
Graham still felt that in some sense getting an implant would be selling out, but he’d also begun to acknowledge that he wasn’t completely comfortable with being deaf and never would be. “I don’t know any sane late-deafened person who, if they were honest, wouldn’t say they would want to hear again if there was a magic wand and they could do it without an operation. It’s a form of denial to say that you don’t want to be hearing. It’s a healthy form–it helps you get to a point where you can live with yourself, move on with your life a little bit. But deafness is a pain in the ass for a person who’s been hearing before.”
Besides, Graham knew that something in his life had to change drastically. He didn’t feel challenged at World Book anymore, and he saw electronic encyclopedias such as Microsoft’s Encarta revolutionizing the industry; several of his coworkers, including his boss, had already gone to work for Microsoft. One day he was flying back from a meeting when he suddenly felt utterly lost. “I realized that I was flat-line. I wasn’t thinking creatively, I wasn’t thinking about the future. I felt dead. I’d been in ruts like that before when I was going deaf, going from day to day without any definition, everything the same, nothing to look forward to. It felt like, Jesus, I wasn’t pursuing Link funding like I needed to, and I didn’t want to go back to ALDA. Where the hell am I going now?”
Wiet operated on Graham at Northwestern Memorial Hospital on September 1. “Most people say the operation’s a piece of cake. It’s not that bad, but I mean it hurts.” He had tinnitus for a couple of days, and the long incision around the implanted receiver stung for weeks. But he didn’t have any of the serious complications–infection, facial paralysis.
Then came the long month of waiting for the computer hookup and wondering whether he’d made the right decision. “I was terribly irritable in the weeks before hookup,” he said in a speech last fall. “Karen had never seen me so testy and temperamental. I had unpredictable temper tantrums. At times I didn’t know what was coming over me.”
He worried that their relationship would change if he were no longer so dependent on her. He worried that if he could hear he’d have to take on more responsibility. “Deafness sometimes is a way to avoid responsibility. You need a plumber? Well, jeez, it’s easy for the hearing spouse to call. A big fight with the relatives? Let the hearing spouse deal with it. It’s almost a mandate for irresponsibility. I look at listening and hearing again as, uh-oh, I’ve got to be an adult. I’ve got to be suddenly mature and deal with everything like everybody else.”
The afternoon before the computer hookup he’s also worried that his body will fail his expectations. “I’ll feel bad if all these other people use the implant better than me. The jock part of me wants to be really good and use the phone. But thinking about using the phone scares the hell out of me. I spent a lot of time struggling to understand what people were saying on the phone when I was losing my hearing, and my memories of those years are bad. And if I’m good with it, it means, heck, I’ve got to make all my calls, right?” He bursts out laughing. “Well, if it makes me more independent it’ll be all good. But I’m used to it being an excuse and everything. Maybe I don’t have that excuse to kick around anymore after tomorrow. And that’s a little bit scary.” He pauses, then laughs again. “So here I stand on the precipice of the future. I’m kind of happy that tomorrow’s coming, because the speculation will end and we’ll just start dealing with the reality.”
The next morning, October 5, he’s standing outside a small soundproof room in his audiologist’s office. “I hate going in here,” he whispers. “Bad memories from childhood.” He sits down in front of a computer, and the audiologist, Francye Klaus-Largeman, places a small beige microphone on his scalp over the implanted receiver, where it’s held by a magnet. Mary Barker, a representative of Advanced Bionics, the maker of the implant, hands him the small computer, or speech processor, that he’ll wear on his belt; it’s thinner than a pack of cigarettes and only slightly longer.
“It doesn’t have my name on it,” Graham says.
“It has your serial number on it,” says Klaus-Largeman, laughing.
“I’m just a number?”
Klaus-Largeman plugs the cord from the microphone into the processor and then plugs the processor into her computer. When she’s finished programming the processor software, the microphone will be able to pick up and send sound to the processor, which will convert it to an electrical signal. That signal will be sent back to the receiver and down the thin wire that curls into Graham’s cochlea along the auditory nerve, stimulating some combination of the 16 electrodes there. The processor has three separate programs for the electrodes, each slightly different so that Graham can switch between them to find which works best in a given situation–which program, for instance, best blocks out background noise. As he gets used to the programs they can be adjusted, and later they can be modified as new software is developed.
Klaus-Largeman has to adjust the programs for each electrode so that the signal won’t be too weak or too strong. She calls up a program for the first electrode and asks Graham to tell her when he first hears a beep. Explaining the process to him, she exaggerates the movement of her lips as she speaks so it’s easier for him to lip-read. (Neither she nor Barker knows sign language–Graham says very few audiologists do.) A pulsing sound is clear in the room, but it’s a few seconds before he nods. “I thought it was the tinnitus, but it’s a beep.”
She lets the beep fade, then come back.
“I feel the pulsing. Now I hear it. It’s distinct. Sort of “squoosh, squoosh.”‘
“Good,” says Klaus-Largeman. Setting the volume for each electrode in each of the three programs takes an hour or so. Then the processor is unplugged from the computer, and Graham can try to listen to the women. Barker says something, and he points at Klaus-Largeman and says, “Your voice is louder than hers.”
“It always is,” she says, laughing.
“You’re laughing,” he says excitedly. “I heard that.”
They ask if their voices are loud enough. They say vowels and consonants and ask which ones he can hear without looking at their lips. He gets half. They adjust the programs. Barker recites the names of six months. Without watching, Graham gets four of them.
“I don’t hear anything with some of your words,” he says.
Barker says softly to Klaus-Largeman that he’s probably getting the sound but doesn’t know what he’s listening to. He doesn’t hear her.
“Don’t expect too much day one,” says Klaus-Largeman.
He nods. “My voice–what does it sound like? I can’t describe it. It’s muffled.”
They show him how to put the batteries in the processor and how to switch from one program to another. He says he can’t tell the difference between them.
Barker says, “But when you go out into the real world–”
“I don’t want to go out there,” he says, laughing. “Do I have to?”
They tell him he can go out in the rain if the microphone’s protected, and he can run with it if he wants (he’s still doing triathlons). They show him the special cord with a suction cup that attaches to a phone receiver and runs directly to the processor. “I would not get your expectations up about using the phone,” says Klaus-Largeman.
He shakes his head hard. “I’m scared shitless of the phone.”
He walks out of the office trying to pull his baseball cap over the microphone but quickly gives up. Downstairs he pushes through the revolving door and walks outside. He stands for a moment looking up and down North Fairbanks. Cars pass, then a bus. He shakes his head and looks puzzled. “I thought it would be noisy.” He crosses the street, then stops and looks back. “I don’t know what I’m hearing. But I don’t hear crickets.” He bursts out laughing.
As he walks across the Loop toward the Metra station he keeps asking what various sounds are–a car horn, a truck engine. And he keeps switching from one program to another. “It’s all noise.”
He says a friend of his got an implant and heard everything well right from the start. “I wanted to be like that. No matter how much they tell you not to expect, you do.” He makes a stabbing motion toward his stomach with his umbrella. “Maybe I’ll have to compete for worst implant user.”
Shifting his voice from deep to screechy, he says it sounds the same to him. “This is hard,” he says, sighing. “I’m going to have to work at this. It’s like going back to a time I didn’t like, when I had to work to lip-read.” He says trying to lip-read Barker and Klaus-Largeman wore him out, but then he smiles. “I heard them laughing the best.”
Two weeks later Graham is working hard. He’s bought a Walkman and a special cable that goes directly to his speech processor, and he’s listening to Pat Conroy’s The Prince of Tides on tape while covering up two or three words on the right margin of the book and trying to guess what they are just from hearing them. He says every day he’s guessing more of them right. “It’s boring as hell to go through the whole book like that. I must have put 10 or 12 hours into it so far, and I’m on page 125. That book is 500 pages long, and they only give you two weeks at the library.” He laughs. “I’m going to pick a smaller book next time.” At first when he lost his place he had to have Karen help him find it again, but now he can find it himself. In his shirt pocket he has a list of words he’s discovered he’s been pronouncing wrong–“conjure,” “irrevocably,” “entourage,” “opaque.”
He’s also been spending a lot of time listening to music, including a cassette by Peter, Paul & Mary. “It’s hard to make out, but some of the songs I could recognize. It was really emotional for me. I started crying and I couldn’t stop, because that was such a big part of my life when I was younger. And even though I couldn’t make out the sounds that well, I could hear them, hear their voices. I remember the melody. It’s sort of frozen in time–all those stupid songs that nobody wants to know.”
The range of what he can hear has been expanding quickly. He knew he was hearing violins at the beginning of a movie he was watching, though he wasn’t sure how he knew. He has a particularly hard time distinguishing higher frequencies, perhaps because he hasn’t heard them for longer than the lower ones. It’s also hard for him to separate what he’s actually hearing from what comes up out of his memory. “After a while what I’m hearing becomes what I believe and think things sounded like. Maybe at first it doesn’t, but then my auditory memory gets involved, and my brain starts to adapt to that sound. Once it’s identified I start anticipating it. I think the brain creates the sound–something like that.”
How well people with cochlear implants hear varies widely. A few can hear almost immediately nearly everything they once heard; most get better fairly rapidly over one or two years, then slowly improve for a few more; another few never get much sound at all. Nina Kraus, director of the Evoked Potentials Laboratory at Northwestern University, says no one’s sure whether the brain is relearning what it once knew by reopening neural pathways that have been closed, whether it’s creating new pathways as it interprets new signals created by the electrodes, or whether it’s some combination of the two. And the brain also has to learn again how to select what it wants to hear out of a din of background noise. Kraus says it’s even more amazing that the brain manages all this given that the information comes from only 16 electrodes, when it once had the input of 30,000 complex nerve cells.
Graham tried to use the phone right away, but he couldn’t catch anything. He still has to lip-read to understand, though that’s already easier. “I don’t feel I’m straining as much. Some words just pop into my head. Part of the stress of lipreading is you don’t know if you’re ever going to be able to figure it out. Now I believe I will figure it out, and with that it’s OK not to hear the first time.” Yet it’s still hard for him to ask people to repeat words. “I can’t just change overnight patterns of behavior that have developed over 20 years. I still feel a little bit scared in the elevator. If I see somebody coming toward me on the street I still get the heebie-jeebies. The fear has been transferred from just being deaf to also having something sticking outside of my head. So I’m a little self-conscious sometimes.”
The day before, a man came up to Graham while he was waiting for the train in Crystal Lake. “He said, “What’s that thing sticking out of the side of your head?”‘ He starts laughing. “But I understood him! Progress! Call me an idiot–I heard it! I didn’t care. I talked to him for five minutes and had a really normal conversation. I told him about the implant and my deafness. We ended up laughing. I was just so thrilled when I got on the train. I wrote in my journal, Wow! Wow! Wow! Because that kind of experience freaked me out like two weeks ago.”
He’s had lots of these “little events, big milestones.” A few days ago a man pulled into Graham’s driveway and asked where the McHenry County Hospital was. “I said I didn’t think there was a hospital called that. But the way I responded to him–I was perfectly calm, and I could think clearly with this stranger. That was a new feeling, and it was something that I could appreciate that a hearing person takes for granted–that your mind is at ease when you can hear something, and it allows your brain to function better. I was in control, my brain was in control.”
A few old hearing friends took him barhopping. “I hadn’t done that with nonsigning friends in like 20 years. I could understand what someone was saying in a dark car. I got along OK. My best friend in that group gave the ultimate compliment at the end of the night. He asked, “Is Advanced Bionics a public company? Do they have stock offerings?’ So that was neat to be able to go out and not just sit there like a mascot.” He’s excited about reclaiming old friends, particularly old male friends. “There’s a sort of nostalgia for times when I would stay up all night talking to people. Those were special times that I lost and maybe can recover now.”
Even though much of what people say still isn’t clear, he’s been surprised at how much hearing them at all is changing his perceptions of them and of himself. His favorite sound so far is his wife’s voice. “My wife became more real to me because I could hear her voice. I feel more connected. It’s been like falling in love all over again. Just hearing her makes her more whole, makes her more of a person to me.”
At work a woman he’d known for a long time talked to him for 20 minutes about whether she should call a man she was interested in. “I went back to my office, and I thought how this is so neat just to get this chitchat in the office. I haven’t had this for 20 years, you know? And it meant so much to me just to be a part of the flow of life.” He pauses. “I don’t care if I don’t have fame and glory if I can just get along with people on a basic level. It’s complex–I haven’t put this together too well. But I just feel like a softening of character’s possible, where I’m not so expectant of myself and not so driven to prove that I’m the smartest or something like that.”
He still wants to leave World Book, if only to be someplace where he has to interact with people more. He’s written a letter to Advanced Bionics, outlining what he thinks he could offer the company as a representative, and he’s sent a query to Microsoft and had an E-mail back asking him to come to Seattle for an interview.
This week he didn’t teach his lunchtime sign language class. Instead he asked the people who came to just talk so he could practice listening. “Sign language is something that’s been put on hold.” But he doesn’t think that means he’s cutting off the late-deafened world. “Now I feel I can be comfortable in a hearing setting perhaps again, and to me that’s a plus–there’re no negatives involved. But I’ll always relate to late-deafened people. I turn this off,” he says, pointing to his processor, “and I’m late-deafened again. If you’ve been there, it’s not easy to just turn your back on it.”
And besides, the thrill of hearing could wear off. “It’s possible that I’ll take my wife’s voice for granted and chitchat for granted. I think about, oh, I’ll get used to this and become grumpy again.” He laughs. “Like today I was sleepy and kind of crabby in the morning, and I was thinking, oh, it’s over. Two-week honeymoon. Couldn’t I have a hundred days? But I don’t know. There’ve been a lot of losses over the past couple years. I’ve been down, feeling like I didn’t really care if life went on much longer. But I’m feeling different now.”
At the beginning of November, four weeks after the hookup, he’s speaking more clearly because he can hear his own voice better, and he’s hearing more of what other people say. “When I was just starting to pick up sounds I was getting static, and then it just gradually got clearer. I don’t know why.” He’s still working hard. “I’m being a good boy. I’ve constantly got that stupid Walkman on.” This morning he finished The Prince of Tides. He’d been covering up more and more words and guessing them right. He even understood an entire paragraph without looking at the book. Still, he’d hoped for more. “I thought by the end of the book I would be able to just listen to it, but I’m a lot better than I was. And if I ever run across a guy like the guy who read it, I’ll understand everything he says.”
Every week he’s going to a speech therapist, who drills him on vowels and consonants he tends to miss or has a hard time distinguishing, like D and T. Once he gets a sound he usually knows what it is the next time he hears it. He wants his audiologist to adjust the programs in his speech processor–two of them sound tinny, and one has too much volume in the low frequencies.
Last week his financial planner stopped by the house. “I could never understand a word he said without Karen interpreting, but I talked to him without her yesterday pretty easily. He was going, “‘You’re blowing my mind! I can’t believe this!’ Have a beer or something. Please.” And for the first time since the hookup he saw his mother-in-law, who’d diligently taken up sign language after he married Karen and had become fairly good at it. Her voice was so much like his wife’s that he had little trouble understanding her. “She thought it was a miracle. She got very biblical. “The deaf can hear!’ She was real excited. By this time I’m more used to it, so I’m going, “OK, OK. Yeah, I know.’ But she kept saying, “Oh, you’re so lucky!’ “All right, OK. I’ve had some bad years too, you know?”‘ He breaks up laughing. “And I was so funny. I mean, I could hear what she was saying, and I would respond right away. Half the time I had her laughing on the floor. That’s what I missed when I was deaf–the really fast retorts, the fast talk. I can do this if I understand what people are saying to me in my way, the way I grew up–listening.”
Everyone, including his wife, seems to want to test his hearing. “She calls me Guillermo. “Guillermo!”‘ he says in a high, sweet voice. “I go up there. She smiles. “Hi.”‘ He laughs. “She didn’t want me for anything. She just wanted to see if I could hear her.” A friend came up to him and started moving his lips without making any sound. “He said, “Can you hear me?’ I said, “If you use your voice I can.’ He shook my hand. “It’s working! It’s working!”‘
Last week he went to a board of trustees meeting at Gallaudet University and for the first time could talk to some of the other board members without an interpreter. But he doesn’t think he contributed much to the meeting. “I sat there for long periods of time without saying anything and got to feeling paranoid about not saying anything. I can’t match their eloquence, not in my present state anyway. And that brings on old types of thinking I’m trying to get away from–inadequate, inadequate. I have to be careful of that side of me. My father was extremely hard on himself. It’s in the family really strong. I don’t want to get back into those ruts of thinking.” He pauses. “I sort of have like a secret wish or hope that if I can hear more I will regain that feeling of competence on an intellectual level.” He felt better by the end of the week, when he went to Virginia to be on a panel of implant users and realized that he was comprehending more than people who’d had the device longer.
He’s still reluctant to call himself hard-of-hearing instead of deaf–using the phone is the line he draws between the two. But his increasing ability to understand what people say seems to be setting him ever more firmly in the hearing world, and he’s groping toward a better understanding not just of who he is in that world but of who he can be and who he’s been. “No excuses anymore. That’s the bad part. Get out my excuse book–nothing left.” He pauses. “I can’t separate what’s caused by deafness and what’s caused by me.”
Three weeks later, two months after his hookup, words are even clearer, sounds more natural. He had the processor reprogrammed and had been hearing new things–the wind in the trees around his house, the wind chimes on his back porch. But then two programs went staticky, and it took two weeks to get them fixed.
He’s lip-reading better–still guessing a lot, but the guessing is easier. “One-on-one I feel pretty confident.” And he’s discovered that if he turns the processor off, he lip-reads better than he did before he got the implant. “That tells you something–that I’m paying attention to people when they talk. I’m watching better.” He’s also hearing a lot of what people say when he can’t see their lips, including on the phone. “I had a real good phone conversation with Karen yesterday–the whole thing. It went boom, boom, boom for about four minutes.” He called a couple more friends. One he could understand, the other he couldn’t.
Yet today he doesn’t seem to care whether that makes him hard-of-hearing instead of deaf, perhaps because he’s trying to make bigger decisions. He’d flown out to California to talk with people at Advanced Bionics, but they couldn’t offer him a job. He’d also flown to Seattle, and Microsoft had offered him a job working on Encarta. He wants to take it. “I look at this as a great opportunity for me right now. The computer stuff appeals to me, and just to be in a company on the cutting edge appeals to me. There’s a lot of creativity there. A lot of energy, which scares me–young people, competitive. It’s a big challenge. I like challenge.”
But his wife doesn’t want to move, and her family and friends, and some of his own friends, don’t want him to go either. They think the deaf world needs him far more than the hearing, and they want him to stay on at Link or wait until Advanced Bionics can offer him a job. “I don’t have my heart in deaf stuff right now,” he says quietly. “I’m supposed to be succeeding on terms like anybody else at things that people who are not deaf succeed at. I grew up with a certain expectation that certain types of work were not the kind of thing that a good south-side boy of first-rate intelligence is supposed to be doing. What I’m saying is that it’s hard for me to get a lot of inbred satisfaction out of things I’ve accomplished in deafness. It’s always nagged at me that what I do in deafness doesn’t mean anything to my friends that I’ve always had. It only means something to people I’ve met since then.”
He stops and sighs. “I’m proud of the deaf things I’ve done, and eight times out of ten I’m not that embarrassed to tell someone I’m deaf–I never thought I could do that. I’m not running from anything now. I’m just interested in all these things. I’m seeing where my eyes can go without the deafness. In some ways the deafness, all the things I did, was taking the place of my inability to do other things. There’s a tendency for me to say, “It was hard, but I did it. Let’s do something else that’s hard.’ But maybe I’m just trying to rationalize why I want to say yes to Seattle.”
A week later he says, “I’m lost–I don’t know what I want to do.” People are pressuring him to keep working with late-deafened people, but he’s still reluctant. “I feel like I was a pioneer, and I talked about things that people never talked about–the shame and the humiliation and the insecurities. I pick up different periodicals now, and there’s all kinds of writing like that. Some of the stuff that the deaf community is publishing now is just littered with stuff by late-deafened people. And I’m proud of that in some sense, but I don’t know what to say about it anymore myself. Do I want my headstone to say, “This guy faced deafness?”‘ He bursts out laughing, then catches himself. “On the face of it that’s not funny at all.” Then he breaks up again.
“I think probably there’s something in me that cries out to be special, but there’s also another part of me that just wants to be an unknown and just sort of live a life quietly and do normal things, rather than going around testifying in front of Congress, rather than being on boards and being looked up to as a role model. That’s the part pulling me to Seattle, that just wants to go to work and have a family and enjoy a lot of things I haven’t experienced in life–a normal sort of existence.”
Microsoft has given him a deadline: he has the weekend to decide. “I realize–though it’s very, very hard–that probably the best thing for me to do is to go somewhere and let myself grow in a different way. But there’s two people involved.” He pauses and says slowly, “I get the feeling that if I don’t go I’m going to regret it, be real hard on myself about not doing what I think is best. That’s very much like my father, who thought he didn’t do the best thing. He always talked about how he should have moved to some suburb. Instead he stayed on the south side, and he hammered himself on this. I heard it over and over. “I should have gotten out of here.”‘
A week later Graham has decided to go to Seattle. His last day at World Book is December 29, and he and Karen are flying out January 10. But he’s still torn. “I had to make the decision, and that’s tough. It’s tough to know that not everybody’s going to be happy.”
He could still change his mind and not go, but he says the relief that decision would bring wouldn’t last more than a couple of days. “My journey can go somewhere else really fast in a year or two. Maybe I’ll do deaf stuff, maybe I’ll do something else completely different. But it has to go somewhere now, and I think this is where it has to go. Encyclopedia editing happens to be me. It’s the way I developed, and it’s what I know. And I’ve been good at it.”
A few days before Christmas, nearly three months after his hookup, he seems calmer, more cheerful. He’s still listening to books and music on his Walkman, and he tries to catch every Bulls game on the radio even though he can’t pick up more than 5 or 10 percent of what he hears. “Maybe in a way everything I hear brings back memories. I used to listen to the radio a lot when I was a kid. And if I can’t make out the words, the sense of chatter is like a lullaby or something. There’s a certain kind of reassurance to it. Because I haven’t done this in so long, it goes immediately back to my youth. It’s an activity I used to do at a time when everything was safe in my life.”
His brother Bob took him to a Bears game over the weekend. It was the first time he’d seen any of his brothers since the hookup, and he was surprised to discover how much Bob’s voice sounded like his own. After the game his brother drove him to the train station, and he was so intent on describing his anxiety about going to Seattle that he forgot to be nervous about how well he was hearing and responding. “He probably drove home thinking, Wow, we talked without any problem.”
But Graham’s frustrated that he’s still not hearing well on the phone most of the time. And he’s started to worry about what it will be like at Microsoft, with the pressure of a new job and of meeting new people, having to explain all over again that he can’t hear well, that they have to talk slowly and clearly and face him when they speak. “But I think all that exposure will help me improve more. Then I’ll be reprogrammed again and probably get better.”
Asked to look back from this new place, to say, if he can, what deafness has taught him, he sits silent for a long time, staring at his lap, then out the window. Finally he says softly, “Life isn’t fair.” He’s silent again for a while. “I’m more sensitive to people who have problems and understand that life isn’t fair to most people. I don’t know. It’s made me a very intuitive person.” Slowly he adds that he’s become more open to other people and more honest with them and with himself, and he doesn’t need to be in control as much–all things he might have said months ago in the same words.
Then he says, pausing often as he speaks, “I think I have an inner optimism that I don’t think I had before I went through all this deafness–things will work out somehow. And that sort of buoys me up sometimes, the idea that when I’m totally lost, like I was when I was deaf, it’s not the end–that you’re going somewhere, and maybe that won’t be the end either. But there’s some kind of pattern or framework to what’s happening that you can figure out later, some kind of compound adaptation that defines you eventually.
“I aged about ten years the last month. What did I learn from making the decision to move? I think that’s a bigger question than the deafness. Maybe I’m learning that deafness is really not that important. I was obsessed with it at times–it was the only reality I had. Now it doesn’t seem like a big deal anymore.” He stops and smiles. “Well, I got the implant too, so that makes it less of a big deal.
“If I hadn’t faced my deafness like I did I don’t think that I could have made a yes decision on this Microsoft thing. I think you have to take that route through deafness–not exactly the way I did–to get to a place where you’re going to face the harsher realities of your existence and your personality. Deafness is sort of like a shield, in a way, that keeps you from dealing with your real problems. Unless you really work with it, you never know. I think I’ve stopped blaming deafness for almost everything in my life. And now I’m stripped. I’m facing the me part.” He laughs. “The worst of the two.”
Art accompanying story in printed newspaper (not available in this archive): photographs by Paul L. Meredith.