Being Deaf, Well, Mostly Deaf

 In my 39 years of teaching private music lessons, only 1 student has ever quite once they found out I wear hearing aids.  The ironic thing about this was this was after her mother gave me a really good review.  It was during her 4th vocal lesson that the student saw the thin cord of the hear aids on my ear.  She asked what that was and I told her.  The next day, her mother called the company I was working for and quit.  The company did know about my hearing loss and the fact that I wore hearing aids so they weren't surprised about that.  What they were surprised about was the week before the mom gave me a 5 star glowing review and now they were quitting because of  my hear aids.  The only reason I know about this is because the counselor who took the call, called me right after.  She was furious.  I was very upset about  it too, at first.  Then I just  had to shrug it off.  It was the first and so far, the only time that has ever happened.

When I was 13, I had gotten a cold and my mother was a firm believer that if you did not wear a hat,  you would get sick.  This was the late 70s/early 80s.  No one really understood virus-bacteria differences yet.   Well, I really hated wearing my hat.  This was also big hair days.  So I had a cold and did say much to my mom about it.  We had cold medicine at home so that is what I took.  A few weeks later, my ears were blocked.  My ears were blocked from about the end of October to mid-May.  This was not something I said anything to my mom about.  The reason? Remember, I WAS 13.  I thought I would get in big trouble because I wasn't wearing MY HAT! What can I say?  Teenagers get the weirdest ideas in their heads, don't they?  After watching a great many teenagers grow through the teen years, you never know what they think of next.

After my ears were blocked, I really couldn't hear much at all.  There was one particular person who would get mad at me daily because I couldn't hear what she was saying at lunch.  After about a month of the ridiculous tantrums  of why can't you hear me, I just ignored her at lunch unless she was sitting next to me.  Looking back, it was insane.  Someone was supposed to be a good friend, got mad at me because I couldn't hear her?  Wow. Whatever.

By Christmas, everyone of our friend group was used to me not hearing very well in the lunchroom or anywhere really.   

I had the same teacher for Math and Science.  In the beginning of May, I must have really answered very strangely because the girl who sat next to me, Julia, passed a small note asking if I could hear the teacher when he asked me the question.  I sent it back, saying no.  Everyone in that class was also in the same band class as me.  I also had know Julia much of my life.  She lived down the road from me.  In the five minutes between classes my teacher motioned for me to go to his desk to see him.  He was standing and asked if I could hear him when I was at my seat.  I said no.  He then asked how long has it been since I couldn't hear?  I said since October.  He flopped in his chair shocked.  He said, you have not been able to hear since October? I said, yes.  He said okay, go sit down.  He must have called my mother right after school. When I got home Mom told me about the phone call and she said that I had an appointment the next day already.  

I had surgery on my ears about a week later.  I don't remember too much about it.  In the end, it turns out I am one of the small percentage of people who's ear infections that do not hurt.  The ENT said I should have been screaming in pain for months with how bad the infection in my ears were.  I did get some hearing back.  Unfortunately, the infections did do quite a bit of damage and I could get all of my hearing back.

It drove both my brothers crazy that I was partially deaf.  They both would holler for me from the back door and I would be in my room so I would have to run down the stairs to see what they wanted.  Eventually, my mom say one of them doing this and she stopped.  She told both my brothers that if they want to speak with me then they needed to take their shoes off and go upstairs or downstairs to where  I was.  To this day, I do not think either one of my brothers even remembers that I wear hearing aids and what the percentages are of what I can hear.

Side note: When one of my students was little, she loved to tell her friends that her singing teacher was deaf.  She thought that was hilarious.  Then she would say, well, not completely. Little ones are so funny.  You never know what they are going to say!

Fishing and Me

 When I was a child, we camped quite a bit.  I am unsure the first time I went camping, I am thinking probably about 4 or 5.  I am an extremely prissy girl.  I absolutely hate getting dirty, I always have.  Generally, I am not all that fond of being outside either.  Strangely, I loved camping.  I also really disliked the sticky feeling of the anti-Mosquito spray Off.  I could not go in outside without it on.  Mosquitoes loved me so much.

Anyways, I digress.  After my parents got divorced, my mother kept the trunk of her car packed except for fresh food that would go in the cool and our clothes and such. We camped so much that summer.  This particular memory to this day still makes me laugh.  As much as I love camping, I really did not like fishing.  I refused to put the worm or bait on the hook, I would hold the pole, I would not touch the fish, I would not clean the fish, I would cook the fish, and depending on what kind of fish it was, I maybe eat the fish.  Don't hold your breath  though. My brothers really did not like fishing with me. For some reason, I have no idea whatever gave them this idea, that I talked too much and scared all the fish away.  I have no idea why they would ever think that, just because my mother called me her chatterbox, seriously.

This particular weekend, I don't remember where we were going, my younger brother and I were loading our toys in the trunk of the car.  I had more room for toys and books than my brothers.  They started to complain when mom said do you want her to be quiet or not while we are in the boat fishing?  One of my brothers, I don't remember which one, said, can't we just leave her at the boat launch?  My mom was horrified at that, she said no, we cannot leave your sister at the boat launch.  If you want her to be quiet she needs to take her books and toys.  At that both brothers began emptying the trunk of their toys and books.  They then loaded more of mine.  They did leave some of their toys and books just not all of them.  They previous school year I had really got into reading. I had had  a lot of difficulties with reading and by that summer I simply loved to read.

Much to my brothers surprise, I was quiet the entire summer when we all went fishing.  I did not fish at all, nope.  I read my books and had lots lots of adventures in my imagination!

Sometimes I really miss those days.

A Mother's Promise

 At 17, I had my first Fibromyalgia flare. I missed about the last 6 weeks of my junior year of high school.  It was awful.  Then the pain just went away.  After I graduated  University, that was when the Fibro really started and never went away.  Like so many of us, no one knew what was wrong with me. My mother took me to so many doctors. The last one we went to told my mom that I was emotionally disturbed.  She was furious, so furious that she wrote a letter to the AMA. 

After the disastrous last doctor appointment, my mom sat me down to have a chat as she calls it.  She said we were on our own.  Mom promised me that she would be with me all  through it.  She never broke that promise.

In March 2003, I got Vasculitis.  It is actually because I got Vasculitis that I got diagnosed with Fibromyalgia.  Most people who get Vasculitis, it is chronic and it doesn't go away. Me?  I got lucky.  With the exception of the daily headache, everything went away. This is what started the never-ending daily headache.  I was having a few issues in December 2003, I didn't think it was vaculitis, but I wasn't sure so I made an appointment with a doctor at the Cleveland Clinic.  Mom and I went down there the night before and stayed at one of the hotels on the Clinics Campus.  

The next morning we went to the appointment at one of the hospitals, there are several.  Unlike most doctor appointments, the doctors at the Cleveland Clinic encourages family members to go with the patient in the appointment.  There is where I was officially was diagnosed with Fibromyalgia. I cried.  It had a name. I looked over to my mom and she was crying too.  She said the same thing.  It has name.  On the way home mom again promised we would get through this together. 

Because of the support she gave me, when the Alzheimer's began to get into the end stages, I was able to  to keep her home with me until she passed away.