Then where do I fit?

I am on a number of different groups… some Deaf groups, some deaf groups. Some CI groups, some ASL groups… I surround myself with different types of people, and to me I think that is a wonderful thing, seeing different opinions, and different thoughts, nothing then is allowed to be dogma, but I am allowed to see facts for facts.

 

Recently… I’ve been thinking about leaving one of the groups, why? Because it seems their main goal is to end ALL cochlear implant surgeries, they are telling lies about how getting a CI isn’t a choice for anyone, that it is a death sentence, that Deaf people who choose to get a CI will be ostracized from the Deaf Community, that you will no longer be Deaf, or that getting a CI is promoting Audism… none of this I agree with.

 

Let me get a few facts out there (that are already in this blog site, but still) 1. I am Deaf, 2. I use ASL as my main Language, 3. I have a CI 4. I HAVE NOT been ostracized from the Deaf Community, nor has anyone I know who has chosen to get a CI been.

Now… there are a few things I do agree with in the most recent post that has gotten me upset… 1. CI’s should not be done on infants, 2. all deaf children should have sign language (ASL if in the USA, or the countries sign language), 3. Being Deaf should be accepted as a natural state, 4. CI’s are not a “fix”, 5. Before getting a CI, you should talk with MANY people who have CI’s (this was from a comment, not the original post)

 

Responses.

  1. if a child wants a CI, let them choose a CI when they are old enough to understand what it means to get one.
  2. Sign language is the natural language of deaf children, and should be taught first. Speech is not the important thing, language is. If you have a solid base for language, then you will be able to learn other languages easier (including the spoken forms of language).
  3. Deaf is natural, there is nothing wrong with being deaf, it doesn’t matter if it is a deaf human, if it is a deaf cat, or if it is a deaf Dalmatian (more on that to come).  It is a natural state of being, we have multiple senses for a reason, so we are not relying on only one.
  4. A CI will not “fix” hearing. For one thing, there is nothing wrong with being Deaf… see #3… a CI may or may not improve the simulation of hearing, give a sense of hearing. A CI should not be seen as a fix for a deaf person, because we are not broken. It will not give a person normal hearing, even if a sound booth test shows near normal results with a CI, because the world is not a sound booth.
  5. Before anyone chooses to get a CI, they should talk with many people who have had them, be told the good, the bad, as well as the ugly. In some cases, it doesn’t work, in some cases it works beautifully. But before you decide, talk to as many people as possible, with all different brands (no brand is honestly better than any other), with all different stories. Don’t count out the person who was a teen when she was implanted and suffered severe vertigo from it, or the person who was born deaf and can’t understand anything but environmental noise, or the girl who was implanted as a child, but can’t have it turned up to where she gets speech sounds because of facial stim, or the adult who chose a CI after progressive loss, and is doing great. Don’t count a story out, because you NEED to know the truth, things happen, its not always successful, bad things can happen, but so can good things. CI’s, just like life in general, is never black and white….

 

So, after reading these things, it gets me wondering, if, because I have chosen, not only once, but twice, to receive a CI, and if the following is true: “if it does work, you are likely to be ostracized by Deafs (you have expressed that being Deaf is bad, and want to distance from it)” , where does that leave me? Am I back in that middle ground between Deaf and Hearing where I use to be before I found my Deaf Community? Do I fit anywhere? I know the answers to these questions… because no matter what I am still Deaf, I still use ASL, and my Deaf Community has not turned their backs on me, and I know they never will, they are my family, just as much as blood makes a family.

Now I’m on another group, and I see so often pictures of children, babies even, having CI surgeries, and their parents or grandparents talking about how they are now hearing (LIE… GREAT BIG LIE) and how they don’t need ASL, or how they won’t respond to their child if they use ASL… or how they only use ASL at bath times (a sign here or there)… and that… it breaks my heart for so many reasons.

These children will never be hearing, they are deaf, and nothing will change that. ASL is still needed, because it doesn’t require batteries, it will never break, it is always accessible (even to a deaf blind child), noise doesn’t interfere with it… it is the only 100% accessible language to a child. I’m in no way pro infant or child implantation, I believe it is a very personal decision that must be made individually, and a child, especially a baby, has NO way of telling you if it is too loud, if they are feeling funny things (stimulation that can be very uncomfortable, even to the point of pain)… I think the person should make the decision, and it MUST be an informed decision. Before I got my first CI I talked with MANY adults who have CI’s, I read blogs, I have friends who’s CI’s failed, who are candidates, but choose not to get one, who regretted getting their CI, those who wanted explants (removing the CI), and those who were pleased with it. I did my homework, I actually watched a CI surgery (I must find that link), and I think that is something that is VERY important, I knew exactly what was going to be happening when I was under the knife, I knew what to expect (mostly) when I woke up from anesthesia, and I knew there was a very real possibility that it wouldn’t work, and that I would never be able to understand speech. Honestly, if you look back, my audiologist told me I was underestimating myself, by saying I wasn’t expecting to understand speech, I just wanted to be able to hear (not necessarily understand) music again, and know if someone was talking… my CI has exceeded my expectations yes.

ASL also, it isn’t something that is only needed for bath times, in fact, if you use it only at bath time… I think there are issues there… it gives mixed signals to the child, especially if the child’s first language is ASL… they may have a hard time telling when its appropriate and when it isn’t (I have a lengthy explanation of that here)

So… I also wonder… do I fit in this group? I can share my CI joy, and I love that… but do I fit in with the people who feel their deafness is something to be ashamed of, or that if you can’t hear something you are missing out? I don’t know… I am not, and will not be ashamed of being Deaf, and I know you can have a full life without hearing a thing… I’m starting to wonder… where do I fit… there are only a few places I know for sure. In my loves arms, in the Deaf community, and with my family (most of it anyways), and this… this I am ok with. I don’t have to fit with the Radical Deafies, nor with the Oral deafies, and certainty not with the audist deafs… but their stories I also shouldn’t count out…  but I shouldn’t take anything at face value either…

Effective communication strategies

My life at work today consists of two distinct groups of time… CI time and no CI time, both sets of time include my HA being on. Why might you ask, do you take your CI off at work? You work with all hearing people, a hearing coworker, hearing clients… why is your CI coming off when you need to listen the most? Trust me, I have a very good answer to this…

this lovely piece of machinery is joyfully tearing up the asphalt behind my office. Now with my Hearing aid I occasionally, if I stand right by the door to the back, hear a very quiet rumble, although I can feel it much more than I can hear it. (there is no measurable hearing in that ear). But with the CI, no matter where I am in the shop, it is LOUD… it interferes with my hearing, with my comprehension… and becomes all I can hear… not only that… but with the 100+ db noise it and its 3 Jackhammer friends are putting out… I get a headache. This has lead me to think about my work situation a bit… my new co-worker has never known me as Deaf Ash without a CI, he knows to look at me, but he also knows I can understand some of what is said… he knows he can get my attention just by saying something, he knows I can hear the phone ring… and with the help of my occasionally correct captioned phone, I can also answer it. The inconsistency of today is proving to be difficult for both him and I.

I am finding myself having my CI off every 20 minutes or so… as soon as I hear the sound, or begin to feel the vibrations that mean the sound is inevitable, the CI comes off my head, and I enter a beautiful world of complete silence… with more communication difficulties than has become my norm.

With that, I’ve started to think about how communication can be eased between us right now, and what, in reality, should be good practice all the time so we can ensure good communication. These tips may be helpful for someone else, which is why I have decided to codify (write them down).  I am thinking of calling them something catchy… but the only thing that is coming to mind is that Deaf Girl’s Law… which is in no way catchy.

Effective Communication Strategies:

1. Make sure you have the person’s attention before you begin to speak.

  • To do this, tap the person on the shoulder lightly
  • If you are trying to get everyone’s attention, you may flash the lights
  • NEVER throw something at the person to get their attention

from Matt Daigles that Deaf Guy

2. Speak in a normal tone of voice, at a normal speed.

  • do not think that just because your voice is raised, the d/Deaf/HoH person can understand what you are saying better, normally it is harder.
  • Do not think that if you talk slowly we will understand better… by doing that you are changing how your lips move, and making it harder to understand.

3. When you are talking, be sure to keep looking at the dhh person without fidgeting or covering your mouth.

  • This will make it easier for them to continue to understand, when you look away our source of information disappears.
  • When you fidget, it is distracting, think of trying to read a book while someone giggles it, wiggles it and twists…
  • Covering your mouth does just the same as turning away… If I can’t see your lips when you are talking, I will have no idea what you are saying.

4. Stand with approximately 4 feet in between the two of you

  • Standing too close or too far away can make comprehension difficult

5. Do not get frustrated when the word “What” creeps in, it is bound to happen…

  • This word is going to come up, Maybe we misunderstood, maybe the words looked like gobbydygook… maybe we blinked and missed something, but the word is bound to come up. Keep calm, proceed to step 6 and 7.

6. When asked what, do not simply say the same thing again, restate it, choose different words, because maybe then we will understand.

  • Certain words look the same, certain words are just difficult to understand. Being given the same word over and over doesn’t necessarily enhance our comprehension, but it is the definition of insanity. Giving us a second word, with the same or similar meaning can aid us in grasping what is said.

7. Write things down that are complicated, or if we don’t understand

  • Contrary to popular belief, not all deaf people are stupid… we can write, we are not all illiterate. Just like in hearing worlds, in different states, countries, some of us may not be able to write or read… but this is not due to our deafness, this is more likely due to inadequate teaching as children, or inadequate access to language. Do not assume all deaf people can’t write, just as I won’t assume all hearing people can’t (even though my experiences have been hearing people less likely to try and write than a deaf person)

8. Be patient

  • Lip-reading is hard, it takes time, we can’t grasp everything that is said. Be patient with us, frustration is going to happen on both ends of the conversation, but getting frustrated will not help us meet our communication goals.

9. Understand lip-reading is exhausting and takes a lot out of us, the more tired we become, the less we will understand.

  • Try to limit the communication time. Break it up into blocks of time if necessary. The longer we lip read, the more mistakes we will make.
  • Giving breaks can allow us to think about what was said, and make notes if we need to.

10. Speak clearly.

  • Mumbling is one of our worst nightmares.

lipreading Nightmares. From Matt Daigle

11. Understand accents are harder, it takes more time for us to get use to the way you speak, so our comprehension will be lower to start with.

  • Be patient and if needed, use a pen and paper or a computer to communicate. This will ease frustration for both of us.

12. Lip-reading is not an exact science.

  • Only 30%-40% of the English language is able to be understood from the lips themselves, a really good lip reader, knowing the conversation topics can do better than that, but lip reading is not a science, and too many things can interfere with comprehension.

13. If the person uses a HA or CI, be cautious of background noise.

  • Background noise overpowers everything else. We don’t have the ability to “tune” out specific noises like a fan, or the conversation of others (or… a jackhammer). Our comprehension can go up if we have a quiet environment.

14. Do not assume that if we don’t understand we are less intelligent.

15. NEVER use the words “never mind”

  • This will be explained more in depth in the next blog… but the phrase never mind… it huts.

 

 

So those are some of my tips… any you care to suggest? Although my personal favorite wasn’t mentioned, because this was more about my life at work… but still, if the deaf person signs, learn sign language!!!!

Auditory Rehab, Angel Sound Style

So… I’m not doing any auditory Rehab with my audiologist… for a few reason. I’m doing it on my own.

I’ve been using a few different programs. The first one I used was “Sound and Way Beyond”  (SWB) from Cochlear Americas, who makes my CI. You use to be able to download a demo… but since they have switched to Angel Sound, the demo seems to have disappeared.

what SWB looks like can be found here

I have also used clix which is from Advanced Bionics (I think)

the newest, and so far, the best one I have found is Angel Sound… it has so many more features to it than either clix training or SWB. which looks very similar to SWB, but again, has more features. One of which I am downloading now and will update when I have tried it.

Look at the pictures here

 

One thing that I really like with Angel Sound, although I’m not sure how correct it is, they allow you to check to see your auditory thresholds, so the DB levels that you are hearing at. The one I did a few days ago looked like this.

I think Angel Sound is good for anyone who is interested in knowing where they stand with their speech comprehension, at least to get an idea of how they hear. There are advanced modules… but I’m scared to look at those right now… baby steps… when I become more advanced, I will do the more advanced modules… but I’m still a baby listener.

Discrimination and the Law

My friend Yuni got in an accident yesterday, it was in no way her fault, she stopped at a crosswalk to let a pedestrian pass, and she got rear-ended. Now, this could have gone a few ways, the other driver could have gotten very upset at her for no reason, or as what happened, he could be very apologetic. He understood what happened was his fault, he made sure she was ok before they moved their cars out of the road. When he learned she was Deaf, and used ASL, he was more than happy to write for her. Then it was time to call the police, to have a record of what happened, and the Accident investigator was there to determine fault, and insure there was no injury… that is their job… what happened… not the Accident investigators job.

I will let Yuni tell you about it (and don’t worry, if you don’t understand ASL, I will sum it up underneath in my comments).

 

 

so… what happened?

The guy was very nice, understood he was at fault, wrote as soon as he realized she needed him to, called the police, exchanged insurance information. They worked out a communication style that worked for both of them, it wasn’t her lip reading and speaking, it wasn’t him trying to decipher a language he didn’t know… they used a common language, they wrote in English, and it was easy (albeit nerve racking) for both of them.

 

The Accident Investigator showed up… and the whole situation changed. The investigator wasn’t interested in finding out what happened once she learned Yuni is Deaf, she asked her questions like, do you lip-read, do you speak, wanting Yuni to conform to the investigators preferred method of communication style instead of finding one that fits both of them. Then when the investigator actually starts writing down, she is only discussing hearing aids. Asking why Yuni doesn’t wear them, how can she hear the sirens (and I’m sure other things such as, car horns, etc). This is a police officer, one who is suppose to know the law, suppose to know there is NO requirement where we live to wear hearing aids or a CI to drive. After trying to explain quite a few times, 1. She is an adult and can make the choice to use HA’s or not, 2. Hearing Aids have NOTHING to do with the current investigation, the fact that a HEARING man rear-ended her. The Accident investigator told her she MUST wear a hearing aid, and kept writing about something that had no interest in the investigation… Only after explaining that Yuni had had her license for 2 years and this is the first time she has gotten in an accident, and it is NOT her fault, and she has never so much as gotten a TICKET…  does the cop relent, say the man who hit her is getting a ticket and it wasn’t her fault. Then why did the cop spend so much time explaining how she had to use a hearing aid… which can cost up to $6,000 a piece, including ear mold and fitting.

 

So then, Yuni explains what happens when her mom shows up on the scene, and this gets her thinking. Is this purely an audist attitude, or is there some deeper racial profiling going on?

Her mom speaks English, but for her to understand better, it is much better for the speaker to speak slow, which was explained to the accident investigator. Yuni’s mom came to make sure she was ok, to see what happened, and to know why it happened. Did the cop follow the directions she was given? To speak slowly so Yuni’s mom could easier comprehend? NO, she spoke very quickly… then when this was brought up to her again… she started treating Yuni’s mom like a child as well… This is why Yuni began to think… maybe this wasn’t purely an audist thing, although there was blatant audist beliefs being portrayed by a person who is suppose to protect all of our rights… maybe this had more to do with race than previously though. You see, Yuni is Mexican, her mom is Mexican the man who hit her was white, the cop was white… and yet the only people who were treated as someone to be pittied, as someone who was less intelligent… they were Mexican. Is it a language barrier at this point, or could it be something more sinister?

 

I have had experience with audism as well, and from the people who are suppose to protect my rights, my life… the police officers who patrol our streets, answer emergency calls, it hasn’t just been one time… but a few. Let me explain.

 

On my birthday… my car was broken into

My first, recent encounter was almost a year ago, I woke up on my birthday, ready to drive an hour to see my father for lunch, which is something we hadn’t done in MANY years due to a falling out, but I was excited, it was my birthday, why shouldn’t I be excited. I walked out my front door, went to my car, unlocked it, opened the door, and noticed that… something was wrong. I hadn’t remembered there being a hammer on my drivers seat, and I hadn’t remembered leaving my window open that night… but all over my dash, all over my seats, there was this substance, of what my brain initially saw as snow… but it ended up being glass. Once my brain recovered from this shock, I went inside and dialed 911 with my Video Relay. Explained the situation, and informed the operator that I was deaf, so I would need to have the officer write for me or have someone who signed… and I was immediately asked how, if I was deaf, was I able too call 911. When the officer showed up, she wouldn’t write for me, so the burden of communication was left on me. I spoke, I lipread, I was the only one making an effort. She didn’t like having to repeat herself, and she became very frustrated when I couldn’t understand what she said. She didn’t take any fingerprints, and acted as though she didn’t feel my situation was very important. She reluctantly took the hammer that was left on my seat, and said she would try to get finger prints off it, though I never heard back from them. I was left, on my birthday, feeling as though I wasn’t important enough to do a through investigation, as though I was taking away her valuable time with my “situation” with the break in that occurred to my car, with the items that were stolen, with me being distraught… I wasn’t worth her time, and the effort that I was having to put into communicating with HER was just slowing down her day.

My next adventure with the police was a few months later, and after finding out the situation and the reasons for being pulled over, I do agree that I was in fault, but that doesn’t excuse how I was treated.

Let me preface this with saying, normally, I do not speed, I have been called a grandma by friends because I go the speed limit, unfortunately I slipped up, didn’t see the change in speed (from 55 to 35, nothing in between), and got stopped right after the change happened.

I was driving back to work after working on a clients computer at their home, when I saw lights in my rear view mirror, I pulled over, thinking the motorcycle cop would go around me, instead, he pulled up behind me. I had been at work, so my hearing aids were on, to alert me to sound, but I needed to lipread to understand what was being said. I pull out my drivers license, my card that says I’m deaf, and my registration, ready to hand them to the police officer. He walks to my window, with his microphone on his helmet in front of his face, his words were incomprehensible to me… the only sound I heard was “akdfjaldkghlkdghasl”. I hand him my information, with the card stating I am deaf, and need him to write or use ASL with me on top, or at bare minimum, be sure I can see his lips. He looks at the card, and throws it on the ground, continues to speak, at which point I understand he will not do anything to help me… I must, once again, take the burden of communication onto myself… I speak, inform him again that I am Deaf and if I have any hope of understanding the words coming out of his mouth I need to see it, or better yet, I need him to write for me. NONE of this happens, he continues to speak with the microphone covering his mouth, and when he goes back to his motorcycle to put in my drivers license number to be sure that I am not a wanted criminal, he steps on my card that simply states, “I am Deaf and have special communication needs” (they can be found here, and hoh/non signing version here and I am not letting one cop stop me from using them).

front side

The rest of the conversation goes like this… he speaks, I don’t understand, I ask him to write, he shakes his head… it goes on and on around like a merry go round… with me not understanding anything, and the both of us obviously being frustrated. I finally am able to leave with a ticket in my hand… and my since of self, once again crushed by those who were suppose to protect me.

But the unfortunate thing is, the story doesn’t end there. When I go to pay the ticket, I have a conversation with his supervisor… which was no better. They tried to tell me that a Deaf person wasn’t allowed to drive, that we must use Hearing Aids or Cochlear

back side

Implants if we want to drive, because we have to be able to understand spoken English… that it was not required for the cop to write for me, and that it wasn’t important for me to be able to UNDERSTAND why I was being pulled over… in summary, it felt like he was telling me I had no rights because I couldn’t hear.

My situations were different from my friend Yunis, but unfortunately, they both had similar themes… if you can’t understand me speaking to you… you aren’t worth my time, let me tell you how to live your life, so you can be as similar to me as possible… you aren’t worth it.  Yuni’s also had hits of racial issues. What could we have done differently to make the situations go more smoothly? Should Yuni, who’s situation happened yesterday, take any recourse? Should our police officers, who are supposed to be there to protect us from bodily harm, to protect our rights, to be guardians of the people… shouldn’t they understand the laws better? Should they have to have training, what should they do… or does the burden of communication always have to lay on us alone?

Why the focus on speech?

When you talk to a new parent… they are looking forward to the many firsts the child has. Their first night sleeping all night, the first steps,  the first smile that isn’t because of gas, the first time they laugh,  and their first words… when hearing parents find out their children are deaf, they mourn the “loss” of the “normal” child they would have had… instead of celebrating the child they do have. Why?

 

Partially, I think it is because they had all these expectations for their child. When asked what they want most, many soon to be parents say a healthy child… why is deafness not seen as still being healthy? This is the medical communities fault, the audist perspectives many people have, even without realizing it.

 

Watch the words that are used… common words… but think about their connotations, the meanings behind them, and what they tell parents.

When a child is diagnosed as having a hearing loss, it is a scary time for parents. They are told their child will need speech therapy, there child has been diagnosed with something. Parents are told “I’m sorry” as if their new born child has something wrong with them. Those words, especially at a doctors office, are generally used for very bad, life threatening diseases.

 

These words have negative impacts on the child as well as the parent… the parents sense of joy at seeing their child for the first time is overwhelmed by this scary thing the doctors have said. Their child may never talk, they will never hear music, they will be left out. There is too much focus on what the child can’t do, rather than what they CAN do.

 

The following video can explain it better than I can…

 

There is so much negativity in our world, new parents shouldn’t have to feel this. They should be allowed to be happy they have just brought, or adopted, a new child into this world, into their family. The child may be deaf, or hard of hearing, but that doesn’t mean the child shouldn’t have EVERY opportunity to succeed… and with this, sign language, despite other options, such as hearing aids or Cochlear Implants is ESSENTIAL for the growth of a deaf child. Speaking when you can’t hear the words properly is frustrating… and yet, so many parents choose the oral only rout for their child? Why? The medical community is telling them this is the best option, if they want their child to be “normal”.  There are many other examples… but speech is just a modality of language, and too much time is spent focusing on speech when language development is not truly equivalent to speech development.

This video explains some of it…

 

Don’t get me wrong, am I happy I can speak, yes. It has helped me, especially when I didn’t know ASL, I could get my feelings out in some ways… but writing has always been easier for me. Why? Because I could see the language, I didn’t have to think about it as much, I didn’t have to think about how the words were pronounced, but I could just let it all out. Writing has always been my way into the world around me, I would write poetry, music, letters, sometimes I would just rip them up… but I could still get it out. But spoken language ISN’T a language, it is a modality of a language.

 

Children younger than 10, 5, 3, even 1 are being put into speech therapy, into AVT (Auditory Verbal Therapy) not to improve their LANGUAGE, but their SPEECH. There are “toys” out there to help a child learn where they went wrong in speaking, but this doesn’t equal having language.

why is this the image so many people want to see

rather than…

 

or this?

why is this what we focus on

rather than this?

because parents want their child to be normal… and to be normal, is the same thing as being hearing… and that is just a sad, sad thought. That this is considered more normal

than

Is it so important to hear your child speak rather than see their thoughts? Is it so important to hear your child tell you I love you mommy/daddy, rather than see them sign it? I think we should focus on language before it is too late, rather than words.

5 differences between my hearing aid and my Cochlear Implant

Ok, so, I’ve been activated for 48 hours now, and to make things simple I want to explain some of the differences I’ve noticed in the sound quality between my HA’s and my CI.

my hearing aid (Phonak Naída) on the left (left ear) and my Cochlear Implant (Cochlear Americas Nucleus 5) on the right (right ear)

1. The CI is much clearer.

I can only describe, with the high level of deafness I have achieved, the sound coming from my Hearing Aids (when I could still hear out of them) as muddy. Everything seemed to mix together, it was very hard to tell when one sound ended and another sound began. With the CI, it seems that things have… lines. I can tell where the sound of someone talking (even though the words don’t make sense yet) from the sound of the world around me.

2. Less low frequency but more high frequency with the CI.

with my hearing aid, I had a hard time, then an impossible time, hearing the high frequency sounds. Sounds like birds chirping, a flute or a piccolo, kids voices, for a long time they have been very foreign to me, meaning I haven’t been able to hear them. The f s th,  those are also  in the high frequency range, but in speech. My Audiologist turned down my high frequency for my CI, because those have been the longest for me to hear. With the hearing aid all the sounds were very low frequency, I was using sound recover to help try to bring things down for me to hear them, before all of my residual hearing ran away in the first place. With the CI it looks like the opposite effect, at least for now. Everything seems very high pitched, like I’m hearing… I don’t know, wind chimes or something. I know this will eventually level out, but it is rather odd to go from hearing mostly low frequency, to absolutely nothing, to mostly high frequency… my brain is still trying to wrap its head around it.

3. More things seem to make noise now

less things made noise with my hearing aids, especially the last year or so. I haven’t heard footsteps, haven’t heard blinkers, haven’t heard keys typing, haven’t heard… somethings people talk about all the time, the doorbell ringing, a chip bag, cars honking, doors opening and closing… but those things are starting to make noise now, at least for me. I’m not use to all the noise, and it can get a little overwhelming at times. I’m use to knowing when someone is talking by their lips moving, or my eardrums vibrating, but now i am hearing their voices, just not knowing what those sounds mean.

4. it doesn’t seem as loud as when I first got the HA, but there is more noise

I remember coming out of the room when I got a new set of hearing aids, and every thing was so… loud. Its not as loud with the CI, its not as distorted, but there is more noise. I don’t know if this will make sense to many people… but more noise doesn’t equal loud, its just more. I’m not sure I ever really got use to hearing from my aids (even though I used them for years), but when I wake up, put my CI on, its a bit loud, but my brain eventually (within the first 30 minutes) understands its not really loud. Life always seemed loud (when I could hear under 100 db) with my hearing aid, it didn’t matter, it never settled down. If my audiologist turned the volume to a point where it didn’t seem loud, I couldn’t detect speech, I couldn’t detect sounds at an “appropriate” volume… I couldn’t hear my own voice. With the CI, that is different. My job doesn’t seem loud, my home doesn’t seem loud, even my car, it doesn’t seem loud, there is noise, but it isn’t loud, and that is actually very nice.

5. I can’t zoom

One thing I got very use to with my hearing aids was the zoom feature. I could zoom from one side to another, in front of me behind me. This was nice in a noisy environment, this was nice when I was in the car, it was… nice. with the CI I can’t do this, at least not yet. This feature, although not a sound quality thing, is something I really did like, and something, hearing wise, I could brag about over my hearing friends. Noise that was coming in from one ear, would be automatically sent to the other. This was very nice when I was using the phone, I would use VRS (Video Relay) with VCO (Voice Cary Over), put my hearing aids in zoom, and then hear what the person was saying in both ears as well as be able to see the interpreter for the majority of my understanding. I can’t do that with my CI, I’m not sure if I will be able to do that with my CI… but it was very nice.

So far, I am really liking the CI much better than I liked my hearing aids, ever. I still can’t understand anything, but… that’s the differences I can explain after 2 days, later I should have more.

Wibbly-Wobbly Timey-Wimey

Its funny how weird time goes… how weird time progresses, how sometimes time speeds by, and how other times, it feels like it I’ve been thrust forward in time. There are also times where my life feels… Hazzey, foggy, like I know that I am the active participant in my life, but like I am looking at everything, milliseconds after it happens, and through a dense fog.

I honestly expected Friday to be the hazey day… with seeing my surgeon, getting told my final yes (and yes… it was a final yes! Just waiting on insurance now!)… but that day, Friday, is crystal clear, the little details of my life, they are clear as a bell. I remember waking up… being so scared I was going to be late, not being sure of how traffic was… and then going over in my mind the days schedule. I remember getting in my car… the  feel of the vibration under me… and feeling lucky that traffic wasn’t bad, but then finding the hardest time to a parking spot. realizing the elevator was broken, but knowing I would be fine with the bridge on my way back. Going into the office, signing in… and not being able to understand a word of what the woman at the front desk was telling me… this is when the slight panic set in… what if I wouldn’t be able to understand the doctor… what if I made a fool out of myself, what if I didn’t understand things, so my surgery was off… then I remembered… they were suppose to have an interpreter show up for me… the panic settled a bit, I apologized to the woman and told her that as soon as my interpreter showed up, I would be able to answer her questions, but because she has braces I wasn’t able to understand a word lipreading, that I was just going to sit down until my interpreter showed up. She kept talking, and my mind was thinking of the worst possible scenarios… oh the interpreter wasn’t going to show up things like that, which for someone who is Deaf and uses ASL as their main form of communication, and for something as huge and as potentially scary as this… it was horribly frightening. I sat down, a woman walked in the door and was pointed towards me, she started signing… this is when the panic completely subsided… I realized I would be fine, I had my great comfort, my great understanding, my language with me, and that is all I needed! As it turned out the woman was trying to ask me about pharmacies, and was telling me my interpreter was here, just in the bathroom… I got absolutely NONE of that… if I had to put words or sounds to what I got, what  I understood, it would be… “ajdsflkzjfka dhglkafdg”

So then I filled out the paper work the impossible lady to lipread handed me, and we waited… and waited and waited. Finally, almost 30 minutes after my appointment time, I was asked to come back. They told me that normally… they would redo the testing that had been done the last time I was there… but because of my wonderful responses (or lack there of) they saw no reason to torture me any further with that… but they did need to do a tympanogram, which feels kinda odd… but I’m use to them. They push air into your ear, and measure your ear drum responses.  Ideally… it should look something like the middle one (and that is what my ear ALWAYS looks like, unless i am very sick)…

so after that, they sent me back out into the waiting room… to… well as the room imply… wait… and wait.. and wait some more. Finally it was my turn to go into the office with my surgeon… and to my horror… there was a chair in the room that made me want to run away and cry… it looked like I was in a dentists office (and for those of you who don’t know… my biggest fear… more than spiders, more than ANYTHING [except loosing my family] is DENTISTS)… I almost started hyperventilation…  but I calmed down… as soon as my interpreter started signing… and I remembered… this doctor, he is not a dentist… he is not someone who likes to cause large amounts of pain to someone while they are still awake… he is not going to drill into my teeth at all (just my head). After a long conversation about how wonderful my CT scan looked, and the request at me getting blood work done to figure out if there is more of a reason my hearing jumped off a cliff in the last year… he said yes. He told me to get on the schedule, then found out I am already on the schedule, and was thrilled, because now… now my surgery will be in July… activation will be in July, instead of surgery being mid August (where they are at now), and activation being September, and me having to miss school… so forth. So I have added more to my list of things I need to do… including, getting a pneumonia shot… that somehow will prevent against meningitis…  and getting the blood work he requested (both of these are going to be done this Weds).

I also got new impressions for my ear molds taken on friday… or shall I say ear mold (because my right ear is going to have a CI, and not a HA soon), which hopefully I can pick up weds as well… not too sure on the time frame there.

But like I was saying… I remember almost every detail about Friday… but then it is Saturday that turns into a Haze for me… I still remember it… I still worked… I still did everything I was suppose to… it was just… hazey… I felt like I was living in a fog… the day flew by… then slowed to a crawl… and repeated and repeated, and repeated.

Sunday, we went to Denver Pride! It was fun, it was hot… oh… and I forgot about this magical thing called sun screen…  so I got burned. We walked around… I got told that I look like a singer… informed them I was deaf, then found out one of the people in the group, she is a CODA, actually… a first generation hearie, so we chatted for a while, and it was absolutely wonderful to be able to sign with someone… but when I came home… I was whiped from the day. It felt like we had been there for hours upon hours… when really, it turns out, we were only at pride for a little over 3 hours… not the 6 it felt like.

Time… I know I’m going in circles… it feels like I have been stairing into this…

if you know what this is… you get a virtual cookie!!

and that time is all wibbly-wobbly… timey-wimey… nothing is liner, but that… space and time is folding into wacky shapes, so that I never know what is happening next… Hopefully I will get MY computer back soon, and things will be better… and I can actually update after something happens, rather than having to wait a while… though Friday’s memories are still fresh in my head… with time being silly… I don’t know how long they would have stayed like that.