Invisible Jenni

Living with invisible illness in America

Really, I can't hear you.  Or perhaps it is better said that I can hear you, I just can't understand you.  I know that you are speaking, but your voice blends into the multitude of other sounds and becomes a wind tunnel in my mind.

For the past five years I believed that I was going deaf.  I kept having my hearing checked with the same results.  My hearing is just fine, above average according to the test results, well above average.  The problem isn't with my ears--they work just fine--it's all in my head, literally.  I recently had a brain MRI and as with my hearing tests, my brain is picture perfect--it just isn't functionally perfect.  At the age of 36 I have been diagnosed with Central Auditory Processing Disorder.

This isn't something that is commonly diagnosed among adults; unless of course you have recently had a head trauma such as a car accident, or have Multiple Sclerosis or Parkinsons Disease.  So my doctors sent me for a long series of tests to try and find out why this happened and why now, thus the MRI above.  You see while I am not the healthiest of adults, I do not have MS or Parkinsons (although it does run in my family), nor did I have a recent head trauma.  What I did have was a lengthy list of head traumas in my past--I believe eleven was the final count.  So the doctors tell me that this disorder, CAPD, is a result of the multiple traumas and that it has been slowly coming on for quite some time.

So what is Central Auditory Processing Disorder (CAPD) all about?  Hard question to answer, since every person who has it will give a slightly different answer.  For me, I can hear perfectly--if I am sitting in a sound proof room with only one sound coming into my ears at a time.  Take me out of that room and I am lost.  Every sound around me blends together in my mind; it's as if I'm in the middle of a wind tunnel.  The more sounds, the louder the wind.  The audiologists tells me I have a pretty extreme case.  Current testing technology can measure a 5 decibel sound difference.  I can't distinguish human voice at that difference, much less distinct words.

In order to communicate with me, I need to see your face.  I don't really read lips, at least I've never taken a class on it.  I suppose it's an adaptation that I've used over the years.  I watch your lips and face for cues that tell me what you might be saying.  My husband and I have gotten pretty good at this, with new people not so much.  I watch television with the closed captioning on and utilize a FM system when it is essential that I be able to hear someone speaking.  The scariest part of this disorder is walking through a parking lot or along a sidewalk.  I literally can't hear cars or bicyclists coming up behind me.  I have to be extra vigilant about watching where I walk.

So you'll never see my illness, you couldn't pick me out of a crowd.  But I'm still here, Invisible Jenni.  I could be your next door neighbor, your classmate, your co-worker, the person you'll meet tomorrow.  If you speak up please don't think I'm ignoring you... I just can't hear you.

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