Deaflympics

Did you know there’s a Deaf Olympics? I didn’t realize there was a Deaflympics until a couple of years ago.

It’s in Taipei this year. Check it out.

http://www.usdeaflympics.org/

Gymnastic Training Poem

I did gymnastics for a few years as a kid and still enjoy watching gymnastic competitions on TV. Every once in a while I youtube gymnastic montages for the heck of it. 🙂

I ran across this poem last year. It’s true for life in general and not just gymnastics. It applies to so many different aspects of my life right now especially with this long plateau I’ve hit with my CI.

There is a video someone made with the poem.
http://www.youtube.com/watch?v=XWjuYYJDXy4&feature=related

I’m not sure who wrote this poem.

“Patience is a man’s greatest virtue,
or so the saying goes.

A gymnast must have said it,
for a gymnast surely knows!

That in this funny sport of ours,
discouragement runs high.

And even the very best will find
this virtue has passed us by.

When hands are ripped and throbbing,
when every muscle’s sore,
will a gymnast still have patience
to limp in the gym for more?

When you’ve lost old moves
and progress seems slow,
will you still have faith in better days,
and not feel sad and low?

Can you admit your frightened,
yet not give in to fear?

Can you conquer pain and frustration
and often even tears?

When someone else does something,
you’ve tried so long to do…
can you still be happy for her,
or just self-pity for you?

And when success seems far away,
your efforts all in vain,
can you force yourself to wear a smile
and disregard the pain?

If despite the pain and tribulations,
you can say “I won’t give in.”

Maybe some day you’ll discover
that its now your time to win.”

Gene Scene: From Silence to A Noisy World

A few months ago I was asked to write a short article for Sarah Lawrence College’s Gene Scene Newsletter. I wrote it two months after my CI was activated and found it very difficult to fit everything into a page and half!

I wonder how different it would be if I rewrote now at almost 5 months post-activation. Anyways, here it is.

From Silence to A Noisy World

I’m listening to my iPod while I type this so I won’t smash the noisy laptop fan into a zillion pieces. I’m also wondering why the refrigerator must hum. I cannot get over how noisy clothes are when walking. I smile to myself every time I listen to myself walking because I cannot get over how different it sounds with different shoes on different surfaces. I love the sound of water pouring into a glass full of ice. I’m not sure I like the sound of my voice. I find it distracting when I’m trying to work on something and people are talking down the hallway. It surprises me every time I hear someone blow their nose. I jump whenever a baby screams. I find the sound of rain soothing. I like guessing which cycle the washer is on from the next room over.

Oh yes, I should mention I’m deaf (props to Connexin 26).

I made the difficult decision to receive a cochlear implant (CI), which is somewhat controversial within the deaf community. Each CI user has their own unique experience because we all have different backgrounds and types of hearing loss. I fall into the category of those who may not benefit as much from a CI as others. It will be at least a year or two before I have a good idea of how much a CI will benefit me.

I started the CI evaluation process in January and had surgery in March. During the whole process, I could not help but wonder why I was I willing to take surgery-related risks for an elective surgery when I was already healthy and happy. Some CI surgery risks include taste change, facial paralysis, meningitis, vertigo, device failure, and balance problems. On top of all the risks, I knew there would be a good chance I would lose all of my residual hearing which meant I would never be able to wear hearing aids in the implanted ear. I spent years learning how to identify environmental sounds (e.g. doorbell, phone ringing, etc.) with my aids. Why was I about to undo years of work and training all for something that may not benefit me? I still cannot fully explain why, but knew this was something I had to do for myself.

Let’s fast forward to surgery day. As I was getting ready to be wheeled into the surgery room, I could not help but think I must be crazy to let someone I barely know make a tiny well into my skull bone and attach a foreign object to that bone. I was letting this person drill a small hole into my mastoid bone and cochlea. Thankfully, surgery went well with no complications and I was sent home with painkillers the same day. Little did I know that the surgery itself would be the easiest part of this journey.

Fast forward two and half weeks after surgery to activation day. I received the external processor which processes sounds and transmits sounds to the implant. It was also the first time I heard with the CI. The experience was far from a pleasant experience. I thought I was going to pass out and I felt nauseous the first few minutes I heard with the CI. It was just such a shock to my body and my poor brain, which now had to adapt to hearing.

The first two weeks after activation day were awful. I should explain that I have always had a tiny amount of residual hearing in the low frequency range but none whatsoever in the high frequency range. I had never heard high frequency sounds until activation day. All I could hear was this constant high pitched sound that made me want to take the external processor off and throw it through the window and then run over it with a semi truck. I referred to the CI as my personal torture device those first two weeks. I went from being able to easily identify environmental sounds (with aids) to not being able to tell the difference between someone talking and a train. Everything sounded exactly the same those first few weeks. It takes lots of time for the brain to learn how to adapt to hearing. The first month was rough and overwhelming, but in the long run, I am glad I stuck with it.

A few weeks after activation day, I had my first sound booth test done with the CI. My residual hearing audiogram shows I have bilateral profound hearing loss and my hearing aid audiogram was similar to someone who has moderate hearing loss. My CI audiogram almost falls into the “normal” hearing category. This does not mean I can pick sounds out, process sounds, and identify sounds like a hearing person can. It means I can hear most things at almost the same dB levels as a hearing person can. I’m light years from learning how to distinguish different speech sounds and many environmental sounds. When you think about it, we don’t come into this world being able to understand spoken language; it takes babies, toddlers, and children years to develop their language skills. My “hearing” is only two months old even though I am an adult.

The world as I knew it for 25 years has been turned upside down. Every day is a surprise. I am slowly learning to work my way though this huge tangle of sounds one sound at a time. I have never once regretted my decision and am looking forward to finding out what the next two months has in store for me. I enjoy hearing new sounds. I also enjoy being deaf. I am and will always be deaf regardless of how much I learn to hear.

The newsletter is at: http://slc.edu/graduate/programs/human-genetics/newsletter/index.html

Which Is More Overwhelming: Hearing or Silence?

I’m not sure which is more overwhelming.

The first 3 seconds when I put the CI on and I hear all these sounds OR the first 3 seconds when I take the CI off and it’s completely quiet.

My Car Ate My CI

My car tried to eat my CI.

I had my CI plugged into my iPod and took it off to fix my hair before heading out to meet up with a few people. I was running late and had to bring several items out to the car. Of course I decided I would try to bring it all out in one trip….including my CI still attached to the iPod (I hadn’t put it back on my ear yet).

I threw all of the stuff into the passenger seat and then realized the CI was gone. It was gone only for a few seconds but it was one of those heart stopping moments. I looked around and quickly found it.

It was attached to the side of my car.

Oh the wonders of magnet and metal……although I’m glad I didn’t accidently end up testing the strength of the magnet by going 70 mph on the highway.

*note to self* When CI goes missing….check metal items first…..

Colorado Trip Part 3 of 3

Day #7: We headed to Crested Butte, a ski resort, to do some hiking. It was kind of neat to see a ski resort during the summer.

We hiked up the summit (12,171 feet) for a beautiful view.

After hiking we walked around town and got a bite to eat before heading to the next campground. We also saw a double rainbow….beautiful….

Day #8: After going to bed around 11pm-12am we got up at 3:30am (the stars were beautiful) to head out to Mt. Yale.

It was our first 14Ker (14,196 feet). Mount Yale is the 21st tallest peak in Colorado and the 44th tallest peak in the U.S. It was an amazing feeling once we made it to the top….such a beautiful view and it just made us feel like we were on top of the world.

Throw in a few injuries (me-serious case of blisters + loose kneecap, Dennis and Tara-ankles), asthma, limited amount of sleep, steep/rocky hike, and thin air all made for one tough hike. We all did it though!! I’m so proud of all of us!

Next time I think I will bring warmer clothes and gloves.

In case you’re wondering about the cookie picture. It’s kind of an inside thing. Tara and I ate cookies on the way up and we have pictures at certain elevations starting at about 7,700 feet (where our hike started at).

Hiking at 4:30 am. I actually found myself closing my eyes as we were hiking…that’s how tired I was. 🙂

And….we made it to the top!

We’re spelling out Yale in sign language here.

We look pretty happy here! 🙂

It was pretty steep…I don’t think this picture does it justice. You can see me and Tara slowly making our way down.

We made it back to the car early afternoon and headed to our hotel. We went out for dinner and headed to bed about 9pm even though it was the 4th of July. We were exhausted and wanted to be rested up for the long drive back to Kansas the next day.

Day #9: We dropped Mike off at the airport (he’s from Chicago) and made plans for future trips on our drive back to Kansas.

This was one amazing trip and I’m so glad I was able to go on this trip.

Labels

The deaf community is full of labels.

Too many labels.

Sometimes I don’t know which community is the most/least accepting…the deaf or hearing community.

Oh! So That’s How They Knew!

I wrote a couple of blog posts several months ago about how as a kid I never quite understood how adults knew when I was doing something wrong if I was in another room. I always thought if I couldn’t feel vibrations and if I couldn’t see it then it didn’t make a noise. For example it took me many years to fully comprehend that people can hear someone making noises in a room down the hall.

I never really quite understood why I would get caught opening a bag of candy in the backseat in the car. I knew why because it had been explained to me that when a person opens a bag it makes noise…but I didn’t really understand it because I hadn’t experienced it myself…so I would always forget.

I’m so used to finding myself looking like a deer caught in the headlight when I try to sneak food or something that I found it amusing when I caught someone! It was one of those…ohhhhhhh….so that’s how they know moments!!!! (“they”=hearing people)

So, I went camping with a group of friends this past weekend. We got to the campground and got everything set up. Then a friend, C, wanted some beer so I decided to tag along with him and another friend, D. I don’t like staying in the same spot when I’m in a new place. I like to get out and explore.

C got his 6 pack of beer bottles and we got back into D’s car. C asked if it was okay if he opened a beer bottle in the backseat while we headed back to the campground. D wasn’t comfortable with having a open container in his car so C respected that. We then drove back and as we turned into the campground area I heard C opening a beer bottle in the backseat and I turned around…and aha! I got one of those *deer caught in the headlight* looks. 😉

It was just one of those moments where I found myself reacting as a “hearing person.” It’s kind of odd to find myself reacting and responding to situations in different ways using different senses. It’s not good or bad….just different.

"Normal" Hearing Yet Deaf and 3 Month Follow-Up

Hearing people are naturally curious about how much I can hear with my cochlear implant.

It is a bit tricky trying to explain that I have an almost “normal’ audiogram yet I’m still as deaf as I was before getting the CI.

Yes, I hear more things than I did with hearing aids. Do I understand what I hear? No. Therefore, I have “normal” hearing yet I’m still profoundly deaf at the same time. I hear what most hearing people can but I cannot process the information. It is an odd feeling when I’m standing with a group of hearing people and I know I can hear a lot of what they’re hearing…..yet I’m still obviously profoundly deaf because I can’t process what I’m hearing. I hear and am deaf at the same time. Weird.

They need to invent new words for hearing because there are different meanings. One definition is when a person actually hears. Another definition is understanding and processing what you’re hearing.

I also realized I never got around to blogging about my 3 month appointment back in July even though it has now been 4 and half months since I got the CI. With hearing aids I could correctly identify 50% of words in a closed set list without lipreading. The audiologist was willing to repeat so I could listen more carefully and she went slower. At 3 months with the CI I could correctly identify 40% of words in a closed set list without lipreading. This time the audiologist didn’t repeat and went a lot quicker.

Things sound so differently with a CI than a hearing aid and I have actually regressed a bit. This does seem to happen with people who have similar hearing loss background as mine. I have basically had to throw out everything I knew with hearing aids and start all over again. I’m always reminding myself I have to listen in a different way with the CI than I did with hearing aids. Basically I’m still undoing 20+ years of tricks I learned to use with hearing aids.

I suppose taking into account the fact that I have never spent such a small amount of time with hearing people in my life until now and I had to start all over again with the CI…..that I should be somewhat pleased with the fact that I’m more or less where I was at with my hearing aid. At 4.5 months post activation I’m getting what took me many years to learn with hearing aids and more.

I haven’t had nearly as much interaction with hearing people as I did in school. This has really slowed my progress with the CI. I’m basically in the middle of a very long plateau. I can see myself improving a lot if I interacted with hearing people more. I think this will happen once I get a full-time job.

An interesting thing happened at my 3 month appointment. I asked if we could test to see if there was any residual hearing in my implanted ear. Most of the time people lose all of their residual hearing in the implanted ear. To both the audiologist and my surprise….I do have some residual hearing left. Mind you, it’s less than what I originally had. Going 3 months without realizing I had some hearing left in the implanted ear should give you an idea of how much hearing loss I have. I’m somewhat sure I wouldn’t benefit from a hearing aid in the implanted ear. I was right on the borderline for getting what I could from my hearing aid before the surgery….it was the most powerful hearing aid for my type of hearing loss and I wore it at the highest volume at the highest setting possible.

I didn’t get a new map at the 3 month appointment. I actually asked for it to be set on one of my older maps because the current map was just too high-pitched for me. My next appointment will be my 6 month follow up in September. I really need to figure out a way to make time to find somewhere to volunteer or to take a class so I can interact with hearing people more and hopefully get over this plateau. I’m hoping the 6 month follow-up will go a bit better than the 3 month appointment did.

Btw, is it just me or does your own breathing get on your nerves when you’re in a quiet room? 🙂

Colorado Trip-Part 2 of 3

Day #4: We headed to Gunnison. It was mostly a driving day….we did stop at several scenic points.

We got pretty close to an elk.

Day #5: Black Canyon (Gunnison National Park)

Day #6: We went on an all day whitewater rafting trip. I had never been rafting before but always wanted to give it a try. It was awesome! We went on a class 3/4 trip complete with a mini waterfall. 😉

To be continued…..