Calling It By Name:

Some people are born inquisitive, analytical, always surveying the world around them and wanting answers to questions life offers them. I've always been one of those; someone who has a hard time accepting "just because" as an answer. That's an answer I don't like; I like "definite". 

And so, of course, one of the things that has most defined my life, my deafness, has always been a complete mystery. Argh....how frustrating. For a long time it was almost kind of cool that I had this random deafness, this thing that just happened when I was a small child that nobody had any answers for, this total anomaly, but as time went on I became more and more curious. When I had my children, I was fascinated to discover that they were all hearing, and relieved, to a certain degree. But as a person who was born hearing and then became deaf, I had no security that my children would always hear. 

I didn't have Internet when my first three children were born. I didn't get online until 1998, when Rachel was six months old or so. I joined several online communities but none of them were related to hearing loss...at that time I was in a fair amount of denial that I had a hearing loss at all and just had no interest in finding others like me. In March of 2006, though, that changed almost overnight. When I had that first sudden loss that began my journey down the road to complete deafness, I didn't walk, but rather, I ran to the Internet in search of people who had experienced cochlear implant surgery. And at this point in time I became intensely curious about the "why". Sudden hearing loss once in a lifetime was possibly understandable....one of those things that just happened. But I couldn't accept it twice. I was sure there had to be a reason, and I wanted to know what it was. So I pored over the websites that listed genetic causes of deafness. Connexin, LVAS, Marfan, Pendred's, Waardenburg...just a few of literally hundreds of things that it COULD have been. I ruled out many of them as I read. I was aware that there was a possibility that I'd never know what caused my loss, but I continued to search, hopeful that one day I would turn up something that would make sense. 

Along my journey to cochlear implantation, to deafness, through the identity crises, through second and third implant surgeries, through conventions and new jobs and new friendships, I missed very few opportunities to ask people, "what is your story?". That was usually one of my first questions, right after finding out people's names. And the stories were fascinating. I met people who had lost their hearing due to illness, due to genetic disorders, rare autoimmune disorders, suicide bombers in Iraq. It was second nature to ask. Perhaps someone somewhere would have a clue that would give me the answer I was looking for.

And surprisingly enough, a clue came one night a year or so ago in a chat room on Hearing Journey, when several of my cochlear implant friends with Meniere's were talking about their battles with vertigo.  Someone mentioned the "drop attacks", and suddenly, I thought, "I've had those." My first attack was probably eight or nine years ago, and it was totally out of the blue, in the spring of the year. I was walking through the mall, pushing a stroller, and one second I was standing, and the next second, I was flat, and the world was whirling around me. I was aware that people were standing over me and I was able to say, "I'm fine, I'm just dizzy". That was the first of several that I had over a period of a few months. I went in to see the local ENT about them, and he did an MRI, and found nothing that gave any clues about WHY I was having those attacks. I wanted an answer...I wanted TREATMENT...and the doctor could offer nothing more than, "there's nothing to fix, you'll just have to wait it out." Thankfully, the dropping and whirling stopped within a few months. However, I was left with mild vertigo...not constant, but often enough that I could say that it was an ongoing thing. It happened most frequently in the late winter and early spring months. 

Vertigo began in earnest in January of 2006. I wrote on a previous blog about struggles with it. In February, in desperation over the frustration with vertigo, I stopped taking a medication that I was on in hopes that it would resolve the issue. It didn't....if anything, it became worse. And then, in late March, I had the first sudden hearing loss. And I don't remember the vertigo being quite so significant afterwards...I was suddenly very preoccupied with the sudden hearing loss and the insane tinnitus that had suddenly become a huge part of my life. 

Amazingly, it just didn't occur to me that I had Meniere's. I didn't know a lot about it, but what I did know, or thought that I knew, was that people that had it had ongoing, day in and day out, disabling symptoms. And I didn't fit that category. So I dismissed it. Besides, I was looking for something that was related to the hearing loss I had had as a small child, and Meniere's didn't fit, because it was something that came and stayed....at least, to my way of thinking....and in my case, there had been nearly thirty years between the first loss and the second one...how could they possibly be related?

Between March of 2006 and March of 2007, I had constant tinnitus, occasional vertigo, and hearing that fluctuated as much as several times a week. And then one day at the end of March, 2007, I heard the staccato fireworks that signaled the end of my life as a person with any natural hearing...on that day, for all practical purposes, I became completely deaf. And I still didn't know why.

You know much of the rest of the story. I was implanted, I had a successful right ear, a not so successful left ear. I adjusted. I learned how to hear again, how to live again. I still researched the causes of hearing loss, hoping for an answer. I still came up short. I still asked "why?" to everyone I could think to ask. I stopped short of genetic testing...I didn't want to pay for something that might not give me an answer. I asked my surgeon, who only knew me as "sudden sensorineural hearing loss", "is there any reason why?" and he told me, "your ears are structurally perfect. There's no reason why they shouldn't work. They just don't." 

I have several friends in my "inner circle" who have followed my journey for a long time....some longer than others. I'm lucky enough to have a few special girl friends who love each other dearly, and we all stay connected here and there, mostly on Facebook. Two of them have Meniere's. And as the weather this fall started to turn, and their symptoms started to flare up, I started realizing how much I related to what they were saying. Then on HearingJourney a few weeks ago, the topic of those awful drop attacks came up again, and that was enough for me....I wanted to know more about Meniere's. So the research began on every website I could find, and every website that I looked at reinforced my suspicions: I have Meniere's Disease. The websites answered every question completely: Drop attacks are uncommon in any other vestibular disorders. Children can have Meniere's, although it's rare. Meniere's can go into remission for years without a flare-up before rearing its ugly head. And one person's severity of symptoms will not match everyone else's....so it's perfectly reasonable that I have mild symptoms sporadically when other people are disabled by it. Not fair, exactly, but reasonable. 

After one night of voraciously reading websites into the wee hours of the morning, my mom came over to bring lunch and visit. I told her that I had been researching, and she said, "Interestingly enough, when you were a small child, based on the symptoms you had, the doctors said that it appeared that you had Meniere's. But they ruled it out." I asked her, "Why did they rule it out?" and she responded, "Because, they said, children don't ever get Meniere's; it's something that happens to people later in life." I told her, "Based on what I read last night, children DO have Meniere's. It's rare, but they do." She told me then that they had used the words "endolymphatic hydrops" to describe what they were seeing. That term is synonymous with Meniere's today. 

I took all of this information to the local ENT who first saw the "drop attacks" several years ago on December 22nd, and his face lit up in a "Eureka!" expression. "That's it," he said. "I have no doubt. You meet all the criteria for a definitive diagnosis, and your MRI ruled out any other cause of the vertigo. You have Meniere's Disease." I told him what my mother had said about the doctor's findings way back in 1976, and he agreed with us that juvenile Meniere's was probably the cause of my deafness back then. We have no 100% solid proof, but we have a good circumstantial case. He is forwarding all of my information to Vanderbilt in case my surgeon is interested in doing any farther testing for a true clinical diagnosis, but as far as we are concerned, the mystery is solved. 

I'm overjoyed. In one sense, it's not the best possible news in the world...I still have symptoms. I'm already completely deaf, so there's good news there: I won't become deafer than I am now! My tinnitus is manageable at this time...I occasionally hear fireworks (my mother said that I heard the same sound as a little girl) and I occasionally hear high pitched tones and trains (I remember hearing those as a little girl). I never hear them when I have my processor on, and the noises don't invade my quiet time unmercifully like they do some of my other friends (although the fireworks startle me occasionally when they're loud). My biggest problem is the vertigo and the pressure in my ears. True swirling vertigo isn't a huge issue for me but I have a sense of being "off" some days, especially on bad weather days in the late winter and early spring. The pressure in my ears usually accompanies those bad days, and I just have this overall full head, off balance sensation that's more annoying than disabling, although some days it really gets under my skin. It is what it is. It's always been very manageable, and I'm grateful. And it's truly a relief to suddenly be able to see it for what it is, to realize that the sensations and the pressure are all part of the package deal, pieces in the puzzle. 

A diagnosis doesn't answer my questions as to whether or not my children will be deaf. Meniere's can occur randomly...I may be the only person in my family who ever has it. However, it can also run in families....we go to church with one family where the father and son are the fourth and fifth generation of Meniere's in their family. In that sense, I won't ever have any real resolution....it will happen or it won't. At the moment, the children all hear reasonably well. There are no tests to determine if they have it while they are still hearing. So we continue to wait, but we are no better off and no worse off than we were before, and at least now we know what we're looking for. 

I have a great amount of peace at having an answer for myself. One of my friends commented on Facebook that only about ten percent of people ever know "why". I'm really grateful that I have been given an official diagnosis, a name for the disease that changed my life. As my friend Tom said, it doesn't change the outcome; that remains the same, and I can live with that...I have long since accepted my deafness for what it is. But there is much peace in being able to call it by name. 

I remember the family counselor telling me back in 2005 that my deafness affected my life in more ways than I realized. I told him he was nuts. I didn't think that it affected me at all. But on March 30th, 2006, the day that I had the first sudden loss that would transform my entire attitude about deafness, my life was turned upside down in a way that I never anticipated.

For thirty years, I had lived with bad, but stable hearing. I had many negative feelings associated with my hearing loss over those years, but had trained myself to ignore them. I tell people now that during those thirty years, despite the fact that I had a 100 dB hearing loss, I considered myself basically a hearing person that missed a lot of words. I WANTED to be a hearing person. As a child, I was unique in so many ways, deafness just being one of them, and I didn't WANT to be different. I wanted to belong. And so if I missed something that was said, I stuffed the hurt away. If everyone else laughed at the joke, I laughed, too, whether I heard it or not. All the "I'll tell you laters" and "it wasn't that important anyway"...stuffed them deep down inside and let them silently hurt. But I had fooled myself into thinking that I was "normal", that I wasn't really very different from anyone else. 

I still have this desire to belong, but it's different now. I still, quite often, feel a lack of connection to people that can hear, since they, for the most part, don't seem to be able to grasp my communication difficulties, and to be honest, I still don't always understand what they're saying. Most of the time they treat me like the person that I wanted to be and pretended to be for years...a hearing person that just sometimes misses some words. But somehow over the past few years my identity has changed and I no longer want to be seen as a hearing person who sometimes misses words: I want to be seen as a deaf person. At some point I became not only comfortable with who I was but proud of it, calm in the realization that deaf is not better or worse, but simply different. At some point I became not just accepting of my deafness but fiercely owning it: demanding for it to be seen and acknowledged, a take-it-or-leave-it attitude. Which side of the fence do you stand on? Can you accept the fact that I don't hear well? Can you not only acknowledge that I'm deaf, but deal with it and make the changes to help me, and others like me, overcome the communication barriers? And for the people, hearing or deaf, that say, "I embrace that about you, let's take it and roll with it", I feel at home. But I feel an especially deep sense of kinship with others who live it, who have been through the same journey I have and have come out on the other side bruised and battered a bit, perhaps, but who have kept their hearts strong and kind and generous and willing to lend a hand to others who are just beginning the trip. I don't even really like the term "hard of hearing"...that seems to me to be a cop-out, a "not quite deaf" statement. I'm deaf. My ears have very few, if any, living cells in them that work...they have all been mown down by a shiny electrode array. I only hear when the magnet clings to the side of my head and a string of binary code cascades through the electrode, producing electrical impulses that, almost miraculously, my brain interprets as sound. My ears look perfect, but they serve no other function, really, than to hold a processor and perhaps the arms of my reading glasses. And a lot of people shy away from deafness...it seems to be something to be feared, something to be ashamed of, something to be tiptoed around. I wish that all of that could be pushed away and that hearing loss....deafness...could be seen for what it is, something that affects one in THREE people by the age of 65. It's not something to be ashamed of or afraid of or something to hide. It's very real, it's very common, and there are a lot of people with hearing loss who miss out on the world around them every day because of stigma and shame. 

I wouldn't be hearing again now...too much of who I am now is wrapped up inside a deaf identity. I believe that this is who I was meant to be, and that there's a purpose for this, so I accept and embrace the fact that this is who I am, and try to educate those around me about the fact that inside, we're people just like you are, people who want to be accepted and involved and needed  just like everyone else. We are going to miss a lot of things that you say. We don't want to....we don't choose to. We need you to meet us halfway. We don't advocate for ourselves to be pushy and loud and rude and obnoxious. We advocate for ourselves because we want to share this amazing thing called Life with you, and occasionally, if you don't stand up for yourself, nobody is going to stand up for you. We just want you to be aware that we don't hear. We have a lot to offer, but we don't always hear. Silence and shame and invisibility doesn't benefit anyone. Can you hear us? Are you listening?

My story:

A link to the Hearing Loss Magazine can be found here: HLAA Website

and the article itself is here.

Watch for....

...the July/August edition of Hearing Loss Magazine :) (Photos by Cindy Dyer, who writes about the article here)

Check it out! :)

http://www.advancedbionics.com/CMS/Support/BEA/Become-a-Mentor/

Turning Point

I know it has been a LONG time since I have posted anything here...wow...I was startled when I looked at the date of my last post. Truth is, though, writing here has not been a passion of mine for a long time. I have discovered the simple, fun world of Facebook and that has been where I spend the majority of my time. I still love to write but writing about deaf issues just isn't something that really appeals to me right now.

I have decided that I have somewhat come full circle here. For years I was in denial about my deafness...I didn't want to be deaf and didn't want to talk about it. I pretended to be just your average "normal hearing" person for as much of the time as I could. I would tell people I was deaf but only when the situation called for it. I was embarrassed, quite frankly.

When I went completely deaf in March of 2007, my situation changed...I was suddenly undeniably deaf and had to face that fact. I jumped headfirst into the world of hearing loss...getting involved with every hearing loss group I could find, investing all of my time and energy there. I was no longer deaf and ashamed...I was deaf and proud of it. I was on a mission to change the world and their misguided views of deaf people. I loved it and I allowed it to consume my world almost completely.

Unfortunately, that kind of sudden, consuming passion tends to crash and burn rather quickly :). I went through a phase where I was just overwhelmed...too many irons in the fire, too much going on, too many different directions where I was being pushed and pulled emotionally and physically. On the go too much, taking time away from the things and people that really mattered. So many thoughts swirling through my head and not being able to sort them all out. I took a hiatus to stop the craziness...to sit back and think and prioritize. And now I see things a little more clearly.

I am so much more than a deaf person.

I am a creation of God, a daughter, a sister, a Christian, a friend, a wife, a mother, a teacher, a mentor. I am deaf, but that does not define me...it is just a small part of who I am. I am so much more than my non-working ears and the tiny personal computer that resides just behind them.

So I am shifting my focus here...and going back to blogging like I used to...about the big picture of life, not one small, isolated area of it. I am keeping this blog open and I may occasionally update it but I am going to attempt to start posting occasionally on a new blog that I created several weeks ago. It can be found here. This blog will always be my "CI blog"...even the URL reflects the theme...and as much as I loved reading CI blogs when I was researching, I hope that this will be a help to someone down the road somewhere...but I want to write about so much more...my family, my church family, what is cooking in my kitchen, the weather, what my cats have destroyed today, how many monkeys are in my collection now, what I want to be when I grow up. Share it with me? :)

Thank you!

...for all the support that has come my way over the past few days...here and on Facebook. The decision to make a big change of this nature took a while to wrap my brain around but I feel nothing but relief now that I have made it. I have an appointment made...July 31st at 9 AM I am meeting Susan to try the CIS programming and we will see how that goes. She said that we have never tried the CIS strategy before and agreed that it was a possibility so I am interested to see if it will make any difference at all. I have heard from several users of that strategy that have had encouraging things to say...that is exciting :)
While at the HLAA convention in Nashville, our family had the privilege of working with Cindy Dyer, whose photography can be found here: Cindy Dyer's Blog. Cindy offered to photograph our family about a year ago but because of schedule conflicts we never could make it happen. I finally got to meet Cindy in June and she spent quite a bit of time with our family one afternoon taking pictures. The woman does spectacular work...and also a tremendous amount of it...so I have been patiently waiting to see how they turned out. It finally got to be too much for me, though, and I e-mailed her and asked to see just one particular picture...one where we just let the kids be goofy and hang out. She obliged by sending it to me right away...and it was so cute! She has asked that I not share further pictures just yet...as they are for a project...but she said I could post this one on my blog, so I did :) I think this one turned out so cute...my eight year old is making a funny face, but that's what that age tends to do in pictures, I think :)
One more quick observation and then I am headed to bed. I have talked to a lot of people over the past three years about CIs and have mentored, been mentored by, supported and been supported by a lot of people in that time. One of my buddies, Ulf, has been around for a long time...I've probably known him about two years. He has been desperately needing a CI for a long time but because he lives in Norway and there is limited funding for his hospital to do CI surgeries, he has had to wait a very, very long time. I don't know what time it is in Norway, but I know that Ulf is FINALLY having his surgery today, on Wednesday, July 22nd. I get excited about ALL CI surgeries, but he has waited a very long time to hear again, and I feel a tremendous amount of joy that his dream is finally coming true. Keep Ulf in your prayers and if you feel like it, swing by his blog and congratulate him. I know he hasn't posted on the blog a lot lately but the last I heard on Facebook everything was still on. He would love to hear from you. Keep him in your prayers!
Headed to bed...night, all :)

Just keepin' it real.

Long post ahead!

I have had a really hard time coming to and writing on this blog for several months. I know it's been neglected...we've had the Walk4Hearing, the HLAA convention, and most recently, I went to the Northeastern Cochlear Implant Convention in Massachusetts just last weekend...and I haven't written much, if anything about any of those events. I really feel bad about that...there was a lot to say about all of those events...but this blog just hasn't been a comfortable place for me to be lately.

I have a really good reason, and I have been hesitant to share for a long time, but it's finally time.

On September 11th, 2006, I went under the knife for the first time to implant a cochlear implant in my left ear. It had been without sound for thirty years, since the time I was four years old. When I lost the hearing in that ear, the doctors told my parents that I had no usable hearing in that ear and a hearing aid wouldn't be helpful, so in all that time, I never heard a single sound in that ear.
At activation, I felt sounds in that ear instead of hearing them. Within a few hours I was hearing sounds but despite the best efforts of my incredible audiologist we never were able to program out the sensation. The best way to describe the sensation that I feel is a jackhammering feeling inside the skull. Not at all pleasant. I toughed it out for a few months and then gave up on it, since I still had a hearing aid that gave me a little benefit in my right ear.

I soon lost the remaining hearing in that ear, and on November 5, 2007 I was implanted in my right ear. Two days before Thanksgiving I was activated and we knew from the first MINUTE that this ear was going to be dramatically different. I could hear voices immediately and was comprehending speech before I ever left the office. Within two weeks I scored a 96% on a test comprising of sentences intoned by a male voice...and I wasn't lipreading. Before the CI I only got about half of what was said...WITH lipreading and the tiny bit of sound I had left.

After I had had that CI for a few months, I started questioning all the problems I had with my first implant. Was it possible that there was something wrong with it? I had a lot of pain and fullness in that ear...was there any possibility at all that perhaps something had gone wrong? I discussed this with all of my family and friends, my surgeon and audiologist, and several of the people that I knew that worked with Advanced Bionics, and after much discussion it was decided that it wouldn't hurt to reimplant that left ear and just see if it made a difference. So in August of 2008 we gave it one more go and I went back under the knife for the last time. Five weeks later I was activated and the results were only somewhat better. I have no pain in that ear anymore, so that benefit was immediately obvious. I still felt sensation in addition to sound, though.

However, this time my attitude was different. I was going to keep that baby on at all times...whenever my right ear was on my left ear was going to be on with it. If the sensation could be defeated, I was going to do it. I was much more determined this time. I was going to be bilateral...I had gone through the surgery twice and I was going to make it happen.

Well, almost a year later, here's the update...being bilateral isn't working for me. At my last mapping two weeks ago, my audiologist and I talked about giving up and going back to my one good ear alone...I have been so VERY frustrated. Because of the sensation that my left ear feels, I have to keep the volume and sensitivity way down. Because of that, I can only hear the louder sounds...my audiogram on that ear is about in the 70 db range, and I have practically no comprehension at all in that ear when it's tested alone. My brain seems to have reassigned a lot of low frequencies to that ear, so I do have a richer, fuller sound with both of them on. However, if I am in a situation that is noisy at all (and I have five children, so just being at home often puts me in that situation) the sound that the left ear gives me is actually a huge distraction to my right. After a certain loudness threshold, everything sounds garbled. I have been VERY frustrated with that situation, simply because when I only had one ear, I heard MUCH better in groups than I do now. I'm a very social person...and I love group situations. I HATE being in groups or on a plane or in the car and having to struggle again when I know how easy it was before when I only had one ear.

If I had a magic crystal ball and it told me that in two years, three years, five years, all of this would magically get better and I would have super hearing, I would have a lot more strength to keep on going. But it has been almost three years since I first implanted that left ear and I am telling it like it is: I don't see enough improvement to keep on doing this when I KNOW I can hear better with one ear alone. This is not an implant issue, or a surgical issue. This is the issue of a brain that went without sound for thirty years, from a very early age, and doesn't seem capable of creating new connections past what it already has.

I have a very supportive group of friends and family, and most of them have thrown out constant encouragements of "Don't quit!" "Don't give up, maybe it will get better!" and the like. And I think it's because of those people that I have stayed with it as long as I have...I haven't wanted to say, "This isn't working for me" and let everyone down. I also love the volunteer work that I do with Advanced Bionics and had fears that a volunteer with a non-working ear wouldn't be of much use to a company whose business is making people hear. It has been so hard to come here and blog...this is supposed to be about bilateral implants! The title and even the link reflect that.

This weekend I went to the Northeastern Cochlear Implant Convention and while I was there I went to a workshop with a bilateral panel. Four bilateral users, all with the Advanced Bionics implants. Audience members were encouraged to ask questions to the panelists about their likes and dislikes about being bilateral. "What is the best thing about being bilateral?" was one question. One of the panelists, who was probably in his mid 50s, spoke up and said, "I don't wear one of mine. I was born deaf in that ear and despite the fact that I wore that implant for 14 months, it never did work for me." I nearly fell out of my chair. Why did they have him on a bilateral panel? What good was his being bilateral if both ears didn't work?

I talked to him for a good while after the workshop and we compared notes. I told him my story and he said, "Thank you for sharing that. I think that people are afraid to admit that occasionally they just don't work. I gave it my best shot and it seems like you have too. I have one ear and it's great and I am thrilled to have that." And those are my feelings. I cried all the way through my sushi at lunch because of the relief of finally admitting it to myself...I can't keep doing this. I can't keep wondering what other people are going to think. I can't keep worrying that someone might be nervous about being implanted after hearing my story. I can't keep keeping on for everyone else. In order to hear my best, one ear seems to be my best option.

I have one more possibility under my belt. There is a very simple programming strategy called CIS that was used a while back in previous implants. It delivers less information at a slower rate, if I understand correctly, and might possibly be able to reduce sensation just enough so that I can increase sound enough to balance those two ears. It's not commonly used and it's a bit tricky to program in so there's a possibility that it might take some doing to make that happen, but after I have tried that (and I am fairly positive that it won't make a difference), I can honestly say that I have done everything I can think of to make being bilateral a success and can walk away with no guilt at all. I talked to a friend at Advanced Bionics today about my volunteer work; did she think I could still be an effective mentor if I gave up? Her reply made me cry:

"...We value you and your experiences and going forward, they will continue to be valuable to all who connect with you, regardless of the direction you move. If you return to being a person who uses one CI, that will be your perspective and the point of view from which you will share your experiences.
...The bigger issue is really what you want to do and need to do for your best hearing experience. It sounds like you have given that tremendous thought and have come to a conclusion that works for you. Whatever you decide, AB, and I think more importantly, you family, friends and those of us at AB who know and care deeply about you, will be completely supportive and behind you 100%.
So please take any guilt or disappointment you think we might have off the table and out of the equation. That is simply a non-issue."

So that is what I am going to do. The next few months will bring more mapping appointments as we attempt the CIS strategy...I should know fairly quickly if that will work or not. If it doesn't, I will have to retrain my brain to bear the entire weight of hearing again. It won't take long but it will require several mapping sessions to get it right again.

I have zero disappointment about not being able to hear with that ear. I had zero expectations of it going in, and after three years, I feel almost a sense of relief to know that the end may be in sight. I may not have surround sound any more, but I will have the best hearing I can have, and, my friends, isn't that what we all want?

Suggestions please?

With the HLAA convention coming up in a week and a half, I have been offered a really neat opportunity to speak to the employees at the Nashville airport about the influx of hearing impaired travelers that will be descending on them in just a few days. This is my chance to tell them what concerns we hearing impaired individuals have and talk with them about the best way to communicate with us. If you could tell airport personnel one thing, what would you want them to know?

Pictures from the Walk4Hearing.....

...here and here. Check them out!

I want to write more about this soon, but I'm worn out :). I do want to say a HUGE "Thank You!!!" to everyone who has supported me and my team this year...with your help, I was able to contribute $900.00, and at last count the Nashville team had raised $1,990.00...ten dollars short of $2,000.00!! Considering that several of the people that had originally planned to walk with our team weren't able to due to scheduling conflicts, I am THRILLED with our success. I am so grateful to YOU all for making this happen...thank you!

My children and husband all walked...even my six year old...5k or just a little over 3 miles. Needless to say, everyone is asleep...and I am headed that way myself!

Hugs,

Jen :)

Unexpected Benefits

You know, when I first started researching cochlear implants three years ago, all I wanted to do was to find a way to recover the hearing that I was rapidly losing. I honestly never would have believed that cochlear implants provided BETTER hearing, and I had no idea of the added benefits that would come along with that better hearing.
At my six-month bilateral testing, I scored 100% comprehension with both ears together in quiet (no lipreading at all), and something like 95% in noise (I don't have a copy of that paper...I need to get that). That alone is startling...before the CI, I very seriously doubt if I would have EVER been able to score even 50% in quiet without lipreading.
I struggled through every church service to hear well enough to combine what I was hearing with what I was seeing to produce a plausible sermon. I struggled with conversations every day, constantly telling my husband and children to "look at me!" when they were talking. I am still amazed today to realize that now, when I am sitting in Bible class and someone comes and sits in front of me, I don't have to start stressing about being able to hear because I am generally going to hear about 95% of what is said without ever even looking at the speaker. I don't have to read the captioning at my HLAA meetings anymore because I can understand our guests effortlessly. Actually, before Christmas, we were on our way to dinner and my mother-in-law was attempting to talk to me in our car...while I was driving, her in the backseat, in the dark, with David Cook blaring. I answered a few of the comments she was making, but finally told her, "I don't know if you realize this, but we are carrying on a conversation with the radio on!" She was stunned to realize that not only had she forgotten that I was deaf and carried on that conversation, but that I was able to hear her. I don't like those conversations, though, they're a little stressful...but who would have ever thought I'd be able to do that?
But one benefit that I never thought about has showed up in recent months...and it has been totally unexpected and very much appreciated. I have noticed that it has become easier for people to understand ME. The people that know me and love me will staunchly claim that I have always had "fine" speech for someone as profoundly deaf as I have been all my life, and I love them for that. I haven't ever had a lot of people peg me as deaf immediately...they usually say, "You have an interesting accent...where are you from?" I started telling them a while back that my accent is "Southern Deaf Girl"...it almost always makes them laugh and it hopefully keeps them from being too embarrassed for asking.
My aunt Betty was the first person to ever say anything about my speech after my implants...she was in from Texas last year and she hadn't yet spent any time with me and my newest ear. After taking for a few minutes, she said, "Wow, Jennifer, I can tell you're hearing better, because your speech is better!" I was startled that it was that noticeable...but pleased, because she has known me all my life, and that was an interesting observation.
Saturday I was at Wal-Mart and stopped to talk to one of my former co-workers, Miss Peggy. We were cashiers together and talked a lot on breaks and such. It has now been a year since I worked at Wal-Mart and I only rarely see Peggy anymore. I talked to her for a few minutes, and she suddenly said, "Do you mind if I ask you something?"
A question like that is usually the preface to something personal, so I was a little startled, but said, "Sure, go ahead!"
"Are you taking any speech classes? Doing anything like that?"
"No, nothing like that at all, why do you ask?"
"I just HAVE to tell you that your speech is SO MUCH BETTER!! I hope you don't mind me saying that or get offended that I mentioned it?"
"Oh, no, Peggy, not at all....to the contrary, you just made my entire week!!!"
Apparently, one added benefit of being able to hear all those wonderful speech sounds is that I am now getting better at pronouncing them all. I am tickled about that :)
Sorry for being so scarce lately...but I went to the Gears4Ears a week and a half ago, have the Walk4Hearing this Saturday (it's not too late to donate!), and the convention coming up in five and a half weeks! AND the kids are getting out of school in two weeks...oy! :) I have a few things to write about though so stay tuned for more posts coming up soon! :)

Kinda neat....

...Check this link out. Recognize anybody? :)

My Walk4Hearing Personal Page

As of 4/07, I am a third of the way to my goal! :)

This just in!

I have highlighted some really big news below :) If you are an Operation Iraqi Freedom or an Operation Enduring Freedom veteran, you can receive a complimentary one year membership to the Hearing Loss Association of America AND a complimentary registration to the convention in June. This is a very nice offer...if you or someone you know is a candidate for this offer, please read below!


FOR IMMEDIATE RELEASE: April 6, 2009

Contact: Nancy Macklin, Director of Events
nmacklin@hearingloss.org

Hearing Loss Association of America's Convention 2009
in Nashville this June Welcomes
Veterans of Operation Iraqi Freedom (OIF) and
Operation Enduring Freedom (OEF)

Bethesda, Maryland: The Hearing Loss Association of America will hold Convention 2009, June 18 - 21, 2009, at the Gaylord Opryland Resort & Convention Center in Nashville. Thirty years of the organization's accomplishments will be toasted at a celebration, and a DVD generously donated by the American Abilities Television Network (www.mirusmedia.net) will be shown at the event.

HLAA is pleased to announce it has been named as a partner by the National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology (RIT), in the Military Veterans with Hearing Loss Project, a program designed especially for veterans of OIF and OEF who have a hearing loss as a result of their service. The goal is to bring qualified veterans into RIT beginning in fall 2009. Dr. T. Alan Hurwitz, President of NTID, will formally announce the partnership at the Opening Session on Thursday, June 18, 2009. He will be followed by a 28-year old Army captain from Knoxville, Tennessee, who will recount the story of his traumatic brain injury and hearing loss caused by a suicide bomber in Iraq. For additional information about the program, visit www.rit.edu/ntid/veterans. The Hearing Loss Association of America applauds NTID and RIT's commitment to veterans and their unique approach to education for veterans with hearing loss.

HLAA has pledged its support of OIF and OEF veterans by offering a complimentary one-year membership and registration to its upcoming convention. In addition, HLAA has launched a new page on its website, www.hearingloss.org, especially for veterans for OIF and OEF where vets can meet our Featured Veteran, read pertinent articles about hearing technology, relationships, communication strategies, and more.

Convention 2009 highlights include:
 Birthday celebration marking HLAA's 30th year, and three decades of accomplishments;
 Vint Cerf, Ph.D., Opening Session keynote speaker, is widely known as one of the "Fathers of the Internet;"
 Research Symposium sponsored by the Deafness Research Foundation, An Update On the Latest Hair Cell Regeneration Research, featuring scientists from around the country on their ground-breaking research;
 Exhibit Hall and Trade Show with many hands-on, interactive exhibits showcasing the latest technology and services for people with hearing loss;
 Five educational tracks of workshops: Living and Working with Hearing Loss, Relationships and Communication, Advocacy and Access, Hearing Technology, and Young Adult Issues;
 Grand Ole Opry show Saturday night; and
 Sunday Breakfast Awards Ceremony.

The Opening keynote speaker, Vint Cerf, Ph.D., is vice president and chief Internet evangelist for Google. Widely known as one of the "Fathers of the Internet," Cerf is the co-designer of the TCP/IP protocols and the architecture of the Internet. In December 1997, President Clinton presented the U.S. National Medal of Technology to Cerf and his colleague, Robert E. Kahn, Ph.D. In a pre-convention statement, Cerf said he plans to speak "about technology and hearing assistance including the role of mobile, Internet-enabled devices."

Dr. George A. Gates, Scientific/Medical Director of the Deafness Research Foundation, will moderate the Research Symposium, An Update on the Latest Hair Cell Regeneration Research. He will introduce his distinguished colleagues in the field: Neil Segil, Ph.D., Director of the Division of Cell Biology and Genetics at the House Ear Institute; Douglas Cotanche, Ph.D., an Associate Professor in the Departments of Otolaryngology- Head & Neck Surgery and Anatomy & Neurobiology at Boston University School of Medicine, a Lecturer in the Department of Otology & Laryngology at Harvard Medical School, and a Member of the Affiliated Faculty of the Harvard-MIT Division of Health Sciences and Technology; and Hinrich Staecker, M.D., Ph.D., a tenured associate professor in the University of Kansas School of Medicine.

About Hearing Loss Association of America
The Hearing Loss Association of America (HLAA), founded in 1979 by Rocky Stone as Self Help for Hard of Hearing People, opens the world of communication to people with hearing loss through information, education, advocacy and support. HLAA publishes Hearing Loss Magazine, holds annual conventions, Walk4Hearing™, hosts online learning with the Hearing Loss Academy, and more. HLAA has more than 200 chapters and 14 state organizations.

For further information, go to www.hearingloss.org. For more information about sponsoring an event or exhibiting at the convention, please contact Christopher T. Sutton at 301-657-2248, or email csutton@hearingloss.org. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301-657-2248 (Voice and TTY).

Please....

Check out my Walk4Hearing Page! I participated in the Tampa, Florida walk last year, and with the support of many of you I raised $1200.00!! I would love to meet or exceed that goal this year. I know that budgets are tight everywhere, but this is such a worthwhile cause. Hearing loss affects people all around us, and HLAA is at the forefront trying to make sure that we have the education, the advocates in Washington, and the support that we need to best be able to not only survive, but thrive in the hearing world around us :).

My personal connection with HLAA started nearly two years ago when my audiologist recommended that I join HLAA to keep up with the latest in hearing loss news. I had little interest in things related to hearing loss or deafness...I signed up merely to humor the woman :). A few days later I got an invitation to the National Convention in Oklahoma City, OK, and the rest was history. Being with people that were like me was so comforting and reassuring and relaxing...I fell in love with the organization immediately. I came home to Tennessee and got involved with the Nashville chapter. It has changed me in so many ways...I am so much more confident, so much better educated, and learn something new every week about things I can do to make my own life as a hearing impaired person easier. I wish I had found this group long ago!

I am passionate about making a difference in not only my life, but in the lives of deaf and hard of hearing people around me. Won't you please donate whatever you can and help me reach my goal?