Breaking the Sound Barrier

Detailing the Road to Better Hearing

Deaf for a Day Challenge

John Barrowman, a British Actor known for his role as the dashing Captain Jack on Dr. Who, went deaf for a day. Here is a link to his blog, and video clip. click here

I love that he did this to raise awareness for the hearing dogs in Britain. He succinctly and accurately describes the effects of a sudden hearing loss. His fatigue, the efforts to communicate, anxiety over his surroundings are all what we experience daily.

I wish more people would try this experiment for a day, or even better, a week. Particularly family and friends who don’t always understand the difficulties I experience daily. Even with the aid of my hearing aid, and cochlear implant processor (which does make things easier), it is still exhausting.

Going deaf for a day is a drop in the bucket of what deaf people live with and experience daily. Let’s create a full bucket of those experiences.

My challenge to my readers:

If you’re a hearing person reading this, I want to challenge you to go deaf for a day, and email me here your experience. I may even add it to my book that I am writing. Write anything and everything that comes to mind about your experience.

Go to a hearing Center, and explain what you plan to do, and have them create a sound blocking mold for you. Go about your life as you normal do and record all your thoughts and experiences for the day. If you’re brave enough, try going for a week. I’d love to see what experiences you have, and will share with my readers your experiences.

Those of you who are deaf, see if your friends and family will participate, so that they may gain an insight into your lives.

Good luck!

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The Cochlea- My Canada Writes Creative Non-Fiction Submission for 2014

After a long six months wait, I learned that my submission didn’t make the longlist. It was my first submission, so I am hardly surprised, but a tad disappointed. Only a handful of people have seen this during the writing process, thanks to them, I put together a story I felt comfortable submitting.

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Seriously Stoked

Yesterday I went to my two year activation follow up. I was feeling some trepidation on the way because I left my six months follow up devastated at the results. My emotions and expectations had been very high, and unrealistic that day. Even though I knew that it might not be what I had hoped, my heart wanted more. I scored low that day. While I understood that it was early yet, and I had much work to do, that we were still tweaking my programming it was still devastating.

So this time I kept my expectations in check, and came home quite pleased, and stoked about one particular test. After my AVT session where we verified how much I’d progressed in my speech discrimination. Despite sporadic use of the processor due to chronic headaches, and an infected tooth (caused me to grind my teeth), I still responded almost perfectly.

I cannot hear f, th and s, sh, ch, c, k only moderately well; but can hear the rest of the speech sounds. These sounds are in the high frequency range, which we are still working on gaining access to, and my brain still needs training on recognizing them. We are still working on gaining better distinction between similar sounds like c and k.

Then it was time to see my audiologist and do the sound test and speech discrimination test. With just the CI, and no hearing aid, I comprehended about 32% of the sentences. This was understandable due to the amount of high frequency speech sounds. When I put my hearing aid in, my speech discrimination jumped drastically, by 36% to 68% accuracy. That’s huge in my book. The same occurred with the word speech discrimination test. I even felt more confident than I had at my six month follow up.

Then she showed me the audiogram of the sound test we had started with. It was not what I had thought I would see. I had expected a mild-moderate range of improvement. Instead: it was normal to mild range, which had me stunned. I never expected, or dreamed that the cochlear implant would yield such a big gain in my hearing. I would have been satisfied with a mild to moderate level.

Below are four images. The first one is the audiogram of my left ear from January of this year. I don’t have one of the right ear before it was implanted, however it was virtually the same, but a tad worse, so we implanted that ear.

The second audiogram is the implanted right ear, and the current level of hearing I have with the cochlear implant. You can see that it is ALMOST an across the board level of hearing, around the 20db range. At 2000 MHz and higher, it drops to about 30db range.

The other two show the speech banana, showing where speech sounds and environment sounds fall on the spectrum, and where the different levels of hearing loss fall on the chart.

Although my hearing with the cochlear implant is almost normal, it does not however mean that I comprehend speech like a hearing person. All it means is that while I may hear those speech sounds, my brain still needs to be trained to recognize them. As previously mentioned, the higher frequency speech sounds are still difficult to hear, and distinguish from each other. However, with lots and lots of practice and training, I might get there.

Having never heard these sounds for forty years, I’d say it’s an amazing result, for only two years since my activation. The future is bright, and full of promise. Future advancements in the processors may one day allow me to achieve better. For now, I will take yesterday’s results, and run with it.

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Diversity Within

Diversity to many of us usually calls up different cultures, skin colour, languages and so on. There is diversity within each community, even a small community of 500 is diverse. So too is there diversity within a Deaf community. Most people think the Deaf community is composed of people that are completely deaf, and only sign. While that was once true, it has changed greatly, and continues to change rapidly. Unfortunately, many within the Deaf community prefer that it remain only signing, and are vehement about their position towards those who don’t meet their criteria.

The Deaf community as I see it contains a large group of adults and children who:
have a variety of levels of hearing loss,
born with the loss or late deafened
may use hearing aids or have a cochlear implant,
may go without a hearing aid or cochlear implant,
may use ASL, SEE or don’t sign
may be oral as I am, or speak when needed

The choices of a deaf or HOH person shouldn’t subject them to audism and bigotry from others in the Deaf community. Yet it does, and the Deaf community is extremely negative towards those that don’t sign, that have cochlear implants, or choose to be oral only.

Over the past couple of weeks there has been much debate over these topics. The majority of the people debating these topics are people who are open minded, educated on the topics, and are respectful towards others. However there are a group of individuals who choose to be negative towards others; they claim they are not judging and yet they are.

These people criticize the use of the cochlear implant, and spread misinformation, myths, and don’t cite reliable sources for their reasoning. They complain about not being accepted by the hearing, by the HOH, by those like me who is oral, and chose to get the cochlear implant. Yet they don’t accept the great diversity that is in their community. Too much focus is put on our choices and the choices made by hearing parents rather than embracing the diversity that comes from those choices.

Those naysayers, and critical, judgemental people have lost sight of the fact that the world has changed. That we have greater access to technology than we once have, that we benefit from. That those of us who are oral and living in the hearing community are representatives of the Deaf community, and are our advocates for bringing change. Change in captioning in movie theatres, on apps like Netflix and Hulu Plus, and in entertainment. They are advocates for educating the hearing on the lives and challenges of the Deaf community. They’ve lost sight of the fact that together as a whole we can bring more changes to accessibility for the Deaf.

There is an oft quoted mantra that applies here:

DIVIDED WE FALL, UNITED WE STAND

By remaining divisive within the Deaf community we will always struggle to gain the accessibility we need. We will continue to struggle to gain the assistance needed in our education, work, and everyday lives. Our children and their parents will continue to be made to choose between signing or speaking by the professionals and the Deaf in the community who should be advocating for both.

Technology is changing, and I see much of it still being optimized for the hearing population and any accessibility for the deaf population will be an afterthought. Captioning has been around for years but it is still lagging in the entertainment and media industries, just looking at YouTube, Hulu Plus, and Cinema Now reveals the lack of thought for the deaf community.

It is law in Canada and the United States that accommodations must be provided in all social services, places of employment, and businesses and yet we are still lagging behind for the deaf, as well as the blind, physically challenged, and mentally challenged individuals in our society.

So why is the Deaf Community allowing themselves to remain divided, and not accept our own diversity?

DIVIDED WE FALL, UNITED WE STAND

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Two Year Activation Anniversary

So the day after my daughter turns thirteen (gasp a teenager), it is my two year activation anniversary. Two years ago today I heard beeps, tones, tinny voices and had faint impressions of words being said. It was a fairly normal activation, and one that is most often everyone’s activation. I was fully prepared for it, and my expectations were low, so I wasn’t disappointed in not having a Rock Star activation. A Rock Star activation is defined as hearing normal sounds and speech, and comprehension of speech.

Activation is when the audiologist turns on the implant with the processor and program your processor to stimulate the cochlea. A good audiologist will program the right amount of volume, balance the electrodes, and sure you aren’t having facial twitching, or discomfort. Mapping sessions are what follows in the weeks, months, years after, to keep you hearing as effectively as possible.

I’ve come a long way since that day, and I am very pleased with the results and I know my decision to implant was the right one. I have been fortunate to become part of an Auditory Verbal Therapy study since last October, which has added more information to my knowledge banks and helped me with understanding my toddler more easily. It’s been worth the journey even with all the ups and downs over the past two years.

I’ve been reading numerous posts in my Facebook groups about people wondering what to expect, and having too high expectations going into their activations. Some come away disappointed and upset, having been unprepared by the audiologist in what to expect. Many of us who have experienced the process already have been busy reassuring, encouraging practice, and cheering the wows that start coming after those initial days.

I want to say to those awaiting activation the following:

– Keep your expectations realistic. You will hear beeps, tones, ringing (tinnitus), faint impressions of words and environmental sounds in the first week.
– As each day and week pass, you will realize what you are hearing, little by little, those little wows pile up.
– Big wows start coming with more mappings, and practice.
– Practice, practice, practice. (Link to apps and sites on the blog)
– Patience is the key word here.

The average is three months before things become recognizable and normal sounding. Everyone’s activation and progress is different but this is the average, and realistic for the majority of people implanted. The propensity of the media to inaccurate represent these activations, and the process it takes to become “hearing” leads to unrealistic expectations and dashed hopes. The media needs to do a better representation of the process it takes for the patient to achieve the full measure of success with their implant.

For infants and toddlers, it is different. While they hear beeps and tones as well, understanding what they are hearing isn’t as quick to come. The reason is because they are starting from ground zero. Their hearing age starts from the date of activation, rather than from birth as most babies are. It’s hard for parents and audiologists to know what is happening inside these little ones’ heads, so it is easy to assume it isn’t working. Many parents aren’t told this and have too high expectations for their children.

The truth is, they have a longer road, as they not only have to identify environmental sounds, and speech sounds, but also learn to turn those into speech, words, and communication. Quite a few parents have been told to choose between signing or speech, or no signing and speech only by audiologists and speech therapists. Some obey and do speech only and regret it, others choose sign, and others choose to do both.

These children need both sign and speech, and should have access to both forms of communication, and both communities. It boggles my mind to learn of parents being told:
— too young to learn sign (never),
— signing delays speech (hogwash, if it helps hearing children, it helps deaf children),
— too hard to learn two languages at once (hogwash, studies prove the best time to learn dual or multiple languages is before age seven)
— signing is too visually distracting so they won’t focus on the word spoken (again, hogwash. Signing gives a visual cue to the word spoken)

This has to stop. Parents need to be encouraged to give every means of communication available to their children, deaf and hearing included. Audiologists, speech therapists need to give true, realistic facts, and all the information parents, and patients need. It’s a difficult decision to implant, and the road after is long and difficult for many. Support needs to be given by everyone in the community, deaf, Deaf, HOH, as well as hearing. Communication and information sharing needs to occur, for everyone to succeed.

My parents and I asked questions over the years, and as I became an adult I advocated for myself, I shared and talked with others, all of which was crucial to my success, both before and after implantation. Without the knowledge I had, my last two years could have been much harder.

So after two years with my “new” hearing, I can honestly say it was the best decision I made for myself.

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Random Post of No Import (except to me)

Thirteen years ago, I entered the hospital to be induced with my first child. Scared and excited, and so ready as I was huge and uncomfortable. My best friend came up to support me in the labour room for communication, as my ex is Deaf. Seventeen hours of labour, and she was deemed to big to fit, so off we went for a Caesarean section.

She was pulled out, red, head full of dark brown hair, and squalling at 3:15 am, May 21, 2001. It was Victoria Day that year, so the lucky girl has a long weekend on or around her birthday. I’ve been a mom since I found out I was pregnant, but that moment made it real.

The time has gone by too fast, and my daughter has blossomed into this beautiful, smart, caring, loving, young woman. She is a terrific big sister to her two brothers (we celebrate the middle child’s next week, and he will be nine) and always helping with the youngest. I am so proud of how she has matured, and she is mature for her age. She is turning out to be exactly what I had hoped, and imagined as I carried her.

I have no trepidation a about her teen years even though I tease her endlessly about it. I’ll be one of the lucky parents to never have to worry about their teen. Knock on wood!

So at 3:15 am, I will send her a text, and wish her a happy birthday. I’ve always woken up at that time, and either kissed her as she slept if she was with me, or sent a text.

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Message to the Media

As a child, I was the subject of many articles in my local paper, the Kingston Whig Standard. I was even part of the Through the Sound Barrier documentary, and local CKWS news segments. This was during the mid to late seventies in Kingston, Ontario. I have lost those articles to flooding, but hope to find them to share on my blog.

That said, I have a huge tremendous peeve to address. The media has a horrible, horrible tendency to inaccurately present facts, to sensationalize achievements when it comes to cochlear implant activations. Case in point: this video of a woman’s activation, which she gave me permission to use. Gift of Hearing.

She posted the link in our Facebook group, and I commented the following:

I hope the media made sure the public knew that this is an atypical activation. My biggest peeve is they make it out to be a cure and that everyone hears automatically, when the reality is, most of us have to work at it and wait for several months or longer to achieve the full access the CI gives.

Her response:

I know. I told him that over and over. Both audiologists told him that. I didn’t see that on the footage that he kept.

Adding: it does say it takes a year to rehab, however it is still a bit inaccurate, because everyone is different, and children in particular start from ground zero and often have a longer process than adults

Far too often the reporters sensationalize these events. It gives parents unrealistic expectations as they implant their young children. It gives other adults the impression that they too will have what is called a “ROCK STAR ACTIVATION”. This is an atypical activation, not the norm, and the ones that have activations like those are extremely lucky.

Mine was not the same, in fact, mine was the norm. All I heard were tinny voices, that were faint impressions of words in my brain, and random sounds. It took three months, which is average, before voices sounded normal and I could differentiate between male or female, or even pick it up thirty feet away. Longer still for my brain to acclimate to all the sounds. In fact it’s still working on building the auditory memory bank. With AVT, my ability to comprehend speech is improving, and with more work, I may not need to rely on lip reading, logic, guesswork to have conversations on the phone, or across a room, or from one room to the next.

My message is this: be accurate, be realistic, and yes celebrate a great achievement like this woman’s activation, but please for heaven’s sake, don’t sensationalize something that is not the norm for the majority of adults who get the cochlear implant, and certainly is not for children implanted. Don’t give unrealistic expectations to these families. It would be more accurate to follow the progress of several people, to show the difference in experience and achievements.

Rant over!

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A Statement

I am still amazed by the amount of bigotry, anger and lack of open-mindedness existing in the Deaf community. I know some of you will not agree or become offended by what I am about to say. That’s life. However in recent weeks I have witnessed in my online Facebook groups a shocking amount of ignorance, misinformation, bigotry, and close-mindedness of the Deaf people posting.

It is 2014 for goodness sakes! We have at our disposal a greater wealth of technology in assistive devices, hearing aids, cochlear implants, phones, tablets and computers than we did even thirty years ago. We have rights. We have supports that we did not previously have. We have choice in how we are educated, choices our parents make based on information gathered or the advice of their child’s audiologist, or on what local schools and programs are available. These are difficult choices any parent makes in raising their child.

Yet, after all this time, the topic of ASL or Cochlear Implant are still hot button topics. Much of the Deaf community are still against the use of the cochlear implant, and still view parents who choose not to use sign, as taking away from the Deaf culture. I mean really? Seriously? I was raised oral, I admit that. However I don’t believe my parents raised me oral because of their bias towards sign language. I am pretty sure they would have used it, had I needed to. I did not, because I apparently hit the ground running once I got my hearing aids and never looked back.

I read a blog post yesterday, Conspiracy Against the Deaf that I couldn’t finish reading. It was so full of rage and venom that I actually blasted the writer for dragging into 2014 a history, that while it is tragic, horrifying and part of Deaf History, no longer is relevant in today’s society. The writer claimed there is no objective journalism (I disagree) and that he was expressing his feelings. I responded that it was a disservice to the Deaf today, because we have overcome that past, that bias and bigotry for the most part and that he was only spreading bigotry towards the hearing community, none of whom are responsible for our tragic past.

He didn’t offer solutions. We as deaf people need to be more visible, more vocal, more active in the community at large. We have to stop hiding within our community and Deaf Culture. It is time to step into the present, and work towards the future. Our children have the greatest access to technology than we had as children. Let’s applaud that. Let’s cheer these children on their successes because they have the greater chance to succeed than many of us did. Don’t fault the parents for choices we may not agree with, they have a hard enough time making those decisions. We need to be available, approachable, and willing to educate, to have the life and accessibility we deserve. Only we can show how helpful sign language is, and how children can succeed having access to both sign language and the spoken language.

The cochlear implant is not a cure for deafness. It’s a tool, to give us and our children a better quality of life by being able to hear and communicate. It gives us access to a sense that is very much needed for survival. One day, they may be able to restore hearing fully to a deaf person. It may be a hundred years from now, but we should cheer these leaps that we have made in that direction, not accuse the hearing community of trying to fix us, cure us of by perceived disease or a disability.

It is time to move forward. Stop the bigotry. Stop the audism even within our deaf community. We blame the hearing for bigotry and audism, but many of us are just as guilty. It is time to step into the present and look forward to the future. The past is the past, learn from it and move on. Offer solutions, push for better accessibility, and become more visible, and educate the world at large. Only then will bigotry and audism cease to exist within our deaf community, and hearing community.

http://brotheryellow.com/2014/05/15/conspiracy-against-deaf/ (if the above link does not work)

An Addendum:
I personally think many of the deaf need to get into the present, and get out of the past and get with the times. The landscape of our community is changing, with previously hearing people joining our ranks through disease, through no fault of their own and need OUR HELP AND EXPERIENCE to adjust. More children than ever are born to hearing parents who need to be welcomed, no matter what decisions parents make on their communication development or use of hearing aids and CI. They’re just as deaf as those born to deaf parents.

We are letting ourselves become more of a minority by staying within our groups, and not welcoming all others with a hearing loss, no matter if they have hearing aids, an implant, use sign, use speech, etc.. I have never felt part of the deaf community, because they didn’t allow any who happened to speak and not sign into it. That’s got to stop. So much whining about the invisibility of our community and people like me aren’t welcomed into it by virtue of the fact I do not sign.

For change to happen, it needs to start within first.

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Should I Be Ashamed?

I’m ashamed that I haven’t worn my processor much since the beginning of April. Nor have I practiced my AVT homework either. I’ve been suffering from chronic headaches and migraines thanks to the weather system, and teeth grinding I’ve been doing. I also had a tooth become infected which caused additional pain and discomfort, unfortunately on the implanted side. Sound aggravates my migraines and headaches, so I was taking care of myself as best as I could. I couldn’t take the hearing aid off because I needed to hear my toddler.

Three weeks ago at my last appointment, I admitted this to my therapist. She chastised me for being hard on myself. We did some work, and ironically, despite lack of practice or use of the processor, I still made improvements. Shocking. I suppose that my brain got some work by using only the hearing aid and I ended up training myself just by listening to my toddler.

So why do I feel ashamed and embarrassed to admit that I have not practiced or worn my processor since? It’s because I’m too hard on myself and have high expectations of myself. I feel guilty for not actively practicing with my iPad apps or with my family on my homework.

I was to see my therapist today, but postponed it due to the pain I have. The antibiotics help, but I am still dealing with the pain. I feel guilty for cancelling because I want these sessions, and I need to keep the AVT progress going. I struggle to allow myself the right to take care of my needs, since so often I cannot with being home with our toddler.

I am approaching my two year activation anniversary, and I expect I will have a check up, and testing to see how far I’ve progressed. I haven’t gone from zero to sixty like I wanted, so I am nervous about how my speech comprehension tests will result compared to a year ago.

So later today, I will be going to a quiet spot in the house and practicing with my iPad apps, and will also try the new Angel Sounds app I downloaded. It’s time to get back to work and push through, as after all my time left in this study is nearing to a close. I have found it has helped immensely, so I hope the goals of the study proves beyond a doubt that adults need AVT just as much as children do.

So I am going to try to stop feeling ashamed, embarrassed and guilty and give myself a break for taking care of my health first.

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Two Year Anniversary of the Surgery

It’s hard to believe that it’s been two years, as it seems longer. It’s been a rollercoaster of emotions, highs and lows, and regaining skills. For over a year I struggled on my own to cope with my wildly changing emotions. It ranged from depression, regret, awe, joy, worry, and occasionally confidence and surety that I’d made the right decision.

There were a lot of frustrations with family and friends not understanding my needs, or that I had a long road ahead. Once I resumed writing last fall, that started to make a difference, and I have learned it has helped others like me as well.

I also wasn’t sure how much progress I was making. My one year post activation booth test was disheartening. Then I had an opportunity to participate in an auditory verbal therapy study. I turned the corner soon after and began making better progress. My toddler was developing his own speech at that time so it became a benefit to us both. I used my developing listening and hearing skills to pick out new words and sounds he was attempting which allowed me to reinforce his efforts. We both still have a ways to go, but I am pleased with our progress so far.

I received my hearing aid back from repairs and once I acclimated to hearing in the left ear again after a year of no sound, I began training that ear as well. While I cannot pick up high frequency speech sounds with the hearing aid as I do with the cochlear implant, I still noticed an improvement.

I was recently asked about my perspective on having the cochlear implant, and the pros and cons to it by a friend’s daughter for a college essay. It’s different for everyone, but the majority of us experience the same roller coaster ride of emotions leading to the surgery and the months after. Keeping one expectations realistic is important, but difficult, since we basically want to go from zero to sixty PRONTO. The biggest con is the time it takes to achieve the goals we set by getting the implant. How much time it takes is dependent on a variety of factors like previous hearing history of that ear, the rehabilitation we do (if at all), the support we have or lack thereof from family, friends and even the professionals we work with during this time. The biggest pro is the gains in sounds, speech comprehension and quality of life.

So although I still have a lot of work ahead of me, I have finally gotten to the point where I know that I made the right decision for myself. So to anyone reading this, wondering whether it’s worth the highs and lows, the trials to get the cochlear implant, my answer is: YES, IT ABSOLUTELY IS WORTH IT.

So here’s to another year, and next month’s two year activation anniversary. Maybe by next April 2015 I will be confidently using the phone as I once did as a teenager.

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