A personal account of living with deafness
For a current update on my cochlear implant experience, go to: http://withinearshotbc.blogspot.com
Thursday, December 08, 2005
My early years
On March 6, 1961, on a cold snowy afternoon in Camrose Alberta, I came fighting my way into the world. I was born premature, RH-negative, (a blood condition where my body was processing blood that was not compatible with my moms.) Prior to me, my mom had experienced two births, the first one being normal, but the second was a still-birth. She was concerned at the weakened inactivity of the third unborn and it was decided I would be delivered a month early by C-section in an attempt to save my life. Nowadays it is not as complicated as advances in scientific understanding were able to correct the blood difference. I was born and had major blood transfusions and recovered in an incubator for two months before I was well enough to go home. Medical practitioners have determined the excess oxygen in the incubator may have damaged the hearing part of the ear as there had been a history of blindness, deafness or mental disability in babies that were incubated for a time. Also, the deafness may have been affected by the complete blood exchange. I was watched for cerebral palsy - a possible side effect of blood exchange. There were no signs.
My parents discovered my deafness when I was under a year old. My mom shares the story of testing my hearing for the first time. She was suspicious I wasn't reacting like my sister and brother to sound. On this fateful day, I was playing in my crib while Mother was cleaning the room. Something fell from her hand, and the crash on the hardwood floor let out a loud noise. She turned to see if it had frightened me, but I appeared oblivious. I immediately was tested, and it was determined that I had a sensorineural bilateral severe to profound hearing loss.
Within a couple of years, my parents researched all they could to find the education they were wanting for me. They wanted me to learn to speak, to use whatever residual hearing I had. They resisted recommendations that I be put in a deaf institution. It was not an option for them. They made no hesitation to fit me with hearing aids that my grandparents paid for and then they entered me in a preschool in Edmonton, an hour drive from home, as there were skilled educators who worked with deaf children.
The move 1000 miles away
In my parents research and travels, they discovered and assessed a private oral deaf school in Portland, OR. Satisfied by the school's philosophy, they decided I would become a student at Tucker Maxon Oral School. In a determined spirit, they packed up the family, left behind the farm machinery business and moved 1000 miles away from their loyal and supportive friends and family into the big city. The small town of Camrose had been their home for many years. My parents had a setback with Customs upon the move across the border. Customs couldn't understand why I was going to a deaf school, as my parents answered questions and papers were being filed. The medical doctor had made an inaccurate official report - labeling me mentally retarded. That caused quite a fury for Mom and Dad! That aside, we settled in the USA into a neighborhood near the school where my parents and I would be guided under the directorship of Hattie Harrell, a committed woman who believed in the possibilities of speech for deaf children. My mother dedicated much of her time to the school, while my father struggled to make a new life for the family. My older sister and brother made new friends in the neighborhood while I followed suit. My siblings were a huge influence on me, and I wanted to be normal, just like them. In my early days, frustrated with my inability to hear and be understood, I would throw temper tantrums by throwing and banging myself on the floor, leaving bruises on my forehead.
My daily school life was a struggle. I recall the daily morning routine of resistance when my mother woke me up. I DID NOT WANT TO GO TO SCHOOL! It was much too hard, as I felt the daily grind to succeed. In my determination to refrain from getting out of bed, I would pretend I was dead as a fallen tree as she dressed and dragged me to breakfast. I was miserable until I entered the door of the school, and at that moment my behavior would change. Influenced by the educators, I desired to be a perfect student. I was driven. I wanted to push hard. One year, the stress got to me with a teacher who I adored. She challenged me so much that I couldn't keep my food down. My doctor prescribed medicine for a time to settle my nerves. I wore a body aid, complete with a harness, wires snaking up the neck to knobs attached to molds in my ears. Heaven forbid that I would wear it outside of school. I dreaded the dinner hour, as I knew my 'dessert' was going to continue with hours of reading, writing and speech work with my mother. She made sure it was a nightly routine or I was in trouble by the teacher if I didn't have an updated journal for her on the next day. Looking back, I do believe the idea of journal writing is a great idea, as it taught us English skills and enabled the teacher and parent to be in tune with the child’s day to day life. Besides, it was an opportunity for two-way communication and speech practice. To this day I still have my journals from my early age and am baffled at the grammar I was learning at such early age.
Making the transition
After seven years of ongoing success at the oral school, the director decided I would be the guinea pig in an experiment. Mainstreaming the deaf into the hearing schools was a new idea. I would make the transition by spending mornings in Grade 3 with my best friend who was hearing and enrolled in a catholic school. As I do not come from a catholic background, I was amused at wearing the uniform. I often think of my third grade class being identical to the original story by Ludwig Bemelman: "Madeline." Sister Margaret, in her headdress, was the teacher, had a very firm presence while the students sat dressed identical in rows and rows (a big class, of 30 hearing students, compared to mere 5 deaf classmates at Tucker Maxon). I enjoyed the challenge because it liberated me as ‘normal’ if it wasn't for the obtrusive body aid! My mother would pick me up at lunchtime, and on the short drive back to Tucker Maxon, I changed into my regular dress. I ate lunch in the car for a year during this transition. Approaching Grade 4, the educators decided I was successful and able to go full time at the public neighborhood school, where my older siblings attended. There was a plan for a special needs teacher to assist me one-on-one weekly, but she proved unreliable. Besides, I despised being singled out and pulled out of class as I felt it was drawing attention to me. The issue was ditched. As I was athletic, I quickly gained confidence from my classmates when it came to gym and recess. This was good for my self esteem, as I did struggle with self acceptance, like any kid wanting to 'belong' in the system. I had some hard times with several girls who mocked my deafness until I invited them to my birthday party in the spring. We became friends the rest of the year.
For the rest of elementary school, I got through it like any regular kid. The bonus was that I was fitted with behind-the-ear (BTE) hearing aids that were powerful enough for me. I loved them, as they were hidden in my hair, giving me the appearance and confidence of appearing normal AND I could wear them 24/7. To hear sound constantly throughout the day was a delight for me. I discovered a passion for music, as my older siblings were teens and played songs on the radio. My sister took on a role, often sitting with me as the vinyl record player belted out the tune. She would guide me through the lyrics over and over, until I recognized the voice in the music. My brother, a natural dancer, taught me how to dance. I felt the expression of life and song emerging. I was hooked!
I developed strategies to help me get through a school day. I sat in the second row from the front near where the teacher would present her lesson. I sat next to classmates who were good note takers and were loyal to collaborate with me and make sure I got information I needed. I had found my rhythm and independence. I spent many memorable weekends snow skiing on local Mt. Hood with my family. Summers were spent happily playing with neighboring friends, visiting relatives in Canada with our ski boat and camping by the lake with a mutual family of friends who also had a son attending the same oral deaf school. (A note of interest: he has been implanted for eight years now, and is happy with it. He has been successful in his leadership role with Boeing. He and his wife have two sons,with hearing loss and are implanted as well. Emerging as teens, the sons enjoy music on their IPODS and can now talk on the cell phone!)
High School and beyond
High School was no less different, other than I struggled in team sports. I played girls soccer one year and found the gap in communication too great for me. I can't remember a word I understood out there in the wide field. I did do some cheerleading for the football team with my peers, and that was about it for a "team sport." I chose to stick with individual sports, my passion being snow and water skiing. I had a nice circle of friends, a supportive family and patient teachers and that kept me happy throughout. I thought I would become a hairdresser when I left high school, but during the first year of training, I found the sound quality of the environment unbearable. The running water, the whirring from the hairdryer, and all the usual noise amplified by the hard floors and mirrors made my days taxing. It was impossible to communicate with the client. I dropped out. Unsure of my career path, I took on a desk job in an office for two years.
I shall not forget the day my mom came to me with some news. By this time she was working as an administrator at the oral deaf school. She passed on a message from the director asking me to come see him for a job opportunity. The doors opened for me and I was back at my old school, happily working as a teacher assistant. I was approached by a member of Self Help and Hard of Hearing organization (SHHH) to consider starting a social group with the alumni for friendship and support. I arranged guided day trips cross-country skiing, rock-climbing, hiking and biking. The school opened up a room for monthly get-togethers to watch closed-captioned films. The access to movie captioning was limited, but we did a lot of socializing! It was a fun time. However, I was not putting in enough hours in a day to pay the bills. I sought out employment at Yellowstone National Park, in Wyoming. Upon learning I had a “hearing impairment”; the human resources department offered me a job working as a housekeeper so that I would socialize in sign language with fellow deaf workers. That posed a problem for me, as I didn't know how to sign! Instead they put me in the staff cafeteria with hearing co-workers, where I cooked, served grub, Buffalo wings and washed dishes for fellow employees in the Park. It was a wonderful time in the wild, as I met avid hiker friends and we did unforgettable backpacking treks through the summer.
Once back home, I sought the US Bank for work. In its bid to allow access to employment for persons with disability, the company provided a free training course. Seeking more hours and benefits than what I could get working at the school, I applied, became trained and worked as a customer service teller. A late-deafened woman trained me, and we also worked at the same branch. That job challenged us both, as it required us to hone our lip-reading skills every day. One important thing for us was to have a sign at our pod, alerting customers to look at our faces to communicate. Most of our customers were very patient and kind with us, but there were a few that avoided us all together – they seemed afraid of the posted sign! After two years I got restless and chose to make a big move. My cousin from Canada, who I am close to, shared that she needed a roommate. I offered that I was willing to uproot and move north to Vancouver, BC to live with her. Eager for adventure, a new job awaiting me in Vancouver, I said goodbye to the familiar and moved back to the country (but not the town), where I was born.
My family remained, and still live in Portland while I have made my life home in BC. It is a 5 hour drive south to visit my family, for that I am grateful it is not too far a distance. The girls and I see them every year, during holidays. We remain close by email and instant messaging. I have a bilateral phone headset, which helps me to hear them but long distance costs and anxiety on my part when I am struggling to hear what is being said, keep me from using it consistently. (I often fall back on my children to interpret for me, but this is not something they are keen to do. I empathize.)
I worked in the bank working in various departments before I married and became pregnant with our first and second child. I took ten years off work to care for the family and to fix up our two homes and garden. My BTE's (behind the ear hearing aids) provided sufficient with my skills at lip-reading. Having the children was good speech therapy for me, as I was constantly communicating with them, reading to them daily as my mother did with me and my siblings. These days my girls assist me when I am speaking a word incorrectly. They are excellent students, avid readers and have been playing piano since their early years. They are learning different instruments such as guitar, base clarinet and saxophone. I tried learning piano along with the kids when they were at the pre-school level, but they moved ahead too fast and I couldn’t keep up. That was okay, as I was distracted in training for marathons and triathlons for a few years.
I took on part time employment at the Main Library downtown obtaining steady Friday hours in the Accounting dept. I did some full-time contract work. I enjoyed the time conversing with adults and started rethinking what I wanted to do with my life outside of home. At that time, I also became aware that I had more challenges to face… the city of Vancouver was becoming very multicultural. The ability to understand the variety of european and asian accents became daunting. Desiring to seek work in the world of the deaf and hard of hearing, I looked into hearing loss organizations and joined the Canadian Hard of Hearing Association (CHHA). I applied at the Vancouver Oral Centre, a deaf school for very young children, and viola! I had a job there. For two years, I worked in the mainstream part of the program assisting the teacher in dealing with children who were making a transition into the hearing schools. The mainstream portable eventually had to close, and I was crushed with the news: I was laid off.
Learning sign and obtaining a CI
I needed to enhance my resume. It was time for me to go back to school. I knew I wanted to remain in the community with deaf and hard of hearing people. I sought to learn sign. An oral deaf teacher actually suggested I learn, not only for career reasons, but told me it may improve my life. She was right; I saw its many benefits. There are no longer barriers when I meet a deaf signing person. I can now go to church, attend a workshop and relax when an interpreter is there. It is a three – dimensional language so I am able to grasp a fuller understanding of what is being said. Although I am good at being conceptual with sentences, I still struggle with words on the lips. My struggle has been eased with sign. While I was in school full time for a year, I spent some energy trying new hearing aids that were digital. That proved to be an unexpected adjustment, as I’d always had powerful analogs. The outcome now is that digital isn’t loud enough for me, but the sounds are clearer. The reason I wanted a new hearing aid was to be able to hook up to a FM System, a device that is often used for deaf children in large classrooms. (I enjoy learning at school, as I often take courses and workshops.) The teacher wears a microphone, and it enables the FM user to hear her more directly. All in all I didn’t find the system very beneficial as not only does it amplify sound, it also amplifies unpleasant noise and the sounds are unnatural to me.
With the signing and an increased knowledge of history in deafness under my belt, I am blessed to find work with two organizations that focus their energies in providing abilities to deaf and hard of hearing children. In one job, I work in the preschool assisting several special needs children with hearing loss. In the other, I work with families, audiologists and speech/language pathologists to provide insights and sign to improve communication with the deaf child. I use my voice every day and also sign. I have found my calling and love working among these people. As I was wearing my new hearing aids, however, it was brought to my attention by my family that I wasn’t responding like I used to. I loved my digitals, as they work well at suppressing background noise and the sounds are more natural, but I soon realized that I was having a harder time communicating within my home.They are not loud enough. I would often miss my daughters calling out as they came in or out the door. The final test for me came when I would ask yes or no questions through a closed door to my children. I used to be able to hear the “S” in “yes” so clearly. After several adjustments on the hearing aid, the audiologist told me they were unable to increase the sound. In March of 2005, I called for a formal examination at the hospital. It was determined my hearing had continued to decrease and that I was now on the list for an implant. (Prior to that, I had been tested twice in the last six years. I was labeled ‘borderline’ candidate, meaning I was doing well with whatever residual hearing I had left.)
Currently British Columbia will only implant devices manufactured by Cochlear. Because the Canadian governments Medical Services Plan pays for the operation, they have limited options in each province. I struggle with the lack of options, but after speaking with many recipients in BC, I have yet to find one discouraged by the product made by Cochlear. Now I will be entering a new chapter in my life, with a surgical implantation on Dec 12, 2005 consisting of a computer chip inserted on the skull behind the ear, with a cable into the cochlea which looks like a snail. In mid to end of January 2006, I will be “switched-on”, using the processor and will begin the new adventure of sound.
For a current update, go to: http://withinearshotbc.blogspot.com