Chronic

Chronic disease: A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.

Like, fer instance, Nf2.

I was diagnosed at 22. Lost my sound system at 46. I’ve been deaf for 15 years now, FIFTEEN. You’d think I’d be used to it. NOPE! Rather, I’ve become accustomed to the trials and tribs. Learned a little ASL  I’ve found work arounds.

One that I’m especially happy to have discovered – the voice recog app on my phone. It came in tremendously handy before my big surgery last year. Spine surgery’s more intense than the other, myriad, outpatient procedures I’ve had since my audio shit the bed.

The OR prep nurse, possibly pondering out loud, wanted to know how staff would communicate with me prior to the good gasman knocking me out. My telefonino!

Now, prior to surgery I tend to be a real chat show type. That is, while laying on that flash gurney, clad in my sharp johnny, nursing staff by my side in the OR “green room,” I wanna know everyone’s story – where’d ya grow up; when and why’d ya move to Boston?; do you like it here; what sort of music do you favor? Indulging my inner Oprah keeps panic at bay AND I often “hear” fascinating stories.

Way cool that I got to bring the phone INTO the OR. (Yes. I stopped myself from asking if I could check my email one last time before they put me under.)

Since the hearing went south, I’ve gotten, not one but, two gigs in hearing environments, I’ve lost the center of my universe, my beloved life partner AND found a new one (not that I was looking), I’ve traveled solo to other countries. All while deaf. Life didn’t stop and neither did I

Adjustment happens.

 BUT I def have NOT gotten used to the lack of music.

This hit me hard yesterday. I was at MEEI to get my new hearing aid, (which gives me an awareness of sound ONLY – no Debussy or Copeland, no Jeff Beck or Paul Simon and no words. I can POSSIBLY tell that someone’s speaking but I won’t know what they’re saying). It’s been 10 years since I got a new aid. So many technological advances have come down the pike and MEEI is at tech ground zero.

Subconsciously, I’d gotten all excited and hopeful. Will music, when I’m aware of it at all, no longer sound like a bunch of rocks being thrown down a stairwell? Will I hear the sound of a cello (one of my fave instruments) again?

OF BLOODY COURSE NOT! Tech's not THAT advanced. Also, it's not the aid – my auditory nerve’s kaput. End of my musical story.

Now, I say this but think “I just need to adjust. Music is big ass universe. I CAN find a way back in.”

And I will.

Albéniz, Satie and Ravel are strangers to me now but, ya know, maybe they could hook me up with some of their less subtle friends.