Tuesday, March 25, 2008

What's next... a CI?!

Hello All! I hope everyone also had a great Easter! I spent mine with my family in southeast Missouri for the majority of the day. They got hit by an ice storm awhile back so we got to see a lot of the ice damage as well. Here is a picture of my friend and me at my Aunt’s house. I am the one holding the boot cup :)

I am at the point in my life regarding my hearing loss where I want more out of my ears. Ya I am quite a demanding person aren’t I? I have been talking to one of our famous CI bloggers, Abbie, and I found she and I had A LOT in common regarding our hearing loss and the situations involving it. She asked me the same question everyone else asked me before, “Why didn’t you get a Cochlear Implant?” At the time it was offered my parents declined it because of how new and still on going the CI was. Plus the doctors felt I would get by and along just fine using a hearing aid, reading lips and using Cued Speech.

They were right! I did get along just fine. I used cued speech through my whole time during school, being mainstreamed. I heard all the sounds I wanted to hear with the hearing aids and spoke to people by reading lips. However, I entered the real world. College, jobs, etc. I was noticing all of a sudden, the hearing aids weren’t giving me the ability of what I REALLY wanted to do; this was to become a flight attendant or at least work for the airlines. The majority of the jobs in the airline business require the capability to understand on all phone types, understand announcements, and have the ability to communicate to people at any type of situation.

IF, and I do state IF the CI works and offers me the capability to be able to do this..? God Damn it I will get in a heartbeat. Of course there are always, always risks in everything, I absolutely understand it. After talking to people like Abbie, who have gotten the CI, and then people who have not gotten it for other reasons, like Geo, I wanted to educate myself and hear from both sides, people who chose not to get it and people who did, like Abbie. I heard pros and cons.

Starting with someone like Abbie. So far I have been very pleased with her results on how she is doing with her CI. We feel confident I would have excellent results with the CI. I of course will be going to see a CI team at some point to actually be specific and ask the questions and be sure I can have them answered. I am very confident if I go through with it, my therapy and recovery time will go extremely fast and easy. I would be able to do the things I want to do, and be a flight attendant, can you say fasten your seat belts?! The CI so it seems like would be able to offer me the three specific things I cannot do with the hearing aids, ability to understand people without text, understand announcements and phones, and use equipment on board the aircraft and at the airports.

Now, I wanted to speak to someone who declined it, and ask why. This would be Geo. He gave specifics on his video and I was very moved to see someone like his own mother accepted him for who he was. Now I am not concerned about acceptance to be quite frank with me, I will do what I want to do to make me happy. If it means getting a CI, then so be it. Geo expressed his concerns about me getting a CI and I appreciate the concerns because they are real and very valuable information. It also brings me to another option, digital hearing aids.

Digital hearing aids seem to keep being better and better. I have heard testimonies of how well it works for many deaf and HOH people. This also peaks my interest because I run the chance of ruining the ears by getting a CI. I don’t want to play it safe though. However I am willing to check it out. Anyone else has any advice or experiences they want to add getting a digital hearing aid? I got them when I was in 6th grade (I am 21 yrs old now) and they did not work well for me at all. So I had switched back to analog hearing aids, and frankly they are getting quite old.

I am hoping after meeting with the CI team that it meets my satisfaction of what I want from it. So far it sounds amazing and something that could REALLY help me in doing a better job and getting the job I want. It truly would make me so happy and I really would be living my dream of doing that stuff for the airlines. I am very sad to see people are bothered about getting a CI. What’s wrong about people getting CI? Big deal, let them chose what THEY want to do. It is their life, let them live it. Let’s not be so judgmental of our choices and just accept that’s what they chose and move on!

Now…I better start practicing my lines for flight attendant if this Cochlear Implant deal works out for me….”To fasten your seat belt slide the flat end into the buckle, to release lift up on the buckle. There are six emergency exit doors...two forward exit, two rear and 2 over the wing……..”

17 comments:

Tales from the CI Gal said...

Great job with the posting. I love the fact you talked to real people and respect both choices. I also love that fact that you are looking for all avenues because you have a goal. Don't let anything take the place of your goal.

Our dreams keep us going!

I can't wait to keep pushing the button asking for everything from pillows, water, flashlight, and throwup bags. Look forward to seeing you in the crisp flight uniform.

Keep blogging.....
Valerie

Abbie said...

Like I said, just take your time and keep researching, the more you know, the more prepared you will be to make a decision. When I was 19, I was told that I was a candidate and I said no way. It wasn't until I had nothing at all and it was still one of the hardest decision that I had to make and it wasn't a 1, 2, 3 deal. There is so many aspects to a decision like this because the outcome is not written in stone. No one can say that it will work right off the bat because no one knows for sure. Everyone has different experiences with the CI and you definitely need to hear all the sides of it.

Keep living, keep learning and keep dreaming.

Seek Geo said...

Hey Alex!

Good blog! One thing, I must say that you are right on the money that no one should judge anyone just because of a choice for their preference. I'm all for people who are old enough to make a decision.

One thing, I usually tell people is to MAKE sure if that's what they want to get implanted because you can't just undo it. With hearing aids, you can easily undo it if it doesn't work for you. So that's why we have to try things that can be easily undo if nothing work before taking a big step such as cochlear implant.

Since we know a little about new digital hearing aids, we need to dig up a little and see if it works very well. If that's the case, I would suggest to try these to see if it works for you and if not, then you know what is next step you want to do is to get implanted, totally up to you, though.

As for digital hearing aids, it costs like 800 per each so it is much cheaper than CI. Also, I think some places have 30 to 90 days guarantee return if it don't work well for you, unless it's changed now that there is no refundable?

Whatever that makes you happy, you have my 100% support. That's what I believe in is for everyone to be happy, if they are happy then I am happy for them.

Keep us posted what is your plan.

-SG

Hedy said...

You said "I am very sad to see people are bothered about getting a CI. What’s wrong about people getting CI? Big deal, let them chose what THEY want to do. It is their life, let them live it. Let’s not be so judgmental of our choices and just accept that’s what they chose and move on!" DISGUSTED!

Look what you said! You watch yourself!! I have met few CI people, they judged me because I refused to get CI. I am happy who I am. They belittled me about the reality world. Well, I am THERE in the real world right now. I do face the challenge of the daily life. I frankly do not care!

THAT BOTHERS ME A LOT that CI people judged us for not getting CI. PLEASE say anything better than what you just said. You accused us!

Yes, we fight to protect our deaf culture and ASL. Since AVT does not allow deaf babies access ASL. I am SAD, too! DO NOT use your finger point anti-ci people. We have hostiled over our belief.

Right now, we are working together and accepting each others...AS LONG AS WE EMBRACE OUR BELIEFS AND RESPECT. LESS to divide all of us in the deaf community. Screw audists.

Hedy

Alex said...

Hedy-

You stated.. "Yes, we fight to protect our deaf culture and ASL. Since AVT does not allow deaf babies access ASL. I am SAD, too! DO NOT use your finger point anti-ci people. We have hostiled over our belief."

It was people like you who "protected" the deaf and ASL "rights" by belitting people like me for not choosing ASL or living in the deaf world. All my life I was harrassed,physically, and verbally for my own life styles. So I do have a right to point at the CI bashers as much as the deaf bashers. We won't get anywhere bashing anyone for their choices. I don't know if you really read what I wrote but I don't have a CI, not yet, maybe not ever. I was trying to reach out to those on BOTH sides, you also seemed to have failed to see that also. I am sorry to hear the CI users have bashed you for not choosing a CI, that is not right either.

you also stated.. "Right now, we are working together and accepting each others...AS LONG AS WE EMBRACE OUR BELIEFS AND RESPECT. LESS to divide all of us in the deaf community. Screw audists."

How can you say that by advocating the deaf right and deaf culture and ASL while not accepting others who got CI, or went for cued or did something "different"


Alex

Anonymous said...

Alex,

I don't wanna rain on your parade, believe me, and I know your dream is to become a flight attendant. How about first checking out the reality of being a flight attendant? Do you know someone who has this job? If not, start checkin' this angle out with a person who really has this kind of a job! You're dealing with a travelling public, airplane safety, security, and comfort, and yes, lots of communication with passengers!

Secondly, in order to have a CI, make sure you're really a candidate for one. Some deaf people are not, either because of contraindications or because they get sufficient speech comprehension thru digital aids. Really, slow down here.

CI's are the solution when nothing else works for the kind of hearing loss you may have. I'm not an ENT doc or an audie, but I'm profoundly deaf myself doing well enough with hearing aid technology so far. What I'm trying to say, I guess, is take the time to know all options, including the job qualifications for flight attendant, in addition to hearing aid technology and CI's.

Remember that stem cells' ability to possibly replicate hair cells in the cochlea in humans may replace CI technology in the near future, so do think carefully about your options. In any case, it's your future and your choices. Know the decision will not be an easy one and I wish you the best of luck.

Ann_C

Alex said...

Ann_C,

I worked for Southwest Airlines as a CSA, and I have already shadowed the flight attendent job and can do everything but the 3 things I mentioned in my blog, understanding announcements, using phones without captions, and the equip stuff.

Trust me I have followed it all and I LOVE IT, yes I have been through everything with it so I understand the job and the constant flying, i LOVE the flying! I flew over 100 flights in the past year alone as part of my job, so much fun! :)

Thats why I have been asking around about the information and stuff, also I would like to talk to the CI Team as I mentioned to see if they want me to go through with it. My audiologist says I am a candidate for it under his qualifications and said if I do want a CI to go find a CI Team to get really involved as you suggested.

It sounds like we both get a lot out of our hearing aids but for me, I don't get what I want to be able to do, which it "seems" (i use it fairly loosely) the CI would be able to do, providing it works and it is a perfect world :)

It is also why I brought up digital aids too to see if I could benefit and maybe see if I can get the 3 things I want out of the digital ones that I cannot out of the analog one.

I do have stem cell also in my mind and am also curious to see how that goes also.

Thanks Ann though for hilighting out the concerns, they definetly have been questioned by me which is why I did the investigation I did with the job position. Thanks!

Alex

Anonymous said...

Hey, you've done some homework, good for you! You're a smart fella!

Ann_C

Jay said...

Alex,

I agree of what Geo said, Get the digital hearing aids at first, and see how they work out for your hearing lost.. My dealer gives me 90 days to return it if I am not happy with them. (Been happy with mine, wish I've done them sooner!)

A hearing aids is easy to deal with, in and out.. No major surgery, and won't have to worry about going bald like Geo! (hehe)

kw said...

Hi Alex,
It's great the way you're thinking of all angles. Getting a CI is a tough decision. Most the people I know with CI's are very happy with them. If you qualify for CI, then chances are even the best digital aids will not help you hear on the phone or announcements. I have worn digital aids for many years. I found them much better than analogs because of the type of hearing loss I have, but I still have trouble with the phone and cannot hear announcements. Also-- when I fly, the noise of the plane is quite loud and makes it difficult for me to hear anyone. However you can try out new aids without buying them to see if they'll work for you. Legally you have a thirty day trial period in which to return them.

Karen said...

It sure can be a tough decision! You're on the right path by exploring information and seeking out other people's experiences on all sides. Ultimately, you'll make a decision that you're comfortable with. Enjoy the journey!

Hedy said...

Alex,

I accept CI people who do not learn ASL. That is fine with me. That are CI people's decision. My point is that you should not say this. That led others think we are still doing it. I met many ex-CI who still have CI inside in the head, threw out or discarded for embracing ASL. We welcome them anyway. Even we welcome CI non-sign as long as they respect us signers. There are some CI people informed by audism that signers are not intelligent enough.
I find so offended.

I read your blog fine. I know you have not gotten CI yet. You just mentioned "I am very sad to see people are bothered about getting a CI. What’s wrong about people getting CI?" sounds like you overreacted toward deaf people who opposed getting CI on Deaf person's personal decision. You already judged on us.

You want to be happy if you get CI for your own personal reasons. I am cool with that. Go for it.

I will be on your side. I would be pleased if you respect ASL as a communication access and language. Support ASL for other deaf people who desire to use sign language.

If you decide to stop using ASL and use voice. No problem for me, we can communicate on pen and papers. :-)

Hedy

Anonymous said...

Can you increase contrast between text and background please?

Thank you. :)

Tassielady said...

Hey Alex
I wear digital hearing aids and i tell you it does improve alot from the analogue ones. One thing is the sound is mighty strong but i tried the phone part was a little difficult as it has been 15 years since i use the phone and it takes time for me to get use to it.
Its for you to test, try before you buy it.

As for Hedy really i agree with alex comment "I am very sad to see people are bothered about getting a CI. What’s wrong about people getting CI? Big deal, let them chose what THEY want to do. It is their life, let them live it. Let’s not be so judgmental of our choices and just accept that’s what they chose and move on!"

Now he is stating on both side deaf, asl, cued, speech etc it is each individual choose what they want in life. I dont frown on them i support them whichever life they choose i know sign i can lipread and i can talk but i cant hear so really if i want CI i will it is my body my choice not anyone else to judge. That is what alex is trying to point out as if i dont sign but can talk to hearing i get offended from deaf saying she is not deaf she can speak *what does that tell you ??? thats double standard!!!

To be honest i let them decided what they want in life CI or asl or whatever but dont go around telling them CI is bad it is up to them to see it for themselves if it works or not its a big risk to take and we all take risk in life do we !?!?!

I will support alex all the way whatever decision he makes.

Cheers
Peta

Abbie said...

Hedy, I am very sorry that you had a bad experience with CI people. Rest assure nothing like that will come from me.

However, I disagree with your comment that the entire deaf community accepts CI people. You are assuming a position of speaking for an entire group when you can only speak for yourself.

I can say that I have been on the receiving end of lets just say, "not so nice comments" Thankfully they represent a small group.

K. said...

I grew up with analogs of course (I'm 35) - I started with the big body aid. I am profoundly deaf - less than 130 dB in one ear and nothing in the other. I still do lip-read a bit (not as well as I did when I was a kid) and I do have a digital aid for when I have to be with people who speak and I need "noise" (not sound), to direct me to their voice. Now, with a 135dB loss, and a digital aid that can give me a fair amount of noise that would bring me to about 120dB is big! (Granted, I don't have speech recognition like you do - if I did, wow, I'm sure I could understand what some of the people were really saying!)

Now, if you already have a lot more hearing than that (many Deaf people range between 85 and 115), then, digital aids are the way to go.

I've had 3 pairs of digital aids in the past 12 years. And each time, the fellow I get them from gives me the newest ones out on the market (usually they've only been out a few months). Some hearing aid practitioners, will just try one or two digitals and say "oh, that's the best we can do". Don't believe them. Tell them you want the absolute strongest digital there is out on the market. Even if you don't need it set to the highest volume allowance, it will mean you will get A LOT of hearing from it, if you can already benefit from an analog.

I have friends who went to Gallaudet with me, who are about 85-120 dB who grew up on analogs too, of course. And now they have digitals and they say it is amazing, they can hear and understand so much (some even say it brings them up as high as 65 dB - which is hard of hearing). The digital I have is made by Bernafon and it is called Xtreme. I got it last summer and it was just out on the market and it was the most powerful aid produced (a lot of them are made in Europe) but all the distributors all over Canada and US sell them.

Now, if you already are good at lip-reading and speech, you are ahead of the game. And of course, if you were born with some hearing then you are really set.

I was born Deaf (generational Deaf). I can speak (how well, who really cares?) and my main language is ASL. I think in ASL and although I can read and write in fluent English, when I speak, I have to translate in my mind first from ASL to English.

When I was 15, a doctor recommended a CI because I could talk. My father asked a few questions and said no thank you, we're not interested.

If you have some hearing now, and you've given the best digitals a really good try (and you might want to also try the new FM's - they are nothing like what we had when we were kids - they are like iPods - really tiny and hang around your neck, no one even knows they are there - switch your aids to T-coil, and voila! sound to your ears! - no "Y" cords or anything visible either). There is a really good FM out by Phonak hearing systems. The microphone (again the size of an iPod) is called Easy Link and the receiver is called My Link. One of the best FM's out there. Depending on the phone a lot of them have a little jack that the FM connects directly into, so it comes to your ears - so you have the volume control on your aids, plus the extra volume control on the FM (also works with the new tv's who have the audio jack on them). Also, a plane is relatively quiet regarding talking - so I imagine there is a lot of other noise like in a car - I don't know - so if you had the FM, and you needed to speak with someone you could just hand it to them. They can put it around their neck (it's just a cord) or they can just hold it in their hand (not near their mouth) and you would be able to talk with them that way. So, you could pass it to the passenger or another attendant or whatever and get easier communication that way.

If after giving the best digitals AND the new FM's a really, really, good try, then consider a CI. Don't lose the hearing you naturally have by getting a CI if you don't have to.

K. said...

I know this is an old entry to the blog so you probably won't even read this - but I have an analogy for you regarding digital vs analog hearing aids.

You remember the old walkmans that had those headphones - they give you good sound on high volume, right? So you think "Hey, this is good, I can hear the music." Ok, that's an analog.

Now, imagine you go to a big concert that have lots of speakers and music and you hear so much sound and (I know, they have concerts where the people who sing really are screaming or something, but imagine you go to a nice concert - say Country music - most of them don't scream right?). So anyway - you go to a big concert and imagine it is in a small room that has 50 people but the sound is like they have a big stadium concert. That is digital.

See the difference?

If you have 70db without an aid, maybe 50db with analog, then with digital, probably 15-20db!!! Wow, big difference, right? Almost can understand like a hearing person. BUT, you can take it off and you are still deaf (or hard of hearing, I should say), so you get the best of both worlds - you can experience the sound and voices like an almost hearing person, but then you come home from work and you take it off and sit and watch a good movie (captioned of course) in silence. Wow!

I know I really can't hear much of anything, but I do know with my digital aid, I get a lot of noise. As I think I said before, it directs me to know there is someone talking when in a room alone. In a big room or many people, I never wear it. But for me, it only gives me maybe 120 db (not sound like a lot, right?) but for me that is a lot of noise. Then I come home after an hour or two with it on... take it off and ahh, bliss. BUT, I have that opportunity.

So why do I keep talking about analog vs digital? Because you said you are hard of hearing. If you are hard of hearing, you don't get a CI, you get a digital aid and an FM (which is now called a hearing system, not FM like when we were kids).

So you can sign, enjoy both worlds - you can work in the hearing world and understand well and then still be able to enjoy the pleasures of the deaf world.

I have friends I went to Gally with who you wouldn't even realise they are deaf with their digitals - you think they are just hard of hearing - wow! and yet - when we were at Gally, before digitals - they were deaf, deaf, deaf! But now, like I said, they can enjoy both worlds.

For me, I use my digital for certain reasons - but I would never want to be hard of hearing - too much noise in the world.