Little did I know that after posting the page about technology and how it helps deaf people, that I would have an event that so illustrates this. Yesterday morning after I got up with my son, I checked my phone for messages. I had one from my common-law spouse/boyfriend. Actually 3. He had been in a serious head on collision 30 minutes after leaving home for work. Had it not been for the ability to text each other, I have no idea how a) he’d have been able to tell me what was happening since I am horrible on the phone these days and b) reached me otherwise .. the cell phone, especially the smartphones with the ability to text, IM, email etc really does make communication easier for deaf people, particularly in a serious event like what we went through yesterday. I am so grateful he is ok, and that I was able to do what was needed without confusion, repetition and panic. Life can turn on a dime, its too short, don’t have regrets, and love your loved ones unconditionally and show them daily.
I wonder sometimes how people see me, do they see me as a deaf person or do they see me as a PERSON? What do they think when they first see me, hear me speak, see my hearing aids? What will change when the cochlear implant makes it more obvious that I have something wrong with me? Over the years I have heard compliments about my speech, praise over my achievements, but I have also heard names like “Helen Keller”, or that others thought I was dumb, snotty,etc.
In high school I was asked to try out for cheerleading. I had only been at the school a few weeks, so this girl barely knew me and yet for some reason felt I would be an asset to the squad. I wish I had asked her why she did, and what she saw in me. I made the squad, and as we prepared for our cheerleading competition, the other girls worked with me on learning the cheers and the moves. Did the other students see me differently once i became a cheerleader? Or did it simply highlight further that I was different?
University was different, I didn’t seem to make friends as easily.. but I supposed I held myself aloof, as I found it stressful.
Work, I seemed to fit in ok. Teaching was different since it was the students that matter. Camps and daycares, well I learned to work out a system of communicating that aided me in working well with my co-workers. My current job, I know I am missed right now, as I am on maternity leave. Missed for my ability to make things as cohesive as possible, my organization skills, and my ability to step in and help where needed easily.I am not the only deaf person at work, I have a co-worker who has a more moderate hearing loss, although she has similar difficulties as I do with the phone and with communicating with others.
My online friends, through my mommy groups as I had my children, those I met online on Facebook, I wonder sometimes what they think.. do I portray myself accurately? Writing is such a different medium than actual face to face conversation. I am constantly rechecking what I write to make sure that I am not inadvertently stepping on anyone’s toes. I check for spelling and grammar errors, although I admit I am sometimes prone to shortcuts as well as speedy fingers (typing errors). I wonder if my deafness comes through sometimes in the writing. I know my vocabulary and writing skills are better than most my age with my level of hearing loss. Not everyone knows, as it is not visible. The only way a person knows online that I am deaf, is if I say so. Here, in the social networking medium, I can pretend to be just like anyone else, a normal human being that deals with the same day to day things that anyone else does. I can hide my deafness if I choose to. For whatever reason, I do not. I don’t talk about it all the time, but when it is relevant, I bring it up, and share my experiences. What do people think when I do this?
I am curious right now what people are thinking as they read my blog. What they will think over the next year as I adapt and work towards using my processor and implant successfully.
Why is my speech comprehension declining so much? No one can really explain to me why it is declining so rapidly. My audiologist theorizes that my brain is overworked from working at it for so long. Once I left home for university I had to work much harder at it to be self sufficient, and with being the “hearing” person in my marriage (ex is totally deaf) and having to use the phone and handle all those things myself added to it. I used to be very confident in what I was hearing, but now I question what I hear and it feels like the game Telephone; gets broken and not all of it seems to process correctly. It is worse when I am sick, exhausted, room full of noise, lighting when i can’t lipread well (its gotten to the point that sometimes with some people even lipreading does not help me much). All i know is, it is happening, and it is very frustrating for myself and my family, and something has to be done. Will the CI help with this? I don’t honestly know, but I am hopeful that with it stimulating the cochlea and possibly hearing things more accurately it may help. I know that I am running the risk of things being worse after I have the implant. After all, there are no guarantees.
The title of my blog Breaking the Sound Barrier , came from a long ago documentary that was created and produced in my local city, Kingston Ontario, by CKWS. I adopted it because it seems apropos to the life altering decision I have made to get a cochlear implant. I am also in this particular documentary, as was my mother and sister. I have a copy of it still stored away with one of my earlier hearing aids.
I was born in Halifax N.S. in 1971. At 2 pounds 10 ounces I was not expected to live. I was not a premie, but was underweight due to IUGR. Little did the doctors know that I was a fighter..for two months later, I was released from the NICU and went home with my parents. By all accounts, I was a healthy, active and happy baby (who sometimes cried a lot and drove my mother to distraction). The day before my first birthday, my sister was born.
Fast forward two more years, and we are living in Kingston Ontario. Until then, my parents were told by my doctors that I would be mentally challenged and not to expect much from me. It was my little sister that showed that I had an entirely different issue: deafness. I was not talking as she was, nor was I responding to sounds the way she was. Then, my parents knew they had to get my hearing tested. By the time I was 3, I had been diagnosed with a profound hearing loss, 90 percent loss in both ears. I would require speech therapy and hearing aids.
Six months later I had my first set of hearing aids, which were worn on a harness that fitted on my chest.. I looked like I had two square breasts, with wires coming from them going to my ears. These were the first of many different harnesses my mother made, and I still have my custom leather harness that was made for me by a friend of the family. It was the last harness I wore, as when I turned 9 I received my first BTE (behind the ear) hearing aids. I was elated that day. No more looking like a prematurely developed girl.. (yes at age 9 I had some understanding of that!)..
School: I, like any other child, started in pre-school and from there went to Kindergarten in a public school that had a program for the deaf and HOH children in the city. It was the only one in the province at the time that had this program. The program’s goal was to mainstream us, if possible, and worked with each of us on our speech, and language and math development. The irony of this is, that my audiologist, of whom I have been a patient of for 37 years, initially recommended I attend a school for the deaf that was an hour away. My parents chose not to send me there after visiting it, feeling that it was not for me. Little did they know how right they were when they made that decision. After just a few short weeks at my school, I was fully mainstreamed. I only went to the program for 30 minutes a day for speech development and spent the rest of the day in my classroom with my peers. I was the first student to do so, in the year 1976. (The Special Education Act in Ontario by the Ministry of Education, had only recently come into effect, so this program was still in its early stages.) As a result of the success of this program, the local paper wrote many articles about it, and its students, including myself. I used to have clippings of about 10 articles in which I was featured in. One of my high school friends’ mother, worked for the local tv station and had done a series of interviews with my family, and my audiologist.. small world when I landed in one of his classes many years later, and he told me about this, and told me his mother still remembered me and to say “hello”.
Over the years, I did well in school, catching up to my peers quickly and even bypassing many in reading, spelling, writing and math (at least until high school lol). I went to several different schools in several cities over the years, and I was always the first deaf student, and broke many barriers for others to follow. I was an A student and did very well in most of my subjects.
My father said that one principal balked at having me in their school, ironically this was in my local city which pioneered the program for deaf children. However, the principal was told in no uncertain terms by my father, that he had NO choice but to enrol me, and to accommodate me. The Special Education Act dictated that the schools had to find ways to mainstream children with special needs. My father told me that the principal thought I would not do well, that I would be difficult, that I would require far too much help and attention from my teacher. I was in grade five at this time, and my speech therapy was provided by the school board, and I only missed class for 30 minutes a week. The teacher that I was given to, turned out to be one of my many teachers who rose to the challenge, and became ultimately a favourite of mine. I excelled under her lead.
It seems after all, that my parents knew me well enough at age 4 to choose to send me through the public system. Somehow, they knew I had the tenacity, determination and desire to succeed. I knew I was not like the other students. I did encounter some teasing over the years, and hurt feelings just like any other child does. I had good friends however, many of whom I still am in touch with, and still remember fondly.
By age fifteen (grade 10), I was allowed to quit speech therapy, with the promise that if my speech declined, I would go back to it. In grade 11, we had moved back to what we now consider our hometown, the city where my education career started, and finished.
I was asked to try out for cheerleading by a classmate, and quickly proved to excel in this sport. Friendships developed very quickly that year, and I later learned that I was well liked through the school, and in fact was a favourite of my classmates and teachers. I was also the second deaf student the high school had, the first deaf cheerleader, and the first deaf graduate of the school. Ironically, my ex-husband was their first deaf student, who I had met long ago in Kindergarten at the first school I went to. Small world.. which proved smaller my second year there, in grade 12, as another student from that first school, also came to the high school. He had gone on to the deaf school that my parents chose not to enrol me at, and years later arrived and graduated from my high school. He also was living right across the road from us as well.
I went on to university, and completed two degrees, one in History, and one in Education. I supply taught for a few years after spending several years attempting to get into the field. It turned out my ex and I were not living in the right area, for as soon as we bought a house, and moved to another city, I was hired by two school boards in the first month of living there. I loved teaching, but I found it challenging and tiring with the needs of communication weighing on me. It is hard work trying to comprehend the speech of students in different grades and ages (especially the younger ones) all day long, as well as making sure they could understand my speech, which was according to many stellar.
Over the years I had compliments on my speech, most could not tell I was deaf, and in fact many just assumed I was either British or French. Needless to say that was the biggest compliment I had ever received in my life.
I no longer teach, for a couple of reasons, one I began having children, and my ex-husband moved us out of the country which meant I would not return to my teaching until we moved back. When we moved back, it was back to our hometown, which meant it would be astronomically difficult to attain a teaching position. I ended up working full time as an office assistant in a local store, which I still hold. I discovered that I loved it there, that while I loved teaching, I was far too stressed and exhausted by it. Not only from the work load, but from the constant, daily stress of communicating. The needs of my job allowed me to focus on data and information, and from time to time, communicating with customers and reps. It was a good balance, one that suited me.
I am proud of what I have achieved, my education, my speech, my ability for many years to use the phone consistently well, to handle conversations, lectures, watch movies and tv, raising my children and my independence. Proud of the jobs I have held since moving back home, discovering new skills, and growing as a result. Out of all of my achievements, I am most proud of my independence and self reliance. I felt more like a hearing person, than a deaf person. The deaf community in my hometown consider me their poster child for success.
Somehow, in the last 6 years things have started changing.. my speech comprehension started declining, despite the audiologist saying that my hearing was still the same. So what’s changed since then? The hearing aids had served me well all these years.
With my increasing frustration over my communication skills beginning to decline, my speech comprehension on the phone, in face to face conversations, even with my family.. My audiologist recommended I start testing for the cochlear implant, believing that if I qualified it would lead to greater and better things for me in the hearing world.
I didn’t qualify the first time.. I was too good. I tested at 79 percent accuracy for speech comprehension without lipreading 6 years ago. I left with mixed feelings, proud of that, and yet sad that I still had an issue to contend with. I didn’t know if I truly wanted a cochlear implant. My parents were disappointed that I didn’t qualify.. despite the fact that it meant I was self sufficient enough with the hearing aids. Then two years later I tested again, and once again, I still did not qualify, despite the drop from 79 percent to 72 percent accuracy in speech comprehension. I was struggling more with the phone, with day to day conversations, and in understanding my children.
Forward to April 2010.. At that point my speech comprehension was a daily struggle and frustration. I was becoming increasingly unhappy with the changes in my self sufficiency. I was no longer married, and was totally reliant on myself. I was, during the marriage, the hearing person in the relationship, but we still had his mother and my family for help when we needed it. It was beginning to affect my job, my ability to handle the phone when my boss was not there, but thankfully we were using email more and more for communication with our reps, and our store managers. Phone calls with my children were filled with frustrations for both of us. I had hearing aids that while they were good hearing aids, had had to be replaced due to defects in them.. that had added to the problems I was having, as for a year and half I was wearing one hearing aid at a time for one reason or another.
In April 2010, I tested when I had brand new hearing aids, that SHOULD have aided me as the others had in the past. This time, I qualified for the cochlear implant program, but only marginally. In essence, I FAILED the speech comprehension test. I had dropped another five percent in speech comprehension accuracy to 67 percent . That was a 12 percent drop in a 6 year time frame. The audiologist, the same one that had tested me the previous two times, told me she could see my focus, my concentration, that I was trying so hard to do well. She said that if it had not been for the level of concentration and focus, my results would have been lower. She spoke with the surgeon, the head of the cochlear implant program, and recommended that I be implanted.
I was devastated, but the choice was now mine whether to proceed with the cochlear implant. In my mind, that although my hearing itself was still the same, I knew that my speech comprehension would continue to decline. There are no guarantees that the implant will help me more than the hearing aids had. At the very least I would experience the same in time.. the potential, however was there for it to do better. Particularly given my tenacity and determination and my habit of always following up when I had a problem with my hearing aids.
Despite the fact that I would lose any residual hearing in the implanted ear, and that there is the likelihood it will not do anything more for me than the hearing aids did, and in fact, might even be worse. I could wait, as long as I wanted, now that I qualified for the program. My thoughts were that if there was such a drastic change in speech comprehension in such a short time frame, what would it be like if I waited five more years? The hearing aids were no longer helping me as they had in the past. I knew that the brain works in such a way that if the neural pathways aren’t used, that it becomes harder to reactivate them the less you use them. I was struggling so much already. I knew that it was better to do it now, than wait until I was 60, when I would have to work harder at regaining what I had lost in speech comprehension and even in any hearing I lost due to aging. I had two children to think about at the time, who I could not talk to on the phone. Who needed and wanted to be able to communicate with me and were as frustrated as I was. These were the reasons that lead me to making the life altering decision of getting a cochlear implant now, instead of waiting.
I did the balance/dizzy test (god that was awful), the CAT scans and MRI, that summer and was asked if I would do the surgery that October 2010. I was torn.. was I ready? I was trying to get pregnant at the time, and thought I might perhaps be already. I decided to wait, at least a year, to see if I could get pregnant. I got pregnant two months later, in November 2010. I gave birth to my last child, my son, July 2011. He is now 8 months old, and I am now ready to proceed with the cochlear implant. Right now, I wonder how much I am missing, as he babbles, and cries, and whether I am responding well to his needs. I believe I am.. I believe I am hearing his babbles accurately, but I want to be able to hear his first words clearly and KNOW what they are, instead of asking his father, “did he say…..?”, or asking my oldest daughter to repeat her brother’s words.