Bloomberg - CI hearing implant journey

[Ivana Marinac]

I have found yesterday this text - I do not want to fear anybody but I wonder what well rehabilitated members of our forum think about this particular experience because I do not find it hostile just ... one individual experience:

 

http://www.bloombergview.com/articles/2013-02-18/cochlear-implants-are-miraculous-and-maddening

[Mary Beth]

Everyone's journey with their CIs is deeply personal. I believe our mindset greatly influences our satisfaction level. In the beginning, are we thrilled that we caught three words in talk radio or disappointed that we missed all the rest? Are we excited that we heard the dishwasher that everyone else has been telling us is sooo loud or are we frustrated with all the noise?

For me, I am approaching my one year birthday with my previously dead ear for 24 years. I am still in awe that it can hear! I used to joke that its only function was to hold up my glasses. Now my right ear can use the phone, enjoy music....

This journey takes work. It's helpful if you are ready to work and committed to auditory training.

I disagree with the initial 3 month magic window of opportunity after implantation. There are countless stories of people who improved their weaker CI side after their preferred CI went down and had to be reimplanted. Auditory training works. Whenever you choose to do it. Neural pathways form over intense, repeated exposure to stimuli. Train in a way that helps your brain make new pathways.

There are difficult emotional points on our journeys. Those who are lucky have an understanding partner, a caring audiologist and a new network of friends in Hear Peers or on FaceBook.

I hope that author finds more comfort with her CI over time.

[Ivana Marinac]

Thank you Mary Beth for your standpoint. Some parts of the text were strange to me so I asked your opinion.

I have found also odd the statement that if you haven`t rehabilitated yourself in the first three months that your chances weakens.

 

Bloomberg is serious journal so I find this text little bit odd although it is just one perspective.

[Mary Beth]

Bloomberg is a serious journal but if I'm not mistaken, this piece is about a book that is coming out soon. So not research based. It's someone's personal experience with her CI. I reckon if we each wrote our own book about our experience, the texts would vary greatly.

Thanks for sharing.

[Mary Beth]

Ivana,

Scroll down to comments in your link above. This is getting some interesting comments online.

[Kara of Canada]

I was not too happy about the article. First thing I noticed was she didn't do her rehab therapy. That's a red flag for me. For her to write an article like this which makes CI look somewhat negative to the reader really need to think twice before writing something like this. It's not all bad for everyone. It's not all good for everyone either. But it's hard work at which we reap the rewards and a good team of surgeons and audis to do the delicate work. That said we also need this forum. For encouragement and information that we liked would not find anywhere else. So everyone here, keep up the good work!! Erik and Ben thank you for this forum. Also everyone keep telling everyone you know about your journey. We really need to educate the world!!!

[Ivana Marinac]

Bloomberg is a serious journal but if I'm not mistaken, this piece is about a book that is coming out soon. So not research based. It's someone's personal experience with her CI. I reckon if we each wrote our own book about our experience, the texts would vary greatly.

Thanks for sharing.

 

Of course that Bloomberg is serious - I regularly read certain stuff from there.

Yes - I do agree, but if you ask your neighbours about something what they read somewhere or heard - how many of them would go investigate all perspectives?

This is why I am writing this. I didn't know this is an excerpt of the book but my eye did caught the detail that the writer has written for New York Times. I am curious what exactly will she write in her book because she wrote pretty final conclusions at the end of the text - there is no "to be continued" feeling...

[Ivana Marinac]

I was not too happy about the article. First thing I noticed was she didn't do her rehab therapy. That's a red flag for me. For her to write an article like this which makes CI look somewhat negative to the reader really need to think twice before writing something like this. It's not all bad for everyone. It's not all good for everyone either. But it's hard work at which we reap the rewards and a good team of surgeons and audis to do the delicate work. That said we also need this forum. For encouragement and information that we liked would not find anywhere else. So everyone here, keep up the good work!! Erik and Ben thank you for this forum. Also everyone keep telling everyone you know about your journey. We really need to educate the world!!!

 

I agree Kara - but we also need to talk about different text in order to understand why some people do not evolve full potential - this is the path to the knowledge. 

By knowing all the circumstances you can understand presence but also lnow in what way you will go in the future, won't you?

Sherlock Holmes approach.

[Ivana Marinac]

Ivana,

Scroll down to comments in your link above. This is getting some interesting comments online.

 

Of course, it is always good to read comments so you can get a different perspectives.

My intention was just for us, here on the Hearpeers - to discuss a little bit what was written. I like to complicate stuff in order to start a good discussion which people would read and, possibly add their questions or thoughts.

[Kara of Canada]

I love discussions that you all bring to the group. Thanks Ivana.

[Ms_D]

Personally, I cannot relate to this person mix feelings about the implant.  I have already passed the year mark and am still excited and I am still in awe with my ability to hear with my CI ear.  It's an amazing journey.  I am eager to continue to improve with my CI ear.  I have found the CI to be more helpful than the hearing aid - of course, the hearing aid was very helpful, but that dulls with time.  

[Sandy]

I agree with Mary Beth that each person's journey is personal. We each have to decide the road we want to take. For me, this was the best decision I have ever made and each day gets better. It will be interesting to read her book to see where her journey has led her.

[Elbras]

Hi folks,

I had mixed feelings about the article, so I emailed the Author.

She said the Bloomberg article was written 5 years ago before she wrote her 1st book on her CI experience. She mentioned why she did not do her training for three months, as she had lost her job the same time and she had been deaf for 30 years before implantation. She did rehab and training afterwards, and still had some difficulty. Her Audiologist explained that being deaf with no stimulus for 30 years would present some challenges for her. She has written a second book with more positive attitudes toward CI.

Elaine

[Mary Beth]

Elaine,

It's always wise to go straight to the source! Thanks for sharing what you found out.

Mary Beth

[Sandy]

Thanks for sharing Elaine.

[Ivana Marinac]

Hi folks,

I had mixed feelings about the article, so I emailed the Author.

She said the Bloomberg article was written 5 years ago before she wrote her 1st book on her CI experience. She mentioned why she did not do her training for three months, as she had lost her job the same time and she had been deaf for 30 years before implantation. She did rehab and training afterwards, and still had some difficulty. Her Audiologist explained that being deaf with no stimulus for 30 years would present some challenges for her. She has written a second book with more positive attitudes toward CI.

Elaine

 

Thanks for sharing this with us - now we have more rounded story if someone is interested to read it.

[Adam]

Yep, every persons journey is going to be a little different. There are many factors that go into being somewhat successful with the implant.

You have to be totally committed and comfortable with the choice to move forward and wear the processor. Her mention of always trying to hide the implant makes me think she had reservations. Also the comment about being in denial. I am not sure where she got the idea that she would be "cured". That and the fact that she stated her disappointment right when activated makes me think that her expectations were a bit too high.

The rehabs is critical for success, no doubt. I have not read or talked to anybody that stated that the first couple of months were crucial.

For me, it is all about attitude. I cannot control the circumstances I am in, but I can control how I react to them. Cochlear implants just like hearing aids are just that. An aid but not a cure. We have good days and bad. I think she realized that towards the end of her article. I just get the feeling that she wasn't 100% committed from the get go and her expectations were a wee bit too high in the beginning.

[Kara of Canada]

That's right Adam. We have a disability. But we have our devices to create adaptability. That's how I look at it.

[Adam]

We do Kara but as you know, CIs are not "plug and play". It takes hard work, which I can happily say that everybody on this forum understands. Sadly, some want the reward without doing the work. I am not speaking specifically about this writer as I have not read all she has written. I am speaking about the people (not on this forum) that I have dealt with directly that were not willing to do the rehab and were mad at the results.

[Ivana Marinac]

This is a reality - people quit all kind stuffs: from diet to exercise, physical or mental. Just a fact. I was just little bit surprised because of the point of this article - what an editor or writer wished to say... 

It's obvious that lots of people do not understand the simple fact - this is not a cure, this is an aid to adapt easily - just like Kara said.  

Also... lots of people get wrong message at their start of the journey - between lines or even loud and clearly they hear: you will be cured. It's not their fault of course, but like about death people do not want to speak about their weaknesses which they perceive like that or:

"If you understand things are just right they are,

if you don`t understand things are just right they are.

(Zen Koan)"

 

BUT... it is a way of perspective...

There is such a thing as perfection…

and our purpose for livings to find that perfection and show it forth…

Each of us is in truth an unlimited idea of freedom.

Everything that limits us we have to put aside.

(Richard Bach)

[Mary Beth]

I agree that this process takes dedication and work. However, we must remember that some people do put in the work- just like us- but do not reap the same rewards. This is why our audiologists and surgeons could not tell us how we would function with our CIs prior to surgery. Results vary. I just want to be respectful of those who have worked just as hard as me, but have not been as fortunate with results.

[Ivana Marinac]

I agree that this process takes dedication and work. However, we must remember that some people do put in the work- just like us- but do not reap the same rewards. This is why our audiologists and surgeons could not tell us how we would function with our CIs prior to surgery. Results vary. I just want to be respectful of those who have worked just as hard as me, but have not been as fortunate with results.

 

Of course - I referred to the allegations from the text where we read certain mistakes in approach. There is nothing wrong if we do not succeed - it is a matter of commitment. We are not proving anything to the others, we do what we owe to ourselves.  

[Sandy]

What I found after activation was that family and friends were of the opinion that I would instantly hear. One comment made was that she saw on television someone activated and that they had no problem hearing. It took a lot of time and patience on my part educating people.