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Jimbolions - Cochlear Volunteer

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My Story

I was born with Osteogenesis Imperfect (OI), a disease that affects the body's production of collagen. People with OI fracture easily. Those born with severe forms of the disease suffer numerous fractures and may have significant physical deformity. I was born with Type I OI, a milder form of the disease, and while I have had a fair number of broken bones, I live an essentially normal life. 

 

One of the common complications of my form of OI is hearing loss. I first noticed a problem with my hearing in the early 1970's, when I was in tenth grade. I had trouble understanding what some people were saying to me (primarily women or female classmates). A trip to an ENT doctor and a hearing test confirmed that I had some hearing loss.

 

Over the years, the hearing loss gradually worsened. I played in some rock bands, and over the years it became steadily more difficult to play or write music. I began wearing one hearing aid, then eventually a second. They helped for several years, but my hearing continued to fail. I gave up playing music some years ago, and eventually listening to music as well.

 

In 2007 my hearing started going "over the cliff." My hearing aids were of little help. I stopped wearing the right aid first, then the left. Why? Because the sheer frustration of trying to decipher the faint, muddled sounds I was hearing became overwhelming. By late winter of 2009, I was finally deaf.

 

During a routine doctor's visit in the spring of 2009, my doctor encouraged me to see if a cochlear implant might be a possibility. He referred me to a local specialist, who recommended an evaluation at the Hospital of the University of Pennsylvania (HUP). He didn't know if I would be a candidate for the procedure, but thought it was worth the trip.

 

I went to HUP with no expectations. Years earlier, I had been told by local professionals that I wouldn't be a good candidate for the procedure. I didn't want to get my hopes up.

 

After a thorough battery of tests, I was told that I was a candidate after all. Since my deafness was fairly recent, I had a better chance of regaining function.

 

On August 13, 2009, a cochlear implant was performed at HUP. On Friday, September 4 my processor was activated. The results were immediate and dramatic. I was able to clearly hear both my wife and the clinical specialist who was programming my processor. I was immersed in sound, almost to the point of it being overwheming. Footsteps on linoleum. Rustling papers. Keyboards clickety-clacking. Voices. Machinery. Great walls of sound!

 

That weekend, I heard my daughter's voice again, the sweetest sound I'd heard in years. I heard crickets for the first time in decades. When I got in my car for work a few days later, I thought I heard bacon frying and finally realized it was rain hitting the roof of the car.

 

I have made a number of trips to HUP since activation. We've tweaked and programmed. I am learning to listen to music again. On my last trip, I had my first hearing exam since the surgery. I was pleased to learn I'm doing very well.

 

It is a learning experience. Day by day, my listening skills improve. I still have a long way to go, but in my case my cochlear implant was a life-changing experience. I am no longer anxious about interacting with people. Before the implant, simple things like standing in line at the deli were a challenge. My job was becoming increasing frustrating because I constantly felt out-of-the loop. I told my family I was living in a bubble, and in essence I was.

 

Now, I engage people in conversation. In fact, I make it a point to approach people and initiate conversation.

 

And one last pleasant note... I don't "yell" all the time. People I work with have been surprised to learn I'm actually quite soft-spoken. My wife says she finally hears the voice of the man she married years ago.

 

Going forward, I want to help raise awareness of this remarkable procedure. I've learned that only a small percentage of those who can be helped by an cochlear implant have had the procedure. If my story helps raise awareness, it is a small step toward passing along this remarkable gift I have received: A second chance to hear the world again.

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