Spreading Awareness- That's Just the Way We Hear

Many of you guys have probably heard about Mel Paticoff. She's the creator of HearingExchange Teens on Facebook and the author of Sophie's Tales, a cute little book about Sophie, a dog who has a cochlear implant. She has several family members with hearing loss and is currently studying deaf education. For last year's Better Hearing and Speech Month competition, she created a music video with her family called That's Just the Way We Hear. It was to the tune of the Jonas Brothers' That's Just the Way We Roll, and won first place in the contest! It even has captions, so that all of its viewers can fully enjoy it. Here is the video:



DoSomething.org is holding a Battle of the Bands competition to fight to keep music in schools. For this competition, Mel and the rest of her crew decided to remake the video.  Here is some info about the video included on their Battle of the Bands site:
Why is music education important to you? 
Music education is so important to us because it can make a HUGE difference in the lives of kids with hearing loss. If no one takes the time to introduce them to music, kids with hearing loss might not develop the same appreciation for music as hearing kids do, even with amazing cochlear implant and hearing aid technology. Yet, if they do learn to love music, it could improve their lives in a lot of ways! It will improve their auditory listening skills and social skills in big ways. We feel that this is definitely where music education money should be spent first...
Anything else we should know about your Battle of the Bands video project? We want you to know that our dream is to re-record the video with the Jonas Brothers. They have done a phenomenal job of raising awareness about different causes including diabetes, Down Syndrome, and "going green." We really hope they will consider adding hearing loss awareness to this list! It would be a dream come true to hear "That's Just the Way We Hear" played at one of their concerts, on JONAS, or on the Disney Channel. We also want to remind you to turn on the captioning! Unlike many videos found on YouTube, we took the time to make our video accessible to EVERYONE by adding captioning. Now everyone can understand our message loud and clear! 


And here's the new video (also captioned)...


In order for the people in the video to achieve their goal, we need to vote for their video! It's very simple, just go to http://www.dosomething.org/bands/entry/sophies-tales and scroll to the bottom where it says "Login to rate this video." and click on it. If you don't already have an account,  press "Create New Account" and come up with a user name and password. Once you do so, a confirmation email will be sent to you. After opening the link in the email, you will be able to rate the video at the bottom of the screen. Be sure to give it 10 guitars, and help Mel win the contest!

Mmm Hmm

Lately, my mom has been insisting that I need to go for a mapping for my CIs. I will admit, 95% of the time, she's right and just notices before I do. But, going every two weeks kind of gets old, and my allergies are causing my hearing to fluctuate a bit, so I'd rather stretch it out as long as I can. My mom doesn't seem to understand this, so I asked her why she and my dad won't go to the audiologist to get their hearing checked, since they don't seem to be hearing too well themselves. My mom told me she was hearing just fine, and that she can tell that I'm having trouble hearing. (which I'm not!!) Anyway, she called me up on the phone earlier today when I was home alone. The conversation went like this:
Mom: We'll be home soon.
Me: Okay.
Mom: What are you doing?
Me:Not too much, just getting some homework done.
Mom: (yelling) LESLEY, CAN YOU HEAR ME? I ASKED WHAT YOU WERE DOING. ARE YOU SURE YOU DON'T NEED TO GO FOR A MAPPING?
Me: I SAID I WAS DOING MY HOMEWORK!
Mom: Oh.. I guess I'm the on who has trouble hearing!

 (Source: http://www.zazzle.com/i_may_be_left_handed_but_im_always_right_tshirt-235180049815931732)

 

Perspectives

I can't help but occasionally wonder how big of a deal my hearing loss is for the people around me. Is it something that makes people act differently around me, or do most people not give it a second thought? This week I've gotten some insight on that, and thought I'd share.

A couple of days ago, we had (yet another) fire drill at school. The way they do fire drill at my school, is that regardless of what class the fire drill is in, you have to go and find your study hall class. Each class has a designated spot on the massive football field. However, I have absolutely no sense of direction, and when you're trying to find your way amongst 2,000 other teenagers, it can get pretty insane. So, with this last fire drill, I began wandering aimlessly around on the football field, hoping to see a familiar face. After doing this for a few minutes, I deemed the technique ineffective and decided to just stand in one spot, in hopes that I'd finally spot someone. No sooner had I stopped wandering than I saw one of my best friends (who is in my study hall) running up from behind me.  "Hey, we're over there (points to area across the football field). I tried screaming your name, but then I realized that probably wasn't such a good idea..." (implying I probably wouldn't hear it)

While I don't want my hearing loss to be the first thing people think of, I'm glad it entered my friend's mind in that situation. Occasionally, when walking down the hall (which, between the blaring music and the obnoxious kids can create a deafening noise level) a friend will start talking to me as I'm concentrating on not dropping the 30 pounds of books I'm carrying. I don't always hear them speaking initially, and will occasionally be given annoyed looks when the end of their oh-so-important story is met with a blank, confused stare. They're pretty good about getting my attention first, but I guess it can sometimes be forgotten.

This year in my AP Human Geography class, I've befriended the girl who sits in front of me. It's the only class I've ever had with her, but we've grown close since we take a lot of the same classes and have some of the same interests. When she walked into the classroom today, she looks at the board and groaned. "Look at the second bullet on the board..." she said in an annoyed voice. I looked up to see that we were going to have a pop open-note quiz over the video we watched yesterday.

I began to laugh.  She stared at me, confused, for a few seconds. Finally, it came to her and she screamed, "Ahh, no fair! I wish I had a hearing aid!" :P Someone else looked over, confused about why she would say such a thing.

"The video didn't have captions, so Mrs. B gave her a copy of her notes since she can't hear the video. She has all of the answers to the quiz!" Half the class then eyed me enviously, and I innocently shrugged. I was grateful that my teacher has finally gotten into the habit of giving me video notes.

Apparently no one took very good notes over the video. Our teacher loves giving quizzes over insanely specific (but pretty irrelevant) material. We got the quiz, and it only had ten questions, all of which were specific (some of the questions asked how much certain workers earned a day..what's the importance of that? The video was about China!) The sort of ironic thing was that a third of the answers weren't even in the teachers notes. (My teacher told me the answers to those.)

On a completely unrelated note, we had an orchestra competition today. All 3 levels of my school orchestra straight 1's (the best score) from all of the judges :)

Shameless Promotion/Request

Okay, faithful readers, you always come through when I need you to. Don't fail me now!

As most of you know, I'm assisting with David's Project and I've been pretty involved with the blog and Facebook page (there's a link to it on the right hand side of this blog). I think it's a really great thing, and if you haven't already submitted your story, do it! We're hoping to have the final site up by April 1st. The blog is not the website that we're working on, I realize that's a bit confusing. We've got a site that is currently being worked on by a web designer, and we've also received some great tips and ideas from the wonderful Rachel Chaikof. Her input helped us decide how we (by we, I mean the 5 teens with hearing loss that are helping to build this site) want the website laid out. One thing we've decided that would be absolutely wonderful is to have pictures of people with hearing loss from a variety of backgrounds. We're thinking a slide show of sorts. However, to have that slide show, we need the pictures from somewhere. That's where you come in.

Have any pictures of you, your child, infant, or teenager with hearing loss, and would like them to be featured on this new website? Please send them in!  Important details:

• You don't have to have a story to send in pictures, and you don't have to have pictures to send in a story, but both are welcome, either alone or separately!
• If you choose to send in the pictures, you  can send them to me at pinklam94@yahoo.com or directly to David at davidcluff2012@gmail.com,
• For any pictures you send, we request that you also type or write the following, just to prevent any issues should they come up, 

"I (your name) give permission for my picture to be featured on the website David's Eagle Project"

  I realize typing this seems pretty pointless, but we didn't want to make you sign some long liability/consent contract.I also want to make it clear that there are absolutely no profits being made off of this website, and any pictures you send will be used for the project site, and the project site only. We've got a lot of exciting tricks planned up our sleeve for this website, but it needs participation to be the best it can be! If you have any questions or concerns, feel free to contact either of us at the emails written in the 2nd bullet point.

Thanks for your help! Don't let me down ;)

the tinnitus that wasn't

My spring break is almost over. The idea of going back to school makes me start hyperventilating (I'm only exaggerating slightly.) I think I speak for all the students and teachers of the world when I scream, "IS IT SUMMER YET?!"

Anyway, I was home alone on this lovely spring morning, since my mom and sister had some college meeting to attend, and my dad had work. I'd just finished draining the Pacific Ocean taking a shower, and my dog excitedly ran up to me, with that I've-really-gotta-pee look in his eyes. My hair was wet, so my CI's were off.

I ran to the back door, with a smile on my face, laughing at the fact that I'm basically my dog's slave. As I shut the door, I noticed a strange sensation in my left ear.

My ever-present tinnitus sounded...different. Rather than the lovely chirping I'm used to, it sounded like a faint, high-pitched whining/ringing noise.

Yeah, I know what you're thinking. Whoop-de-doo. Bring out the marching band and parade floats. But, you see, when you've heard the same chirping for a year (it's been exactly a year and 2 days since my 2nd CI surgery!), it's a pretty big deal when it suddenly sounds different.

I briefly worried if that meant something odd was going on with my ear. No change is good in my book.  I rubbed my ear, to see if it made it sound different. It didn't. I shuffled away from the door, pondering this change.

That's when I noticed it getting louder. I realized the noise sounded oddly familiar...almost like the alarm for our home security system. No...it couldn't be! I went over to the alarm keypad to look at the screen. You know,  just to be sure.

I looked at it, only to be greeted with the words "ALARM. BACK DOOR OPEN"

I silently cursed my mom's fear of getting the house broken into, and quickly punched the 4-digit code that was engraved in my memory, while freaking out. The last thing I needed was the police coming over, with me (nearly) stone-deaf, dripping wet hair, and in my raggedy bath robe. I mean, isn't that how people get tased?

At that very moment, as if on cue, my mother and sister walked in, to see the horrified look on my face. My sister simply said "Wow, nice going." and walked away. My mom soon called the security people, and everything was settled and that all too familiar chirping returned.

Zach the Lhasa-Poo. He's not as innocent as he looks!

Don't forget to vote in the latest polls, found to your right!

Interesting Article

In all honesty, I'm about to go to sleep and barely skimmed the article. The first few sentences looked promising, so I thought I'd share :P

If I don't find it interesting in the morning, I just may take this post down...

Designing A Tool For Operations On People With Severe Or Profound Auditory Loss

Is it best to know?

I don't know what caused my hearing loss. I've had some genetic tests, and therefore I do know that it's not from Connexin 26 or Pendred Syndrome, which leaves roughly another million possibilities.

Growing up, I always seemed to have one medical issue after another. Whenver things were calm and healthy, an eerie "what's next?" feeling lurked over. Like now.. .Things have been going relatively well for the past year, with the exception of the complications I had with my second CI.

And sometimes, I sit and wonder. "What if.." What if the problems I have now turn out to just be the start of something much worse when I'm older? What if I have some rare syndrome or something? What if it's genetic? Do I want to know? What if my hearing loss was just caused by some sort of random mutation or from a medicine I took when I was younger? Would it really calm my fears to know that?

Or, even worse, if it's serious, do I want that to affect he way I view myself and color the way I live my life? Is knowledge really power, or is it just a weight pressing down on our shoulders? Are some questions best left unanswered, at least until the answers reveal themselves?

Obviously, I can't find out anything more, since all the tests have come up negative. And that kind of, sort of bugs me. I'm one of those people who needs information,  I have to know every last detail.

I'd love to hear the perspectives of others on this. Did you find out what caused your hearing loss through testing, or did you choose not to find out? Did you not do any testing, only to wish you had when other issues were uncovered later?

Nucleus System 5- My Experience

Well, I finally got my new processors on Tuesday. When they say it takes 6-8 weeks to arrive, they're not kidding! I did get pretty impatient, but the important thing is that they did come. Here are some pictures... *sorry for the blurry quality. These were taken from my phone, since my sister decided to steal my camera, even though she has her own....sisters!*

On the left if my pink Freedom (the beige thing is the FM boot), on the right is my brown N5 with the pink cover.

Left---> Right Freedom, N5 with pink cover, N5 with blue cover.

Brown N5 on my head- side view. Please excuse the messy hair, I just put it up to take the picture :)

The remote...  I definitely think that's more of a personal preference thing. As someone who always has a cellphone in her pocket, it's no big deal for me to carry it around. It's pretty user-friendly once you take the time to figure out how to adjust all the settings. The only thing I wish they would add (possibly with future remote software upgrades?) is the option to have certain settings as "favorites" in the remote (similar to in a cell phone) that you adjust the most, making them quicker and more accessible to get to. Another thing is, it look like an Mp3 player. Or a cellphone. Or some combination of the two... What's the problem?

We're not allowed to use them in school, so I'm always completely afraid I'm going to get yelled at for having my "iPod" out in class, or even worse, have a teacher not listen to me and take it up. I don't adjust the settings too much, but I try to do it pretty discretely when I do- so far, so good.

AutoPhone- Would someone please enlighten me how the darn thing works? I know for a fact I have it, because my audiologist knew I wanted to try it out, and I saw her check off the little box for it. However, it's failed to come on every single time I've been on the phone (and I've used three phones- my cellphone, our landline, and my sister's cell). I  can hear better without T-coil than when I manually enable T-coil, so I don't mind it now working.. I just want to know if there's a way for it to work! My audiologist said it's voice activated, so the person on the other end has to have spoken for a few seconds before it detects it. No luck!

The view from behind- It's much, much thinner than the Freedom. I really like how I can make it stand out with the covers, or I can make it blend in completely. From the front, you really can't see any of it (my hair covers the earhook), unlike the Freedom, which was pretty bulky and noticeable from the front.

Battery Life- With the Freedoms, I barely got a full day of battery life, so I was worried that I wouldn't get very much out of the N5 (which use 1 less battery). The computer estimated that my right ear, which has a very strong map, would last 16 hours. It predicted my left ear, which has an even stronger map, would last 13 hours. Not quite a full day, but close enough. Yesterday was the first day I actually got to wear them all day (Tuesday- I didn't get them until my 9AM appt. Wednesday- I had French Honor Society inductions in the evening, and changed the batteries before  I went just in case, and Thursday I had a ton of reading to do and a very loud family, so the implants came off during my reading time). I put them on yesterday at about 8AM and I didn't get a single low-battery warning, even though I went to sleep at 12:30 AM. I'm pleasantly surprised that they actually appear to be lasting longer than my Freedoms did (weirdly enough, although partly due to my use of the FM boot on one Freedom). I know a lot of people really want the rechargables, but I never used them with my Freedoms, since they died during the school day, so I doubt I'll use the rechargeables for the N5 when they come out.

FM- There is not yet a boot released for the N5 for FM, so I have to use a neckloop with T-coil called the MyLink. While it's nice to have less on my ear, it's not exactly a fashion statement to walk around with a neckloop all day. I put the bottom part under my shirt, but I don't normally wear T-shirts, so a good portion is visible. I had to go a few days without the FM, and it made me realize there were come classes I really needed it for (French, my AP classes) but I also realized there were some that I could hear just fine without it. I think I may just "play it by ear" (heh..no pun intended) and only use the FM depending on what I'm doing in each class each day. When it's not in use, I can just take the FM off, so it's not a big deal.

Hearing- I was MAPped the same day I received the N5s, so my hearing is better than it was on Monday, but I don't know which I can attribute it to. I'll have to try out my Freedom again and see if I notice a difference, but I was told that, if I did, it would be pretty minimal. We'll see.

Funny story... I had taken off my FM neckloop in one of my classes, since we were just doing bookwork. The girl who sits next to me asked about it, and I lamented how I found it kind of annoying, but mentioned it was because I got new, smaller processors. I figured she's noticed since I'd worn my hair up the day before, but I lifted my hair up and pointed it out to show her anyway. "Ohhhh!" she exclaimed, "I was wondering why you hadn't wearing anything on your ears... I see it now!" 

Hearing Loss in the Media

Whenever deafness and/or CI's are portrayed in TV shows, it's usually with much fanfare (and oftentimes debate) from the hearing loss community. I was quite surprised this evening, while watching my favorite shows, that they had a short story line about deafness.

I LOVE Grey's Anatomy, which shouldn't come as a surprise to any of you. ;) I'm going to give my best summary I can possibly give with the knowledge that many of you have not watched the show before:

Background info: Dr. Sloan (AKA, Dr. McSteamy) is a plastic surgeon, at Seattle Grace-Mercy West hospital. He's upset that his ex-girlfriend (Dr. Lexie Grey) went and made out with Dr. Karev right after they broke up, and while he was with his single but pregnant daughter, who was in the hospital facing complications with her unborn baby. Soon afterwards his daughter fled, leaving an emotionally-invested Sloan devastated. Still bitter and alone, Sloan is taking out his anger by making out with every woman (drug reps, nurses, etc.) who will let him.

A woman who appears to be in her 40's comes into the hospital with her elderly mother, who has just been in a car accident. As the mother is being examined, we see and hear the mother and daughter shouting at each other. We find out that the mother, who lives with her  daughter, "stole" her daughter's car and went out for a ride, even though she wasn't in fit condition to do so. One of the doctors interrupts the conversation, asking if it's necessary for them to scream everything.

The exasperated daughter replies, "Yes, actually. My mother is almost completely deaf and refuses to get a hearing aid or learn sign language, so we scream"

They decide to take the mother for a CT scan of her head, and I figured that was the end of the deafness plotline. However, after the scans of the mom's head comes in, they call Dr. Sloan to come take a look. After looking at the scan for a mere second, he immediately proclaims, "She's deaf." The other doctors ask how he knows this, seeing as he's never even met the patient.

Sloan explains, "She has otosclerosis. (points to inner ear area on the scan). I can make her hear again by repairing it. I'm just that amazing of a doctor."

They tell the daughter and mother, who are both elated at the chance to have their lives back, as the mother has apparently become very dependent on her daughter to "interpret" everything. After surgery is finished on the mother's knee, Sloan immediately goes in and begins working on her ears.

We then see the mother sleeping, having just finished the surgery. The daughter is sitting at her bedside, talking/flirting with Sloan. She tells Sloan how excited she is that she will finally be able to have her life back, and that she's miserable living with and taking care of her mother. Her mother suddenly awakens and says.

"What are you talking about? You were divorced and alone, and you needed ME! I never needed you for anything, I was the one taking care of you!"

Rather than getting angry, the daughter, in a super-cheesy-but-sweet-way, shouts "Mom! You heard that!"

They excitedly realize that, indeed, the surgery has restored her hearing. We never see the mother and daughter again, but later on in the episode, Sloan mentions to another doctor that he slept with his patient's daughter.  I don't think we'll be seeing the mother and daughter again, since most cases in Grey's Anatomy only last for one episode.

I liked it. Since there weren't CI's involved, that eliminated many of the myths and controversies that usually get into shows that try to do a story about deafness. It was also nice to finally see a deaf person who wasn't your stereotypical deaf person: she was late deafened, could speak, and didn't know ASL. It seems the majority of shows that have a character with deafness tend to make them know sign language. I like that it showed the communication difficulties that come along with deafness, and I felt everything was portrayed well. I couldn't find anything that offended me the slightest, so that was good! If you'd like to see the episode online (complete with closed captions- thank you ABC!!) click here.

I also realize that I've started two completely different series of blog posts that I haven't finished. I probably should stop doing that, because I start losing interest on that topic and begin to write about something else. Rest assured, the posts are coming!

(How do you guys like this? We had to create a monogram that reflected us using photoshop in my desktop publishing class. I like how it came out and thought it'd be a good signature for each post :) )

The Scare- Part 1

Disclaimer: If you're looking for insights on hearing loss, this is not the post to read. However, if you're looking for insights of a freshman girl, who just happens to have hearing loss, and to hear about one really eventful day, you might be interested in reading this. This is completely true, and occurred this morning.

Along with the other 99% of the world, I hate Monday mornings. And this one was no exception. It wasn't a particularly bad morning, though. I'd just left orchestra after a pretty entertaining rehearsal, and was now in my 2nd period class.

We were working on group projects, so our class met in the library. Upon the ringing of the tardy bell, I noticed the absence of one of our group members, who I'll call Jill. I didn't think much of it, until she walked in late and whispered something to the teacher. She then dashed over to another member of our group, who I'll call Sara, and began whispering into her ear. I watched as the smile she was wearing collapsed, and the color quickly drained from her face. There was a look that couldn't be described as anything other than sheer panic. I watched her discreely pull out her phone and start frantically texting.

No sooner had the girl arrived to the library, then an administrator came and took Jill out of class. I wasn't particularly concerned. She probably caught someone cheating, or saw someone doing drugs. Sure, it's not something I'd ever do, but it's an everyday occurrence at my school, and probably most other public high schools. I then watched Sara walk over to our teacher, who was sitting just a few computers away from us. They talked for a good 5 minutes, and I tried my darndest to lipread. I couldn't get anything.
I noticed the other members of our group starting to float towards the teacher and eavesdropping on the conversation. They then began to say their own two cents, so I figured it wasn't a private conversation anymore. Jill became back, and was talking to them too. I inched my chair towards them.

"I wouldn't worry about it. It's probably just a rumor. People say things they don't mean all of the time." I heard my teacher say.

"Wait... What's a rumor?!" I asked, desperate to hear the latest gossip.

My group and teacher looked at me, but no one spoke.

"Would anyone like to share this information with me?" I said, half kidding.

Jill finally spoke up. "Someone told me that there's going to be a shooting today."

A shooting. That certainly didn't happen everyday. My mind was suddenly inundated with a million thoughts., and I began to notice the frightened looks on many of my classmates' faces.

To be continued..