Going Bilateral: Step 2

I headed back to the audiologist this morning to verify that I am a bilateral CI candidate.

• Audiogram:  unimplanted ear, unaided (right ear’s residual hearing)
• Audiogram:  unimplanted ear, aided
• Audiogram:  implanted ear, with CI
• Audiogram:  implanted ear, without CI (left ear’s residual hearing)
• Sentence test:   implanted ear with CI
• Sentence test:  unimplanted ear without CI

Nothing new regarding my audiograms.  I have never had any signs of progressive hearing loss.  Aside from the typical 5dB difference that sometimes occur just because a person has a good/bad day, difference in the equipment used, different sound booths, and different people conducting the test….my audiogram in the unimplanted ear is almost exactly the same as it was 26 years ago when it was confirmed I was deaf.

I do have a little bit of residual hearing left in the implanted ear.  Most people lose all of their residual hearing in the implanted ear.  I have such a small amount left that it doesn’t really make a difference in terms of being able to ever wear a hearing aid if that implant failed *knocks on wood*

Sentence Test

We knew I would get a big fat 0% on those but we had to do them anyways.  With the hearing aid (they gave me a powerful hearing aid to use for the test), I could tell I was only picking up pieces of sounds here and there.  With the CI I could tell I was picking up all the sounds, the number of syllables, and number of words.  However, I couldn’t tell you a single word that was being said.  With the CI I always feel like it’s on the tip of my tongue and I should know what I’m hearing….but I don’t.  Of course these tests were done without lipreading or knowing the context.

Audiogram with hearing aid

Results were that I could only hear sounds up to 55 dB.  Most of the sounds I picked up were between 55 and 65 dB.  That puts me right at the bottom and out of the speech banana (dB and frequency levels at which all the speech sounds occur at).

Audiogram with CI

Results were that I could hear sounds between 20-30 dB.  This puts me right at the top and within the speech banana.

Next Step

Surgery date has been set for July 22nd.

Washington D.C. and New York City

Mat, Sarah, Dennis, Morgan, and I traveled to D.C. and NYC where we spent 9 days touring the cities.  Dennis and Sarah also attended the HLAA convention while we were there.  It was great to catch up with friends!  Here are a few pictures.

Special Olympics

I was given the opportunity to volunteer with two of the area Special Olympics gymnastics teams this spring.  Both teams had gymnasts who were deaf.

It was interesting to see how much hearing loss can exclude a person.  Oftentimes gymnasts who were deaf were unsure as of what they were supposed to do because the coaches weren’t fluent in sign language.  I actually ended up interpreting for them at times (a deaf person interpreting for another deaf person, ironic, eh?).  You could see they weren’t confident because they didn’t always know what was going on.  It’s amazing the difference that communication makes.

Anyways, it was such a good experience.  I was disappointed that the local gymnastics teams had such a short season (2-3 months).  Both gymnastics teams did an amazing job for only being able to practice a couple of months.  Practices were only an hour a week which isn’t very long considering 4 routines must be learned, conditioning, and warm-up must all occur in that short period of time.

I’m kind of disappointed these gymnasts don’t have the opportunity to train year around.  So many of them have the potential to go far.

Scuba Diving

Dennis and I are working towards our PADI scuba diving certifications.

We completed our online course (took about 15-20 hours) over the weekend and passed the exam.  Dennis aced the exam while I missed a few questions even though I knew the answers.  I made the mistake of taking the exam at 4:30 am half-asleep.  On the bright side at least I know I know my stuff when I’m not fully alert and most of the information comes in handy when you’re in an emergency situation or when you’re not alert underwater.

Am so glad I did the online course and not the classroom course.  The narration was all transcribed!

Next step towards getting our certification will probably be the most challenging step for me.  5 confined pool dives where we have to master several skills.  Quite a few of those skills have to do with knowing what to do when you lose air underwater.

*Gulps* Will need to remind myself to reassure myself and not panic!!! Yeah, am a bit nervous and scared even though I’m excited about getting to explore a new world!

 

Flip-Flops

When I first got my CI a couple of years ago I was surprised at how noisy flip-flops were.

The first few times I wore flip-flops while shopping I kept turning around trying to figure out what the sound was.  I would walk down an aisle and hear this weird sound then I would stop to try to figure out the source of the sound only to discover the sound stopped.  Imagine me walking down an aisle and stopping a few times to try to concentrate on where the sound was coming from only to realize the sound had stopped….yeah…. it took a while before I made the connection that the sound was coming from me walking.

A couple of months ago it finally became warm enough to wear flip-flops outside so I excitedly put a pair of flip-flops on before heading to a store.  I had forgotten how loud those things were and wasn’t used to summer sounds just yet (it takes me about a week to get used to seasonal sounds–raindrops, walking in snow, boots, coats rustling,  etc).

Anyways, I got out of the car and stepped into gum.  I couldn’t get all the gum off of my right flip-flop. I walked into the store and I kept hearing something odd.

I kept thinking it was my flip-flops but something didn’t quite add up right.

Once I realized what it was I got so tickled that I laughed out loud.  Yes, I stood in the middle of Target….by myself….and laughed out loud.  I got a couple of stares….whoops.

What I was hearing was my left flip-flop making the usual flip-flop sound and my right flip-flop was sticking to the floor and making an odd sound whenever it came unstuck as I was walking.

I’m still not sure why I found that hilarious but I did.

Unaidable

Since my residual hearing thresholds have always been above 90 db (with a nosedive off the audiogram) I’ve always been considered “unaidable.”  However, I wore hearing aids for a long time.

How can a person who is “unaidable” benefit from hearing aids?  Apparently it’s possible and I can testify to that!  🙂

The way my audiologist has explained it is that they can pound sound into my ears but it’s to a degree where it creates more disortation than benefit and it also creates vibrations.  I never knew the difference because that was the only thing I ever knew in terms of hearing.

After I got my first implant a couple of years ago I decided to see if I had any residual hearing in that ear by trying my hearing aid out (oftentimes, surgery destroys all of your residual hearing).  Turns out I have veryyyy little residual hearing left in the implanted ear but it’s so small that it’s not even a sure thing if I actually have any or not.

Imagine my surprise when I realized that even though I wasn’t really hearing anything with the hearing aid that I could still pick up general environmental sounds and the general beats of music.  Turns out I was only feeling those sounds via the vibration through my earmolds (hearing aids processes sounds and then delivers them through the earmold to your ear).  To this day I could probably put my hearing aid on in the implanted ear and still be able to tell you if the phone was ringing or if someone was knocking on the door…but it would only be through vibrations and not hearing per sec.

So yeah, apparently for 20+ years…..when I thought I was hearing through hearing aids…I was mostly just “feeling” the sounds.  Somehow I learned to identify some sounds through vibrations only.  I could pick up some sounds without vibrations and through amplifications of my hearing aids.  However, the majority of what I was picking up was mostly just through vibrations.

It took me a while to realize what hearing was like because the majority of my experience had been “hearing through feeling vibrations.”

No wonder I was caught so off guard when my CI was activated.  Hopefully the second time around will be a bit less……..traumatic. 😉

Attempt at Having Cute Toenails and Fingernails #1 = Fail

So a friend posted some awesome pictures of swirly designs on her fingernails.  She also posted a tutorial which I decided to try out.

I ended up making several attempts and failed each time even though I got some cute designs.  I either immersed my toes and fingers into the water too much which resulted in messy clean up which lead to accidentally removing some of the awesome design on my nails.  Or I ended up with oodles of bubbles that ruined the design.

In the end I eventually decided to stick with plain boring solid pink nail polish on my toenails and nothing on my fingernails.

I really want to figure this out so maybe next time I’ll have better pictures!  🙂  Maybe I’ll try it with a different brand of nail polish or figure out a way to get the Vaseline to work better.

The general idea is to put drops of various colors of nail polish in a bowl of water, swirl the design, and put your fingers/toes in the water.  The Vaseline is supposed to prevent the nail polish from sticking to the skin around your nails.  This did NOT work for me at all.  It was a mess to clean up….trust me 😉

Or maybe I just need to have more patience…..

Going Bilateral Step #1

A couple of days ago I had an appointment with my audiologist and surgeon to discuss going bilateral.

I had very few questions compared to the first time around.  My audiologist actually asked a couple of weeks ago if any of my questions would require research before the appointment .  🙂  I had done a lot of extensive research, reviewed case studies and had tons of questions when I got my first CI.  I have stayed somewhat up-to-date on CI information since I was first implanted which helped make this appointment go a lot quicker.

My surgeon basically discussed with me that they do not have any patients with my hearing background and communication mode who have chosen to go bilateral.  Since I get very minimal benefit from my CI compared with the majority of CI-users, he said he was not going to push me to go bilateral but he was not going to prevent me from pursuing it.  None of their bilateral patients have regarded going bilateral.

Both my audiologist and surgeon feel comfortable with my decision to go bilateral because they have seen my commitment with my current CI.  Oftentimes people with my hearing background choose not to continue wearing their CI after a while.

We all are in agreement that getting a second CI will NOT help me understand speech without lipreading and that I will get the same benefits as I have with my current CI which is mostly environmental awareness.  What a second CI will help with will be the ability to pick sounds out better in loud places.  It will help with one of the things I find frustrating which is not being able to hear people speak to me when they’re on my unimplanted side.  This oftentimes results in me not looking up in time to start lipreading.

I will likely get the newer implant which is basically the same as my current one but a bit thinner.  He did say there’s a possibility that a new type of electrode/implant may come out next year.  He doesn’t feel like there is anything coming out that I should wait for.  I agree since I don’t pick up a lot of stuff that newer implants and programs are designed for anyways (quality of voice, accents, and speech).

It was a big change for me going from hearing out of both ears with hearing aids to hearing out of just one ear with the CI.  I HATED hearing out of only one ear with hearing aids so much that when one hearing aid didn’t work…I wouldn’t wear the other (basically I preferred not hearing at all over hearing out of just one ear).  As silly as it may sound, I do miss hearing out of both ears.  I have tried the bimodal approach with several different hearing aids and settings and it just doesn’t do it for me.

I tried adapting to hearing out of one year for 2 and half years.  The funny thing is right after I got my CI I remember thinking to myself there was NO way I would ever go bilateral.  I was just so overstimulated.  That thinking went away and I started considering getting a second CI 2 years ago.  I kept putting it off because it involves surgery and I was hoping to find something else that would work for me.  If I’m going to do it then now is the time.

Going Bilateral Step #2 will result on Wednesday when I go back in again to have testings to prove that I am still a candidate for a CI.  Then hopefully I will get the surgery scheduled.

I Overlipread You

People overhear other people, right?

Well, sometimes I happen to catch what someone says via lipreading just like I would if I could overhear them without really paying attention.

Most of the time I literally turn a deaf ear to them because I simply don’t want to deal with it.  I have caught so many people talking trash about me because I’m deaf or because I’m signing.

Every once in a while I can’t let it slide.

I was visiting New York City and was taking the subway from Grand Central to Times Square with a couple of other deaf travel buddies.

A big group of high school girls who were all dressed up and were obviously tourists boarded the subway.  They were also getting on other passenger’s nerves with all their chattering and gossiping.

I happened to stand in front of one girl (literally just inches away from her).

Everyone has talked about people behind their back.  Fine, whatever….  However, I do not like when people try to take advantage of me not being able to hear and think it’s okay to talk about me when I’m right in front of them….not cool.

It didn’t help that I had just walked 15 miles that day around the city on a few hours of sleep.

I happened to catch this particular high school girl yell to someone at the other end.  If she had been whispering to the person next to her, fine…whatever…that’s a different story even thought it’s still not cool.  That was a big hint that there was a lot of buzz going on around us about the fact we were signing and they were *gasp*….like….omg, do you see the DEAF people, totally, omg!

High school girl #1:  “They’re signing!!!!”  I’m pretty sure every single person heard her.

Me:  *Trying to bite my tongue while this person just a few inches away from me is talking about me*

High school girl #1:  “THEY’RE LOOKING AT ME!”  Yeah, she made sure every single person on that subway heard her.

Me:  *Thinking to myself, really?!?*  This is where attempting to breathe and counting to 10 failed….

Me:  “We can lipread you (I was gesturing this)”

High school girl #1:  “Whatttt (it was obvious she understood what I said but was trying to pull the innocent card)”

High school girl #2: ” *^%$#@ (she caught on very quickly)

Me:  “We can lipread you”

High school girl #1:  “Whattttttttttt”

Me:  *groans, steps off the subway*

Thankfully it was a short subway ride!

It’s amazing how people think they can get away with talking about deaf people in front of them because they think we won’t hear them.  Honestly,we let it slide most of the time because sometimes it’s simply not worth the time and energy.  Then again, is it our responsibility to educate them?

The Dark Room: Everything is an adventure when you can’t hear

I just got back from spending 9 days in NYC and DC (more on that later).

After walking miles and miles and miles a few of us decided to check out some art at one of the Smithsonian museums.  In this museum they had an exhibit where you had to follow verbal instructions and what seemed like a maze of rails to see a big red screen in a pitch-black room (don’t ask, I still haven’t figured this art piece out).

I had wandered away from the group of friends I was with (mistake #1) and let my curiosity get the best of me (mistake #2 ).

I walked into the pitch-black room and attempted to follow the rail to find my way to the actual exhibit.  I’m pretty sure I backed out of that room at least twice.  Sometimes I get a bit freaked out when I can’t see or hear.  After chickening out twice I was frustrated at myself that I let this silly little thing freak me out and decided to face my fear (mistake #3).

Remember it’s pitch-black…I’m deaf and I can’t see when it’s pitch-black.  I was more creeped out than when I’m at haunted houses.  I kept hearing this random voice but assumed it was a recording talking about the exhibition or something so I ignored it (mistake #4).

I pulled out my phone and decided to use it as a flashlight (mistake #5).

I was proud of myself for finally building up the gut to go into this doggone scary dark room and for coming up with a way to see where I was going.

I hadn’t taken more than a few steps when I had a flashlight pointed directly at me.  It took every inch of willpower to not scream out of fear.  Turns out it was a security guard…our conversation went something like this:

Guard shining her light at me:  “No lights!”

Me, still recovering from the shock of being scared out of my wits*:  “What?”

Guard: “NO lights!”

Me trying to shine my phone light into her face so I could lipread her:  “Whattt?”

Guard:  “NO LIGHTS!”

Me in my confusion decided to shine my phone light even more directly into her face:  “Hmm, what?”

Guard:  “NOOOO LIGHTTSSS!!!”

Me:  “Oh! *put away my phone and hoped I wouldn’t get kicked out of the museum*”

I found out later from someone else that the voice I had heard earlier was actually the guard talking and telling me where to walk (e.g., 2 steps left).  I’m sure she thought I was a crazy woman.

I have no idea how I managed to follow her into the room without seeing where I was going or understanding what she was saying and without walking into a wall.  We made it into the room with the actual artwork and apparently I was supposed to sit on a bench.  Of course I had no clue what she was saying or if she was even talking to me hence her pulling out her mini flashlight again.

I eventually figured out I was supposed to sit and stare at a red screen in a pitch-black room.  At this point I was completely freaked out and so sure that if I breathed wrong I would be banned from all the Smithsonian Museums for life.  I may even have ruined this artwork since the guard had to pull her flashlight out more than once because I couldn’t follow her directions….

After I sat down the guard bought in 2 more people.  Apparently I was supposed to scoot down the bench so these 2 people could sit by each other but again, I was so unsure of what I was supposed to do so I just sat there.  One woman sat to the left of me and the second woman sat to the right of me.

Remember it’s pitch-black in this room.  These women thought they were sitting next to each other so they kept leaning over to whisper to me, kept patting my leg, and kept patting my back….thinking I was their friend.

Yeah…let’s just say I didn’t last long in this room.  I took off pretty quickly after that, lol.

Life is never boring when you’re deaf in a hearing world.