Unorchestrated.

[Adj: Not orchestrated; unarranged or off the cuff]

I would venture to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations. These two quotes above are most often what I thought. It was and is probably not very obvious to anyone (except to my family) that I am struggling to hear, most often past the extra noise. I put my emotions in the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo: and I feel I hide the emotions well, until I can no longer conceal it.

Just%2520smile%2520and%2520wave%2520boys

Communication. Hearing. Deafness. My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them. I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different rings. They both had different pitches and instead of just a constant steady ring, they made patterns almost like a broken record. This is where my first annoyance started. And I thought of the Grinch. I thought of Nigel.

NF2 is a disease where you often feel complete isolation in dealing with the different side effects caused by the tumors; but what I should know or realize by now is that I am not alone. Maybe there are a few extremes, like my sweet-smelling aroma–which I still smell!!! But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which I thought was fun. And then I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars, an accordion, and clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as loud) and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it sounds more like a child just sitting down and playing random keys up and down the piano. But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the “music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast—
every creature that has the breath of the Lord—praise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)

References:

Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.

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9 Comments

Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Muffy, Random, Uncategorized

9 responses to “Unorchestrated.

  1. Mel, I always read your blog..it give me some sort of strength within which I myself cannot describe it (in words)…the feelings that you feel (isolation) is part of my life. Maybe the answer to that feeling is to share it. (What you do now). You are strong beb!!!

    • mel

      Hi Syahidah. Isolation is something anyone can feel, but then you add a rare disease and it gets even more tough. I know you understand this and I hope that in sharing you too can find a better peace about what you go through. It is not easy. I find it easier to blog about rather than in conversation, but I am trying to do better. 🙂

      “That which does not kill us makes us stronger.” ~Friedrich Nietzsche

  2. estherbentonmorford

    Can you play the piano, even though it is distorted? Or do you hear it at all?

    • mel

      If I have my hearing aids in turned up all the way and the piano on max volume, I can hear it. But if someone is playing a tune, I would not be able to pick out the song. If that makes sense. As for me playing, I can’t play like I used to due to my hands just not stretching that far and curling fingers. However, it is great OT and I should just force myself to sit and play a few scales everyday to keep my fingers in movement. Who says I need to play songs? LOL 🙂

  3. Jane

    As I’ve interpreted for profoundly deaf people over the years I’ve often thought how hard complete silence would be. But after reading your blog today I’m challenged to think of the other side of this world of being hearing impaired – hearing the annoying and frustrating and random noise you hear all the time. I really can’t imagine that either. Thank you for taking the time to explain this part of your disease that is such a very real part of your life every single day and night. I love you Mel and I’m always praying for you!

    • mel

      Thanks Jane! Sometimes I think to myself, “I have to live with this forever” and think complete silence would be better. Both have pros and cons I suppose. The biggst for me right now is if I listen to music, how the noises conflict..so even classical music or soundtracks are hard to distinguish. That is something new…it will just take time to adjust in my brain. 🙂

  4. Pingback: It’s like lab work…Part II | My Life with NF2

  5. Megan

    Sis, thanks for always being willing to share with others the different things you experience from day to day – even with it being hard to explain! You do a great job of it regardless of that setback as you said. XOXO:) Megs

    • mel

      It is interesting for me to go back and read some of these posts—things are so different now but it was all part of the road to where I am now. 🙂

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