Kathy

I was born with a severe to profound hearing loss, which was not discovered until I entered Kindergarten at the age of 5. My teacher called my parents and said that I was not paying attention in class. Already used to this, my mom responded with “Oh, she has always been that way and we just thought she was in her own little world.” I had always been in trouble for sitting too close to the television and turning up the volume, or for not coming when I was called. My mom recalled that my younger sister would always come and get me when I was wanted. The school suggested that I have my hearing checked, and the doctors informed mom that I did in fact have a severe to profound loss and should be institutionalized–that I would be mentally retarded.

Of course, my parents were stubborn and refused to accept this diagnosis. I was their first-born child, and they were very young (21 & 22.) They took me to many specialists trying to prove that I could in fact hear! Mom refused to believe it because I had always listened intently while she read books to me. However, she always wondered why I never looked at the book, but instead at her. Once I was diagnosed the speech therapists told her I had probably taught myself to lip-read at a very early age. As for my speech, mom said I didn’t talk much and was a quiet child.

We lived in a town called Edwardsville, Il and at the time there was a program at Southern Illinois University in which students were working with children who had hearing loss to teach them speech, lip reading and auditory training. I was fitted with one hearing aid and attended this program on a daily basis after school. I continued attending school at St. Mary’s Catholic School through 4th grade, where I would always sit in the front of the classroom. I began 5th grade at Edwardsville Public Schools and continued to work extensively with a speech therapist. I remember working hard at speech and auditory training, but still feeling very frustrated that I could not hear the rest of my classmates, or if the teacher talked with her back to me. Other kids teased me and called me “retard” if I didn’t hear something and asked for it to be repeated. I worked very hard at school, often reading extra to try and make up for what I was missing in the classroom. I made mostly A’s & B’s, but remember so clearly being afraid to answer questions because I did not hear it properly, or if I didn’t know if another student had already answered it. There were times I would answer a question and be laughed at because it had nothing to do with what the teacher asked. This had me hesitating to respond to questions and I recall many times the class being penalized for not doing homework or being able to answer a question–when I in fact had done the homework and knew the answer, but was just afraid to respond for fear of being wrong.

In 5th grade I had the opportunity to join the band. I could hear music, but not understand the words. What I could hear, I enjoyed. My sister and I would play records endlessly in our room and she would lip sync the songs to me and as we got older, she would write down the words to the music so I too could sing along. So when the opportunity to play in the band came up, I thought, “Hey, I want to do this.” I chose to play the oboe, as it was the only instrument available for me to borrow. My parents could not afford to rent or buy an instrument. I remember blowing on this and sometimes hearing the sound with my hearing aid, but I really couldn’t hear what I was playing. They later switched me to the tenor saxophone, since I just couldn’t hear myself playing the oboe. Even with the deeper tones of the sax, I still could not hear sharps and flats so I switched to the drums in 7th grade and continued to play through one year of college! Today, I truly believe that my band experience has helped me with making the best use of residual hearing–learning different pitch, rhythm and intonation…things so important in speech. I even played in the marching band and remember all I could ever hear was the drums! I thought (and still do believe) that the drummers were the leaders of the band!

Being the only child with hearing loss in the public school was very isolating. Hanging out with groups of kids was hard because I could not keep up with what everyone was talking about. I generally had one or two friends…..other kids that were also teased for being different. I remember being able to relate to adults more than other kids and they seemed to think I was so mature for my age. I tried to be as normal as possible and would get mad if someone said, “She is hard of hearing!” I would respond with “No, I’m NOT!” and then just work harder to prove it! I remember working so hard in school to get good grades to prove to the other kids I was NOT dumb, stupid or retarded, as they seemed to think. I worked hard in speech to talk as normal as possible, and make the best use of my residual hearing. While I remember hating speech and trying so hard to learn to say “S, T, Ch, Sh,” etc, I am so thankful for this hard work now because even prior to the implant I had pretty good speech and got lots of compliments for it.

I always enjoyed biology and science classes. I have always been fascinated with how the human body works (I still am, and today am actually certified as a massage therapist!) I gave up my dream of being a doctor after I told a guidance counselor. I was told, “You, can’t be a doctor because you can’t hear.” I then said, “No problem, I will be a nurse.” That person responded with “You can’t be a Nurse because you can’t hear the doctors.” I focused on accounting because I figured I wouldn’t need to be able to hear in that profession and it was another one of my best subjects. Later I figured out I just had the best teachers in biology and accounting who took time to make sure I understood everything that was going on, thus allowing me to do so well. If I liked a teacher or an adult mentor, I worked even harder to do well and make them proud of me. The same was true for my parents! (I guess that explains why I got a D in freshman Algebra, because the teacher just could not believe or understand that I had a hearing loss and always just accused me of not paying attention!)

My family was very poor so we sought out services from the Division of Rehabilitation Services before college. I completed the testing, but my reading & comprehension scores were at the 8th grade level. The counselor said I was not college material and should think about vocational training. I decided against it and saved money from my part-time job at A&W and took out student loans to pay tuition. I was going to prove to her that I WAS college material and that I could do well.

As for my job at A&W, I just wanted to mention that my hearing loss almost prevented me from getting this job! I had applied one year and was told that my hearing loss prevented me from getting the job. A year later, my sister got a job there and kept telling the boss to hire me. I applied again and they were impressed with my persistence and decided to give me a chance. While they wouldn’t let me work at taking orders, when we got really busy I would “just do it” and they realized I was able to lip-read good enough to get the job done. Sometimes the boss would stand at my side and make sure I got the orders right, occasionally telling people “She is hard of hearing, you have to look at her.” I was one of their best workers! The only thing I couldn’t do was take orders on the speaker for the cars using the drive-in.

I was accepted into Eastern Illinois University where I thought I would major in accounting. Boy, what a shock! I was not prepared for classes of 300 students and my identity being my social security number. No matter how hard I tried, I just could not hear the instructors in those big classrooms, performed poorly, became deeply depressed and withdrew from school. I thought I was stupid after all, and that the Vocational Rehab counselor was right. I had no idea or understanding that the larger rooms & lack of individual attention were making it hard for me to hear and gather information. Socially I was even more withdrawn, because I could not keep up with all of the conversations the girls in my dorm were having.

After withdrawing from Eastern, I went back to work at A&W and got a second job at Taco Bell (again because my sister worked there!) to earn enough money to support myself. I entered classes at Lewis and Clark Community College in Godfrey, IL. It was at this time I was approached by someone who worked for special services for students with special needs. She asked me to come to her office and explained that I could have a sign language interpreter if I needed it. I was shocked and had no idea what this was. She then explained to me that they could get me a notetaker to take notes in my classes. I was thinking to myself, wow this could really help me. I went on to graduate with honors.

While at Lewis & Clark I was introduced to another person who was Deaf and used sign language; the first Deaf person I had ever met in my life! Again, I was shocked! I thought all people with hearing loss talked and read lips just like me. Now I felt even more lost because here was another person who couldn’t hear and I couldn’t even communicate with them! I thought to myself, I will take sign language classes and learn how to communicate with them. Better yet, I will become a Deaf Ed teacher.

I decided to continue my education at MacMurray College in Jacksonville, and to major in Deaf Education. I could certainly learn sign language and be a good teacher for the Deaf. When I got to MacMurray, I found that I actually had a mental block to learning sign language. I had lived 24 years of my life trying to be as normal as possible and signing made me look deaf. I finally got over this years later and am now fluent in sign language and proud of it! While at MacMurray, I discovered that I didn’t like writing lesson plans, but loved Psychology & helping others so I changed my major 3 classes short of graduation. Having heard of Gallaudet University I thought wow, this would be such a cool place to go, learn more about deaf culture, learn sign language and perhaps find “my place in this world”. I was excited that they had a Master’s Program in mental health counseling. I was a good listener and loved helping people solve problems so I surely would make a good counselor! Unfortunately, when I went for my admissions interview it was with a Deaf man, fluent in ASL and my signing skills were just minimal. I was not accepted into the program and left feeling more lost than ever. If I couldn’t fit into the deaf world, and I was feeling isolated from the hearing world where exactly was my place in this world?

Fortunately I was confident enough in my abilities and goals, I applied to and was accepted at the University of Illinois Human Development Counseling program for graduate school. After one year, I was making straight A’s. I still felt this urge to fit in more with the Deaf community. Once again I applied to Gallaudet and once again I was not accepted. (Even with a 3.9 GPA my first year of grad school and being willing to start over from the beginning at Gally!) I was beginning to feel that I was just “too hearing” for the deaf community.

Once I graduated from the U of I, again with honors, I went out looking for a job. During the interview process they would ask me “You are deaf, how can you be a good counselor?” I would always explain that I was an excellent lipreader and an even better listener but still could not get a job! The question always came back to how would I talk on the phone with a client in crisis and I would explain the tty & relay service. Unfortunately I was not able to get a job and I realized perhaps it was time for me to focus on REALLY learning sign language and I could work as a counselor with Deaf and hard of hearing. I pushed my mental block aside and began rooming with a Deaf woman in Jacksonville who was willing to teach me to sign. I also got a job working at the school for the deaf as a dorm parent on a temporary basis. My signing skills got better quickly and I was then hired as a part-time therapist for Deaf and HOH at Community Counseling Services in Jacksonville.

One day I received a phone call from Kris Smith at DORS. She said they were in need of Rehabilitation Counselor’s for the Deaf in the Chicago area and would I be willing to interview. I had no intention of moving to Chicago but thought I would do the interviews anyway. I also thought in the back of my mind that I would be a great RCD and I would never let my deaf or HOH clients feel that they could NOT do something. Lucky for me and for ORS, they interviewed me in beautiful, downtown Chicago and I was hooked. They also offered me the job practically on the spot. I accepted and became well known as a pretty decent RCD.

I loved working with the Deaf and HOH but I loved more that I could make a difference in someone’s life and help them develop confidence in their own abilities AND be successful. Many times I would argue with my supervisor that I felt an individual who wanted to go to college, would and could succeed. Most of the time I was right and I still to this day believe that individuals who are Deaf and HOH can do anything they want or dream if they put their mind to it and also have role models and the self esteem to believe in themselves. Sometimes it would take me believing in them until they could believe in themselves for them to be successful, but the bottom line is they are now successful!

At the same time, I was becoming a more active and respected member of the Deaf community. I finally found my place in the world and was no longer feeling isolated. The only place I was feeling isolated was within the hearing world as it was so difficult for me to carry on conversations in large groups. I was really limited to 1:1 or small groups in quiet environments. I remember actually getting migraine headaches before holidays or large family gatherings, just dreading the thought of sitting there all day while people were laughing and not knowing what they were talking or laughing about. I had also been promoted to a job requiring more interaction with hearing professionals and this was causing me to feel extra tired at the end of every day, my ears were beet red because I had the highest powered hearing aids but they just were not helping. I was at a point where I had accepted my deafness and was willing to take off the aids and enter a world of total silence. However, the thought and experience of this total silence was very dark and dreary to me. I couldn’t stand the thought of giving up my beloved music, which was becoming more difficult to enjoy. Worse yet, I feared withdrawing more from my immediate family, including my precious nieces & nephew who were to young to understand why I couldn’t hear or understand them.

One day my dad said “Why don’t you get a cochlear implant?” My first reaction was NO WAY, NO HOW! I was involved in the Deaf community and had heard horror stories of having a hole in your head, surgery requiring drilling into the brain, fear of implanting children and the deaf community disappearing and worse, not being able to shower, swim or even having to give up sports if you get an implant. Since my dad has been searching for a cure for my deafness since that day I was diagnosed and I just wanted him to accept that I was deaf I came up with a bet and a bright idea that could make him drop the subject forever! I told him that I was not a candidate for the cochlear implant because I had been born deaf and that I didn’t want it because I would lose all of my Deaf friends. I then told him “I will go for an evaluation and prove to you I am not a candidate, if you then agree to drop the subject forever!” Little did I know that this would soon be the best bet I have ever lost in my life.

He got my aunts involved and they researched implants and implant centers. I made an appointment for an evaluation. During this evaluation I met another woman who had an implant and a hearing loss history similar to my own. We took her out to dinner and noticed that despite the fact we were in a dark, noisy restaurant she was hearing everything! She shared her story of being able to talk on the telephone, listen to music, books on tape, radio newscasts, hear birds singing and much more. I noticed she did NOT have a hole in her head, she could swim, shower and be active in sports. (I have played softball for 36 years, including college and was NOT willing to give up my beloved sport!) I decided to do further research and realized that many of the things my deaf friends had told me were simply myths! I found out I was in fact a candidate for the cochlear implant, but I would probably only get environmental awareness as my hearing loss was pre-lingual and my brain had no memory of speech & other environmental sounds. I would have to be taught to recognize sound. For me, the idea of having environmental awareness was just fine. If this meant I did not have to enter the dark, dreary world of no sound and I could have a tool to assist in communication, it would be worth it.

After intensive research I decided to go ahead and have the implant. To this day it is one of the best decisions I have ever made. Not only am I able to hear and recognize lots of environmental sounds including birds singing, water running, kids laughing, the heartbeat of my nephew while he was still in my sister’s womb, turn signals clicking in the car, bees buzzing, the crack of a bat at ball games, the pop of the glove when the ball hits the mitt, beautiful music of a harp, the ocean, a clock ticking, and much more…..but I AM able to talk on the telephone and understand 88% of speech without lipreading in a quiet environment! I am able to have long conversations with my young nieces & nephew, I now enjoy going to family gatherings, and music is much more fuller and sounds better!

Now, I have to be honest….I had to work very hard in therapy to learn to recognize sounds and understand speech. In addition to attending therapy sessions 2 days per week for 9 months, I had someone read to me, play environmental sounds, read sentences, and vowel/consonant clusters every day for at least one hour per day. I had to train my brain to hear and recognize sound. This was and is hard work. I also listen to books on tape, initially following the book but now I can hear the tapes just fine. I was fortunate to learn while doing my research that 1% of success with the implant is the surgery, 4% of success is the audiologist that programs the device and 95% of success would depend on me, my commitment to therapy and my family support. I also did not have high expectations and only hoped for environmental awareness, but knew if I worked hard in therapy, it was possible I could get much more and I did!

My life is much different with the implant. I am still deaf and on occasion enjoy taking the implant off and just having some quiet time. It is one of those cool advantages that I have. The implant for me and many others is NOT a cure, but a communication tool. It has reconnected me to the hearing world. I have retained all of my deaf friends and a few of them have even gotten implanted themselves. I have grown personally & professionally and my self confidence has continued to grow. I no longer have a stiff neck, shoulder pain or migraine headaches because I no longer have to strain and work so hard just to hear. I sometimes wish that I had had the implant during my school years as it would have been so much easier to get auditory information. College would not have been nearly as difficult or tiring and I certainly would have been more social. I’m not saying I had all bad experiences, because I am a true believer that all of my life experiences have made me the stronger person that I am today. I wouldn’t trade them for anything. I am saying that for myself, growing up as a child with profound hearing loss , I felt isolated and missed out on a lot of birthday parties, current events, gossip, movies, television and much more. Even though I appeared to be functioning very well, I was always trying ways to compensate and be as normal as possible. In other words, I worked several times harder than most hearing kids had to work to succeed in school, work and many other things in life. In fact, I never knew how hard I had worked until I got the implant and realized how much easier it was to communicate!

I have been asked many times if I had a child that was deaf, would I implant them? Absolutely. In a heartbeat! Of course I would be scared and worry about putting my child through surgery, but I would also worry much more if they were being included in school & social activities, were they feeling like they were a part of the family and were they getting all of their needs met. I would want them to be able to attend birthday parties, hear cheers for them when they play sports, be able to talk on the phone with friends, and even be a part of the latest gossip!

So yes, I would have them implanted BUT I would also teach them sign language and introduce them to all of my friends in the Deaf community. Children with implants or just hearing aids, whether they sign or not are an important part of this community and it is up to us to teach them about others who also have hearing loss so that they too may figure out where they fit in. I also want them to grow up knowing that birds sing, wind whistles and water does in fact, make a beautiful sound.

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