Tuesday, July 17, 2012

Just my background...

My name is Stephen Wright, and I am profoundly deaf.  I was pronounced deaf at 18 months old, and was immediately fitted with hearing aids.  However, I am deaf because my Cochlea's (a part of the inner ear; see the link for more information http://en.wikipedia.org/wiki/Cochlea) in both ears are deformed.  Hearing Aids did very little to help my hearing, and by the time I was four, I was at the height of my hearing functionality.  I couldn't hear, therefore couldn't say certain sounds like "shhh", "sss", "thhh", "ffff", etc.  My parents were at a crossroads.  Do they send their son to Ernest C. Drury School for the Deaf, where speech is not an emphasis at all, and the students only sign? Or try to have me function in a hearing world, when my hearing was so limited?

My Mom soon heard of a brand new device, making its debut in the world, called a Cochlear Implant (http://en.wikipedia.org/wiki/Cochlear_implant).  It was brand new at Sick Kids Hospital in Toronto, and the actively practicing doctor there had only performed surgeries on deaf children with fully formed cochlear implants.  My parents took me in to be assessed by Doctor Papsin (http://www.sickkids.ca/AboutSickKids/Directory/People/P/Blake-Papsin.html), who deemed that although he himself had never performed a surgery unique to me, he was going to try.  In September 1997, I was implanted in my left ear.  Due to the uniqueness of my surgery, I had to stay overnight for 2 nights.  The anaesthetic they used caused me to be very sick, and I threw up many times.  A month later, they turned on my implant, and I began to hear things I never could before, such as the rain falling on the roof.

I started using the Nucleus 22 Cochlear Implant (http://beckerexhibits.wustl.edu/did/images2/VC703219_large.jpg) right after my implant was turned on.  I have many memories of this processor, so large and bulky, always in the way of everything.  Soon, a newer Cochlear Implant model was released, the Esprit 3G (http://www.cochlearamericas.com/Products/333.asp).  I loved the idea of a behind-the-ear implant, so we made the switch.  The first night I was home, I went to have a shower, and accidentally left it on!  I was so used to having to take off the bulky old Cochlear Implant, that I forgot about the new one! Thankfully, there was no damage to it, and life went on.

During the summer between Grade 7 and Grade 8, my hearing took a turn for the worse.  I was going to Sick Kids almost every week to get remapped (reprogramming the Cochlear Implant, http://www.hearingpocket.com/mapping.shtml).  Eventually, the doctors concluded that the only thing they could do that might make a difference was to redo the surgery, taking out the old implant, and placing a new one in its place.  In September of Grade 8, Nine years after the original implant was surgically implanted, I had my second surgery.  But to my loss, there is a month of healing before they can turn the Cochlear Implant on, so I was without sound for the month.  I went back to school, and an EA (Educational Assistant) was 'assigned' to me to take my notes.  However, they often acted like a babysitter, and would follow me everywhere, which was quite annoying when I was out at recess with my friends.  I continued to retain the notetaker after the implant was turned back on, and cycled through many EA's before my graduation.

In High School, I also had another EA for a notetaker, but she was formally a secretary, and already had some of the skills needed.  She was awesome, acting as both a notetaker and a friend.  She was also assigned to me all through high school, so she changed her notetaking methods depending on what stage I was at.

During my Grade 9 year, my hearing started to go back up, but it never reached the level that it used to be.  Soon, I was told that there was a possibility of implanting my right ear, which I was told my whole life was un-implantable due to the deformity of the Cochlea.  We decided that it would be worth trying, and my surgery was scheduled for right after my exams.  When I had the cochlear implant turned on for the first time, my right side of my face started twitching like crazy! Since I had never "officially" heard out of the right ear, my brain had to develop a nerve passage for sound from my cochlea to the brain.  It just so happened that it decided to pass through my facial nerve, causing it to twitch whenever the sound is programmed too high.  So, even to this day, I can't hear to the full potential that I could due to the twitching.

With the re-implant on my left ear, and the surgery on my right, I now use the Nucleus Freedom (http://www.cochlear.com/sea/freedom-overview), which has helped to boost my hearing.  I currently cannot function with just my right cochlear implant, and if I use just my left cochlear implant, everything sounds "black and white".

When it came time for me to find a university to attend, I considered many factors:
-is the disability services office well functioning, and do they have an important presence in the university?
-class size - didn't want too big, otherwise I would be lost, and not get the help from the professors that I need, didn't want too small that the quality of education is not good.
-availability of courses - I am planning to (hopefully) attend veterinary college when I finish my BSc. Biology, so I needed to make sure that the university had all the prerequisites that I needed

So, in grade 12, I narrowed my choices down to Laurier, Laurentian, Brock, Trent, and Nipissing, based on a visit to the Ontario University Fair, and general research.  I visited Nipissing first, and was just blown away by how friendly they were.  They actually made you feel like you were wanted at that university.  A very difficult bar for other universities to overcome.  Laurentian was next, and it was just awful.  People were not friendly, disability office not welcoming or helpful, no sense of direction, etc. I immediately wrote that off my list.  I decided to visit Laurier after getting early acceptance, and it was quite nice.  However, I felt that Nipissing was the better university, so after applying to Nipissing, Laurier, and Brock (which I never visited), I decided on Nipissing.

During the summers between Grade 11 and Grade 12, and grade 12 and university, I was the head cook at an awesome camp in Parry Sound, Camp Koinonia (http://campkoinonia.ca/).  It was full of challenges, especially with being deaf, it was difficult to communicate at times, however, I managed to jump over every hurdle that came my way, and successfully survived both summers with great food!

My First year of university was an amazing experience; fun, stressful, tiring, and busy all at the same time!  I went a week early to an orientation program (Student Transition Program - STP) for students with disabilities.  It allowed me to move in a week early, and settle in before the rush of all the people moving into residence.  I made lots of new friends there, and although some parts were boring, it was overall a very enjoyable experience! Free food, fun outings and new friends always make for a positive experience!  When residence move in came around, I got to meet my new roommates!  We made out for a good year, never had any issues, so although we were all very unlikely roommates, we had a good time and got along.  Frosh week was another story.  Although it terrified me, I would still do it again because of all the people I met and the connections I made.  Very crude language and activities, drunk parties all the time, etc, that was Frosh.  I managed to get by.

Then just like that, classes started.  I had 2 profs who were very difficult to understand.  One, my physics prof, was so difficult to understand, that I ended up dropping the class.  The other, my calculus prof, was also very, very difficult to understand, couldn't even converse with him face-to-face, however, I stuck through with the class, and barely passed.

I used an FM system in my classes, and instructed all the professors and TA's on how to wear it, and what the purpose of it was.  I rarely had problems with using it in my classes, most of my professors were very understanding, and helped wherever they could.
I also had the services of a notetaker in my lectures and labs, they were fellow students who typed/wrote the notes, then emailed them to me after class.  Some were really good, others not so much.
From my first year, I learned that I really have to advocate for myself, and tell my notetakers what I need.  A lot of them wrote down what was on the lecture slides, or on the blackboard, but due to confidentiality reasons, they didn't know at first what my specific needs were, so I had to email each one and tell them that I needed notes based on what was said in lectures, not what was written.

June of 2011, I decided to apply for a Hearing Ear Guide Dog from the Lions Foundation.  I had an in-home assessment in August, then found out in October that I was eligible for a dog, then in November, found out that they had a dog available for me.  I had my class in January, and was given Brooke, a cross between a standard and miniature poodle.


My class consisted of: (left to right) Myself and Brooke, Trainer Tracy, Linda and Standard Poodle Quantum, Trainer Rhonda, Deb and Standard/miniature Poodle Bart, Amanda and Golden Retriever/Black lab Tilley, Erin and Yellow lab Fiona.


Originally, there was supposed to be another lady in our class, but due to personal reasons, she had to leave.  The dog she would have had, Betsy, and Bart are Brooke's sister and brother.


In order to get Brooke, I had to take 2 weeks off from university.  I don't ever recommend anyone doing that, I was so backlogged with work, that I don't think I ever fully caught up.  I had 5 midterms to write when I got back, and 4 extra labs on top of my already busy schedule. All that within one week, then I had Reading Week to calm down a bit, and bond with Brooke.  That's when she got to meet Chester, my family's dog.  They get along very well!


Then it was back into the turmoil that is known to be university life.  My fellow residence family got to know and love Brooke, especially her playtimes at night in the common lounge.  It wasn't uncommon to have many people want to play with Brooke!  She is a very high energy dog, which was very helpful for my busy life, travelling between classes and residence, etc.  She is always on duty, except when she has her crate time, which is her downtime, and playtime, where she can just be a dog and play with toys and other people.  She alerts me to 7 different sounds:
-Doorbell
-Door Knocking
-Telephone
-Smoke Alarm
-Wake up Alarm
-Kitchen Timer
-Name Calling
I have to practice these sounds every day to keep them fresh in her memory, but as of right now, not practising phone (rings too often at my parents house, don't want to be alerted constantly) or timer, I just bought a new one, so I need to start practicing again.

Soon enough, exams came along and I managed to pass everything!!  I went home, and had a 3 week break before I starting work at the Cookstown Greens, an organic farm close to my house.  I do whatever is needed, whether it's harvesting lettuces and veggies in the fields, or processing (washing, cutting, etc) the produce, or packaging for markets, stores or restaurants.

Throughout my first year of university, I was very involved in many things.  I was a regular attendee for the NCCF, which is the Christian group at the university.  I was a floor rep for my residence, so each week I had to go around to the suites on my floor and encourage the occupants to attend upcoming residence events.  Bi-weekly, there was a general council meeting for all the floor reps, building reps, different committees, etc.  I really got to know people in my residence this way, and made many good friends!

I also volunteered as a Tour Guide for the Fall Open House, and had a blast doing that!  I really stepped out of my comfort zone this year, made many new friends, and made my university life so much more bearable.  I encourage everyone to do that, and see where it takes them!


3 comments:

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  2. Stephen, thank you so much for starting this blog. I have wanted to ask you questions. You have answered almost all my questions & then some. I recently watched something on Netflix on the Cochlear Implant. It showed the reactions of the deaf community on the Cochlear Implant. It was an eye opener. Again thank you for sharing about your life. :o)
    Love your cousin Lisa

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  3. Haha wow! We have so much in common! My name is Macy, and I'm a freshman at the University of Georgia.

    My friend Kevin has been profoundly deaf since birth. He doesn't have an implant, but only because he wants to do missions and share the gospel with deaf groups in other countries, and he feels like it would make it harder to connect with them. In a little more than one semester he's taught me enough ASL for me to be fluent in basic conversational ASL.

    I LOVE working with dogs, and I've considered going into some type of animal training, but right now I'm working on my undergrad in horticulture. The farm you worked at sounds right up my alley! (I'm working on a certificate in organics and local food production. I love this stuff!)

    There's a HUGE seeing eye dog training program on campus, and tons of students have dogs in training that go with them to class, but I don't know of any hearing ear dog training programs in Georgia. :( I would love to train a hearing ear dog, and possibly train it to recognize signs. (I've heard of dogs that know ASL!)

    Your story was a really interesting read.
    Thanks for posting it!

    (Also, Brooke is SO PRETTY! Give her a hug for me!)

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