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So So Deaf that I Need a Mapping Session

May 18, 2011

I haven’t wore my cochlear implant for a month. It’s frustrating because I clearly need another mapping session. There are still sounds/things I can’t hear with it. I feel like there’s so much more background noise that I should be hearing with it and I’m not. I know this because I hear the background noise with my hearing aid all the time. So that’s probably why I haven’t felt the urge or desire to wear my cochlear implant lately.

A few months ago I lost an extra magnet piece that I had on my cochlear implant because of my hair. I need two magnets so my cochlear implant won’t easily fall off. It’s not fun hearing then all of a sudden I can’t hear anymore whenever I touch my hair or hug someone.

I also have a “special” direct connect cord that I can connect to my cochlear implant and plug in my iPhone so I can listen to music. I do this a lot at work so I pretty much only use my cochlear implant if I want to listen to music. Lately my direct connect cord has not been working. I have to wiggle it or have it placed in a certain way for it to work. So annoying that this morning I went online to buy a new cord. $25 for a new cord….okay, fine with me. But then I looked around into buying a new power gel (battery) because I should have four power gels but I lost one a few years ago. Each one of them only last 8 (or less) hours before charging again. So guess how much it costs for one power gel? $165! Being deaf is expensive. I didn’t buy it but I probably will need to later on.

Anyways, so this morning I called the doctor’s office who did my cochlear implant surgery back in 2006. I asked for a mapping session and they told me I need a referral from my primary doctor so I can have it covered by insurance. So I hope I can get this sorted out soon so I can get a mapping session done. I’d love to have a new map added to my cochlear implant so maybe I’ll be able to hear background noise and high pitch sounds.

Know how I know I can’t really some sounds that I should be hearing? Well, as I was driving home one day I turned my hearing aid off so I could practice hearing with my cochlear implant on only. I had the music blaring in the car then all of a sudden a car swerved in and cut me off. I yelled a bad word and then realized I couldn’t hear myself say the whole word. Instead I only heard myself say hole. So yeah, this is the story that pushed me to get a mapping session done! :)

P.S. You should go check out my friend, Sean Forbes’s music video (I’m Deaf) in sign language. Also check out the teaser of the new music video that’s coming out soon with Marlee Matlin in it (Let’s Mambo).


Questions about Being Deaf (Part 2)

December 13, 2010

[ Here is Part 1 if you haven’t read it yet. ]

I was curious about your cochlear implants.  When did you get them?  How do you like them?  And anything else about them a hearing person might not get.  – E

It was 2006 when I decided I wanted to get a cochlear implant after talking to some of my closest friends who have cochlear implants. The biggest reason that convinced me to get it the summer of 2006 was the fact that the surgery would be covered by my parents’ insurance and if I waited until I graduated from college then it wouldn’t be covered. We found a doctor and immediately met with him in Arizona and after becoming a qualified candidate, we scheduled a date for the surgery which was July 12, 2006. Some deaf people are not qualified to have the surgery. It all depends on the hearing test, speech ability and if they would benefit from it.

Some deaf people choose to get two cochlear implants – but I chose to only get one and chose the worst side (left ear) because I wasn’t wearing my hearing aid in my left ear anymore. It is important when choosing which side because once the surgery is done, there is NO hearing left at all in that ear. I even tried putting my hearing aid in my left ear a few weeks after the surgery and I couldn’t hear a thing.

I could not hear immediately after the surgery because I didn’t have the device. The cochlear implant has two parts to it. The doctor surgically put one part of the device inside my head then in order to hear I have to wear a ear piece (sort of like a hearing aid) to hear.

A few weeks after surgery, I went back in to have my cochlear implant turned on. I still enjoy wearing it from time to time mostly when I want to listen to music. I am trying to use it more since it really benefits me when I’m at work.

I hear a lot better now in terms of sounds being more clear… like birds chirping outside, laundry machine when I am in another room…. but most people often think that this means I can understand people now which is not true. Understanding people comes with practice and it takes time.

Are there different sign languages you’ve come across (I’ve seen two-handed and one-handed signing), and what are the big differences? – Emily

Yes, there are so many different sign languages all over the world. I grew up learning Sign Exact English (SEE) which my parents believed was the best way to learn how to speak and write English. Manual signs are used in exact English word order with all the endings like “ing”. When I was in junior high school, I met other deaf people who used American Sign Language (ASL). ASL is known for having its own grammar syntax that differs from English. ASL is actually more animated than SEE.

There are some signs where it requires two hands and some others don’t. Sometimes we get lazy and sign with one hand usually when we fingerspell words out.

You mentioned your sister has the same hearing loss, but your parents are hearing.  Is the cause of hearing loss genetic? If so, what are the chances of you and Tyler having a child with the same hearing loss, presuming it works that way? – Robin

I wish our family had a formal research done to find out how this occurred and what the chances are for me and my sister in the future. As far as we know, I’m the first deaf person on both sides of my families. Also because my sister is deaf too, it is obvious that both of my parents have recessive genes (based deafness).

So Tyler and I don’t know if he has a recessive deaf gene as well and because of that, we don’t know if it’s likely that we’ll have deaf children or not. I think it would be a fun surprise as we really don’t care if our children are deaf or not.

Is it ever difficult for you to keep up with movies/TV? Like, do you ever find that by the time you’ve read the captions, it’s too late to watch the picture, too? – Suburban Sweetheart

Not at all, because I’m so used to it that I don’t find myself reading line to line. It’s more like reading the captions while watching the picture. I have never found myself missing anything on television. Sometimes the captioning will get in the way like if we’re watching the news and there are headlines on the bottom. Usually when that happens, we’ll pause the show to read the headlines without the captioning in the way. I don’t even acknowledge that I’m reading the captions if that makes sense.

I find it more annoying when TV shows or movies are not closed captioned.  Or even worse…when the captioning is scrambled up.

What is the one thing that you wish that hearing people would do to make your life easier? Talk slower? Enunciate more? – Hope

Talk slower but nnooottt……tttthhhiiiissss….sssllloooowww. Sometimes I find it helpful when people do the obvious gestures while talking to me. Normally I can understand people but it is harder for me to understand people if they’re not looking at me, cover their mouths, or have a mustache, or talk through their teeth. I’m not afraid to ask people to repeat or write down what they said. I appreciate it when people do make the effort to make sure I understand!

Were you ever ashamed of it, like your sister seems to be? If so, what got you to embrace it? – Stephany

I wasn’t ashamed of my deafness. Although I was embarrassed to be seen signing in public or have people realize I’m deaf and stare at me. My parents would sign to me in public and sometimes I’d catch someone staring at us so I would tell my parents to stop signing. I got so tired of it that I started to stare back at these people who were staring at me until they stopped staring at me. I realize that they might be fascinated by sign language or the fact that we’re deaf but still it’s not polite to stare or at least don’t make it obvious!

I grew up being immersed into both the deaf and hearing communities so I enjoyed having a balance with both. My sister on the other hand didn’t have the same experience as I did.

We moved to Arizona when she was really young so she pretty much grew up mainstreamed in a hearing school. I think she has had more frustrations as a deaf person and because of that maybe she wish she was hearing so life would be easier for her.

Have you ever had an encounter with a hearing person in which the hearing person became annoyed because of your deafness? – Megan

I used to work at The Gap in college for 2 months (seasonal job) and this was the perfect place for people getting annoyed with me.

One day while I was folding clothes and putting them out, I thought I heard something over the music that was playing in the store so I looked around me and there was a woman behind me. She looked frustrated and said, “Hello!?!?” with a mean tone in her voice. I was quick to apologize and explain to her that I was deaf and could not hear her and asked her nicely to repeat her question. She rolled her eyes and looked around and asked if there was someone else she could ask because she didn’t want to deal with me.

A common thing that happened a lot when I was in middle school was a lot of my friends or soccer buddies got annoyed with me when I’d ask them to repeat, repeat and repeat what they were saying because I just wasn’t understanding them. The annoying thing was that they didn’t realize how annoying it was for ME to not understand and have them get annoyed at something I can’t control. They never went out of their way to write down what they were saying and instead would just say, “nevermind… it wasn’t that important”. A lesson was learned from that situation and now if I need to, I will ask the person to clarify what they said by writing it down on paper.

I hope my answers didn’t confuse anyone. If you have more questions, please feel free to comment and let me know. I’ll be more than happy to answer any questions you may have.


Common Questions about Being Deaf (Part 1)

October 18, 2010

Is Tyler deaf and how much can he hear?

He’s hard of hearing….but honestly I don’t know what he can’t hear. He can speak very well, talk on the phone and does not wear his hearing aid. When I wear my cochlear implant there are some things I probably can hear better & more clear than he can hear but still he can identify the sounds and where they’re coming from. A lot of times I find myself asking him what that sound is and he would tell me it’s the washing machine, birds chirping outside and et cetera.

Do you both sign all the time?

No, we don’t sign all the time. We both can talk and since Tyler can hear very well, I usually talk with him and he will talk AND sign with me. I love how I can easily talk out-loud in the dark and Tyler will understand me…but if he says something back to me, I usually don’t understand him. Sometimes we play a game where I’ll try to read what he is signing by putting my hands on his hands and usually that doesn’t work. If all fails, we use the light on our iPhones or just turn the dang lights on if it’s that important!

This is the same way with my parents too (they’re hearing). They both sign and talk with me but I never sign back to them since they can’t really read sign language opposed to being able to sign. I’m fortunate to have parents who know how to sign since there are a lot of parents that don’t know sign language at all. My parents learned sign language when I was younger and throughout the years some signs have changed and it’s my fault for not correcting them. So pretty much my sister and I have gotten used to their signs….they even made up some of them!

Your sister is deaf too?

Yep! We have the same hearing loss but she has had more practice with talking on the phone and lip-reading since she doesn’t really have any exposure to the deaf community. She uses an interpreter in school though.

She is totally the opposite of me when it comes to being deaf. She always has to have her hair down so it covers her hearing aids. She doesn’t sign that much and when she does…she complains that she can’t sign and talk at the same time. I’m hoping she will outgrow that phase and sign more and not be so ashamed of her deafness.

So you rely on sign language to understand people all the time?

No, not all the time. If i had a choice, it would be so much easier if everybody signed! I can still lip-read and hear when people talk to me. I may not understand everything that is being said and I will ask for clarification or to write it down. Some people I have no problem understanding at all since they’re easy to lip-read. It can get tiring sometimes since I have to constantly lip-read and hear to understand everything so I don’t do well in hour long group meetings.

With sign language, I can look away for a few seconds or think about something else while someone is signing and still understand what they’re signing.

Ask me any questions you may have or want to know about and I’ll answer them in my next post. Even if it’s something like, “can deaf people play sports? watch TV? sing?”