From Silence to Sound…This is my story…
I’m 54 years old now, divorced, with two grown children and two wonderful grandchildren, Elijah who is now six and Liam who is four and a half. I lived alone for four years after the divorce until I found a lovely woman who has now been with me for five years. My kids “affectionately” call me knucklehead and my daughter taught my two grandchildren to call me Grandpa Knucklehead. They must think it’s a term of endearment and I don’t especially mind it, but someday when they get older I’m sure when they learn what a knucklehead is they’re going to wonder why I was anointed so. I must say I’m as happy with my life as I’ve ever been but it’s been a long journey.
It all started rather innocently during a school vision and hearing screening in the fourth grade. The school nurse said there were some problems with the high pitch tones and suggested I see a doctor. The doctor told my mother it was probably just wax in my ear. End of story, right? Wrong, it was the beginning of an almost 30 year, slow journey to the world of silence. It was obvious in subsequent school hearing tests that the problem wasn’t wax in my ears. Most people, including my kids, will tell you there’s nothing in or between my ears. The hearing loss came on so slowly and gradually that I didn’t even notice it until I was a sophomore in high school. I didn’t have trouble in class or in conversations with my good friends, I just noticed in situations with a lot of background noise everyone else seemed to be able to hear except me. By this time I was seeing a hearing “specialist” who could only say it seemed like the loss was slowly progressing, but he couldn’t tell me why or how bad it would get. He was a good doctor and a really nice, compassionate man and I learned after seeing about three or four “specialists”, including one at Loyola, that there didn’t seem to be a lot of research into hearing loss in the late 1960’s or early seventies. By my senior year in high school, my hearing loss was becoming more and more difficult to hide. I was always pretty independent and a bit of a “loner” but I started to compensate by avoidance. One on one I did OK but I learned to avoid parties, driving around in cars with people and music blaring. I still have good memories of high school, though. I was captain of the baseball team my senior year. I knew just about everyone in my senior class and they knew me so I just tried to hang in there and graduate.
After high school I spent two years in junior college trying to see how little you could do in class and still get a grade. I remember taking a class with a friend, showing up for the first day of class, going for the mid-term exam (and getting a strange look from the professor who I think didn’t have a clue of who we were or why we were there) and the final exam and managed to get credit for the class by showing up for three days. I’m not saying this out of pride, I was just at a point in my life where I didn’t know what I wanted to do, or really what I could do. Education seemed pointless because I couldn’t imagine who was going to hire me for any job of significance. By now my hearing loss was affecting virtually every part of my life. I was trying to figure out what I could do knowing my hearing was slowly getting worse. I knew from embarrassing episodes in stores and social situations, people didn’t have much awareness or patience if you couldn’t hear. I ended up quitting school and working in a factory for three years. That was probably the best education I ever got because I met so many people from different backgrounds and did so many things that helped me learn about life. Most of the people I worked with were from the inner city of Chicago and they didn’t make fun of me or pity me. I had to learn to hang tough and fit in. I came to love so many of the people at that factory. They became some of the best friends I ever had. I guess I also learned from these people that life is hard and it is what you make of it. It also helped break down some of the “barriers” I had built around me.
Then, out of the blue, I got a call from my high school sweetheart who wanted to know if I wanted to get married. We met when she was 14 and I was 16 and we went together for several years until she wanted “to see other guys”, which I quickly learned was “I’m dumping you”. We managed to stay friends over the next few years and saw each other occasionally. I hadn’t seen her in a while but I always thought she was my soul mate and maybe my best friend so I said yes! I told her I was probably going deaf and if she had a problem with that I would understand if she wanted to call off the wedding. She said she loved me and everything would work out. About this time I met some college kids from NIU working in the factory for the summer. They were all going to be special ed teachers. I thought that sounded pretty good and I knew I wanted to get a better job now that I was going to be a husband. I decided to go to Western Illinois University and become a teacher.
I quit my job in the factory and we packed up six months after getting married and moved into the married housing building at Western. I studied hard, went to class every day this time and graduated three years later. The only hitch was in order to become a teacher you had to pass a speech and hearing test. I didn’t know this when I enrolled. When my time came to take the hearing test I showed them my latest audiogram and said I probably wouldn’t do very well on their test but I really wanted to be a teacher. My first few classes had gone well. I got good grades even without my hearing aids so I didn’t see why I couldn’t teach. Their reaction was literally “Why are you here? Can you even hear what I’m saying to you now? (That’s how bad my audiogram was.) I just blurted out in anger “Am I supposed to spend the rest of my life locked up in a closet?” To make a long story short, they made me take some speech classes and ended up telling me they thought I could do any thing I really wanted to do because of the drive and work ethic I had developed. That made me feel very good and looking back, I think my college days were some of the best times of my life.
By the time I graduated college I had two kids and really felt the pressure to succeed and support them. In the mid seventies, if you were a man and had a special ed degree you could almost pick the job you wanted. I ended up teaching for eight years. For the most part I think I was a good teacher. My hearing was getting worse and I knew my teaching days were numbered. I looked into getting certified to teach the deaf or go into the business side of education. I thought being a business manager for a school district made sense because I would be behind a desk working with numbers and not having to worry so much about hearing. So I got my Master’s degree from Northern Illinois University in School Business Management. I noticed my grades weren’t as good as my undergraduate work at Western and looking back, I think a lot of it was because I wasn’t hearing as well. I was using hearing aids regularly but they only helped so much.
I was offered the first job I applied for after I got my Master’s degree as an Assistant Director of Business in the elementary school district in Palatine, IL. District 15 was the second largest elementary district in Illinois at the time with 12,000 students and 18 schools. During the two interviews we talked about my hearing and I told them I would probably have trouble on the phone and in large meetings. They apparently didn’t think that was a problem and just said the school principals may call you once in a while. So now I was thinking it was a smart move going into school business management. The principals did call once in a while, which wasn’t too much of a problem, but what they didn’t tell me was that part of my responsibilities called for me doing all the bids and purchasing for the district. That meant that 40-50 sales vendors were calling all the time and I was on the phone a good part of every day struggling to hear these people. After a month, I was getting so frustrated I was ready to go back to teaching and asking myself how did you manage to get yourself in such a miserable situation.
Right about that time I became involved in a small group of late-deafened adults who all went to the same doctor I had settled on. I’m not exactly sure how it started but we began getting together socially and organizing events and parties. It was great to be with people who were struggling in life just like I was because we all understood what it was like going deaf in a hearing world. (That group became what is now known as ALDA or the Association of Late Deafened Adults which I understand has become a huge nationwide organization. I am proud to say I was one of the founding members although I no longer see any of those old friends or have any involvement in ALDA.) I began to learn about interpreters, TTY machines and started to learn sign language with my ex-wife through classes offered by the local park district. Also, at this time, what was left of my hearing really started to go quickly. I went to my boss at work and told him I didn’t think I could do the job the way it needed to be done and asked if I could use a TTY machine to help on the phone and have my wife interpret at school board meetings where I presented bids and answered any questions the board members had. The only way I was surviving was because my secretary was one of the nicest, most compassionate individuals in the world and helped me tremendously. I told my boss I would pay for the TTY and it wouldn’t cost the taxpayers a dime to have my wife interpret. He talked to the superintendent and was told I couldn’t use any accommodations. When I talked with my friends at ALDA, they said it was blatant discrimination and I should do something about it. I didn’t want to cause trouble at work so I tried as hard as I could, along with my secretary, to do my job. One day, after about a year and a half on the job, my boss called me in his office and said they wanted a different person in my position. I was devastated. My job evaluations had been good even though I thought I was struggling. The hurt quickly turned to anger and I decided these people were not going to take away everything I had worked for and keep me from providing for my family. I went so far as to tell him if they had let me use the accommodations and they didn’t help, they wouldn’t have had to ask me to leave, I would have gone on my own. I decided to hire a lawyer and sue the district for discrimination if it meant keeping my job. To this day I have mixed feeling about doing that. My two supervisors and the superintendent were very angry and retaliated by giving me extra work, probably hoping I’d quit. The struggle of wills went on for about six months when the district finally backed down. I later learned that their attorneys told them they were facing fines from the federal government of up to $300,000 along with my potential lawsuit. As it turned out I never officially filed against the district.
My hearing doctor, Dr. Wiet, of Chicago Otology in Hinsdale, IL had been telling me about the potential of a 22 channel cochlear implant. I began reading and learning everything I could about the procedure. I though it was my only hope. I didn’t seem to fit into the hearing world anymore and I wasn’t equipped to belong in the deaf culture. Dr. Wiet approved me as a candidate for the implant in 1987. Now I had to figure out how to pay for it. School District 15 had a self-insured medical program and cochlear implants were not on the approved list of procedures. To this day I’m not sure why, but the district agreed to pay for the operation. I was very excited about the implant and imagined having my hearing back. I was one of the first patients in the Chicago area to have the implant so there was really no one to talk to about how successful it would be. After I had the device implanted in my head I had to wait six weeks to hook up and program the processor. As I waited for the day to start using the device I could barely contain my excitement and anticipation.
It was a Friday morning in June when they first hooked up the processor. After about 45 minutes we decided to take a break. I went outside and cried. The device made it sound like everyone was talking under water and all my hopes to lead a “normal” life were not going to work out. After I got home I decided to wear it for a few months and if it didn’t get better I would give it up. To my surprise, after a month, I noticed things were sounding better. I made my first phone call to my mother and could actually have a conversation. Maybe there was hope. Before long, I was doing better at work. After about six months, things were going so well at work all the animosity seemed gone and my boss was giving me extra work not as a “punishment”, but because he realized I had some potential and just because I couldn’t hear didn’t mean I was stupid. Twenty two years later I still work for School District 15 in Palatine. I’m the Director of Business Services and Treasurer for the district. I use the phone without problems and chair various committees without problems. The implant still keeps getting better, although I’m so close to having “normal” hearing that the improvements are coming slower. About eight years after the implant I started listening to music, something I’ve always loved. I have a collection of over 150 CD’s and hear music from the 60’s and 70’s better than I did when I was a teenager.
I was self-conscious about wearing the device at first. I’m practically bald now and cut what hair I have left very short so you see the surgical scar and the device. My secretary started calling me RoboBoss. I’m not so self-conscious anymore. I’m just glad I can hear. It’s odd, but when my hearing got really bad before the implant the only people who stuck with me were my two kids, my Mom and that secretary. I’ll always remember their kindness and support. Everyone else, including my ex-wife didn’t seem to want to have anything to do with me. I’ll remember them, too. I’ve probably rambled on more than I should have and hope I haven’t bored everyone to sleep. I don’t know how or why, but everything just seemed to work out for me. You probably noticed my many references to “around this time” which I always seemed to be in the right place. As Jimmy Buffet would say “some of it was magic, and some of it was tragic but all in all I’ve had a good life.”
I’ve been helped by many people so if there is anything I can do to help others, please send me an e-mail at email@example.com.
These are just some of the things I heard today:
My dog bark
When I turn my processor off I hear…absolutely nothing…total silence.