SURROUND SOUND

Turning Point

2009-10-01T07:37:00.002-05:00

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!

2009-07-22T00:09:00.005-05:00

...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.

2009-07-14T20:05:00.006-05:00

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?

2009-06-07T23:09:00.002-05:00

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.....

2009-05-16T22:11:00.003-05:00

...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

2009-05-11T15:51:00.005-05:00

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....

2009-04-15T21:50:00.001-05:00

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

2009-04-08T17:38:00.000-05:00

My Walk4Hearing Personal Page

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

This just in!

2009-04-06T12:38:00.002-05:00

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....

2009-04-03T15:53:00.002-05:00

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?

2009-04-03T13:59:00.001-05:00

Sign the petition....

2009-02-26T10:26:00.002-06:00

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

Stay tuned....

2009-02-24T10:32:00.001-06:00

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

Incredible!

2009-01-05T18:23:00.002-06:00

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...

2008-12-24T02:02:00.000-06:00

...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!!!

2008-12-22T12:27:00.002-06:00

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!

2008-11-22T20:42:00.002-06:00

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! :)

Another tune-up! :)

2008-11-14T22:33:00.003-06:00

I went to Vanderbilt today for another "tune-up", as I call them. Susan asked if I wanted to do both ears again and I told her that I thought we really needed to as my "good" ear was starting to sound flat. It's amazing that that little bit of sound that I had coming in with my new ear was enough to change the entire balance. She adjusted the good ear until we had it sounding clear and melodious again and then we got to work on the newer ear. I was VERY excited that while I wasn't able to raise the sensitivity in the lower frequencies, we made some pretty good gains in the higher ones. We were actually able to raise the overall volume a bit this time without it sounding too loud. Then we put the two ears together and found that the good ear needed some tweaking with the newer ear's adjustments, so we worked on it a bit longer, and voila! it sounded great!! I usually leave the office with a new map sounding great and by the time I get home it sounds scrambled and I am worn out...but this time we must have done something right, because I haven't struggled with it too much. I did start getting a little overtired in the middle of the day but a jolt of caffeine perked me up enough to keep going. I had a couple more appointments after that so I was moving too fast to get too tired!
In fact...I was listening to my John Denver CD on the way home...the one that I have nearly worn out playing it over and over and over and over again in the car between home and ASL class, home and meetings, etc...and I was hearing words to some of the songs that I hadn't ever heard before!! Awesome...not only are both ears working...they're working fairly well together at last!
I was changing from a sweater to a t-shirt this afternoon...the weather got warmer than I thought it would and managed to knock the magnet off my good ear, rendering me instantly deaf on that side. I was singing at the time (all the kids were gone so there was nobody there to tell me to be quiet) and I got a shock when I realized that I could still hear myself with my newest ear and it didn't sound too bad...that the volume only sounded a little soft and it was almost recognizable as a tune (of course, that's assuming that what I was singing was tuneful to begin with ;)). I have put off "one-on-one" time with the new ear, because I didn't get enough volume from it before for it to be useful in situations with the kids, etc. Now that it's getting loud enough that I can actually take the sound I'm getting and combine it with my lipreading skills, I think I'm going to try working it out by itself for an hour or so every day. The improvement today has made me so excited and has inspired me to try harder!
It's been a crazy week...we have some dear friends who are dealing with personal struggles, I've been back and forth a lot (going to Nashville again tomorrow, in fact...I'm about ready to move there!), and now Ellie is acting like she has the flu. The CDC says that flu hasn't hit Tennessee yet, so I'm not positive...will wait and see how she's doing tomorrow :).
I DO plan to write on the ALDA convention...I didn't mean to get this far behind! :)

Don't try this at home!

2008-11-07T12:04:00.002-06:00

My eight-year old, Claire, asked me before I left for Chicago if I would eat lunch with her at school one day. I promised her that I would when I got home, so yesterday I kept my word. When I arrived at the school I was seated at the visitors' table, which coincidentally is the hooligan table...the table where the troublemakers sit. One particularly adorable little hooligan was sitting beside me and I kind of had my back to him, talking to Claire and her cousin Alexis, who were sitting across from me. Claire told me once, "I don't think they know you're deaf"...apparently, they were talking to me and I wasn't hearing them. So I turned around and the little one next to me had his shirt pulled up, navel exposed, in an effort to entertain me. I kinda rolled my eyes and turned back around. A few seconds later I felt a poke at my shoulder and turned around to find him waggling his tongue at me. I got out a half-hearted grin and turned back to the girls. Another poke a few seconds later, and he had his eyes rolled back in his head.
At this point I decided that action was called for...and I borrowed a clean fork from Claire and placed it against the side of my head...where it stuck. I had it at a bad angle and it fell off, but I had his attention. I tried it again, a little more balanced this time...and it stayed. His eyes grew to the size of saucers, and he said, "you must have a magnet in there!"
I affirmed that yes, I did...I didn't want him trying it at home, after all...and while I had the attention of the entire bunch I took the opportunity to explain how CIs worked and to teach them the "I Love You" sign (the little boy sitting next to Alexis promptly turned to her with stars in his eyes and flashed the sign like a pro). I told the little one next to me that he was sitting next to a bona fide cyborg, then told him that I needed to eat my lunch. I didn't hear another peep out of him for the rest of the meal...I think I won that contest hands down! ;)

One year ago today...

2008-11-05T21:26:00.003-06:00

I woke up at my friend Shari's house, got dressed, and was at the surgical center in downtown Nashville at 6:30 AM. A couple of hours later, I was out like a light and my newest onboard computer was being installed. I woke up with an earache but it was quickly alleviated by some awesome pain meds and the nurses had me on my feet and out the door ASAP. I felt pretty good...in fact, we drove around Sonic on the way home for lunch.
I recovered quickly...I had a good bit of pain and soreness, but very little vertigo, which was a great thing in my book. Two weeks later I was switched on, and the rest, as they say, is history. I was able to not only hear but hear WELL straight out of the gate, with an incredible 96% speech comprehension in quiet score two weeks after activation. This implant has been incredible...in the past year it has simply given me my life back...plus more. I never dreamed I would hear as well as I do...some days I still hear tiny sounds and think, "I can't believe I'm hearing this!"...actually, MOST days I feel that way :). I can talk on the telephone...I can listen to the radio...I can hear music...I can hear my children talking to me all through the house. I am in awe nearly every single day at my gift of hearing...I definitely don't take this for granted...what a gift!
To all of you at Advanced Bionics...YOU ROCK...you have no idea what you have given me...not just hearing, but so much more...a second chance at life, as it were :). THANK YOU!!!!!
A shout out to my friend Wayne Roorda as well...BigBear, as many know him, had his bilateral surgery today! He seems to be recovering amazingly well...no pain at all, and feeling great! I am so thrilled for him!! :)

A busy week ahead!

2008-10-25T22:15:00.003-05:00

Sorry I haven't updated in entirely too long. It has just been so busy here! I'll try to keep it brief (BWAHAHAHAHAAAA!!!) and just sort of let you know what's been going on!
My newest ear is staying busy. I still don't get a lot of volume with it, but I am wearing it faithfully...if I have on one ear, I have on the other. I don't have much comprehension with it, but I have faith that that will come in time. I'm used to the two of them together now...I don't have the stress of having two sounds coming from two different areas anymore...they work together, which is awesome! I go for my next mapping on Nov. 5th, but don't expect a lot of huge changes, since things are sounding pretty good now :).
*I* am staying busy...I'm leaving Tuesday for Chicago, and have been trying frantically to get everything done before I leave! I finally bought me a winter coat last night. I have put it off for several years...I am not a coat person. I like sweaters and layers but can't stand being bundled in something heavy. However, after being told repeatedly that I would need a coat in Chicago, I found one at Wal-Mart that will do the trick! Thanks to all of you who supported Abbie to go to the ALDA convention. Not only is she going, but we are going to be roommates. There was actually a big mix-up about roommates, and I found out two weeks ago that I didn't even HAVE a roommate (we actually had to call to confirm that I still had a ROOM...a big mix-up!). I asked ALDA if they would put Abbie and me together if she was able to go, and it worked out perfectly. You KNOW there will be pictures! :)
I don't know if I have mentioned it on this blog, but I am the chairperson for the Local Host Committee for the 2009 HLAA convention here in Nashville. I really kinda consider myself just the co-chair, because I have some AWESOME help and they know more about this kind of thing than I do :). We have started having monthly meetings about the best way to get publicity, delegating who's doing what, etc., and our first one was this past week. We had a great turnout of volunteers and a really good brainstorming session. The national HLAA office is doing all the actual convention work...our job is to spread the word as much as we possibly can and roll out the welcome wagon when the convention gets here! :)
Might as well get some free publicity here! Here is the link to all things convention. If you want to present, information is there for presenters. Hotel and registration information is all there. Registration is cheapest before Dec. 31st. If you want more information than is shown here, please ask and I'll try to get it for you! :)
I am still taking my ASL classes on Tuesday nights. I really love them and have learned SO much! I will miss this week's class as I will be in Chicago by the time class starts, hopefully. The next class will be a Silent Dinner at a mall in Nashville and we will have an opportunity to get together with native ASL users and talk to them and learn from them! It will be on my hubby's birthday so I have asked him to come along with me...we'll go vote, have dinner, and then muddle through a night of signing together :)! (Hubby gets a new president for his birthday this year! What a treat!) ASL 1 will be over the Tuesday before Thanksgiving. I do plan to take ASL 2 if it's on a night I can go...I am really enjoying learning it. I make a lot of mistakes, occasionally some really funny ones...but I'm getting there!
If you're a person with hearing loss between the ages of 18-35, please go check out HearingLossNation. This is a new website that has been started by HLAA geared specifically towards young adults! The site has been up and running for several weeks now and we are trying to build membership now. I am TECHNICALLY too old for the "Young Adult" program but they are pretending not to notice for now, since I'm enthusiastic about helping them get it started :). If you've never joined HLAA, no matter what your age, it's a great organization...check it out. However, since more hearing loss is more common and therefore more accepted among mature adults, teenagers and young adults often feel much more isolated and different from their hearing peers. HLAA is trying to establish a community for young adults to hang out and get to know each other better and share their stories and experiences. Check it out! :)
Also, I thought this was noteworthy: (copied from HLAA's E-News)

"HLAA Members Lynn Rousseau and Cindy Dyer will be honored with the Oticon's 2008 Focus on People Awards in Denver, October 24, 2008. The awards are given annually to people with hearing loss who are voted exceptional among their peers.

Lynn Rousseau, Gainsville, Florida, won first place in the advocacy category for her work with HLA-Florida.

Cindy Dyer, Alexandria, Virginia, won first place in the Adult Category for her achievements in the field of photography and graphic design. Cindy is the graphic designer/photographer for Hearing Loss Magazine."

I got to meet Lynn when I went to Florida for the Walk4Hearing...and I am a huge fan of Cindy's blog. She is the one that took Abbie's pictures for the Hearing Loss Magazine...and her work is phenomenal! Check out her blog and congratulate her...tell her I sent you!!

Fall has definitely arrived in Middle Tennessee...I have been going through winter hand-me-downs, washing, shopping for necessities. I have GOT to take the girls shoe shopping when I get back from Chicago...they need new Sunday shoes. I love this time of the year...cool, but not cold...soup and sweater weather! It IS hard to get out of bed in the mornings but I swapped out our regular sheets for the flannel ones today and, while that won't make getting up any easier, it will sure be cozy sleeping at night!
OK...that's all I can think of for now...headed to bed! Will try to post from Chicago...if I don't manage to pull that off I'll fill you in when I get back! :)
Love you all! :)

Can you help?

2008-10-07T08:59:00.001-05:00

The end of this month I am planning to be in Chicago for the Association of Late Deafened Adults (ALDA) conference. I have wanted to check out ALDA for over a year now and had a rare opportunity given to me this year...I obtained a scholarship and my expenses are all paid. If it weren't for that, I wouldn't be able to go. I am so grateful for the opportunity...these conferences are a gold mine of information and support. The workshops are SO educational and informative and the support and encouragement of being around people who have stood in our shoes and understand where we're coming from is just out of this world.
I love these conventions, but they're pricey. I actually went to work at Wal-Mart last fall to fund this summer's HLAA convention without taking any money from my family's pockets. Nobody ever complained about the money I spent on it...but I just didn't want to take my family's vacation money or the like just for ME...I would have felt too selfish. I felt that every hour I spent at Wal-Mart was worth it because I knew that the convention would be such a huge payoff for me...the boost I get from being with people that "get it" is just unreal. When I found out that I had been chosen for one of ALDA's all-expenses-paid newcomer scholarships, I was ecstatic...what a great gift!!!
Abbie over at Chronicles of a Bionic Woman is trying to raise funds to go to this same conference. Abbie wants to go for many of the same reasons I do...to be encouraged and to encourage...but Abbie goes a step farther...she shares what she learns with us back at home. I've said before that of the Jen/Abbie duo, Abbie is the brains of the operation...she is able to break down some of the complicated information presented at conventions and bring it home and share it with the rest of us. She has posted on various topics on her blog such as Bluetooth technology, phone compatibility ratings, Web CapTel, and various bits of ADA information that I just can't wrap my brain around. She doesn't just take in this information for herself...she is out to share what she knows and help make the world a little easier for the deaf/hard of hearing people around her. Her blog is not only a fun read, but a wealth of information. She contributes so much to the deaf/hard of hearing world around her...and now we have a chance to give back! She is trying to raise 1,000.00 to cover her expenses to the ALDA convention...so far she is over halfway there. Her goal is to have it all by October 13th...we have a few more days...we can do it!!

Two out of three ain't bad :)

2008-09-27T21:59:00.002-05:00

I got one video done Thursday night, and one done today. I would have gotten more done but I have had computer issues....grrrrrrrr. I have a brand new laptop that has been coughing and spitting and crashing all day today...ugh. I will try to get the third one up in the next few days...but I am not promising anything :)
For now...enjoy the first two! :)

YouTube videos are up!...

2008-09-26T23:42:00.002-05:00

...here!

I have the first one captioned, and am working on the other two. I will try to get them posted here tomorrow night :).
I had my second map today. We set my first program at Hi-Res P, Fidelity 120...my second program was just a louder version of the first. Then I asked Susan to set my third program at Hi-Res S in hopes that a simpler program with less stimulation would be easier to adapt to, and when she started setting the levels on it I was surprised at how much better it was. We got to looking and it turns out that entirely by accident, we had set the programming at 50/50...which means that half of the sound was coming in through my T-mic and half of it was coming through the external mic on the implant itself. That has turned out to be MUCH easier to listen to, and we were actually able to increase my overall volume using that. Katie was in the bedroom tonight talking to her cousin Bethany on the phone and, just using the new ear, I was able to make out a few words here and there. I am thrilled! Not bad at all for 48 hours out! :)
The hardest part has been adjusting to the whole bilateral business. I had gotten used to the way my good ear sounded, and combining the two is taking a bit of doing. Factoring in that the two ears sound different, that it's been thirty years since my brain has worked two ears at the same time, and that one of my ears doesn't work exactly like the other one does, it has occasionally been overwhelming. Today I actually had some balance issues after my mapping...if I took one ear off, or turned my good ear down, I would get unbalanced...it was the strangest feeling! I had heard of people having balance issues with cochlear implants, but since I've never had them before, it had never occurred to me that I would. After being reassured that it was normal, I quit stressing over it and am just muddling my way through. I did take a long nap this afternoon...without ears...and woke up feeling a lot better. I had forgotten how discombobulated I felt the first few days with my good ear...I am feeling it with this one, too...and this time we're trying to work two at once. I may take a lot of naps in the next few days!
As far as the sensations I feel (and yes, DJ, I hear sounds with them, they're not just feelings) here's the odd thing: I only feel them when I wear the new ear alone. When I'm wearing it with the good ear, I don't feel them. This is SO totally different from the first time around when I couldn't wear the two ears together at all. I don't have another map for about another week and a half...so I will have time to adjust to what I have now. I am doing lots of listening therapy...I just love the Direct Connect cables. I plug right into the laptop and can listen to books on CD or music with no outside interference...it's so nice!
Will try to get those captioned videos up soon...watch this space! :)

Surrounded by sound!

2008-09-24T21:59:00.004-05:00

Sorry it's taken me so long to get this post up. We went to lunch after activation and when I got home I started working on the video. That has been largely unsuccessful so far...the model of Handycam that we borrowed isn't compatible with Windows Vista (I am stating for the record that I hate Vista, argh) so I had to go kick the old laptop into shape, install the Handycam drivers on it, and upload video. The first time I did it it saved it into a movie the size of a postage stamp, which wasn't exactly what I had in mind, so now I am doing it again, and it is taking ALL. NIGHT. LONG. to do.
Then we all got ready for dinner, went out to dinner at our local Mexican restaurant and then went to church. Back home now, waiting on the video to upload, still. I will have to get it off that computer and over here on this one where I can edit it a bit in Windows Movie Maker and upload it to YouTube. Did I mention already that I hate Windows Vista? I can't even make my laptop file share or printer share. For crying out loud!
We got to Vanderbilt right on time this morning, and Susan was fairly busy so we ended up not getting back there until around 9:45. I had been furnished with a new processor, new coil, and new batteries, so that was a real treat...the only problem that we had was that AB had sent two processors, and in return they wanted me to send back the original left ear processor AND my beloved right ear processor, which I wasn't giving up, no way, no how. It was a mixup of some sort, obviously, so Susan got on the phone with them and sorted all that out, and then we got to work.
It was actually a little confusing when she started the tones...because I actually heard them before I felt them. I wasn't really sure if I was feeling anything until they started getting louder, and then I could feel the sensation. I wasn't too surprised at it...I had expected to feel something. It was nothing at all like the first activation when I only felt sensation and heard nothing. We went through the rest of the tones and I felt something with every one of them...again, not surprising. I was delighted that they had a nice sound quality to them though!
Then came the actual turn-on...I braced myself for the shock but it wasn't as bad as I was afraid it would be. I definitely felt the sound but Susan's voice was also coming through really well. We discussed it for a few seconds and then she said, "let me try something". I am not sure what she did...but with a few clicks she managed to eliminate nearly all of the sensation I had at that particular volume (several sounds had NO sensation at all...I tested them out by banging stuff on the desk in my own little personal science project, which was highly entertaining, apparently ;)). Then I told her to raise the volume, and the sensation came back, so she clicked again, and most of it dropped out again.
This is a HUGE contrast to the way it was before...before we took the first implant out, AB actually sent a rep to do integrity testing and he and Susan slaved over that ear for the better part of an hour, trying this program strategy and that, and never managed to make so much as a dent in the sensation. I have long accepted that for me to have been deaf as long as I have, a little sensation might be there at first that might take some getting used to...but what I had before was completely overwhelming. It got to the point that I chose to spend the vast majority of my time in total quiet rather than to wear the processor. This isn't that way...as of today I have some "normal" sounds that don't have an accompanying sensation. Granted, I have a very quiet program...my audiogram today looked to be in around the 70 dB level...but I am delighted to have real sounds! My own voice has no sensation at all, which hasn't ever happened before. It looks like I'll be starting small and working my way up, but I am THRILLED to be where I am now...this is a great starting place.
I actually wasn't able to wear the two ears together before...because they were so different. I couldn't handle the sensation on one side and sound on the other, so I gave up the sensation in favor of sound. I've worn the two together all day long today, and besides a slight headache, I have had no problems. Everything seems much LOUDER today...and everything just sounds different. The sounds I have coming in on the right and left sides don't match up very well and it is SO hard to get used to! I know in a few days the brain will blend the two together a little better and I won't even notice the differences...but right now I can :). I am sitting now hooked up to the laptop with two ears hooked up to two direct connect cables on the laptop (it has two headphone jacks...bonus!). I'm listening to John Denver singing "Looking For Space" on YouTube and marveling at how it sounds EXACTLY like I remember it (granted, I'm hearing most of it through one ear!) and trying to refrain from singing out loud (my people are all asleep and would not appreciate my efforts!). I am jumping in with both feet...I know that this time things are going to be different and I am going to do everything I can to make it work this time. I am determined...I am going to be bilateral...I want to be surrounded by sound!
OK...now that I have the video on the computer...YouTube is down...ugh! I'll get it up ASAP...promise :)
More posting soon!