Saturday, June 8, 2013

What I avoid talking about

Every so often, I ask my children what they want to be when they grow up. As a parent, it's fascinating to watch the answer change over time.
My oldest is on a psychiatry bent right now. We'll see how that shapes up down the road.
For the longest time daughter number 2 wanted to be a teacher, despite witnessing first hand the absolute hell we're going through trying to get my wife a job as a teacher.

The other day, daughter #2 surprised me.

"I want to open a place where deaf people can get together like a community center, but more," she said. "There is so much deaf people can do, but the hearing world limits them." she went on to explain her concept to me of a cultural center, job training facility, and all around think tank based around empowering deaf children.
A formidable task indeed. I told her I didn't think such a thing ever existed outside of deaf schools. Not that I'm surprised, she's so smart that creating a job title or career lifestyle shouldn't surprise me. Simply put: my kid rejects the status quo and substitutes her own. 
I talked to a few people I know in the deaf community and I'm going to communicate with others on her behalf. Not only do I think it's worthwhile and feasible, I think it's about damn time something like that came about.

Some of you know I lost my hearing in an accident years ago. It was a long hard struggle to adapt and rejoin mainstream society. That struggle continues and will always be an uphill battle for me.
Right after my accident, I found out who my real friends were. Some came out of the woodwork to stand by my side and show their support, others would sit across a table and not know how to talk to me. It took a while, but I'm okay with that.
I consider myself honorary deaf (with a small 'd').
Not being raised culturally Deaf, I have a small rare insight into what it means to be Deaf.
I have to work around things people take for granted, such as the telephones and going to the movies. Plug your ears really good and go through a drive through... I dare you. 
Stuff normal people do online, such as renewing a drivers license, I have to show up in person. Here's a revelation: the deaf do not consider themselves handicapped or disabled.
It took me six years to get a job after my accident. Now I'm not blaming the economy or anyone else. I did odd jobs and manual labor to bring something in, but a real honest to goodness regular paycheck took me six years to get.
I still remember the interviews. As soon as I mentioned I was hearing impaired, or deaf, the whole demeanor of the interviewer changed.
"But isn't there a Disability Act, or something?"
Yes, there is. And what a toothless, loophole filled bunch of crap it is.
Let me give you a prime example.
I needed an adapter for my implant that would allow me to speak on the phone with my vendors and customers. The first two I bought at my expense and they served me well, but they wore out after a few years.
Lowe's was all too happy to buy me a new one. It would help me do my job better and allow me to serve customers better. If you could just have a doctor fill out this form...
My audiologist and Ear Medical Group, who has the records, doesn't fill out forms like that. Perhaps if I saw my regular physician...
I made an appointment with a doctor and explained my predicament. Without batting an eye, he explained, "This is my first time seeing you. I didn't perform the surgery that installed that implant. Perhaps someone else could fill out the form."
Everyone says they want to help and follow the law, but by putting in that clause, they're off the hook and aren't required to help.
People are too busy pointing the finger or passing the buck, rather than get out there and actually do something constructive.
And they wonder why I don't come in for regular checkups
Right now, I'm listening to my kids play a game while my wife makes lemonade in the kitchen. In about two hours, my battery will die and I'll be 'in silent mode'.
At night. When I shave or shower. Whenever my rechargeable batteries die... I'm deaf.
I don't have a window into the deaf world. My implant allows me a window into the hearing world.
I did try and resume my old life, but I ran into too many obstacles.
  • Concerts being given by my favorite bands and not being able to understand the songs.  
  • Movies, plays, speeches. 
  • Videos on You Tube.
  • Talking with friends on the phone.
  • Podcasts.
  • Pillow talk.
  • Running a role playing game. 
  • Bike riding. 
Pretty depressing, huh? Here's what I gained:
  • Walks with my wife and kids.
  • Family board game nights.
  • Humility.
  • A stronger marriage. My wife and I learned there is more than one form of communication.
If someone came up to me telling me they had a miracle cure, they would restore my hearing. I'm not so sure I'd want it back.

If you read this far, I'm sure you're wondering how bike riding made it to my no more list. That's simple: no fluid in the middle ears, so no balance. For a former gymnast losing his balance is like a pianist losing his hands. might as well put running up there too, I haven't been able to do that for a while. When I say I had to rebuild my life from scratch, I meant it.

Keeping my sense of humor has been essential, otherwise I'd turn into this angry bitter deaf man, and that's not what I'm about.
I have grieved over the part of me that has died and moved on.
I don't make a big deal of it because I've had to become a better person because of this.
When I come in contact with a person who knew me from before my accident, there is a courtesy to inform them of what's happened. Other than that, I'm try not to mention it because it doesn't define me. I'm too busy redifining what it means to be deaf.   


April Goodwin said...

Something I did not know about you: you are a former gymnast. Cool!

Will Malone said...

Won a gold medal on floor exercise back in high school.