Do you hear what I hear?

Last July I pulled a back muscle and was taking muscle relaxants.  I thought the constant sounds of cicadas in my head was just one funky side effect of that unpleasant medicine.  Because the cicadas in my head left before the ones in nature made their annual entrance, I didn’t think more about it.

This January I laid around when I was coaxing a nondescript virus to go away.  And heard the cicadas again.  I concluded this happened when I was sick, or sedentary.  I mentioned it to the doctor and she volunteered to refer me to an ENT.  We threw the term “tinnitus” around.  I declined the ENT referral, deciding the cicadas were a part of being sick and would fade away.  The virus did its eventual exit, but the cicadas remained.  They weren’t always present; they traded off with a ringing sound that was softer.  I realized I probably had tinnitus and told my children about it.  My daughter has a friend from high school who is an audiologist. She suggested I contact her for an ENT recommendation.  I texted her and she recommended I see an audiologist first.  I made an appointment with her.

Prior to the appointment, I allowed myself one look on that bain of medical folks’ existence, the World Wide Web.  I chose the Mayo Clinic’s site to read up on tinnitus.  Here’s the Mayo Clinic site.

I know several men who have tinnitus and all of them said there is no treatment for it. They said they learn to tune it out. I felt some despair because I knew it was a permanent condition. I also thought people got it who were around loud machinery, shot firearms, and/or went to loud concerts. I did none of those activities. At first, I couldn’t imagine living with this ever-present sound.  I love the quiet; my favorite conditions for sleeping are pitch dark and no sound.  When I was growing up on the farm, we didn’t have air conditioning so we slept with the windows open.  I remember having trouble sleeping when the irrigation pump ran at night.  I could sleep through intermittent or pitch-varying sounds, but a consistent sound was a challenge.   When I was a teen I stayed at my aunt’s house for a couple of weeks so my cousin and I could catch the early morning bus together to do corn detasseling.  There were four people in the house, in four separate bedrooms and they all played different radio stations while they slept.  I struggled to fall asleep the entire time I was there.

I came to understand I probably have sensory integration issues, with auditory being an impacted sense.  When I briefly owned a Harley, one of the first things I requested was to remove the unique Harley pipes because I couldn’t tolerate the noise. I knew it was sacrilege, but that patented, loud sound was wearing to me. I learned to wear ear plugs when I took longer motorcycle rides.

I find white noise distracting instead of soothing.  When I am home alone, I rarely have the TV or any music playing.  I love quiet space.

So, to face the potential of permanently having sound INSIDE MY OWN HEAD that I couldn’t regulate/control was a sad prospect for me.    I have noticed when I am busy, I don’t notice it so much.  When I am tired, it is more noticeable, and in general, I get irritated more easily. When I have an active cicadas-in-the-head all day, I tire faster.  The days of the ringing sound are less challenging.  Always, in the evening, when winding down and tiring, the sound is ever-present.  Some nights I have difficulty getting to sleep.

One statement in the Mayo Clinic’s explanation of tinnitus is that its onset often happens at age 60 and up.  I am just now 61 years old and was shocked that I was getting an age-related condition.  It occurred to me I may continue to face age-related conditions.  I know, I am sixty-one; and yes, this had occurred to me before.  But it was theoretical; this is getting real.  When I felt fearful I coached myself, that I could make it at that moment, and could make it until I had my appointment with the audiologist.

Ken went with me, which the audiologist welcomed, to get his input as well.  The first part of the appointment was the interview.  The audiologist was clear the ringing in my ears is tinnitus, but the intent was to find out why I have it. I said I had read it could be anything from wax build up to a brain tumor.  She asked the appropriate questions to rule out a medical referral. She confirmed that I already have audiological issues of auditory sensory integration and trouble with persistent sounds.  Both of these have technical names, which I promptly forgot.  I said I had had a hearing test with the school district’s audiologist around ten years ago, as my daughter encouraged it. I thought she mumbled; she thought I had difficulty with my hearing. At that test, I found out I experience hearing loss with ambient sounds: sixty percent loss of hearing in one ear and forty percent in the other. At that time I realized I read lips to compensate for hearing in noisy conditions.

The next portion of the appointment was an ear exam.  I was disappointed to find out I did not have wax build up, as that would have been such an easy fix!  After that, an intern did the actual hearing tests. She was in another room, speaking to me through a microphone, while I wore hearing devices of some sort.  She was behind a double paned, tinted window so I could see her, though not clearly.  For the first test, I was to indicate hearing a tone by pressing a clicker.  We were clicking right along, at fairly regular intervals, then I  heard no tone.  A little bit of time would pass and I would finally hear a faint sound again. I would click, and the intern would write something down.    I found myself leaning toward the direction of the sound, as though that would help me hear it.  When I couldn’t hear the tone, I could hear the cicadas in my head and felt sure that was the cause of missing those soft tones. I knew I was missing tones, and I became sad and teared up. Most of the sadness was the realization I was not acing this test.  I am chagrined to admit this, but it was not because I was missing sounds, but because I take pride in performing well on tests.   At the end of this test, the intern asked if I was doing okay, and I lied and said I was.  I immediately thought of the students I had worked with for a couple of decades who struggle with test-taking.  It wasn’t a case of not knowing the material, but attempting to demonstrate their knowledge in the method given would run into their learning disabilities.  They knew they should be able to answer the questions, that their classmates could, and they couldn’t.  Their own kind of hell that they had to face in their whole school experience. I have been a fairly good test-taker and am not used to struggling.   That day, I got a small taste of what they showed up for all of the time.

The next test was the intern saying a word at a time, and me repeating it back.  As the volume diminished,  so did my ability to repeat the word back to her.  It was an illuminating process.  I found myself guessing at some of the words, and quipped, “This is a great example of how miscommunication happens.” or “Could you say the word in context?”  I finally gave up when I couldn’t make an intelligent guess at the word.   I realized quickly though, there have been a lot of times I have strained to hear a word, or sentence, for a while now.  And that I have been working pretty hard to hear people speaking.

The audiologist explained their findings: I have a mild hearing loss.  This news did not hit me too hard; it was actually a valid explanation of my experience I had just had with the testing, and in recent times, trying to hear all of the words in conversations.  She did tell me I have every right to advocate for people to talk to me face to face and explain I have a mild hearing loss. I also have permission to ask people to turn down the volume of TV’s, etc in restaurants.  If not for me, she asked me to do this for all of the people who struggle with hearing and other unseen conditions.  My husband recalled a time I had already asked a restaurant to turn off a TV, so he didn’t think I needed much encouragement to advocate for myself.  I agree, but it is useful to know why I have felt the need for this.  Having a mild hearing loss is much better than that I am persnickety.

I was most interested in the audiologist’s recommendation for the tinnitus.  She said something like this:  the tinnitus is my ears’ attempts to hear as they are aware they are missing sounds.  Or something like that.  I will have to ask her again, because I was absorbing a fair amount of information and emotions at the time, and didn’t get it all.   She believes hearing aids could actually help this type of tinnitus.  I am getting fitted for them, and am too scared to hope they will really work.

I told my siblings my results, finding out one of my sisters and one brother-in-law have this condition as well.  They have not been offered any treatment options.

In the meantime, I recognize I am going through the stages of grief, in living with this new condition.  The day after seeing the audiologist, I had coffee with two former co-workers, now co-retirees.  One was sharing about the next step in her cancer treatments.  She has a type of cancer that is challenging to treat and she was going to have an appointment the next day to find out if a tumor was responding to treatment.  I asked how she was feeling about it and she said: “It is what it is.”  Whatever she found out, she would then do what was indicated.  I hesitantly told my friends my new-to-me condition.  I acknowledged it wasn’t a huge medical challenge and a lot of people have it.  My friend said, “Yes, you still have your ear.”  She is so right!  I have every confidence I will get to that matter-of-fact acceptance, but I am not there yet.  I am experiencing all of the other stages of grief, in varying ways and in varying degrees.  Sadness and shock are my most prevalent places right now. A success is when I haven’t thought about it for a period of time.

I have told myself I will face this with grace and dignity.  Then I remembered who I was. Ha! I am not grace-ful OR dignified! No, I am facing this a day at a time, feeling whatever I am feeling at the moment, finding bits of humor here and there, stumbling along looking for a new equilibrium.  It ain’t always pretty, but I am certain I will land on my feet once again.  In the meantime, look at me when you’re talking to me, and have patience with me if I ask you to repeat yourself.