To be, or not to be

26 06 2010

To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub;
For in that sleep of Deaf what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there’s the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor’s wrong, the proud man’s contumely,
The pangs of despised love, the law’s delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after Deaf,
The undiscover’d country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.–Soft you now!

Dissatisfied with the torments of living life in a hearing world and fearing complete deafness, each person discovers deafness for themselves, as deafness has historically been a one-way ticket to a living death. But this is changing.

A video was posted on YouTube of a baby’s cochlear implant being switched on, and his  reaction to hearing for the first time.

Some watchers have posted comments which are ignorant of the real facts. There are a lot of negative comments from the deaf community about cochlear implants. This is down to ignorance of how a cochlear implant works and what it can and cannot do. It’s important to find the right information on the internet, as there is so much misinformation out there. Sign language interpreters tell me all they ever hear are negative comments from the deaf community, so they are shocked when they come across someone who loves their cochlear implant. Originally, I didn’t want a cochlear implant, because I thought the technology wasn’t good enough. I have been proved wrong, and I’m very glad. In my research, I discovered how far cochlear implants have come along in the last 20 years. They are not perfect, but a cochlear implant is a hell of a lot better than the other options currently available – stone deafness and sign language …. or hearing aids / social stigma / struggling / stress / exhaustion / anger / depression etc etc.

I grew up in a social vacuum as I couldn’t hear anyone else speak and really struggled with a one-to-one conversation, it was so tiring and I had to guess so much of what was said. My parents wanted me to get a good education with communication support and I got that, but they didn’t consider the social side of being deaf. I became an expert in the Deaf Nod. As my hearing got worse, I became more exhausted and loved meeting friends who could sign, as this was a much easier way to communicate. But I became more cut off from the hearing world. I needed communication support at work, in my social life, in anything I did. Often, there were things I wanted to do or events I wanted to attend – but I couldn’t, because there was no interpreter.

I believe in total communication for deaf people, but often we aren’t given the opportunity to learn both sign language and lipreading. My family didn’t believe in learning sign language so I missed out on my deaf identity and culture. That cultural group will never accept me as ‘Deaf’ because I don’t sign fluently. I’m deaf but I’m not really Deaf. I will never be a hearing person but I am usually treated as one.  I didn’t really fit in anywhere. I was sooooo sick of making do. I was sick of not totally understanding sign language. I was sick of not totally understanding speech. I was sick of being deaf. I was sick of being me. In the end I had to do something so I could be myself again. It was really up to me to empower myself, to change the direction of my life. I was slipping into a completely silent world and I wanted more than this.  Much more!

And boy, did I get it. With bells on.

I’m still learning to hear, I’m still a baby in hearing terms, however I was convinced, just THREE DAYS after switch-on, that I had done the right thing, for I could hear more than I had ever been able to. And there is more hearing yet to come. Two months on from switch-on, music sounded fabulous, and I wanted a second implant. Just three months after switch-on, it feels natural to have all this sound, even if I can’t understand it all. I can’t wait to hear more new sounds and connect to the world more fully. I can’t wait to be me again. Already, I am changing into a different person (and hoping my friends are liking it!).

Last week my surgeon asked me if I was happy with my cochlear implant and I started to cry. I was so happy, grateful, and thankful I don’t have to be the odd one out and live in that damn void any more. So I think people should be more open to the idea of cochlear implants and understand how they can be life changing for people like me.

One friend has been wearing her cochlear implants for 8 years, and here is her reaction to the comments left on the video above.

I love love love my cochlear implants.  They are a blessing and a joy.  I wake up every morning and put my “ears” on.  There is never a day I am not grateful for them.
After 31 years of living in dead silence (no hearing aids) I got my cochlear implant in 2002.  Two weeks after activation I could talk on the phone again.   I am now bilateral and the technology keeps getting better and better.
I am in clinical trials in California, and the next generation cochlear implant upgrades for my cochlear implant company are mind boggling!!   Music is stunning with amazing harmonics and depth.  I had normal hearing at one time, I know what it’s supposed to sound like.
I have been reading some of the replies and shaking my head.   I have lived in silence.  I hated the limitations it put on my life.  Maybe only a person who had hearing in the past knows what they are missing.  I knew what I was missing.   There was a big deep void.
I can sign…not fluently, but I took sign language in college for 2 years.   I know what it’s like to live in a deaf world with deaf friends.  I had less hearing than my “Deaf” friends.

There is nothing wrong with Deaf Culture.  I have a lot of friends who were raised in it.  Some of them now have cochlear implants.  They still sign.  They are doing very well with their cochlear implants, even those implanted in their 40’s and born deaf.   Sign language will always be their first language, but the language of music is universal and they are loving it!

If they had received their cochlear implants as children, like the baby in this video, their cochlear implant would have given them the chance to develop language on par with their hearing peers.  I have a friend who elected to implant his son at age 2.  The boy is now 16 and speaks 3 languages fluently.   He has normal speech.   He is still slightly hearing impaired with his cochlear implant, but very very slightly.

I really believe all the “flack” about cochlear implants is mostly due to misinformation and lack of knowledge about what a cochlear implant can really do, why it’s important to have it done early for language development, and what a cochlear implant can and can’t do.
My household includes another cochlear implant user who was born with a profound hearing loss.  He grew up doing all the things that kids with hearing loss grew up with before cochlear implants, those big body hearing aids, all the speech therapy and everything.   He wishes he had been able to have a cochlear implant when he was a kid.  He missed out on a lot.
There is no brain surgery in getting a cochlear implant.  It’s EAR surgery.  Yes, you can swim and wash your hair.  Wearing a cochlear implant is no different than wearing a hearing aid.  But it works better than any hearing aid you have ever worn.
Should children continue to sign with a cochlear implant …sure, why not?  There is nothing wrong with that.  I think it’s a good idea.  Once you take off the BTE’s the child is back into a silent world.   There are many ways to raise a hearing impaired child.  It’s not “my way or the highway”!   It’s a joint effort between the parents and the schools.
A cochlear implant is a tool.  It’s not a magic wand that gives hearing.  The parents that elect for their child to have a cochlear implant have a world of hard work in front of them.   There is a lot of rehabbing to do.   It’s a big responsibility.   It’s not for sissies.
Why is it that deaf children whose parents elect not to let them have a cochlear implant, let them have hearing aids?   Why do you want a child to have a hearing aid?   So they can hear of course!
A cochlear implant is for a person that hearing aids don’t work for any longer or at all.  It’s another way to have access to hearing.   It’s the only way for a lot of people.  It was the only way for me.
If a child or adult can still benefit from hearing aids, they won’t qualify for a cochlear implant.  It’s that simple.  Only specially qualified audiologists and surgeons can evaluate a person.  There are specific tests that need to be done. The hearing aid dispenser across town is not the person to talk to.  Too many people are being sold expensive hearing aids that no longer help them.
If a blind man had the choice of having a white cane and being blind or having some surgery that would help him see, what do you think he should do?   Even if the restored vision was not 100%, maybe it was 80%, I think just about everyone would agree it was a good thing!
Being able to hear is a good thing too!  It’s not evil or unnatural.  It’s a choice we have today.
I am typing this listening to Luther Vandross.   It sounds amazing.   I spent 31 years in silence…there is nobody in this solar system that can tell me a cochlear implant is less than a miracle.

I agree, the cochlear implant is a miracle. I still use my sign language when I need to. I marvel at being able to hear the beautiful birds sing to me every day, the clocks tick the time away, the soft rain, the thunder of the sea, people talking in the room next door, people walking past, being able to understand some speech. Luther Vandross sounds amazing to me too. After 40 years of profound deafness, my new ear is truly a blessing. I am so glad to have a second chance at life and for the baby in the video to have HIS chance of a rich life – before he’s even started. Lucky boy!





Jumping the banana

8 04 2010

Having been assessed as deaf enough for a cochlear implant, and passing the associated tests, I was wondering how much of an improvement in hearing the implant has given me.  Lots of new high frequency sounds have been popping up whilst low frequency sounds have only just started coming back. It has been exactly two weeks since my cochlear implant has been activated and my world has certainly changed in that short time.

I went for another mapping session to increase the volume and tweak the settings. I can hear music fairly well, rock and piano music sound scratchy with the singer sounding as if he has laryngitis. Not a good sound. However, I discovered that opera sounds good and there is plenty of that on YouTube. I am able to follow a melody and detect when there are words, but not understand them. Japanese music also sounds passable at the moment. I spent a long time on iTunes trying out different styles of music to discover what was pleasant to listen to, as I believe in the power of music to help achieve great things. I have purchased Ravel’s Bolero, Grooploop – Piano (Japanese Animation: Studio Ghibli Soundtrack), John Kaizan Neptune & Také Daké : Asian Roots.

Remember my activation video, two weeks ago, when I couldn’t hear the bells? I can hear those bells now, no problem! I can hear the blackbirds in the trees outside my house. I am now hearing the trains and traffic that have been missing for the past two weeks, as my brain focused on the new high frequency sounds. The tinnitus has largely disappeared in my bionic ear but is still present in my unaided ear (mostly mad musical performances).

Today, I had a hearing test, and I’m jumping bananas. Speech bananas, that is. Whoop!

A speech banana is the shape on the audiogram of all the sounds of speech or phonemes of all the world’s languages. I have never been able to hear most of the speech sounds within the banana, even with hearing aids, so I relied on lipreading and became very good at this.

My new audiogram had my jaw hitting the floor in shock. For once, I was speechless.

***

Blue circles : my left ear as it was up until two weeks ago.
Green circles : bilateral hearing with hearing aids (Note: bilateral scores higher than unilateral)
Red circles : left ear with cochlear implant.
NR : No Response

I have yet to be tested wearing a cochlear implant plus hearing aid together, which will increase my speech comprehension scores.

CUNY test (lipreading with sound) > Nov 2009 : 91%

CUNY test (lipreading with sound) > Apr 2010 : 85%

BKB test (listening only) > Nov 2009 : 24%

BKB test (listening only) > Apr 2010 : 18%

As everyone still sounds like Donald Duck, I was not expecting to do very well in my speech perception tests. With daily practice at listening, these figures will improve. I also have yet to receive a lot more increase in sound stimulation, I’m about half way to my target in this respect. So …. *shrugs*

So why am I showing good results in the hearing test, yet a poor performance in speech perception? And how do these results translate to the real world? A hearing test is always carried out in a soundproof room. A hearing test is performed using pure tones, but speech is made up of complex sounds. Add background sounds in the real world, and speech perception becomes even more difficult. Add the cocktail party effect, and it’s not easy to manage in noisy environments with a hearing loss, as you then lose the ability to discern speech in noise. Such measurements however do offer audiologists a way of measuring progress. I now have a baseline to start from (BKB 18%, CUNY 85%) and can monitor my progress against my new figures. Later on, I also expect to be tested in noise. In the real world, Advanced Bionic’s new ClearVoice software is going to help me with the cocktail party effect, and I expect to get this next month.

Donald Duck aside, it is going to take some time for my brain to decode the new stimulation, especially in the high frequencies where I had no sensation before.  An analogy would be (re)learning the roman alphabet, only to have written French instead of English on the page. According to my audiologist, the best strategy to manage this is to practice daily listening to an audio book and follow the unabridged text at the same time. I have collated several links for such rehabilitation work on my cochlear implant rehabilitation page. My audie says, the more work I do, the more new pathways my brain will create, and the better my brain will become at deciphering the strange new sounds. For someone who was born deaf, like me, this process can take up to two years. I need to remember three key things – patience, persistence and practice. It really has helped to have a mentor throughout the whole process to ask questions of, to give you encouragement at every stage of your cochlear implant journey. You can find a UK mentor here and a US mentor here.

My world is opening up and all the colour is flooding in – at last!

(I still can’t get over that darn audiogram!)





Get your YouTube videos captioned

26 09 2009

Speakuplibrarian got there before I did 🙂

I spotted this cool site Captvids.com which captions YouTube videos at
Speakuplibrarian’s blog. She has written about this site and posted a funny captioned video.