Research Blog–The Beginning

Before I start this research blog, I would like to thank a few people.

First, my husband who has always supported me in all of my efforts to hear better and is always willing to listen about these research trip. And of course the flowers on the table when I return from each trip put a smile on my face.

Second, my cochlear implant friends both old and new. Without all of you I would never have accomplished what I have with my cochlear implants. To all of you who came before me and opened new doors for me in the research world, I want to say thank you. Your endless hours sitting in labs across the country listening to beeps and sounds furthered the technology that allowed me to hear so well with my Freedoms. Newbies remind me on a regular basis to laugh, smile and celebrate the small things in my hearing journey—that ice maker still drives me nuts.

And lastly, the researchers I have met along the way. I always try to tell you how grateful I am for your efforts. All of you (some of the brightest and best in the world), chose to do what you are doing because you want to help us (cochlear implantees). Yeah you might be “geeks”, but you know that maybe just that one small idea/tweak/sound might hold promise for a better program/processor in the future. Your beeps, clicks, strategies sometimes make for long days as a guinea pig but I will be forever grateful to you for doing the work you do.

I am always excited for new opportunities. I am excited to have been invited to participate in a new opportunity for what many think is going to be ground breaking in the cochlear implant world. But before I start blogging about this new opportunity, let’s see if maybe this trip through my research experiences can give a little history lesson (once a teacher always a teacher they say).

I was implanted with my first cochlear implant in 2005 and the second in 2007 and started participating in cochlear implant research in September of 2006. Funny I don’t remember how I actually got started but someone must have told me to contact that first place.

That first trip was ground breaking for me in ways beyond the actual research. I had not had my first CI for even a year so the thought of getting on a plane by myself, needing to transfer planes in the dreaded Chicago O’Hare airport and flying all the way across country to Seattle was pretty exciting and daunting all in one. Imagine this deaf Ohio girl doing this all by herself. I probably could count on my fingers the number of times I had been on an airplane and here I was doing it by myself. Mike was scheduled to fly out a few days later and meet me in Seattle for a short vacation but the first few days I was on my own. The trip was also the impetus to get a cell phone. Till that point why would a severely hard-of-hearing person need a cell phone. At the time Mark (our son) lived in Chicago and I still remember sitting on the plane and calling him. I really thought I was something sitting there talking away on my “cell phone” just like all the other movers and shakers of the world. Funny how the small things so many take for granted are so important when you can’t/don’t have them.

So I managed to get on the right planes and arrived in Seattle safe and sound. I was even able to chat a bit with the shuttle driver during the ride to the hotel. I had no idea where I was going and still remember being intrigued by the fact that they change the direction of traffic on some one-way streets depending on the time of day. Geesh, I hardly ever even encounter a one-way street and then to confuse me with changing direction—big city girl I am not. The next day was a new challenge, get on the correct bus and find this obscure building on the University of Washington campus by myself. Sounds easy now but for a “newbie” at hearing and traveling alone it was daunting. I found my way and managed to complete the testing unscathed. As I remember the testing, it was music related and as Mike says how do they expect you to do that now when you had no ear for music before you lost your hearing. He is correct—I am not good at music testing and just have to laugh at myself while doing it. I enjoy listening to music with my implants, however, don’t ask me about the details of what I hear.

When I made that maiden voyage into the cochlear implant testing world I had no idea where I was going or what I was getting into. Now almost seven years later I look back and see that it has given me a new level of appreciation for all researchers (not just cochlear implant). They spend so much of their time and talent working on things to make life better for people that they, in most cases, don’t even know.

About 9 months after Seattle, thanks to my dear friend Carol B., I was invited to visit the University of Wisconsin. By then I was bilateral and they were studying whether or not a cochlear implantee could identify the location of sound (directionality). I had never been to Madison and after that first trip I fell in love with the city and people at the lab and love getting to see Carol B. while there too. During that first visit they did a couple extra short tests to see if they wanted to invite me back for further testing. One such test I was doing very well on, so the guys (aka researchers) decided to make it harder, and harder, and harder, until they eventually pushed it to the limit that they knew even a “normal” hearing person could not do. I sat there perplexed and stunned it was impossible, all the while the guys stood behind me laughing. Even though most of the people from that particular day have left U. of Wisconsin, I still make sure each time I visit to get in a few jabs of my own. I have been asked a few times how many times have you been to Madison and I say enough times to know the good restaurants and good beers. They are a wonderful group to work with and I can’t wait to go back.

University of Michigan’s research group is another group close to my heart. Another wonderful city and fun group to work with. I first started going there after working with one of the researchers at Ohio University who was a graduate of the University of Michigan (known to most Ohioans as the school up north). They always have some interesting experiments and I especially like doing the testing in noise. Ann Arbor also has some wonderful restaurants and the best cupcake place ever. I have gotten to know some of the Michigan researchers pretty well and it is always fun catching up on their lives and families. They are an amazing group of friends in addition to being amazing researchers.

Another dear friend, Camille J., put me in touch with the group at the University of California Irvine. First time I had been to that part of California and I loved it. The group there was an interesting mix and even included a couple of ENT physicians from Asia. The director of the lab has now started his own cochlear implant company and is implanting his implant in children in China. This time it was my turn to play a trick on one of the researchers. He had twin boys who were less than two months old when I was there. The other lab members said he was sleeping on the couch in the lab because he couldn’t get any at home. So when he asked me how I lost my hearing, I, with a very straight face, said that it was from all the crying my twins did when they were little. His face went blank and he said oh really. He was speechless. So you see it is not all work on these trips. When one spends long days listening to beeps you have to find ways to entertain yourself, sometimes at the expense of the researchers.

My home, The Ohio State University, has been a stop in the schedule as well. I have been there a number of times to work with a PhD researcher, the Otologist, and with some audiology students. Since I am “local” for them it is usually just for a few hours and they often will try new tests on me. I always seem to like to “critique” the experiments which I have been told is helpful to them. There is another recipient that tests there who is my challenge. Jason consistently beats me on the testing and it is always my goal to do better than he does. I have not accomplished that as yet but will keep trying. Margie, another cochlear implant participant told me that her goal is to beat me so we all have a friendly competition going on there. Must be a Buckeye thing.

A new place on the docket is the University of Maryland. The researcher there used to be in Madison and now has his own lab in Maryland. It is a very spiffy place and everything is brand new. Last time I was there they worked me to death and shifted me around to a variety of experiments. One was being done in conjunction with Walter Reed Hospital in DC. I like the variety as it makes the days go faster and allows me see/hear different angles of hearing research. The last time I was there I was excited to do so well on one experiment that they told me I even scored better than some normal hearing participants—I was pretty proud. Both times I have been to Maryland I have also managed go get a few hours off to hop on the subway into DC. So as you can tell I have graduated a bit from Seattle and can now maneuver the nation’s capital.

So this all got me thinking where have I been to do research: University of Washington, University of Michigan, University of Maryland, University of California Irvine, University of Cincinnati, Ohio University, Kent State University, and of course The Ohio State University.

The most amazing thing to me is how all of these labs and others around the country collaborate on the information they are working on. They share information readily and in the end that only helps improve the outcomes. They have the best interest of cochlear implantees in mind. I don’t know that that happens in other areas of research.

New and exciting opportunity this week–more info coming soon!!!!

Advertisements