Thursday, June 16, 2011

The Beginning

On May 25th, I had cochlear implant surgery to implant the internal part of the cochlear device.  This blog is about my journey before and after the Cochlear Implant Surgery.  The best place to start is usually at the beginning right?

I was born hearing impaired. This was not known to my parents or doctors at that time.  There was no reason to suspect it because deafness did not run in their families as far as they knew.  A couple of years later, my sister was born who was also hearing impaired.  Again, no one suspected anything.  My parents began to suspect something was wrong when I didn't talk or respond to normal things like answering when they called out to me.  My mother said that she knew something was definitely wrong when she saw me in the street when a car had come up behind me and honked it's horn at me but I did not respond or react to it.  (I have no idea why I was in the street, but we lived on a nice, quiet street in the suburbs).  They took me to several doctors and the doctors kept telling them that nothing was wrong.  One doctor went so far to say that I was being a very stubborn child.  They would slam doors and see if I responded.  I did of course, I wasn't completely deaf.  After begging several doctors, they finally got a referral to take me to the University of Minnesota Hospital for testing.  Back then, you could not get to the University without a referral, which most doctors refused.  When one doctor finally relented and gave the referral, my mother said they knew at the University right away that I was hearing impaired.  It took about four years to get diagnosed correctly.  My mother said that I had this look of surprise when I heard my first sounds.  Though I don't remember it, I'm sure it was a lot to sort through for me.

These days, largely due to my parent's pioneering efforts, doctors developed a test to be used on newborn babies to check for hearing loss.  I think I read somewhere that 1 in 10 babies are born with some degree of hearing loss.  The scary thing is, that before they got wise to hearing impairment, some children were deemed mentally disabled.  I met such a person in my late teen years, and it makes me angry to this day when I think of a wasted life.

Due to the fact that I hadn't been hearing or speaking for long, I went to Kindergarten more than once.  Once to start learning to communicate and next to really start school.  I went to a mainstream school that had special programs for the deaf and hearing impaired.  I went through years and years of speech therapy at the schools.  It was tedious and boring work and I usually despised it.  I especially hated it as I got older and into middle school.  To my recollection, I was the only hearing impaired student in my grade at the middle school and I hated that I had to go to speech therapy instead of a regular class. There were several hundred kids in my grade alone.  Thankfully, they eventually stopped making me go.  I'll be honest though, as much as I hated all those years of speech therapy, they got me to where I am today.  Most people do not notice that my speech is slightly different and if they do, they think I have an accent.

Right now, I will pretty much skip over my middle school and high school years. Maybe I'll write about it some other time, but for now let's skip over this.  All teens in these years struggle with peer pressure and self identity.  It is worst if there is anything different about you and you don't have somebody solid in your corner.  If you're a teen or young person who is struggling and you're reading this, let me tell you - IT DOES GET BETTER.  Just hang on and get through it.  My life is such an adventure now, there are ups and downs but boy I sure do enjoy the peaks.

I was lucky in one respect - I had a great family.  My mother grew up with 9 siblings and my dad grew up with 13 siblings.  They came from loving families who never once made me feel like I was different.  I am sure that they always knew that they needed to speak as clearly as possible so that my sister and I could understand them.  My good childhood memories can be traced back to the times we spent with the families.  We also lived in a close-knit neighborhood who did things together.  We went to church together, we went on camping trips together, had many neighborhood picnics and parties.  My sister and I had pretty much normal lives other than the fact that we couldn't hear.  We also had two younger brothers who were born with normal hearing.  They also brought joy to our lives too and we remain wonderful friends.

I married a decent and kind man who stayed by me through the thick and thin and I gave birth to a beautiful girl who grew up to be a strong, intelligent and beautiful woman. I absolutely adore them.  My husband and I  enjoy travelling and I feel so fortunate to have been able to travel to the many places we have gone to.  We've been all over the U.S. with our daughter and have started travelling abroad in the last few years.

My hearing did get gradually worst as I got older.  I would go through periods of complete hearing loss.  The first bad one happened weeks before I was to get married.  I was driving my car listening to my Michael Jackson's Thriller tape cranked to the max and then walked into a Target store and my hearing deteriorated to nothing within a matter of minutes.  My mother and I went to my audiologist who checked my hearing and confirmed that it was gone.  Of course I didn't hear the conversation, but I remember him looking at me and asking me if I was doing drugs.  I don't remember how I responded but to this day that question still irritates me when I think about it.  For whatever reason, the need to experiment with drugs never came to me which is why this question still irks me I suppose.

One of my last bad episodes, I went to a different ENT doctor to take a look at it.  He gave me a cortisone shot in my ear, which was supposed to help heal the ear so that I could hear again and it did.  They did a CAT scan to make sure that there was nothing else going on.  The scans came back normal, but out of curiosity, I asked how a CAT scan worked exactly.  The ENT doctor proceeded to explain that a CAT scan takes sliced pictures of your head, then he pulled up one of the scans to show me.  He was starting to point out my ear on the scan, when  he noticed something odd.  He said "hmmmm....", looked at the envelope that the scans were in, then looked back up at the scan and then he turned to face me and said "I know why you're deaf".   He was really excited because he discovered that I had one of the classic symptoms of Pendred's Syndrome in my ear.  Pendred's Syndrome is extremely rare, so I guess to discover it is a pretty unique opportunity.  At that time, he mentioned that I would be a good candidate for Cochlear implant.  This was the first time it ever came up.  At that time though, I thought I was functioning pretty well with my hearing aid and my audiologists agreed.

Since then, I would go through intermittent periods of hearing loss, some more severe than others.  Some lasted hours, some lasted over night and others lasted for days.  Each time they happened, my hearing would come back but never as good as it was before.

In the last couple of years, I wrestled with whether I should get a cochlear implant or not.  The question I had was how much benefit would it give me?  Is my hearing aid failing me or am I doing okay?  The answer became more clear as I realized that I had become more withdrawn and avoided social gatherings including those that I used to enjoy.  I dreaded large gatherings.  I knew that I was missing out a lot and the isolation was almost unbearable.

My next post will be about the medical visits that lead up to the implantation.

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