Monday, March 29, 2010

If You Could Hear What I hear!

I was sure a lion was loose in my neighborhood. While walking the dog the other morning, I heard a roar that made me jump and nervously look around for an unlikely escaped jungle beast.
There are no Lions in my town, and the zoo is 3 towns away. The “roar” I heard was a car horn.
I am deaf, yet I hear sound. I am in this unusual liminal space. I exist in this space as a result of the amazing technology of a cochlear implant.
A cochlear implant or CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf.
I am a “late deafened adult” by definition. I lost my hearing very suddenly, and tragically after 49 years of near perfect hearing. A major infection that saw me go from a healthy half marathon running male, to being on life support two days after a 15K run; then in a coma for 10 days.
The end result was “waking up” deaf.
It was in my recovery, and the 9 months of deafness that I researched and discovered the world of cochlear implants.
There are approximately 200,000 people worldwide that have received cochlear implants. The majority is in developed countries due to the high cost of the device, surgery and post-implantation therapy, or “mappings” as the audiologists refer to this as.
So after 9 months in my “cone of silence” or utter and profound deafness, I was “activated”, or turned on, as the magnet that sticks to the implanted device inside my skull, was “stuck” in place. It was then that I heard sound for the first time in 9 months.
Sound glorious sound!
Wonderful yes, but sound is just sound. You see this “device” or mini computer inside my head, takes the sound that is picked up through my external mic, and changes the analog sound it receives, to digital. So when some one says “Good morning David”, my mini on-board computer, changes that analog sound into a string of zeros and ones or digital code It then sends that code down an implanted wire to where there now resides 16 microscopic sized, surgically implanted electrodes. These electrodes then fire this digital code at my auditory nerve.

This of course happens so quickly that I probably receive the information at the same time it takes a “hearing” person to have the sound fired from the cochlea hairs to the auditory nerve. My new hearing method of course is all “man made”.
Not an “aid” but a hearing replacement if you will.

The surgery is complicated to be sure. They drill a hole in your skull, cut a huge incision down to the cochlea area; then through an incision behind the ear, the surgeon drills a hole into the mastoid bone. Once all the electronics are implanted, they staple you back up.
A month latter is the big “activation” day, when the anticipation is over the moon after not hearing a pin drop or an engine roar in my deafness. Once implanted, and then activated is when the real challenges begin.
The challenge is in learning what I like to call “digital sounds”, the new language that is fired at my auditory nerves once I put my magnet on.

Birds sound like an electrical buzz; phones don’t “ring” they “brang”. Car horns sound like lions to me; my dog “bracks” instead of barks; words all sound different to me than my past hearing life.
When I was “activated” 18 months ago, I had to figure out how words “sound” in my new world. I bought talking books so I could read what the word is as I heard it in my digital new language.
“Hop on Pop”, and “Is your Momma a Lama” were my first talking books, and I felt like a pre-schooler learning language for the first time.
In fact I was.
I have been learning a new language, and every day is a new adventure, a struggle most days as new voices force the brain to work harder.
I still read lips and look for clues as I struggle for comprehension of sound. New voices are like foreign languages, that need time to ramp up comprehension with.

So many people assume it is a hearing aid that amplifies sound. Not at all, it changes analog sound to digital. I hear the world different than I did when I was part of the “hearing world”
Music is simplified, and lost mostly, as my 16 implanted electrodes replaced the 180,000 odd hairs that used to fire sound from my cochlea to my auditory nerve. So I get a very simple version or facsimile of what it used to sound like.

Music is what I miss the most from my old world.
I can “hear” the sound or noise, and if I know the song from past hearing days, my brain magically backfills a lot of it, but it is not the same.
I still get life’s everyday concerto, and I am grateful for the technology that restored sound into my life, but when my son strums his guitar to a wonderful new set of chords he just learned, I smile and say “fantastic Dan”, but in fact I dearly miss the sounds he used to fill the room with.
So I still search for a box that I fit in. It is if I need a label to give people like me.
I am “deaf” once my magnet is removed at night when I sleep or step into the shower, but I do “hear” when I wake up and strap it back on and hear the sounds being fired at my brain.
I am in that liminal space of “not deaf” because I have sound, but am “deaf” because I do not hear a thing without this processor strapped on.”
So where do I fit now that I am bionic?
Perhaps I am CI-Borg.

Oh, if you could only hear what I hear.



Sunday, March 21, 2010


So I am on a bit of tirade these days. Getting pissed off at the lack of compassion and understanding for us Deaf/deaf/hearing impaired/late deafened ...whatever pigeon hole we decide to deposit us in.

I get little response on email when I launch into my canned approach of "why do you not have the ability for us hearing challenged to express our complaint ...etc" The world is built for hearing and we sadly have an invisible handicap. As much as I dread that word, I have to face up to the fact that I am challenged and I use "coping" strategies to get through the day. I am different than when I was on top of my game. I was in hearing world, master of David's universe and carried on like there was no end to the sound of life's concerto.

Well as you know, it ended like like a piano getting dropped out of the proverbial window and landed on my auditory nerves.

Now I live in new place that requires new living strategies to get the message.
I changed, but the world did not.
If you want to complain, one has to pretty much dial a 800 number in business hours of course and state your beef. Phones are a challenge for me, and if they recipient's phone is a VOIP phone (usually in some South Asian locale) I struggle.
So I ask if they can provide an email for me to send my issue.
Nine times out of ten, there are no way of sending an email to get issue resolved.

I was on a long flight recently with Air Canada from Toronto to Las Vegas. The 4 1/2 hours is killer, but it is especially long if one cannot use the many features of the in seat entertainment device to watch shows/movies/documentaries etc.
Do deaf/Deaf not fly?

So try and express ones disbelief at the lack of sincerity in offering closed caption for the 35 million hearing challenged in North America
We are not a small number, yet we get treated like "who cares about this group"
If I was in a wheel chair, I might get attention if the airline did nothing to help me get into my seat, or off the plane.
But because I "seem" normal, and I do hear sound through my cochlear implant, there is a prevailing attitude of "but he hears, so why is he bitching"

I hear sound, and up front and personal I can read lips and get the idea of the conversation.
Television, loud speakers, public address, radios etc etc etc, are a different story.

Closed caption is easy to do, even on a tiny airplane screen.

It seems that whatever is easy to do, is easy not to do.

Sad is it not?


Saturday, March 20, 2010

Why is the world designed for the hearing? I spent last night, and good knows countless others in the past 2 1/2 years, trying to understand why closed captioning sucks. Why it is hit and miss. Why

Thursday, March 18, 2010

Just Breathe!

I wrote this almost one year ago to the day, and posted it the first of April in 2009. This week I had many of "those" days that we all have.
My 83 problems are still 83, always will be, but I was hitting the proverbial wall with "self" issues.
I went back and read this post from one year ago, and decided to re post it because I can.You don't have to read it, but it felt good for me to read it and post it.

Since I posted this a year ago, I have discovered new love in my life with Mary, and am excited about our future.
I still need to remind myself to "Just breathe David" every now and then. Today was one of those.
Just Breathe: April 2009:
There is no "normal" for me. Acceptance of that statement/fact is huge for me, and it puts me in a new space that requires constant review and challenges. I struggle to develop a better mental toughness most days, that is required to bring me out of a place and space where I often drift to in my hearing and balanced challenged world.

In the past eighteen months I have lost much: Hearing, balance, a beloved family pet, and my spouse of 19 years. But I have gained much in that time. Managing my expectations of a new life, is the challenge and the new reality of my this new space that I occupy in the universe.

I recently read a quote by Michael J. Fox, the Canadian actor who lives daily with the quirks and jerks of Parkinson's disease.
"I may be different from other people, but someone told me that the growth of happiness is in direct proportion to your acceptance, and in inverse proportion to our expectation"

This was an epiphany of sorts to be sure. I read it, and re read it until it struck me as why there are days that I get mired or stuck in the "why can't I just be normal".
I have what I have, and my cochlear challenged world is what it is.

I will never get hearing back as it existed pre-1997. So once I grip that fact, I can move forward to deal with life as it exists now. Which more often than not is hearing at a 80% level of comprehension in quiet situations, filling in the rest with good guesses; and hearing at a sub 50% level in noisy environments, and playing a huge, but oft-times hilarious guessing game.
"Are they not bastards? " I heard from a friend last night with my processor and mic on the opposite side of the speaker.
"Huh? No, no, they are good people" I responded, "not bastards"
"No, no, Baptists, not bastards" they corrected.

I can and do laugh at the daily frustrations of what I "get", but what I "miss" is the source of frustrations. Phones are still a nightmare, for me and for the callers I suspect. Some calls that should be around a minute or two in length are five minutes in qualifying the caller.
"I'm sorry who are you asking for"
"Who are you again"?
"Are you with a company"?
"I'm sorry I am hearing challenged, can you tell me the subject of your call"?
"One more time, is it David or Dan you are looking for?"
"Oh hi Mom, sorry"

Confidence at times slips out of my persona like warm air through a open door. I go through the "this sucks, and I am alone now to deal with it" daily. Yet there are times, where I give thanks to this technology and marvel at the implants and what they provide in sound for this deaf as box of cereal boy.

Michael J. Fox hit a spot in his challenges and said "This sucks, this is what it is and this sucks, and then you move on from there"
While I am in that spot or space, I still ask myself if the universe decided to play a cosmic joke, or a God of my understanding decided that life was too easy, and needed to put me through a cosmic test, and took away some powerful things, and people in my life, to see how I deal with life without the love and understanding of some people, and the necessities of normal hearing and balance.

If I accept this as my new spot here, and accept that even that is ever changing, then I can start to deal with life from a better vantage point. I have what I have. End of story. Move forward now.

Yoga and meditation keeps me grounded and provides a "jumping off" point for the day. Deep and slow double breaths remind me that I have life. The slow process of air entering my lungs and slowly filling into the belly, gives me hope and is a reminder that 18 months ago I fought survival in a coma on life support. Written off and family gathered around, I somehow was given a chance at a comeback. But hearing would be the cost of this battle.

In my silence I changed of course, and saw the world through vision and touch.
Eyes became my ears, and a new vision of life emerged.
A gentler kinder vision as I needed compassion and understanding to survive in the dog eat dog environment, so I best learn how to give compassion and understanding if I was to receive it.

So the metamorphosis of David began in a hospital bed, but continues daily.
I lower my expectations of what I can and cannot do now in life, and I learn acceptance of my new life without important things and people in my life. So much I shared with people that no longer grace my world, go unshared. So be it. It changes not the fact that they exist with or without what or who I have or do not have at this point in my life.

Michael J. Fox has a small square painting hanging on his office wall. Just black text on a white background that immortalizes an expression Fox, a former heavy drinker, used as he was trying to quit and accept Parkinson's disease.
It reads: "fuck it and breathe."

This morning as a beautiful sun rose, and I stood in full Tree Pose attempting ujjayi breaths, I drifted to that spot that dogs me. The confidence escaping me as I dreaded the Monday morning dealings with the phone at work and the frustration that comes with it.

Life became calm and clear when I removed any and all expectations and stopped reacting. As radical and unfamiliar as this was, it calmed me, and my attention shifted inwards.
I have what I have.
I am what I am.

Now fuck it and just breathe David.

Tuesday, March 16, 2010

Las Vegas In New Light

Another cochlear implant first for this boy: I went to a business conference in Las Vegas!
I have been many times on business, and towards the end of trips as a hearing person, quite frankly I was tired of Vegas. The allure and shine seemed to have gone out of it, and Vegas started to get to me. My last trip was 2005.I lost my hearing in 2007.

Fast forward 5 years to "Magnet boy" on his voyage back to the shiny city that stays up all night and pumps oxygen to ensure this is indeed the case.

I saw new buildings (they build bigger and shinier every year), the old and one time favorites (I loved the Belagio and Paris) and all of the noise and traffic through a cochlear implant.

I had a bit of an Epiphany of sorts this trip. I saw so much excess, so much waste, so much decadence. Funny how deafness caused this paradigm shift. A city that at one time I looked up and stared in awe and wonder was now a city that made me react with dismay and dismissal.

Some people look at chair, and don't see a chair. They see see some wood which could be teak or mahogany, which quite possible comes from Malaysia, and then they wonder if people got kicked out of their homes where these trees once grew by the corporations who came and stripped the land of it's natural growth.

Some people look at an Ikea store and fail to see a shiny coloured store filled with bobbles, knick knacks and brick-a-brack. What they perhaps see a big corporation that strips the rain forests to get material, and then adds brominated flame retardants and PVC chemicals to the at one time natural materials and contaminate us in our homes.The score is always Ikea 1, Rain Forest 0.

So this trip I saw Vegas as this big behemoth of a rich mans playground. I saw more Hummers (H3's of course) then any other vehicles. I stared in awe at the noise of people in restaurants dining on more seafood than I am sure there exists off the coast of Newfoundland, then picking at it whilst drinking copious amounts of expensive wines. I saw power grids jumping off the map as lights buzzed, flashed, beckoned and blinked. I saw money being tossed on tables like leaf lettuce at an all you can eat buffet.
An oh yes, I saw buffets that in a one hour sitting would go through enough food to feed an African nation for years!

I watched at one of our business dinners as a group of eight men spent $2500 on the event.
Drinks flowed and laughter ensued as more exotic cocktails were ordered.
Appetizers arrived and Stone crabs were eaten like crackers by children.I saw the Stone crab population in Mexico tremor in fear.
More drinks flowed and wine was poured by waiters who licked their proverbial chops imagining the tip that this inebriated group of business people would drop with their Gold and Platinum cards.
I cringed as $200 and $300 bottles of wines were brought to tables and poured like water from a tap.

Entrees arrived and by this point most of these folks had long forgotten how to speak or use utensils, but the laughter ensued, as did the wines and drinks with three olives adorning them.

At the end of this eating exhibition the "service" staff arrives to clear the tables. The white jacketed waiters were busy processing the house of cards and calculating their tips while the service staff arrived .
These Mexican and South American staff dressed in their service smocks, ventured out of "somewhere" to take plates away and clean up the "crime scene".

All I could read with my eyes was look of awe as they took away each plate. Many still had 90% of a "Bone in" Rib Eye or Porterhouse half cow. There was more meat left to be scraped in 8 plates than I myself had seen in years! The pieces of Beef were the size of the small turkey that graces our family table at holiday to feed many. The size, in my opinion, still did not justify the $75 price considering the "side" dishes were extra!

I was wide eyed as I saw most of the ordered dinner being scrapped off into bins of composte.
Not mine! NO sir, I ate every bean and pea on my plate and thanked God for it.

What struck me the most was the wonder of what this group of service staff must of thought. Were they thinking about the waste of these 8 and the fact it would feed their families for a month?
I was.

Did they consider the gas consumed by the limos, Hummers and Cadilacs that would ferry this group to hotels be the amount of gas that they would use in a year?
I did.

Did it go through their minds that these business people would sleep in rooms costing for one night what it would cost them to perhaps build a home and live for a year?
The thought was on my mind.

Or did they just give thanks for the opportunity of being employed and go home to their families and kiss them goodnight.

It will be hard to go back to Vegas. I saw waste, excess, greed. I saw fossil fuels being burned like the earth had unlimited supply. I watched lights that never go out, saw screens always on. I saw money being tossed like it fell from trees.

I went home after 5 days and thanked God for what I have and kissed my family.



Tuesday, March 2, 2010

Love Of ASL

Last night was week 5 in our American Sign Language course (ASL). It is week 15 if I count the 10 weeks we took back in the fall, then signed up again for a second go in the "Introduction to ASL" course at the Durham Deaf Centre.
It is as tough as any course I have taken, and I do have a few years of college, University, and assorted other endeavors that I have taken on in my academic and "general interest" courses. But I gotta tell ya I have nothing but respect for those who are fluent in ASL!

French, one of this countries official languages was always a bit of a struggle for me, and through out high school I passed by the skin of my teeth. I gave a respectable shot again in my thirties in a College on Saturdays, and seemed to enjoy it more. Fifteen years after the course I am sadly about as bilingual as I was in high school.
I can order a hot dog and get a beer in Montreal, but it pretty much ends there. At least I wont go hungry or thirsty.

ASL is an endeavor of love for me for many reasons.
I do adore the "language" and culture that IS ASL.
There are those,( and count me as one) who love listening to French being spoken. To those of us who love listening to it it matters not if we are lost in translation. It just sounds so beautiful.

Ditto ASL. I love to watch two people having a most animated conversation. There is a sense of awe and about ASL as one watches fingers flying, fists tapping, wrists bending, elbows twisting. But the joy is in the face; watch the deaf community "speak" and you will see what I mean.

In my brief nine months of total and profound deafness, I wandered to the Deaf center to get information. It was a chilly February day as I remember, and I stood in awe and admiration as I watched two older gents on the rickety porch of the Deaf center. By my guessing, one was telling the other a funny story, or perhaps even a joke. I stood mesmerized as hands flew, eyes widened, fists pounded and palms slapped. Laugh? Oh my good God, these two were peeing their pants in American sign language if there was indeed such a thing.
I never forgot that scene.
Never will.

Without the emotional telltale aspect of ASL, the recipient gets confused. This is what I love about ASL. The emotions. Life is emotion. Life is full of them.

Yet in the hearing world, we hide our emotions for the most part. It's as if it's not right for people to see us cry or something like that.We dare not show the world how we feel for they might sense us as weak and pray on us. So we put head down, don't look up or smile. When we have to we put on our game or clown face to take on the world, but most days we just give a little nod to those who pass us by on our journey through the world. But for God's sake don't show emotions!

Ah but in ASL it is life on life's terms. Cries, laughs, smiles, frowns, stomp feet, slap chest, pound fists. Get excited and show it. Live for life.
Life at the speed of visual glorious sight!
If your happy and you know sign it with a smile!
Smiles and frowns; excited and bored looks; they all are part and parcel of the wonderful art and science of ASL.

I use it more and more, and that drives me to learn more and more. I am deaf, but have sound in my life when my magnet is stuck to my melon. If I go for shower, I am deaf as a bar of Irish Spring sop on a rope, and when I step out of shower it seems someone wants an answer on something.
When I go to sleep my processor is off and I hear nothing. No alarms (yes I have slept in), no smoke alarms should they go off (this scares me) and I wake up deaf until I "strap on" the magnet.
It seems that Mary always has a question about something as soon as I am toweling down after my complete silence in my deafness shower, and she tries her best to squeak out a simple ASL sign that is related to her question of the moment.
"You want Lunch" is one that she has worked on, and I get it as soon as she starts. Eating signs in ASL are easy as eating pie, and I never want to miss a meal!

I hope to carry on and get a diploma of some sort in ASL. I love it to be sure, but it is a dream of mine to use it working with the Deaf/deaf one day. Another reason for my diligence in learning ASL is the fear that my Cochlear will go down for good one day. I have "lost" the use of 3 electrodes which leaves me with just 12 I think. I guess they can always go back in and re-implant the tiny little things, but what IF????

I was going to be bilateral, and was implanted on my right side in September 2008. Activation day produced no sound, so they went back in and did the whole nasty surgery again.
Activation day gave no sound.
The thought is that the auditory nerves on my right side are dead as door nail. My fear is that one day my left side might go as well.
I may be paranoid here, but the cochlear implant has restored me a life that is as close to the real concerto that I had in my hearing days. Nine months in a cone of silence was spooky. I like my CI and want to keep it.

But I also want the back up of knowing ASL. Love to learn it and love to use it as a novice student, but I know it is indispensable when my magnet is off.

My boy Dan signs I love you every night before bed.

My favorite sign indeed.