Week #4

Wow, on the 23rd it will have been a month since my CI was activated. Time flies!

It’s been a CrAzY trip so far.

I’m still not sure which program setting I prefer and will have to talk about that with the audiologist Tuesday.

The worst part of the CI right now is just putting it on in the mornings. I used to hate putting my hearing aids on in the morning which is why I always waited a bit to put it on. I’m not a morning person to start with anyways and I don’t like being bombarded with all these sounds the first thing. I usually wait until I’m fully awake before I put it on which takes at least an hour, lol. I just HATE the first 30 seconds after putting it on…I dread it.

It usually stays on all day once I get around to putting it on. I’m at a point where I don’t always like having it on all the time but I also don’t like NOT having it on.

I no longer consider it a torture device although there are times here and there where it could fall under that category. But those times are becoming more and more spread out. 😉

The annoying high frequency sound is no longer constant which makes me very happy. It also doesn’t sound as high frequencishy as it did before which is great news for my sanity.

Right now the most annoying sound is my laptop fan which drives me up the wall after a while. I still find it amusing (I’m easily amused) how different it sounds when I walk on different surfaces. It even sounds different when I walk differently.

As I mentioned before I hear a lot of what I could hear before but on a different level. Some examples.
1) Vehicles.
Before: If I was outside in front of the house I could sometimes hear a car coming from 1-3 houses away.
Now: If I’m outside in front of the house I can hear a car coming even if it’s down at the end of the street (think 5-7 houses away).
2) Toilet flushing and water running.
Before: I could hear this if I was either in the bathroom or right outside the bathroom door (on good days).
Now: I can hear this from the next room over (sometimes).
3) People talking in restaurants/stores.
Before: It all kind of meshed together. I could pick out announcements. Of course I had no idea what was being said but I was aware that there was an announcement.
Now: Of course it still all meshes together, because that’s just what happens in busy places. If I’m standing in line for something I can tell when people behind me are talking. If I’m sitting at a table I can sometimes pick out when people next to me or behind me are talking. Something I couldn’t really do before. Of course I have no clue what they’re saying but to just be able to pick that out of all the other noises and conversations is cool. I can pick out when people are talking at the end of an aisle in stores. This throws me off because I can’t tell which direction it’s coming from or how close these people are unless I look up. I always think there’s someone right next to me trying to talk to me then when I look up they’re way over at the other end of the aisle.

I also heard a new sound: Someone wiping their feet on a doormat.

I have good and bad days. There are days when I just want to tell the world to shut up. There are also days when I’m all pumped to see what I can figure out that I’m hearing and if I’ll hear anything new.

Oh yeah. I also got to do something I’ve always wanted to do but couldn’t do with my hearing aids without a neck t-coil loop which just didn’t work well. I went for a walk/jog with my iPod. Very cool. It took me a few minutes to sort out outside noises, my feet hitting the pavement, and the music but I was able to do it. I’ve always wondered what it would be like to listen to music while taking a walk/jog. It’s interesting. I think hearing people do this to block out the other noises (or maybe not?). I still like walking/jogging in silence but it’s nice to have a new option.

Deaf Culture and Two Families (Scattered Thoughts)

I forget some of my hearing relatives and friends aren’t familiar with Deaf culture.

I wasn’t really aware that there was such a thing as Deaf culture until I was 15 and my initial exposure wasn’t…erhmm…the most positive experience, lol. I was labeled as being “too hearing” which is considered as an insult. Deaf people then accused me of trying to be too hearing and hearing people accused me of trying to be too deaf. I actually wanted nothing to do with the deaf community for a long time and now I can’t imagine life without the deaf community.

I’m not trying to be hearing, nor am I trying to be deaf…I’m just trying to be Kelly.

Do I consider myself 100% culturally Deaf? No.
Do I consider myself 100% culturally hearing? No.
Do I consider myself both deaf and hearing? Yes.

Just because a person is deaf doesn’t mean they’re automatically culturally Deaf. I have met many hearing people who are more culturally Deaf than I am.

There are so many things I would love to discuss but am trying not to write a book here.

There have been so many times where I wish I could share the positive aspects of Deaf culture with my hearing family/friends and vice versa. Yes, I miss out on things because I can’t hear. However, hearing people miss out on things because they can hear. Hearing people may feel sorry for me at times, but I feel sorry for them at times.

My deaf friends are more than just friends. I have 2 families. My hearing family and my deaf family.

My first family has seen me grow up and they’ve seen me at my worst and best. This family has always been there for me. We share many memories and holiday traditions that cannot be replaced. They provide stability, support, and love. They have always had a place in my life and will always be a part of my life no matter where I end up at. They have put forth the time and effort to try to break communication barriers to show how much they care about me. I know that no matter what happens I can always come home to them because they provide unconditional love…which is something everyone deserves to have and should never take for granted.

I share a common bond with my second family and there are no communication barriers. I can participate 100% in dinner conversations and enjoy events (e.g. weddings, celebrations, etc.) to the fullest with my 2nd family. They know my quirks (sadly some of them will even say “I just pulled a Kelly”), know how often I mix words up when I talk, are familiar with my lame attempts at making cheesy jokes, know how easily I can get distracted *oo! I see something shiny!*, and we talk about our dreams/problems/hopes/fears. I am not the “different” one in my 2nd family.

Scattered thoughts. 🙂

Lincoln’s DNA and Hacking Genomes

Check this out.

Test of Lincoln DNA May Prove Cancer Theory
http://www.msnbc.msn.com/id/30267859

How would you like to have your DNA tested 140+ years from now and for the whole world to know your gene test results?

I can’t remember if I posted a link to this article or not.
Special Investigation: How My Genome Was Hacked
http://www.newscientist.com/article/mg20127013.800-special-investigation-how-my-genome-was-hacked.html

Just Now Reading the User Manual

3.5 weeks and I’m just now reading the User Manual for the Nucleus Freedom CI.

*sheepish look*

I’m so used to just pushing random buttons on things until I finally get what I want. 😉

I was trying to figure out how to use the audio cable with my iPod and CI.

Note to self: When pushing random buttons don’t think that somehow turning the volume up will help. In my defense, I wasn’t sure if I just wasn’t hearing it or if I had my CI on the wrong setting.

I had the iPod on full volume, my CI on the loudest program (P4), and had the volume on the CI cranked up. When I finally got it to recognize the iPod I was almost blown out of my chair when I heard music at the loudest volume possible! Oops.

Now others won’t be subjected to The Ting Tings and Justin Timberlake music blasting from my iPod. :-p

CI vs Hearing Aid

I have mentioned this before and I’m going to mention it again. The most frustrating thing right now is the fact that sounds were more comfortable and I could identify more sounds with my hearing aids.

I would say I’m currently “functioning” with 50% of what I was “functioning” at with my hearing aids. Granted that went from 0% to 50% in a 3 weeks but it does create a situation where it’s tempting to just go back to something familiar.

I caved in today and put my hearing aid on for a bit (10-15 minutes) without the CI. After a few weeks without ear molds…my ear wasn’t too happy to have something stuck into it. Things really did sound different after 3 weeks with the CI. My first thought was “ahh that’s much better” then my second thought was “whoaaaa…that really sounds different…not sure if I like this or not.” After a bit I went back to liking my hearing aid after that “geeze, idk if I like how this sounds” moment. I guess I’m really at an in-between stage. I’m not going to lie and say that I like my CI better than my hearing aid. At this point, I still like the familiar sound of my hearing aid better along with the quality of sounds itself but not as much as I did a few weeks ago.

While I still found more positives about what I could hear with the aid than the CI….I did find negatives about the hearing aid too. Negative things that I was never aware of. It was odd.

I mean when you stop and think about it….my frequency transposition hearing aids is how I’ve heard the world since I was 8 (with a 4-5 year break in there) and I’ve only had my CI for 3 weeks. It is a change, a big one at that.

I find that there are things I’m getting with my CI that I wasn’t getting with my hearing aid and vice versa. Needless to say my brain is currently confused (well, more than usual).

I may try a combination of CI with hearing aid in a couple of weeks. I’m just focusing on getting more used to the quality of the CI sounds right now. I’ll have to get my hearing aid reprogrammed if I do decide to try CI + hearing aid.

I’ve also been trying to pay more attention to what I’m hearing. Today, I went to an off-lease dog park with some friends and their dogs….this other dog came up to us after jumping into a pond and was shaking himself dry. I could hear this before with my hearing aids but it wasn’t as loud as it was with the CI. I giggled to myself. It’s just always somewhat amusing to me when simple things that I never ever thought could make a sound…makes a sound. It just always goes against how I viewed the world growing up.

I could hear a lot of environment sounds with my hearing aids so I’m not hearing a lot of “brand new” sounds with my CI which I expected. However, I am hearing them on a different level….if that makes sense.

One new sound I did hear was at dinner tonight when someone was cutting bread. At first I thought it was just the bread hitting the plate or something. Then I kept hearing it so I finally had to try it myself. I took the knife and just barely cut the bread while making sure it wasn’t the movement of the bread hitting the plate that I was hearing. Sure enough I could hear the knife cutting the bread. Wild. That was yet another “since when has THAT made a sound and how is it possible for THAT to make a sound?!” moment.

I can also hear my voice itself (not what I’m saying, the volume, or the pitch) more with the CI which I think actually is throwing off my speech. Not that I had very understandable speech to start with. I learned speech by copying people’s lip movements (which means I miss out on all those important tongue positions that aren’t visible on the lips) and people breaking words down into smaller words on paper. I never used much auditory skills during speech therapy as a kid because I didn’t really have aids that benefited me enough to do so. So when I hear my voice I have no clue what to do with it and I end up ignoring it in order to have a bit more clear speech. I need to figure out what to do with this so that I can benefit from it. I have been trying different ways to approach this…but I’m clueless.

I’m also listening to music in my car at a much lower volume with the CI which I’m sure drivers next to me at red lights greatly appreciate.

Confession of a Genetic Counselor

When I’m sitting in the waiting area with others for my CI mappings I secretly try to guess who has a genetic hearing loss. I then try to guess which gene/syndrome.

I used to do the same thing with different genetic syndromes/conditions when riding NYC subways and I know I wasn’t the only one who did this *points to you all fellow genetic counselors/geneticists who read this* 😉

I can’t help my genetic nerdiness, after all it is good practice for the boards.

Moving On

A couple of months ago I warned everyone that my blog would be pretty focused on my CI experience for a while. I did say that I would eventually go back to blogging about other things (e.g. boring daily stuff, my experiences as a deaf genetic counselor student, random stuff, etc.). I think I finally reached that point today.

My CI has finally started to become part of me instead of this foreign object hanging out on the side of my head. I also recently started a new chapter, auditory rehab, which frankly is a little boring to blog about.

No worries. I plan on updating often about my CI but not as much as before. I’m at a point where I feel like I can shift my focus onto other things.

Mapping #3 and Auditory Rehab

I had my third mapping today. Well, not really. My audiologist decided she wanted to leave it at this current mapping for another week so we didn’t do anything with the mapping.

I’m still not sure which program I prefer. I like the P4 in terms of being able to pick somethings out better but the volume can get pretty uncomfortable. I like P2 in terms of it being more comfortable. I’ve been wearing it mostly on P3 but every once in a while I find myself in an “ack! too loud…make it stop!” situation and I switch it back to P2. There have also been the “umm..too quiet…” situations (usually towards the end of the day) and I switch up to P4. We’ll see if any of that gets any better this week or not.

She did give me some auditory rehab exercises. I’m basically starting at the lowest level as expected. A lot of it is stuff that I did with the DASL II (Developmental Approach to Successful Listening II) as a kid with my hearing aids. I really plateaued out with it though. I’m just hoping that I can go further with my CI than I did with my hearing aids. We’ll see. My CI could work perfectly with a “normal” audiogram however it is possible I could never understand a single thing without any visual clues. It’s also possible that I could do much better with my CI than I ever did with my hearing aids. We’ll see. 😉 It just depends on the squishy gray matter in my head.

She did have me do a few things at the appointment to just kind of get a general feeling as to where I’m at. The first thing she handed me was a list of words and I had to pick out which one she was saying. Basically there were groups of 3 words that were completely different especially in the number of syllables. I thought there was no way I would be able to get any right. I could kind of do this with my hearing aids but the way I’m hearing things now is just so different from how I heard things with my hearing aids. I can’t even match up what I’m hearing with what I’m lipreading. Speech just seems to have the same pattern regardless of how many words or how many syllables there are. So I was surprised I actually did somewhat decent (in other words I actually got a couple of them right) thinking I wouldn’t even be able to tell the difference between a 1 syllable word and a 4 syllable word. I did find it tricky and didn’t do as well when I had to tell the difference between a 2 and 3 syllable word or a 3 and 4 syllable word.

The most annoying thing right now when it comes to listening to speech is it all sounds monotone and monosyllable. It is hard to see how one can get from this level to the next. Then again I couldn’t see how there was any way I could get from that horrible first week to the next level yet it somehow happened.

Someone did mention to me that there have been people who can’t even tell when they’re hearing something with their CI (when first starting auditory training). I think I would’ve cried if I had been one of those people. I can’t imagine how awful that must feel.

Question: How do you know when you have the best mapping for you? Or is it really a trial and error process? I have no clue whatsoever what I’m “supposed” to hear so I kind of just take what I’m given. Does that makes any sense?

Week #3: Bouncing Around

At last week’s mapping my audiologist told me to not worry too much about working my way up with the new programs (set at increasing volumes: P1=quietest, P4=loudest). She also said to not worry if I didn’t reach P4.

Well I found myself bouncing around a lot between all the programs all week. I’m constantly switching between programs. Usually between P3 and P4, but sometimes P2 too. I haven’t switched around this much with the previous mappings.

I find that what I like about P4 is I seem to hear things a bit better (barely). Voices just seem to come through a bit better on TV and my laptop. However, it gets uncomfortably loud. I usually have it on P2 or P3 when I’m around other people because it gets pretty uncomfortable.

I like P2 and P3 better volume wise but I do lose a bit of what I was getting from P4. However the difference between P3 and P4 (aside from volume) isn’t that drastic and it’s barely
noticeable.

So, we’ll see what mapping #3 tomorrow brings! I think my mappings are starting to become more individualized….sorta…

Why Do We Take This Gamble/Risk?

I became familiar with pubmed as a student and I have access to several science/health/medical journals. I was able to read some cases/studies about CIs while I was making my decision.

I actually found a couple of CI surgery related deaths during my research prior to my CI surgery. Unfortunately, the CI surgery death cases that I read about were preventable.

There was one particular case that made me think. An older man with progressive hearing loss also had a history of some type of “strokes” (am simplifying here because I can’t remember the exact condition). He wanted to hear again so badly that he made his family promise NOT to tell anyone about his medical condition. Sadly, that lead to his death.

It’s just fascinating to me that this person knew that his condition would put him at a very high risk for not making it through surgery. Yet, he was willing to gamble his life for a chance to hear again.

Why?

Why did I take all the surgery related risks?
Why was I willing to give up all of my residual hearing for something that may not even work for me?
Why was I willing to give up what I could benefit from my hearing aids only to start all over again?
Why am I putting my life on hold for this?

Will it be worth it?
Will I be happy with my decision?
Will I have any success with my CI?
Will it make a difference?

What if I’m such a naturally visual person that I plateau off quickly (I believe that even if I were hearing I would be a visual person, my deafness just amplifies this)?
What if I have problems down the road with infections and device failure (low risk, but still possible)?
What if I never get used to the quality of the sound?
What if my brain doesn’t “rewire” itself?

Where will this journey take me and will I like where it takes me if it even takes me anywhere?

Those are the kind of questions that I asked myself for months before surgery was even scheduled and am still asking myself. The one that sticks out to me the most is Why?

Aside from the obvious reasons as to why most of us decide to get a CI (e.g. communication tool, etc.)….why do we feel the need to do this? Why do we WANT to put ourselves through this? Why did that man want to hear and fit into society so badly that he was willing to lose his life?

Why do we feel this way and what is it that makes us feel this way?