Plugged my head into auditorium sound system. Cool.

Again, I had a large meeting training event on my schedule in an on campus auditorium.  I contacted the event organizer and asked if the space had an assistive listening system.  They contacted AV, who was working the event, and found out that the auditorium had an FM assistive listening system.   Not very often used but there and they could give me some headphones to try it out.

The headset had in-the-ear type earbuds and a sort of stethoscope type piece under your chin with a receiver in it to pick up the audio transmitted via FM.  Anyone could use this system for amplification, it does not require hearing aid or cochlear implant.  Problem:  The design of the headset was not compatible with my implant’s processor, nor with most hearing aids that I’m familiar with.  I would need headphones that go over the ear 😦

But I don’t give up so easy.

The day before the training I visited our AV department in person to confirm the headset  issue and ask about other options.  They were great and willing to work with me on solving the problem.  I mentioned that my processors allow a direct connect with a standard  3.5 mm stereo jack to audio sources, like an ipod.  At the moment, when I was chatting with them, there was another event in that same room.  They offered me the option to test on the spot.  As luck would have it the event was on lunch break.  I ran over there, tested, and voila it worked!

On the day I was attending the training, the AV guys arranged a reserved seat for me with a very long cable and a special connector box that was under my seat.  During the event all audio via microphone was mainlined to my cochlear implant.  It really helped a lot.

While this solution isn’t as flexible as I like, nor is it scalable to more users who might need similar assistance, it worked dammit!  Oh hallelujah!  Finally a benefit that’s really making a difference for me.  Assistive technology may be my new friend.

So now I need to find out what more portable, scalable options I can get my hands on and test.  The AV guys at my workplace have been awesome and I know they will work with me.  We will make MIT’s public spaces accessible to hard-of-hearing.  I’m excited to make this happen!

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Doing good and feeling ready for the next level

I’m coming up on 5 months post activation and doing well.  I’m feeling less fatigued from hearing in general I think.  I still have challenges and work on accepting them as best I can.  It’s very good practice for me to keep trying to focus on what I can do versus what I cannot.   Someday.  Maybe.  I tell you I had better live a long, long time because I am an incredibly slow learner when it comes to “life lessons”.

My biggest challenge lately is background noise.  I’m told this is an incredibly common complaint for both hearing aid and CI users.  I recently attended a nephew’s wedding in a crowded party tent space, with stone floor, and a live band.  I found it very hard to hear other people unless I was on the periphery where it was a little less intense.  Later when I asked family members if they thought it was noisy they said no and I wanted to punch them.  Sorry.  I’m five again.

Not knowing what’s possible, in terms of programming for my processor, I don’t know whether to just deal with it or if there are adjustments that can help.  So far in my CI journey, it’s mainly been a question of time and getting used to things.  I recently found a presentation online intended for audiologists that describes different types of hearing assistance, including cochlear implants, and strategies for patients who get them.  It was interesting to me because I saw that my progress, complaints and challenges are all very textbook.  There really isn’t anything all that special about me ;-p

I’ve been posting questions on the Advanced Bionics user forum which is very responsive and very helpful.  That’s been a real eye opener too.  The support from others who have gone through the CI experience has been a real gift.  I’ve met a lot of very generous and caring people on this journey so far and I hope I can give back myself.

As I get ready for my 6 month visit to the audiologist in September I want to know more about what the heck she’s doing with the mapping process, aka processor programming.  I found a good post from a CI user in the UK, describing mapping and programming for cochlear implant processors: http://funnyoldlife.wordpress.com/2010/05/04/cochlear-implant-mapping/

Wish me luck!

My CI goes to the beach :-)

Portrait shot Barbara wearing Neptune processor on beach

First summer beach vacation with my cochlear implant.  I’m so happy to have the waterproof Neptune processor because I don’t have to worry about protecting my new equipment from the elements.  I even took a quick dip in the ocean with it on!  Although it’s not officially rated for salt water.  However, it continues to function so I don’t think any harm was done.  And I’m loving the off the ear design in hot sticky weather.  Much more comfortable I think.

Aside from the equipment itself, what’s different now?

  • The soft sand makes noise as I walk through it.
  • The sound of the waves is SO much louder than I knew!
  • I can hear the sounds of voices across the Provincetown Bay tidal flats.  I can’t understand what they’re saying but I am reminded that I’m not alone.
  • The beach umbrella flapping in a strong wind is loud.
  • Riding bikes with my sister I can hear what she’s saying, as she rides in front of me.  Sometimes.  This is an improvement.
  • I’m starting to hear differences in bird calls.  My sister points out the distinctive call of the cardinal.  Pretty cool.
  • I hear the sounds of gray seals just off shore at a National Seashore spot in Truro.  They sound funny.
Barb standing in front of Dunes at Truro

Barb in front of the Dunes at Truro

Do I need a psychologist or an audiologist?

The biggest challenge for me is psychological in terms of adjusting to the implant and truly accepting my hearing loss.  I apologize if I sound repetitive when I say that part of me was hoping that I would no longer be hard of hearing once I had my implant.  No one ever told me this was a possible or achievable outcome.  I know it’s not.  But still that is my deepest, secret, not-based-in-reality wish.

I’m so tired of the effort and adjustments I need to make for each and every communication.  I have to think so much about hearing.  It’s hard for me to believe it will be easier and maybe it already is some degree easier but it’s subtle and I feel cheated.  Yes, yes, this is a spoiled bratty attitude and I know I need to be positive to do as well as I can hearing-wise.  It’s hard.

I read on support forums and blogs about the “miracles” and “wow moments”.  I’m struggling with feelings of guilt.  Why don’t I share these sentiments?  Part of it, I think, is that quite a few recipients were at a point where communication was impossible.  With an implant they rejoin the hearing world.  And this is truly a miracle.  For me, I was already part of the hearing world.  Admittedly, I was somewhat limping along and my struggles were slowly but surely getting worse.  The only choice I had for better hearing, or even stable hearing, was the cochlear implant.  Another factor may be that  some folks who are implant evangelists are speaking several years post activation. They’re at peak performance with the implant.  I’m still a beginner at 2 months out.

The biggest change I notice is the awareness of environmental sounds.  This is good.  The combination of the technology and the human brain is truly incredible.  How is it possible that this device does what it does?

My goal now is to lessen and eliminate difficulties understanding speech.  When I have difficulty hearing someone and others do not it depresses me.  What can I or should I be able to look forward to?  Am I hearing some percentage better in everyday communication situations?  How can I assess this?  Questions for an audiologist?

When I was tested a month ago my scores had tripled since activation.  The audiologist said I was doing better than average.  Do I feel three times better about my communication abilities?  It’s hard to measure in a simple way.  I’m not sure.