Heart-Stopping Moments Friday, April 3, 2009

Had my appointment with Catherine today.  And we came up with a plan of action.

1. Borrow the battery from them, to see if it reduces the itching/redness, and if it’s my batteries that are causing the problem.
2. If that doesn’t work, try out a body processor.

So that’s where we started.  We went into the CI booth, plugged me into the computer, with the intention of changing my MAPs because I cannot handle the intensity of the old MAPs after a year of inactivity.

So here I am, hooked up to the computer, watching the screen, and the first thing I see is red over the internal part.  Everything was recognized and green, except for the internal implant.  Checked it again, made sure everything was connected properly.  No luck.

It was time to call Advanced Bionics for troubleshooting.  Catherine found the “dummy” internal parts, and tried it with their processor.  Everything worked.

I held my breath.  This was not looking good.

We took my processor and attached it to to the dummy.  It worked.

I started to cry.

Crying because my internal processor wasn’t working.  Crying because at the thought of having to go through a third surgery in less than 3 years.  Crying because maybe that’s why my CI wasn’t working back in January.

Catherine picked it up to take it off, and then the computer recognized the internal part!  It was a loose wire.

Talk about a heart-stopping moment.  A huge sigh of relief.

So now I’m sent home with MAPs that are more than 100 points below where I was, and with my IDR reduced to 60 from 75.  One has Fidelity 120,and the other doesn’t.  I’m going to try both, as Mandy said in her last notes that I may do better without Fidelity 120.

30 minutes into wearing the CI, my ear was red and itching, and Catherine confirmed it by seeing that there was a red spot where the CI was.  So now it’s time to find a solution.

It’s amazing how quick the brain adapts to using a CI after not wearing it for so long.  I’m missing it…..and feel like I’m re-experiencing activation day all over again…in the sense that I’m discovering sounds that my hearing aid definitely did not pick up on.

9-Month Test Results Monday, May 21, 2007

May 18, 2007

 

Overall, I’m rocking the CI with an 20-30 dB hearing loss. The little circles indicate that I can’t hear ANYTHING in my CI ear without the CI. It’s kinda scary not being able to hear anything, but only feel it when it gets to that loudness. Mandy circled it to indicate where I could first feel it. Being completely deaf with no response, scary scary scary. The most exciting news came with the test results, especially with the Early Speech Perception Test, which, in Mandy’s opinion, is the best indicator of how well the CI is working, because it tests similar words, with different vowels and consonants.

	Fall 11/13/2006 (~3 months post-activation)	Spring 05/18/2007 (~9 months post-activation)
CID Sentences List #8	30%	70%
Cochlear Screening Level D (Top Level)	31/36 (words) 8/10 (sentences)	33/36 (words) 9/10 (sentences)
Early Speech Perception Test Category #4 (Top Level)	5/12	11/12

Here’s the link to compare with the test results from 1-week post-activation. Huge change.

NOW CAN I PLEASE GET MY HARMONY??!?!?!?!?!?!?!?!?!?!?!

The Airport Announcements Sunday, December 3, 2006

Saturday, I flew back to school. I had a nearly 2.5 hour layover in Cleveland, Ohio. While waiting at the gate, I was approached by a deaf young man, John T., who also goes to school with me. Felt like I had seen him before, but we found out we had some mutual friends in common, and figured that’s how we probably met. Gotta love the deaf community.

Anyway, the gate I was at, had multiple planes at it (the kind where you have to walk down the stairs and out onto the tarmac). This lead to staggered boarding, as they were boarding the multiple cities at different times.

What I was so excited about was while I was engaged in a conversation in sign, I heard them saying word-for-word over the PA, “we are now boarding for Rochester, New York” and I said to my new friend, “that’s us!”

It was so weird to be able to be engaged in conversation in a noisy airport, and hear the announcement word for word in the background. And at the same time, absolutely THRILLING to be able to understand it with the cochlear implant.

Flying was much better this time around, but my ear still doesn’t like the pressure on it. But I didn’t feel dizzy/off-balance after getting off the plane, and going through the security pat-down was quick, compared to last time I flew out of Phoenix.

I forgot to mention in yesterday’s entry that Megan has been listening to Christina Aguilera way more than I have, and every time she hears her music, she thinks of me. I infect people with the Christina goodness!

My focus since I’ve been activated was to listen to a diversity of music, mostly my favorite songs, to retrain my brain to associate that pulse with that sound. Now that I’ve trained my ears with different music and it is starting to sound natural, I may start listening to Christina’s new stuff more.

I think I didn’t want to corrupt her beautiful voice with the CI until I could get a sense of normalcy with music.

Megan also said that music will be so much better with the Harmony, and both she and Dr. M can’t wait to see what I think of it as compared to the Auria, since I’m a music fanatic.

I also learned that I have to wait for a letter from Advanced Bionics, that will explain about how to get the Harmony, then I have to call and order it, then bring it in to program it. Just a month to two months to go!

A lot of people are getting implanted in January, because they want to get two Harmony processors. I’m glad I got implanted when I did, because I want to enjoy the Harmony when it’s turned on, now that I’m doing reasonably well with the Auria.

Ok, 6:35 am, and I should go do something productive before heading out to the Toy Fair and sushi with my friends! A new sound adventure awaits, and this time it’s one of my favorite things…TOYS!

Tape, Paper, Scissors Tuesday, November 7, 2006

Today’s in-class demo was cool. Not because of the techniques we were learning, but because of what I could hear. I was enthralled with the discovery of different sounds.

When the room was silent, from a distance of 15 feet or so, I could hear the “thrrrp” of the masking tape as strips were torn off. The “nnshhhhhttt-nnsht-nsssht” of the scissors cutting through the posterboard. And the “crrkthhttttt” as the two halves separated from each other.

I’ve been able to hear it with the hearing aid, but only if I was the one who was wielding those items and making the noises. The tape was especially cool, because I’ve never heard the sound of it ripping off. Pulling it off from the roll, yes, ripping off, no.

I couldn’t hear it with the HA from that distance, but I could with the CI, and the sound was much more detailed than I remember with the HA. I almost wanted to ask him to keep going with the different tools, because I was having so much fun listening to it.

I did notice that the CI did not pick up the squeaking of the chair that Sam was sitting in, but the HA did.

I saw the doc today about the two episodes of the room-spinning, and he said to keep an eye on it. There are so many factors involved in it, that it’s hard to determine if the CI has any effect on it. The fact that the episode only lasts less than a few seconds, and has no precursor to it, doesn’t help much along with the fact that I do not have an history of passing out.

If there was a problem with the CI, it’d be more likely that it would be of a longer duration (like after my 1st surgery). Because the eardrum looks fine, there’s no change in listening, and the CI is still working, it’s hard to say if the CI has anything to do with it.

It could be stress. It could be eating on an irregular basis. It could be lack of sleep. It could be for totally random reasons.

He did say that I may I need to get on a regular sleeping pattern for the week AND the weekend. That should help with my balance system to keep it in check. How many times have I heard that?

One thing that felt so weird during the exam was when he was pressing on the internal part. I could feel my eardrum moving back and forth. He said it was because he was increasing the pressure in the inner ear when he was pushing down on the implant.

Hockey and Fall Leaves Saturday, October 21, 2006

Mandy gave me more Halloween goodness for therapy. Some of the Halloween words are tricky to understand. This time I got to do a word search, and I had to listen and find the keyword in the sentence. Mandy was teasing me with the word “hoot hoot” because she picked a few extra words to repeat at the end of the puzzle. It better not take the place of “mango”, which I haven’t heard for awhile, thank goodness.

I’ve gotten positive responses on my statement that was read on NPR. My mom forwarded the email to her coworkers, and I’ve heard back from them (the entire group is awesome, and have been supportive of my mom/me throughout this journey). I’ve also heard back from the faculty/staff here at school. One teacher emailed me if they could use my statement for a class project that they are doing on the topic about the situation at Gallaudet.

Our school’s first home Hockey game was at 7 pm, and it was practically sold out. Here at this school, the hockey team is the equivalent of any big-name football university. My friends and I sat with the Corner Crew (slogan: we’re loud and obnoxious at hockey games).

On the other side of the aisle was the band, so it was fun getting to listen to the band play the instruments, instead of a sound file on the computer. I really enjoyed listening to them play. The one sound that drove me crazy after awhile was the cowbell that somebody in the CC had. Listening to them bang on it repeatedly throughout the game, to set the beat for the game/crowd, was annoying after awhile.

Then there was some kind of noisemaker horn, three rows behind me, that tooted out the number of goals we had scored, and a long toot for the next one to score. We won 8-3, so I heard it quite a bit last night.

This year, with the CI, it was easier to follow along with the CC-patented chants. Some of the simpler ones, I was able to understand just by listening, and able to jump in immediately. A lot of the cheers I don’t know, because I wasn’t able to understand them last year.

Jen A., some girl behind me, and I nearly got decapitated by an errant hockey puck that was hit by the other team. My back was to the game, as I was talking to people, but I ducked just in time. It was too close of a call, eek. I’m not sure if I heard the commotion of the crowd, or if it was some developed sixth-sense of mine warning me of danger (due to deafness, you tend to develop an environmental awareness, even if you’re not consciously paying attention to your surroundings). Anyway, there were a few high-flying hockey pucks last night, so I should have known better.

After the game was over, I went back to the dorms with Jen A., and hung out on floor for awhile. Realized that even at night, with the doors closed, and not a lot of people around, the floor is still not quiet. I headed home around midnight. Midnight is a wonderful time to go for a walk, as it’s relatively quiet on campus.

The leaves have started to really shed around here, creating a thickly layered carpet of Autumn’s death. It was fun hearing the crunch of the leaves underneath my sneakers. I could also hear the slight scrape of the leaves against the asphalt, as they were kicked up by the toes of my shoes.

Then there was the tiny skitter-whistle as they scurried across the pavement, held ever so slightly aloft by the undercurrent of the wind swooping across the ground. I wanted to run around and experiment some more with the leaves, but I was turning into a human popsicle, and could only think of getting warm and toasty. I will have to do that soon before they’re raked up by maintenance.

In the past, I was able to hear the leaves (just barely) with the HA, and only if they were really stiff and on a hard surface, or if there was a ton of them, forcing you to wade through them. What a difference it makes.

 

Me and Jen A.

 

Let’s Talk About Tolerance…Or Rather, The Lack Of It Tuesday, October 17, 2006

Today, I had a really low tolerance for sound. People’s voices were driving me nuts. My tolerance level was probably not helped by the ADHD, as we’re adjusting medication doses for me.

Just sitting in class and listening to people talk, some voices were gravelly, and others were scratchy. It was the equivalent of what I would imagine to be nails scratching on a blackboard resonating through my head, and I just wanted to shut the sound out and have quiet.

This afternoon, I had my hardest therapy session to date, due to our activity that Mandy had today, and the new subject content. But first, I was glad I was able to vent my concerns and frustrations with the whole Gallaudet protest to Mandy, because she understands where I’m coming from. I know my friends and family mean well and want to understand, but I feel like they don’t understand why people are upset over it and the significance of the protest for the deaf/Deaf community.

Nor do they understand how I feel being an oral-deaf, mainstreamed kid, and the viewpoints/attitude of the Deaf community that have been stirred up by this recent debate about audism/deafism, and are being somewhat slowly translated over here to this campus, that it’s starting to become more visible of an issue now.

Basically, whatever the outcome of this is, it will have an effect on the intercultural relationships between people in the deaf community, and are best expressed in Allison Kaftan’s post The Worst Thing To Come Out Of This Mess. Fernandes may have brought it up, but the fact remains that that unspoken charge and hostility has and always has been an undercurrent within the community. She just put a name to it.

Anyway, therapy today, Mandy gave me clues to words in a crossword puzzle, but they were related to Halloween. These aren’t common phrases and sentences, so it was a bit of a struggle. That, and I think my brain was being cantankerous today.

Mandy noticed that with me, I am able to reproduce what the given sentence sounded like to me, but it doesn’t make sense. She said that it reminds her of the game Mad Gab.

Here’s an example of what a sentence to me sounds like to me with the CI, and without lipreading or any support.

Hears: A klute toothy puss hull.
Actual: A clue to the puzzle.

The key is in trying to make my brain put the sounds together to form words that make sense when put together.

In the morning, I had a headache while in the ESP lab during our class demo, and having to sit on the floor and look up at the interpreter. So I just stopped paying attention because the strain on my neck plus the lighting and low noise tolerance was too much. I spent some time just listening to my teacher talk, and picking up words here and there.

It’s still a world of garble and gibberish, but the fact I’m able to pick up a few words here and there, makes me pleased.

well, that certainly wasn’t what I had in mind when I said I wanted to understand speech. Saturday, October 14, 2006

Well, that certainly wasn’t what I had in mind when I said I wanted to be able to understand speech with the CI. I most certainly didn’t expect to be able to understand that phrase 2 months after activation. Being able to understand “you’re a bleeping bleep” in the background at a party, even with the music playing and people talking, is amazing. Course, it is a phrase that I hear frequently, so it wouldn’t be that difficult, but still… Oy.

all of us (minus 2 people from the picture, and a few who couldn’t come)

My friends were amazed when I turned around from the kitchen where I was doing stuff and asked “who is the bleeping bleep?” (which wasn’t directed at me, but rather an “-ism” one of my friends uses for everybody) and realized that I understood that. There were a few more of those moments during the night, where I was asked something, and responded back correctly, either with an answer or doing what was asked, all without looking at them or lipreading.

The whole concept of being able to understand without actively listening, is very strange to me. But I get rewarded with those rare moments that I understand words or sentences, and reaffirm my faith in the CI.

Showed up on Friday, only to find out from Don that Mandy is sick so no therapy. She didn’t look like she felt well on Thursday, so I hope she feels better soon because it’s not fun to be sick, and because it’s always awesome to see her. And she has a surprise that she is working on for our sessions, so I’m eager to see what she has come up with.

Had speech therapy with Karen on Thursday, and she had a new activity for me. She will ask a question, and I have to answer it, and then have a back-and-forth conversation with her. This allows me to practice listening, and to work on my speech rate, and using good speech while talking. The majority of my errors come not from when I’m reading the word/doing drills, but rather from being spontaneous. This is going to be a lot of fun, I’m excited.

She also forwarded me an email with the listening therapy websites online, and it is comprehensive! I need to get internet at home, so I can use them on my computer, because the Macs at school don’t seem to like the files, as I discovered on Thursday.

At 2 pm, National Public Radio did something I’ve never seen before. They had live captioning on the web for a story that was being talked about live on the radio. The subject matter was the October 12, 2006 – The Evolving Debate Over Cochlear Implants as well as Deaf Culture in America: As Culture Evolves, The Questions Change, and they encouraged deaf people to call in. They were cool working with the intepreters and relay operators, even though radio is a fast-talking medium, attempting to squeeze many words into a short amount of time. Now if some people in the world took the lead of NPR on this broadcast, life would be good.

Don’t forget to read A sampling of comments from the audience members. Be sure to read about the one titled “Social and Emotional Impact of Oralism”, as it is a topic I am very familiar with, and strongly support.

I would have called in/listened during those shows, but I was at work.

this has not been a good week Friday, October 6, 2006

This has not been a good week. I’m still battling the exhaustation that has plagued me since last week, and therefore haven’t done much in terms of recording my experiences, as I use my free moments to nap or to just relax.

I canceled my Thursday sessions with Mandy and Karen, just so I could catch up on rest and take a break from this constant assault on my senses. And Friday with Mandy has been canceled due to her going out of town for class for her doctorate’s. So I get an extra break until Monday, when she wants to do another hearing test on me to see how the CI is doing.

I’m now thinking that this extreme tiredness is mostly from learning how to listen, a cumulation of the last 2 months (Saturday marks the 2 month anniversary of being activated) have taken a toll on me, combined with the daily ebb and flow of everyday life. (and it can’t be mono, because I’ve already had it, as one person asked me). I worry some people due to my being very pale, but that’s how I am when I get tired/sick.

I come home from school/work and usually collapse on the futon, often falling asleep with my CI on or until the battery dies and I relapse into my world of silence. The news plays in the background, and it is there in the haze of my sleep. It is a weird sensation to be “hearing” in your sleep, after being deaf since birth. I don’t know how to explain it, but the sensation of “hearing” is dramatically different from being deaf in your sleep. And it’s not very restful. Funny how something that you’ve done every day can dramatically change for you, like a new pair of shoes when your old ones have molded themselves to a perfect fit of your feet.

Anyway, I hope that my body and brain will magically find a way to re-energize itself…quickly, because this is not the time to feel like I’ve been flattened by a steamroller (and I don’t mean you, Jen!)

So that’s the update, as two old friends of mine, that I haven’t talked to for awhile, have asked me today for an update on my “hearing”.

Now What Has Malfunctioned? (and Adventures in Sinusland) Tuesday, September 26, 2006

Part #: CI-5304-313

HR90K HP Beige Kevlar

Malfunctioning product must be returned to Advanced Bionics within 28 days of replacement product shipment or it will be invoiced.

I got this email from AB’s product team and my first thought was “WHAT? What’s malfunctioning now?” (and freaking out, because after the problem with the surgery, I figured that would be the only hiccup in the road, and it has been smooth sailing since.)

I was so confused, because I (or Mandy) haven’t talked to AB about any malfunctioning parts with my CI. I don’t know if Megan has done anything, but I’m sure she would have told one of us if she had been in contact with AB.

Needless to say, I was bewildered upon receipt of the email (and had almost marked it as spam mail, but something told me to read it). I tried to call and find out what was going on, but it’s past normal operating hours, so it will have to wait till tomorrow.

Because I have a burning desire to know instantaneously, I googled it and the closest part # I can get for that is the Auria headpiece. But there’s no mention of CI-5304-313 anywhere on the website, nor does it match with any of my other accessories.

Examining the invoice closer, I’m wondering if this “HP” is the acronym for the new Harmony Processor, which is the 120-channel processor. And with KEVLAR? Does this mean I’m going to have a bulletproof ear? (remember the mythbusters episode where they tested the stopping power bullets going through everyday objects like a deck of cards, a book, etc.?)

According to the speculation and rumors from professionals who are close to the Harmony processors, and from AB’s releases, it isn’t supposed to come out until at least November.

But if that is the case, AWESOME. And then I can pester Mandy until I get my CI to sound perfect with the music!

Unfortunately, it’s being shipped to my house instead of to me at school. Drat. *on pins and needles to find out*

Jen A. came with me to see the ear doc this afternoon (and is the first friend that has come along to anything related to the CI, so yay Jen!) Dr. D turned out to be the same doctor who said that “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. It was great seeing again, as I’ve only met him once, and being able to say “look! here I am! I did it!”. I was amused because Mandy introduced me to him as “my prize student”.

Basically, Dr. D says instead of sinus problems, I could be having a problem with my jaw, leading to facial pain with swollen sinuses from allergies. Common medical thinking is facial pain+swollen sinuses = sinusitis, treated with antibiotics.

He also mentioned that my “off-balance/dizziness” can be a result of my jaw being asymmetrical (which was a problem when I had braces, and was supposed to be corrected). The dizziness just happens to be aggravated by the CI, and/or being sick, stressed, or not getting enough sleep. But overall, my scar and everything looks good.

*mind-boggle* I learn something new every day, which defies conventional thinking.

And today, we did a balloon-popping demo in class. I couldn’t hear it with the CI, but my hearing aid did.

being sick sucks

So, not even 2 months after having the 2nd surgery for the CI, I now have been exposed to some kind of viral flu-like sickness that has been spreading like wildfire, so I get the lovely sweats and chills. But I’m technically not “sick” since I don’t have a fever (taking my temp via mouth has NEVER worked on me).

So, the only physical symptoms I have are on the right side of my head. I have a swollen right sinus, and my eardrum is “sucked back” instead of bulging outwards from the pressure in my head. I have a headache around my ear/the front of my head/face. As for blowing your nose, you think they tell you not to do it after surgery, I now wouldn’t recommend it 2 months later.

In addition to all that loveliness, the dizziness is back…WITH the rushing/roaring noise I haven’t heard in more than a month.
Joy. I just love being sick, and being sent home from class.

Mandy and I didn’t do much today, but she narrowed down where I need to work on listening. So, P, B, G, and K, along with the vowels, is for listening practice. I do have to say I was amused when I thought the combo was “pee-yew” and didn’t want to say it out loud.

There’s nothing like a steaming cup of Tazo Passion Tea to soothe you. After that’s done, I’m off to attack my head with the Neti Pot and go to bed. Hopefully tomorrow I will be all better. The sickness needs to die.