Blog Update E-Mail Notification

A few of you asked to be on the e-mail list so that whenever I updated my blog you would get it in an e-mail form. Remember you’re not getting any of the edits or photos unless you go to the blogger website itself.

Anyways, to make a long story short…I need to delete everyone and re-entry those of you who want to get an automatic e-mail whenever I update my blog. Thought I would give those of you who may no longer want those e-mail notifications a chance to be let loose. I am deleting everyone’s e-mail address after this post but will add you back upon your request.

If you want to receive e-mail notifications please e-mail me and I will add you.

My CI

Apparently I can’t get through today without making a CI related update even though the last post was not CI related. 🙂

Here’s a picture of my CI compared with my hearing aid to show the size difference. I have always had the biggest hearing aids possible. I was pretty self-conscious of them (especially the body-worn ones) as a kid, but that has changed with time. I’m still trying to get used to how the CI looks on me. The CI is a lot lighter than I expected which is nice. It is a lot thicker so it is more visible and does stand out more than hearing aids.

One of my favorite thing so far is NO ear molds which means NO whistling. 😀

This is the box I got full of goodies (e.g. batteries, instruction manuals, etc.). Kind of a big box for such a small thing, lol.

I also now have an identification card for security metal detectors. It also states to take precautions before any major medical treatment, especially MRIs, involving induced currents.

I’m also tolerating the CI better today than I was able to yesterday afternoon.

Do I Have A Birth Defect?

Is deafness a birth defect?

I never ever thought I had a birth defect until I started one of my 2nd year genetic counseling clinical rotations in Brooklyn. It was part of “standard procedure” to ask each patient if she/he had any birth defects in their family history. Examples of birth defects that were given included: difficulties walking, heart defects, hearing loss, etc.

I will never forget the day I was sitting there observing my supervisor. It didn’t quite click the first time I heard her say that. It took a couple more sessions for it to finally click that I fell under the category of having a birth defect. Twenty-three years and I never made the connection between being deaf and having a birth defect until that day.

I’m not sure what bothered me the most. The fact that deafness was considered a birth defect or the fact that the thought of having a birth defect bothered me. To me, it made me realize the negative association I have with that term, “birth defect.” I think that part bothered me more than the fact that deafness falls under the category of birth defects. It’s a label that I don’t want to have and why is that? It implies something defective, wrong, inferior, etc. I don’t want to be associated with that. Does that then make me ashamed to have a birth defect which in turn makes me ashamed to be deaf?

I’m not “ashamed” to be deaf, but I am “ashamed” to have a birth defect. (Ashamed isn’t really the right word…) Why is that? I don’t know.

See why I confuse myself all the time. 🙂

Birth Defect: A defect that is present at birth (wordnet.princeton.edu/perl/webwn)
Defect: An imperfection in a bodily system (wordnet.princeton.edu/perl/webwn)

What is perfection? What is imperfection? To me, society tries to apply a single standard of perfection to everyone but everyone has their own unique beliefs/value system/etc. I believe each family has their own definition of perfection and their definition is what is right for them and should be accepted/respected. What one family may consider perfect another family may consider imperfect.

Anyhoo…what are your thoughts on this. Is deafness a birth defect? What is a birth defect? Where does one draw the line at what is and what is not a birth defect?

Initial Stimulation #2 And Finding Comfort In "Hearing" The Turn Signal

Today, I went back for initial stimulation day #2! It was basically the same thing as yesterday but instead of taking an hour and half it was done in half an hour. My new programs are “louder” than they were Monday and I can try to work from the quiet one (P1) to the louder one (P4) according to my comfort level between now and next Tuesday.

I seriously dread putting the CI on. It’s just such a major shock to my poor brain/body. There have been times where it’s made me feel almost sick. I wore it for a couple of hours this morning before my appointment and could only tolerate it for a short time after the appointment. I took it off for a couple of hours then put it back on, but could only tolerate it for 20 minutes. I think I’m just mentally drained right now and probably should leave it off for the rest of tonight. Then start all over again tomorrow after I get some sleep.

I am trying so hard to not wear my hearing aid in the non-implanted ear for now. I’m just afraid that if I put the hearing aid back on I’ll just want to stick with what I know and I won’t want to put the CI back on. So, my hearing aid is currently in my drawer…out of sight, out of mind….hopefully.

So right now I’m either 100% deaf or I’m overwhelmed with the most horrible sound a person can ever hear nonstop without the ability to even discriminate a person’s voice from an environmental sound. I guess sometimes you have to take 10 steps backwards before you can start to move forward. I’m just glad I never 100% depended on my hearing aids. I think the one thing I really miss right now is music. There’s no way I’m going to try to even listen to music with my CI for a longggg time, lol.

Earlier, I was complaining about the annoying noise that turn signals make. Yes, that noise is annoying but it’s kind of turned into a comforting noise for me. I was driving around a bit today and was still picking it out even when I changed lanes on the highway. It’s the only noise I can identify and it’s something I could only identify before (with hearing aids) if the car wasn’t in motion. So being in a world full of high pitched and constant noise where pretty much everything sounds the same…I can’t help but smile and feel a bit of relief whenever I hear that annoying turn signal. I don’t think I’ll be getting any tickets for turn signal violation anytime soon. 😀 If it wasn’t for that sound I probably wouldn’t even drive with the CI on. I like finding excuses to use the turn signal now.

First Evening Of "Hearing"

Ok. My last post about initial stimulation was basically right when I was all overwhelmed and didn’t even know where to start.

I’m still overwhelmed but I was finally able to start thinking a bit more about what I was hearing rather than just sitting there and not knowing what to do with what I was hearing. I say “hearing” but really it’s more of a sensation that runs through the top left side of my body….weird.

My audiologist had given me a few programs that were set at different volumes. Or at least that’s how I understood it. Like I said in the last post I was so distracted by the CI sounds that I had a hard time processing what was being said even though there was an interpreter there. It’s like I get lost from reality whenever the CI is on because it’s so overwhelming. Anyways, she encouraged me to wear the CI at each program for a couple of hours before going up to the next louder program (P1 to P4). I was set on P1 before I left and I thought there was no way I would ever make it past P1. I did eventually make it up to P4. I would just adjust the program to a louder one whenever I noticed I wasn’t really hearing anything. Tomorrow morning will be a repeat where I’ll have to start all over again at P1 after several hours of peaceful and quiet sleep!

Anyhoo…I was able to figure out 3 sounds tonight. I could hear my sidekick vibrating. Let me explain that when I was at KU I used to wear hoodies all the time to classes. Those hoodies were perfect for hiding my sidekick in the front pocket. I used to check my sidekick during large class lectures (500-800 people). Everyone neglected to tell me for a whole year that it made noises whenever it vibrated until a friend finally informed me. Whoopies. I didn’t know that and couldn’t hear it with my hearing aids. When I got a different sidekick and I upgraded to digital hearing aids…I realized that I could hear it if I left it on the table (I could hear it hitting the table) or if had it up right by my ear and listened for it. However, tonight…I could hear it vibrating whenever I was holding it away from the CI or even when it was laying against a pile of folders/papers (granted I have to be pretty close to it to hear it).

Horrible sound. Horrible! Actually all the sounds are just horrible right now, lol.

One sound I could recognize without really actively “listening” for was the car turn signal. The first sound I recognized was not some pretty birds singing or some enjoyable music or even someone’s voice….instead it was the annoying car turn signal which I do find somewhat amusing. Mind you, I didn’t know that it made a noise for years until I got my driver’s license. Even then…most of the time I couldn’t hear it even if I was trying to listen for it. I would hear it every once in a while. I could only hear it when I was stopped at a red light or something, but never while I was actually driving. Tonight I could actually hear it over the car noises while turning.

The only other sound I could pick out was when my mom knocked on my bedroom door once.

That’s all. I can’t tell the difference between anything else whatsoever. I can’t tell the difference between an environmental noise vs a person’s voice…it all sounds the same. 98% of what I hear now sounds exactly the same. Sounds are just horrible, painful, monotone, and annoying right now. I do have dizziness whenever the CI is on and I think that’s the most annoying/difficult thing right now which makes it nearly impossible to focus on anything else.

EDIT: I forgot to add that I can hear myself sigh too. I was always aware that I had a tendency to sigh, but I never realized how often I do it…that is until now….especially when I blog, lol.

Initial Stimulation

Ok. Today was initial stimulation.

Bear with me. I’ve spent the last few hours trying to figure out how to describe what it sounds like and I can’t come up with a good description. My parents did come with me for today’s appointment and we went out to eat afterwards which was nice.

A few friends IMed me afterwards asking how it went and my reply was just “ay yi yi yi….now I can see why people hate it at first.” lol.

It’s just….like whoa….over stimulation!

When the audiologist first hooked me up to the computer to program my cochlear implant, I had no idea what to expect in terms of how it would sound. She had asked me to tell her the first time I “heard” something. I actually FELT it more than “hearing,” and I think I wasn’t sure if what I was feeling was just nervousness or the CI itself so for the longest time I didn’t response until I finally figured out what it was that I was supposed to be listening for. Once I figured it out I think it was way too loud and it just about knocked me out of my chair. It’s very hard to describe the sensation. It’s almost like a combination of the throbbing feeling you have when you have a headache + lightheaded feeling. I actually felt like I was going to just pass out and fall out of that chair the first time….I actually felt a bit nauseous at first, I think it was just too loud and caught me off guard.

After that initial shock to my poor brain, I finally figured out what I was trying to listen for. It’s still a bit confusing because it’s not really sound per sec…it’s almost more of a sensation. I then had to tell her every time I heard something and then tell her when to stop (too loud) several times over and over. I feel like my blood pressure goes up with every sound. It’s just very overwhelming right now. It’s very distracting too. I think I’m going to actually have to proofread this without my CI on. I’m typing this with my CI on and I can barely focus on what I’m doing. I had a very hard time focusing on what was being said at today’s appointment and am having a hard time focusing whenever someone talks to me…am a bit more spacey than usual.

I can usually tolerate loud noises with my hearing aids and I don’t think I’ve ever hated how loud a noise has been until today. I could barely tolerate it when the audiologist unplugged me from the laptop for the first time. My first reaction was that I wanted to take it off immediately (which I didn’t) because it was so painful. She did turn it down a couple of notches, thankfully! 🙂

It’s just very hard to explain. At first it was just this constant throbbing feeling along with kind of a high pitched sound just over and over and over and over. It’s like sound but it’s not really sound. About half an hour ago I finally started to realize that it’s not just a constant sound without a purpose…now that I’m at home in my quiet bedroom I am starting to notice that it happens every time something makes noise so it’s not just random.

Let me just say that the sound is AWFUL and painful. I’m just glad I have friends who have gone through this and they’ve shared their experiences with me so I know it does get better with time. I can totally see why some people just give up right away (don’t worry, I’m not going to do that!). Whenever something makes a sound, it sounds exactly the same. I have no discriminating ability right now….everything sounds exactly the same.

It’s bizarre.

I have always enjoyed silence especially after a long day, but I don’t think I’ve ever loved it as much as I do right now. I’ve taken my CI off a couple of times to show people who are curious and…oh, my goodness…BLISS!!!! 😉 I actually cringe every time I put it back on. It just throws my whole body out of sync and throws my thought process way off.

Oh yeah, I couldn’t find the magnet today when I was trying to put it on for the first time myself at the appointment. Lol. It was a bit funny…my mom later told me she was trying not to laugh. 🙂 That is certainly going to take some getting used to it.

Actually, I may not go back and try to make this more organized. I want to be blunt here and just type up my true experiences and right now I’m just very overwhelmed and distracted….if you haven’t noticed from this post.

I think if I had gotten this when I was kid I would have immediately just taken it off and just been all done with it.

No worries. I plan on sticking with this…I just wanted to get my honest, initial reaction up to show that it’s going to take some time and will be a long road. I’m sure some of it doesn’t make sense, but here you have it!

I actually put my hearing aids away because it is very tempting to want to go back to something familiar…and I don’t want to fall into that trap hole.

I better wrap this up since I’m going to meet a friend for some ice cream.

Tomorrow’s initial stimulation day #2!

Doomed?

Several years ago I was going through some old papers. I happened to find a letter from the same cochlear implant center where I received my CI. This letter was from the doctor who started this center and I believe he’s still at the same center. I have nothing against him, but I do hope that he has changed his approach. It just constantly amazes me how doctors can have so much knowledge about the medical aspect of hearing loss but have no knowledge about the other aspects (e.g. society, education, acceptance, culture, etc.). It is a constant problem. Anyways, I ran across the letter again right before my CI surgery. This is part of the letter from 1985.

“This is a delightful family and a beautiful young girl. Unfortunately, I am afraid she is going to be doomed to a world of hearing impaired.”

Doomed to what? A world full of culture rich experiences? A world where I get to experience things in an unique way that I wish hearing people could experience (yes, hearing people are missing out on something just by being able to hear)? A world where I have many friends/family members who have taken the extra step to learn how to communicate with me (which to me shows how much they care about me)? A world where I’m happy, enjoy life, and am a contributing member of society? I don’t think that’s being doomed.

If I’m doomed to anything….it’s being doomed to a society that can be very ignorant, close-minded, judgemental, and labels people too much…which has nothing to do with the physical act of being able to hear.

All it takes is one negative word. Even though he wrote some positive words, I don’t remember those words. All I remember is that one negative word. Maybe it wasn’t negative to him, but it certainly was to me and my parents.

It’s amazing how powerful that one word can be. Every time I walk into that building, I think of it. I think about what if my parents had truly believed that I was going to be doomed? Would they have believed in me? Would they have put forward the effort to ensure I got the communication access I needed or just given up? How many people took his word that their child would be doomed and that resulted in lower expectations?

Anyways, that letter would cross my mind every once in a while whenever I had to write patient letters for my genetic counseling clinical rotations. I had to give the patient all the accurate medical information at a level they could understand without being negative or judgemental. However, I didn’t want to make them too impersonal and cold. There is a fine line to walk when it comes to writing certain types of patient letters. It can be tricky at times with certain cases/patients. Sometimes it’s scary because I’ve experienced first hand how powerful those letters can be in the role of a person’s decision making process.

On a certain level I can kind of understand the doctor’s point-of-view. He’s a doctor and his job is to “fix” things for what he believes is for the better. Now, this is why the deaf community does not get along with the medical community. The deaf community does not believe they need to be “fixed” while the medical community does. This doctor has done a lot of work in the world of cochlear implants and I’m sure he’s well respected for his work. I’m not going to hold that one word against him, but it does show how powerful one word can be.

It’s been interesting being in both communities. I have one foot in what society labels as the “disabled” community which oftentimes don’t think anything is broken or needs to be “fixed” and I have another foot in the medical community which oftentimes think that everything needs to be “fixed” Two communities that don’t always agree on things and have completely differing point-of-views.

Sometimes all it takes is one word. That one word can be very powerful and can make a difference for better or worse.

A Piece Of Metal And A Hole In My Skull

I just have to admit this.

After my CI surgery I was tempted to just walk up to random people and tell them that I had a piece of metal in my head along with a hole in my skull…just to see their reactions. 😀

Times like that makes me thankful for communication barriers. Seriously. The time and energy that is required to break down those barriers makes me stop and think before I speak….uhh….most of the time anyways. lol.

Of course I’m exaggerating here especially the “hole in my skull” part. It’s not exactly a hole per sec. I don’t know the specifics of my CI surgery or what my surgeon preference is in terms of surgical techniques. However, generally… there is a 3 to 4-millimeter bed drilled in the temporal bone (part of the skull bone that contains part of the ear canal, the middle ear, and the inner ear) to secure the implant (kidshealth.org). So, I guess it’s more of a dent than a hole?

Anyways I just wanted to kind of disprove one of the many CI surgery myths. I had someone come up to me at the DeafNation Expo today saying they would NEVER get a CI because they didn’t want a huge hole drilled into their skull.

DeafNation Expo

I went to the DeafNation Expo today. I’ve always been curious about those sort of events but never really had the chance to check them out. It was basically one HUGE socializing event and I didn’t even get a chance to look at half of the booths. It was nice to just be able to communicate freely with everyone without having to work hard to lipread. Even hearing people who didn’t know sign language were comfortable with deaf people and knew how to communicate with deaf people (e.g. facing us when lipreading, etc). Too bad the real world isn’t always like that.

I had a hard time at first to not “eyesdrop!” I never get to eavesdrop. 😀

I got to meet Matt Hamill (btw, he’s a hottie!) who is a deaf UFC fighter and is ranked #11 in the world. I also got to meet Sean Forbes who established the D-PAN (Deaf Performing Artists Network). D-PAN is known for bringing music to deaf people. You can find some some of his ASL music videos at http://www.d-pan.com/index.html

A few photos:

Matt Hamill (center)

Part of the gang

Morgan getting her rumble on with Sean. Jessika refused to go up on stage and Morgan ended up having to go up instead.

Tanner’s message to the world: “Free Hugs”

Countdown to Activation Day: 1.5 days!

Upcoming Activation Day

Wow, I’m really updating my blog a lot this week. I’m getting a bit anxious about Monday.

My parents are going to try to come with me for initial stimulation/activation day. I left it completely up to them as to if they wanted to come or not. If they do come, it’ll be nice for them to be able to see exactly what it’s like instead of me having to try to explain it. Although I did warn them that it would probably be anti-climactic and boring for them. 😉

I’ll be hooked up to a computer for mapping (“programming”) and this can be a time-consuming process. It’s not like they’ll just give me the processor and I’ll walk out of the door able to “hear” like a hearing person. Ha. Righttttt Wouldn’t that be nice if it was that simple?

When you think about it humans don’t come out of the womb with the ability to understand spoken language and then it takes children years before their speech is 100% understandable.

Of course, don’t forget that those with CIs have only a limited number of electrodes that are artificially stimulating the auditory nerve with electronic signals. This is different compared with the level that a hearing person’s ear functions at.

If you read my earlier posts I explained that I wore hearing aids for a while then stopped for about 4 years. I can remember when I started wearing them again on a daily basis. I was a sophomore in high school. I think the coping skills I learned during that period will help me out with my CI. It was overwhelming at first, but for some reason I stuck with it.

It took me a good year before I stopped jumping at every little noise. I could not tolerate certain sounds. One of those sounds was plastic sacks. I simply could not handle it whenever my parents bought home groceries and the sound that those sacks made whenever they took food out of them. I had to turn my hearing aids off whenever they came home from the grocery store. It took me about a year to get used to it. Now I filter that sound out automatically and I don’t even notice it unless I’m listening for it.

Another sound was the school bell. I would jump about a mile out of my seat every time the bell rang signaling it was time to change classes (so about 7 times a day). It didn’t matter if I watched the clock counting down the seconds before the bell rang…I would still jump out of my chair. It got to the point where I would turn my hearing aids off 5 minutes before the bell was supposed to ring. It was like that for the whole spring semester then when I returned to school in the fall after summer break…I had no problems whatsoever.

Time. It takes time to adapt.

I think people don’t always appreciate or realize how much I learned to hear in the last 10 years with my hearing aids. People seem to judge how well a person can hear based upon how well they can understand spoken language and they disregard environmental sounds. I mean even 10 years after getting those hearing aids I was still hearing and learning new environmental sounds. I couldn’t understand spoken language with my hearing aids but I did pretty well with environmental sounds. People just take those environmental sounds for granted. For instance, I could hear whenever someone started talking to me (e.g. teacher, friend) and would look up. Whereas without my hearing aids I would have no clue if someone was even speaking to me and wouldn’t look up to lipread or to watch the interpreter.

Now, I’ll be starting all over again from square one and will I like it? I don’t know. Will it benefit me any more than my hearing aids did? I don’t know. Will I regret or love it? I don’t know. Will people even notice any difference? I don’t know. Will I gain more confident in using my speech? I don’t know. Will my speech become any more understandable (basically only my parents can understand me and even they can’t always understand me…..partly because I have a tendency to talk fast)? I don’t know. Will my lipreading ability improve? I don’t know. Will it really sound that different from my hearing aids? I don’t know. So many unknowns, but we’ll see what happens.

Everyone seems to have completely different experiences on activation day. I’ve heard that some people can only hear beeps and it takes a while before they can actually hear something other than beeps. Some say it sounds like Donald Duck. Others have issues with facial twitching. Those who could hear before may be able to understand some speech. Sometimes not all the electrodes work. Etc. Etc.

When I put on my new hearing aids for the first time 10 years ago, everyone in that room was watching my expression really carefully. I think they expected me to jump up and down for joy or something. Instead I was more like “huh…hmm…interesting.” I think my reaction will be similar to that Monday. Actually I think I’ll be thrilled when I first hear something just to get over that “omg, what if it doesn’t work at all” fear. Then after that I’ll be more like “ok, let’s see what I’ve gotten myself into. Whoa, bizzare. Huh. How does that work? Interesting. Now, what’s the next step?” I’m an analytical person and oftentimes I react in an analytical way. I have to think about things and process things before I react emotionally. So, I do seem to have what appears to others a delayed reaction even though I have about 100 thoughts going through my head at the same time and I’m trying to figure them all out.

Pretty much everyone I’ve talked to who got their CIs at an older age did NOT like it at first and some hated it. I’ve always asked them if they would do it all over again. The answer I’ve always gotten is, “yes, I would do it again.” That to me, says a lot.

I’m just going to have to remind myself that in a way I’ll be starting all over again Monday and to accept that. Honestly, all I really want out of Monday is 1) no twitching 2) all electrodes to work 3) ability to “hear” sounds in general 4) ability to tolerate how those sounds sound. I’m not even going to worry about recognizing sounds at this point. I think I’ll have different expectations after Monday. Monday will be more of a Intro. to Cochlear Implant class (CI 101) and also becoming familiar with how the whole process of mapping works.

Baby steps….baby steps….

Btw, the wait to be activated is worse than the actual surgery. It helps to be knocked out instead of sitting around thinking “what ifs” and trying to be patient. 😉

Countdown to Activation Day: 4 days!