MC Spoo
29Jan/140

Super Bowl

The Super Bowl is being played this weekend, and it's a huge event as normal. For me, I'm rooting for the Seahawks. For one reason: Derrick Coleman.

He has a commercial for Duracell (http://www.youtube.com/watch?v=u2HD57z4F8E) that may be one of the best commercials ever made (but does it really sell Duracell? No.)

In any case, it has had me thinking about how I approached my deafness, and how it was handled when I was a kid... and I am absolutely in awe of this young man's story. My story just isn't anywhere as good... when I was a kid, it was considered functionally acceptable to treat me as a cripple. And the worst thing was that I believed it.

I wanted to play football. I remember going out for the team. I remember trying out for positions, and easily being the best thrower for Quarterback in the bunch. It wasn't even close. I would have been decent at Linebacker or Fullback too. Except, the coach didn't want me to do that. I remember even taping my hearing aids to my head so I could take a hit without them being knocked out. Truth is, I couldn't hear much of anything then: I relied heavily on lip reading and the little bit of sound that came in.

But the coach? He would say "He's deaf. Put him in front of the ball. The only place he can play." I was not coached up at all. I'm convinced the Head Coach told the Defense coach not to coach me. I was just told to squat and diddle... whatever that meant. I was kept out of drills because he didn't want to make the effort to communicate. Basically, he didn't want to change his own backwards ass view of the world where a deaf kid is a useless cripple.

I was too small to be a nosetackle. I was getting crushed in practice, but finding my way. Then one day, I made a few great plays in practice. The snap was bungled, and I dove at it. I recovered the fumble. The next play, I did a nice spin move and sacked the QB. The head coach turned to the defense coach and told him to "sit his ass down" and then berated me for not knowing how to play football. "Don't touch my quarterback, deaf boy."

In another practice, I broke my finger. The coach told me to pull on my finger until it popped back into socket and then made me run the bleachers the entire day. He visibly laughed at me.

The final straw... was before our first game. I came in after school to suit up. I went to my locker to get my equipment... and found the lock has been changed.

I went to the coach and asked him for the combination. He talked to me like a baby, fake crying. I really don't know what he said. I've filled in the conversation over the years with the only part of what he said that I understood: "...and fuck off. I don't want you on my team."

I was too shocked to even cry. I could not believe an adult did that to me. I was only 13 or 14 at the time, and I was trying to do something I loved. I was so ashamed, I never spoke of this for years. I was scared to tell anyone. I don't know why, I just was. I didn't tell my parents... I just said "I quit." and then refused to discuss it further.

In retrospect, what upsets me most is not just his boorish behavior, but the fact that I accepted it. I let this one pigheaded piece of trash prevent me from doing something I loved... Would I have been any good? Who knows. What would have changed in my life if I was good? Who knows... That time is past, and I'll never know... but always wonder what would have been if I stood up for myself and not been so frightened and confused.

And that's why I think Derrick Coleman's story is amazing... he went through this. and he stood up for himself... and he's a professional football player about to start in the biggest game, on the biggest stage. On every level, that is just awesome.

Filed under: Deaf No Comments
21May/130

Odd Sounds…

Last Monday, I woke up... everything was pretty normal.

I took a shower, got dressed, and grabbed my Cochlear implant... I walked down the hallway, got the battery, plugged it in, turned it on... attached it to my head... and then I heard this HUGE MASSIVE TREMENDOUS ROARING sound that almost floored me. I thought I was in the midst of a nuclear explosion, or a helicopter was hovering over my house.

My eyes bugged out as I looked around trying to ascertain the source of this HUGE sound... then I realized... that's the heater.

So I opened the utility doors, and there was nothing wrong. It was running normally. So I said out loud "what the F%%#?" and my own voice sounded like I was bellowing at the top of my lungs and then some.

The heater shut off, and I whispered to myself, almost to my cats... "what is going on?"... and it was still like I was yelling.

I thought... okay... this will pass. I turned the volume down to 1, and the microphone pickup down to 1... it was STILL TOO LOUD, but manageable.

I went into work... and worked my typical crazy Monday... having the pages behind me tearing tape (sounds like a Jet crashing into a 300 ft deep pool of Jello with glass), crumpling paper/wrappers (sounds like Metallica amplified to 14)... by noon, I had a massive, splitting headache and went to the MEI office...

There was NO ONE available to speak with me. So we set an appointment for Thursday afternoon. Which meant I was going to have to deal with this freaking sonic boom of sound for the nest 4 days.

I went back to work and the tinnitus started to hit me... it was hitting me because I turned down the mic sensitivity to 1, and my brain was in "where's the noise? I know there's more noise? Gimme it all, you sweet bastard!" mode. Yes, my brain swears like that. so I had to kick the sensitivity up until the tinnitus went down... and I started slamming down Tylenol to subside the headache.

I went home that night, and walked around very gingerly... avoid all manner of noise, but I still went for a 1 mile walk in the evening... and it sounded like I was randomly run over by garbage trucks without mufflers (it was really just lil' Focus's and Civics and crap driving by... good lord).

Long story short, for the next three days, I listened to the world at sonic boom. The sounds were so loud, I found myself involuntarily cringing from the simplest sounds... the fan on my computer, the tape, teh paper wrinkling, the sneezing, the doors slamming... and sound of my Flash drive and Cochlear remote clinking together... shit, the sound of spit in my mouth when I merely opened by jaw a millimeter.

Thursday afternoon, they give me a baseline test. This creates some sounds to see how your nerves react. It creates what might have been the loudest sounds I have EVER experienced in my life. I have near constant tinnitus at this point from the barrage of noise to go along with... and this isn't my normal audiology/otologist either... She determines that my baseline was so far off the program in my Cochlear that it didn't make sense. My cochlear was amplifying as much as 35 decibels ABOVE my baseline.

I'm like.. wait... WHAT? My hearing IMPROVED?

No, just my sensitivity to sound. It doesn't mean improvement. It means a shift in how my brain perceives sound. It could be because my cochlear has been programmed at 250 pulses, and my brain has decided this is just too "easy" or too slow. I hate when my brain makes decisions without consulting me... in any case, the audiologist set me up with a new program base don 900 pulses a second, which creates a terribly "inaccurate" sound to me that is sharp and bereft of warmth... very strange that only if I start speaking like Mickey Mouse does my own voice sound "loud".

So now I'm "back to the beginning" to locate my baseline again. All the improvements I've had in comprehension are out the door because my ability to perceive sounds from the cochlear has shifted... the new baseline must be located.

Anyone tells you that a Cochlear Implant is easy? It ain't.

 

 

Filed under: Cochlear, Deaf No Comments
6Mar/130

Continuing odyssey of sensory warp

Before I was implanted with a Cochlear, for me, I asked myself a simple question:

Am I ready to be deaf? Not just sorta deaf, but completely deaf?

And I found myself just stating that it was "get busy hearing, or get busy being deaf".

Not many people really drew a line there, because no one really understood what I could or could not hear. My parents always assumed i heard MUCH more than I did... close friends sometimes had the same issue. Then family would sometimes just talk to my mom and dad about me, because they knew I wouldn't hear them. Alas.

In any case, as I get further and further into this... sensory warp of life, I'm realizing I never was aware how much I may have been missing.

I'll digress here... There's an argument that there is nothing wrong with being deaf. It is not a handicap in any way, shape form or fashion. I'll agree entirely with that. But it doesn't change that there is a whole world of sensory input that isn't fully available to a deaf person. Even a "partially" deaf person. Until you LOSE it... you have no idea how much you really had.

I am still hearing things I do not recognize. It is not even spring yet. You have NO. IDEA... how excited I am about the idea of hearing the birds sing. You have no idea how excited I am about hearing wildlife. I want to walk in the woods, and hear my feet crunching on the dried leaves of spring and summer. I want to hear the water running through the river. I want to hear the leaves brushing in the breeze.  I want to hear the "Man eating sparrows" (cicadas).

In the mean time, I heard my cats walking by me last night. Not the "thundering herd" of chasing, but daintly traipsing down the hallway on pergo floors... a clickity clackity sound, which I identified at their nails.

I want to get a clock for my house... just so I can hear it tick.

Filed under: Cochlear, Deaf No Comments
7Feb/130

Cochlear Lessons

Music is still not working well for me. Some I can hear, but I'm mostly pissed because nothing sounds the way it did. Pink Floyd is mostly a muddle to me. MCB is just random noises. Primus is workable, but nothing like it was. Van Halen is just screeching. Chapstik, just sounds like brakes exploding repeatedly. It's weird.

So as far as music goes, my memory is my enemy right now.
I realized something... deep thoughts alert!

The more I can engage in conversations, the more I realize there's a responsibility that goes along with it. It's not something that would occur to anyone else, I think.

That responsibility being, when you're deaf, or nearly so, you have no expected responsibility to engage in a conversation. People accept 'he's deaf, so he won't be able to follow". People will ask you questions, and just expect the answer. There's no flow to the conversation. It's just an interrogation.

Now, people expect me to follow and carry on a normal conversation, just all of a sudden, out of the blue. What they forget, or never considered, is that I have no skill set at this point for carrying on a normal conversation.

I have to learn that. My conversation style has always been built from... well...  BBS's, chatting, IRC, and IMs, which are conversations, but not NORMAL.

A normal conversation is just different. And I don't know all the ins and outs of it properly, so it feels awkward at times as I try to exercise this new found responsibility and engage in conversations. I like it, but it just feels awkward to me.

Doesn't mean I'm not enjoying it: I AM! I've had conversations with people, even family and friends, that are more involving than any I can recall. I've spoken at length with aunts and uncles longer than I ever have before. I've laughed at and along with jokes, instead of just laughing because everyone else was. It's wonderful, this feeling of involvement... and scary at the same time, because of that element of responsibility I discussed previously.

Alas. It will take time. I may never be perfect. But I'm trying, and I appreciate your patience with me, and understanding over my new found paradigm of social awkwardness.

Filed under: Cochlear, Deaf No Comments
19Dec/120

Increasingly Perturbed

I am growing increasingly perturbed by the complete incapability of this world to communicate with a deaf person.

Despite WRITTEN ORDERS to use email for contact, a company still tries to call. The written orders state: "THIS PERSON IS DEAF. CANNOT HEAR YOU ON A PHONE.".

Apparently, that sentence is too vague and difficult to understand for persons in the medical industry.

UN-BE-LIEVABLE.

I may have to locate a better doctor. I just can't deal with the stress of a Doctor office and all affiliated groups being complete, total utter morons about the simplest facts of life. Really, do I need to explain to ANYONE why a DEAF PERSON cannot hear you over a phone? REALLY? That's a concept you need EXPLAINED?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!? ^9999999999999999999

 

Filed under: Deaf No Comments
15Dec/120

Captioning in Theaters

I was very surprised to find the local AMC Livonia has deployed a very nice closed captioning system for most of their screens.

On Friday, we went to see The Hobbit, but the system was broke (so we saw The Hobbit for FREE!)

Saturday, we went to see Lincoln, and the captioning did work for that screen. The technology is called Doremi Captiview (http://www.doremilabs.com/products/cinema-products/captiview/) and it worked fairly well. It had some signal issues, but otherwise, I was able tof ollow a very wordy movie that would have been useless to me without.

Earlier in the day, I'd emailed Emagine theaters, asking when they would put Rear Window or other Caption tech into their theaters. I was advised that they're "testing" the Doremi Captiview at the Royal Oak Emagine theater. They would do deploy more until the status of a law requiring captioning in theaters is fully vetted. I ended my discussion with them by making what I feel is a relevant point (even though I know the answer is "money"): Why does it take a law to get this technology into theaters? Seems silly to me to ignore a portion of your audience like that...

Filed under: Cochlear, Deaf No Comments
12Dec/120

Facts of Deaf

I'm going to share a few simple facts of being deaf. I realize these are concepts so far beyond most people's every day lives, but they are facts...

1. A deaf person CANNOT. USE. A TELEPHONE.

Providing a deaf person with a phone number for ANY reason defies all human logic. It is, in a word, stupid. They should put that in the dictionary... "Stupid: see: giving a deaf person a telephone number for anything."
Do not assume that because said deaf person has hearing aids, or a Cochlear implant, that they can use a phone. It is ignorant and insulting.

Many professionals need to learn this, especially in the medical profession. You cannot give a patient a phone number to set up another appointment. You should NOT send illegibly scribbled notes and prescriptions to the hospiptla with no explanation. Then ignore email queries. You'll lose your patients that way. Why? Because it is just plain ignorant.

2. You may NOT get mad at a deaf person when they don't hear you. To do so is just silly. They're deaf! Why would you expect a deaf person to hear you? That's illogical. Don't get mad at us because we're deaf. In almost all cases, we didn't choose to be deaf, or do anything to be deaf... God just chose us to be deaf. In my case, I'm certain he chose me to be deaf so I wouldn't destroy you all, alas. ;)

3. A deaf person will only put up with the stupidity of "norms" on these issues for so long.

Let's face it... my Mom was right:
Being deaf doesn't make me stupid, but it can make a LOT of people around me stupid.

We accept that you have no idea what it's like to be deaf. Don't be afraid to ask questions. We'll answer you. Sometimes we'll be pissy about it, but we'll answer you.

We're not different: we just can't hear you. Write legibly.

 

 

Filed under: Deaf No Comments
23Oct/120

The Cyborg Cometh…

Guess I haven't written anything in awhile. I think I wanted to just have some great big, awesome thing to say... and the closest I can come to that is:

I can hear.

Yep. The Processor for the Cochlear WORKED. I can hear. And good lord, what the hell am I hearing?

This is a really loud world you folks have here... how the heck haven't you all lost your minds already? I'm hearing stuff that makes no real sense to me.. and realizing how much of the world of sound I missed...

The sound of a turn signal

My Dad and I went out to dinner. He's driving. I'm listening to things as we drive, and I hear the really, loud sound... just for a moment.. trying to place the sound. It's really quite loud. I do not recognize the sound...

We drive a little further, and then I hear it again. This time I ask... "Dad, is that a siren in the distance?"

"No, I don't hear a siren. What are you hearing?"

"a siren, I think. it comes and goes..."

then he makes a left turn into the restaurant parking lot... and I hear it again. This time, I'm looking right at the steering wheel, and the sound is in time with the turn blinker.

I burst out laughing... "Oh! That sound was the turn signal."

The cadence of the turn signal was similar to a police siren (at least in my aural memory of a police siren) and I thought the turn signal was a police siren. yeah.

Typing. Shoes hitting the floor as you walk. Shoes squeak. Phone busy signals. Wind Chimes. The Wind (sounds much different now). My cats...

I had a discussion with my nephew about my implant. I told him "Your uncle Mike is a cyborg now. You know what that means?"

and then he points at my shirt, where the remote for my Cochlear is under my shirt.. .and the light came on it.

"You're like Iron Man!"

"Well no.. Yes. I am Iron Man."

and now he's been going around, telling everyone his Uncle is a cyborg, repeatedly advising his mom....
"you know uncle Mike is a cyborg, right? Like Darth vader."

It's not just that the conversation is adorable and cute... it's that I heard his squeaky little voice and know what he said without anyone interpreting it for me. I heard my nephew.

When I came home from the processor hook up... I was by myself. I walked into the house, hearing my cavernous foot steps.. listening to the sounds of my house... the floor squeaking, the sound of the toilet flushing (WHHOOOOOOOOSH!)... sat down in the chair by my computer... and sent a note to Facebook: "I can hear". Then I just broke down crying... because I knew I'd have moments like that. Where I would be able to talk to my nephew.. and hear what he says. Here him laughing, because Uncle Mike is such a funny guy... hear him say "Good night, Uncle Mike. I love you."

Yeah. I'm 41 years old.

I broke my leg this year. Lost my hearing. Got it back. and I cried.

Filed under: Cochlear, Deaf No Comments
17Sep/120

Side Effects

I think I'm experiencing emotional side effects of everything that has happened these last few months.

I found myself very angry, snippy, and probably way too rough for no real reason today. I took it out on someone else, alas. It's too late to subtract the words.

I think the question I forgot is this: Did you do it for a good? Were your goals good?

I think they were. So tomorrow, I have a meeting, and I'll apologize for being a snippy, grumpster...I hate losing control. I have all these excuses to lose control, but I don't want to. Dammit.

On the "shiny happy" front... Doctor looked at the implant and said everything is good, but it was kind of an odd visit. Like "let me check and make sure you haven't torn my handiwork out" type thing.

yes, the incisions are healing. Yes, it looks correct in the ear.

And that's about it. Just felt short and rushed.

17Sep/120

Complaining about lack of Captioning on Web Sites with Video

Recently, I took the time to write a short, snarky complaint to CNN.com over the lack of captioning in videos on their website...

Description: Name: Michael McEvoy
Webaddress: every freaking video on the site

General comments: Your site continues to NOT provide captioning for videos. Perhaps you think deaf viewers do not deserve to watch video? Or they should just watch it and play scattergories, and guess what's being said during the videos? Sorry if this is not a constructive complaint, but it's plain lazy, and I'm sick of websites treating me like a second class citizen just because I'm deaf.

In CNN's defense, they DID respond (to which I'm happy and grateful):

Thank you for contacting CNN. We wanted to let you know that we are actively working to increase the number of on-demand videos which offer closed captioning abilities, in full compliance with regulations recently enacted by the Federal Communications Commission. If you have any additional questions or comments regarding this issue please feel free to reply to this message.

Regards,
CNN.com

I truly hope they hold to their word here. I mean, it's just common sense to caption. This ain't Charlie Chaplin: your newscasters can't emote well enough to make it clear what they're saying to a deaf person.

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