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?

Sign the petition....

....to help spread the word about our need for captioning!
Check it out!

Stay tuned....

...for my experiences at Greensboro, NC's DeafNation as one of CSDVRS' newest VCO outreach specialists!

Incredible!

I went for a mapping today and as soon as I walked in Susan took me to the sound room. I was a little apprehensive about that because usually when I go for a new map, I do better in testing AFTER the map than before, ya know? I go in to have sounds filled in that have dropped off or disappeared...so I don't feel really confident in the sound room before that...but that's how Susan does it so in I went. First she tested my right ear...and I was SO disappointed! This is my GOOD ear, ya know...and it was just not up to par. I missed several of the sentences in quiet..I haven't EVER done that badly before! I was sitting there thinking, "this ear needs a SERIOUS tune-up!"! To add insult to injury we did the sentences in noise and it was worse than ever. Then we did single words, and ugh! I don't know what the score was, but it wasn't good.
Then she tested the newest ear, and the results were equally dismal...I heard PART of one sentence in quiet, and a couple of words in the single word test. She said I had about seven percent speech comprehension in that ear. Not too shabby, but not too hot either.
Here's where it got really freaky. She tested me with both ears together, and I scored a 96% on sentences in quiet. It's not the first time I've ever done that, but it's the first time I've ever done it with both ears together. I think I would have actually scored higher but I had the volume off a bit on one of them. The sentences in noise weren't quite that high but they were at about 80%, and the single word test I scored 78%...up from 68% the last time I took that test!! And this was BEFORE my map!!!
So, in a nutshell...the last time I was tested I had one ear that did all the work and one that did none of it. This time I have two ears that, while they don't contribute equally, and both of them are lacking in one way or another, work together AS A TEAM. I don't keep my left ear loud enough that it seems to be doing much anything, but surprisingly, it is...just kinda quietly plugging away over there...and the two ears are now doing what the one was doing all by itself before.
I did have to get them both tweaked just a little...the right ear was missing some higher frequencies and I am happy to have those back because my music sounds better. I have two new CDs...David Cook and Celtic Woman...and I had them going all the way home...they sounded so good!
I do have more to report, but thought I would get that out there first :). I was just so surprised...I had no idea I was making that kind of progress!!

Merry Christmas...

...from my family to yours. I'm so grateful for every one of you that has touched my life this past year...I hope your holidays are precious and filled with joy and fun (oh, and lots of yummy food, too!). Much love to you all! :)

Early Bird registration ends soon!!!

I hope you all know by now that the 2009 Hearing Loss Association convention, celebrating SHHH/HLAA's 30th birthday, will be right here in Tennessee...June 18th-21st, in Nashville, at the beautiful Gaylord Opryland Resort and Hotel!
If you haven't ever been to a Hearing Loss Association convention, I hope you'll consider attending this one. I attended my first HLAA convention in June of 2007 in Oklahoma City, OK. It was literally a life-changing experience for me. I had never been to an event with other deaf and hard of hearing people...at that time I had never even been to an HLAA meeting...and it was such a unique experience. For the first time in my life I wasn't different from everyone else...the people all around me had hearing loss just like I did. They didn't mind repeating themselves. They knew to look at me when they were talking to me and didn't all talk at once. They tried their best to include me in all conversations because they knew what it was like to miss out on the fun and they wanted me to be included. All of the workshops were captioned and interpreted so that nobody missed a thing. It was the first time I had ever been in an environment where I didn't have to struggle to keep up with what was going on around me and I just felt so at home knowing that I was in the company of people that understood what I was feeling because THEY HAD LIVED IT. I came home much more confident, more comfortable with myself, armed with new information about the latest technology, and blessed with many new friends. It was just an incredible experience!
Kicking off this year's convention will be keynote speaker Dr. Vint Cerf, the vice president of Google, who will be speaking to us on technology and hearing assistance, including the role of mobile, internet-enabled devices. The convention has quite a few workshops offered on many topics, including technology, relationships, health and wellness, and several others. This year there will also be several workshops geared specifically towards young adults between the ages of 18-35 on issues relating to them. When the workshops are over for the day, the social events begin. You will not want to miss this!!! You can find out more...including all the information you'll need to know to register and about the hotel...here. If you register before Dec. 31st, you can take advantage of the Early Bird discount...$50.00 off the registration price.
If you have any questions, PLEASE don't hesitate to ask...I would love to help as much as possible. I'd love to see every one of you there...if you've never been to a convention before, 2009 is the year to go!!

Well, pooh!

I was going to write a post for the one year anniversary of my activation and today was supposed to be the big day. The 22nd, I thought to myself...the big day. So I am tripping down memory lane, looking back in the blog to read what I had to say one year ago today, and pft, it was the 20th. I should have known...I kept thinking it was the Tuesday before Thanksgiving last year, and didn't know how in the world it could go from being on a Tuesday one year to being on a Saturday the next. I am sick, people, with a cold/sinus infection thing, and have been feeling really icky the past few days, so that's my story, and I'm sticking to it :). I knew it was bound to happen...with three little girls sick my number was bound to come up sometime. I am also in possession of one really sore eye...Claire was trying some High School Musical number or another tonight and poked me in the eye with her fingernail, scratching it pretty good. It's red and sore enough to be a constant reminder, but thankfully I can see with no problems. We were supposed to have family pictures made tomorrow but they were postponed...it's a good thing, I think, as I seem to be falling apart!
Anyhow, one year ago Thursday Susan put my shiny new electrodes through their paces one at a time and then, with the flip of a switch, fired them all up and sound flooded my brain for the first time in eight months. After a few seconds of outright hilarity at the way my new ear sounded, I was just awestruck by the wonder of it all...it worked perfectly, just as it was supposed to. It sounded different, yes...but I was hearing sounds. In the first few days I heard environmental sounds that I had never heard before and heard voices with a clarity that I had never had before. I was one of the fortunate ones that had exceptional results from the very beginning...I think because I was only without sound for a few months and the brain was READY to hear sound on that side again!! I have never looked back...it's a decision that I am so glad I made and would do it again in a second (although with both ears done to my satisfaction, I'm in no hurry to do it again any time soon ;)).
A lot can change in a year...I have gained so much independence, so much more confidence...I've gotten pretty good with the phone, pretty good at hearing the kids in the back seat (not always a good thing). It's gone by really fast...hard to believe...and I'm excited to think about all the exciting new things that it will bring me in the future! :)