Do you hear what I hear? No

My 8-year-old nephew tended goal in his hockey game I watched this week. I am no hockey fanatic, but I am pretty sure that is not his position. He was the most unconcerned goalie I have ever seen -- oh, did the puck just hit my skate? Whatever -- and his nonchalance got me laughing.

I didn't want him to know I was laughing at him -- of course, his mother told him when we got home -- and I wondered if he could hear me.

I quickly dismissed the idea because it was ludicrous that he could hear me in the hockey rink because he was on the ice with 75 loud kids, and it was.

But what then occurred to me, and was much harder to dismiss, was that I have no idea what normal people hear and what they don't. No concept.

UPDATE: I also did not hear the bag-piper at my sister's party either. I did hear the snare drum in some song they blasted at 1:44 a.m.

"Loser" captions well

Captions don't always work.

My boss was testifying on the Endangered Species Act and YouTube automatic captioning has him referring to the dunes sagebrush wizard, instead of the dunes sagebrush lizard.

I am happy to report that my caption phone, which my brother-in-law installed today, perfectly captured, "Matt is a loser."

I'm never moving to the West Coast

I have been through one earthquake that I know of. I am counting on there being another during my life.

Work isn't so sure. They scheduled a Shake-Out drill today and made a point to give us chair users special instructions: Stay in your chair, get away from windows, bend over if possible, cover your head and hold on.

I wasn't sure how to cover my head and hold on, but as I told one of the supervisors that asked if I needed help, I am a pro at duck and cover. So I was all set for the drill.

I waited and waited. Then someone stopped by my office and asked how I liked the drill.

I totally didn't hear the alarm. I am doomed.

You're killing me, Bruce Springsteen

When Bruce Springsteen announces tour dates, as he did yesterday, I agonize. Every Springsteen concert I have seen this century, I swear it will be my last.

Tickets are costly, but mostly it's because of my worsening hearing. Except for well-known anthems like "Badlands," I spend the first minute of almost every song trying to figure out what it is. Then I try not to lose track of the song.

But to be there! To feel a part of something, a rock 'n' roll exorcism, I believe Springsteen calls it. It is pretty amazing.

Springsteen has such a gift. He can sing about cars and driving, and someone who hasn't driven in years can swear he is really singing about wheelchairs and disability crap.

But I can't hear anything he says in concerts, and I feel so wretched for not understanding some of my favorite songs.

And if he plays from his newer albums, I am totally screwed. It's not that I don't like them, but he really seems to drown out his words with the music, especially on Magic. And the first release from the new album Wrecking Ball does not sound promising. I can hardly hear the words.



I know my hearing is getting worse. I somehow mistook the name of my nephew's Pinewood Derby car as "Felix Jaguar" when he told me the name "Joe's Jaguar."

In my defense I knew it wasn't Felix Jaguar, but I swear to you that is what it sounded like.

I sort of blame the Seeger Sessions concert for my anguish. That is the only recent tour I have skipped. It wasn't going to be convenient to get to and I thought my hearing made it not worthwhile.

Of course, the Washington Post reviewer wrote of that show: "It was the best live show I've seen in at least five years. (And I've seen a few.)"

Tickets go on sale Saturday.

How not to win friends and influence people

My boss asked me to write a short news release on this fellow employee who won an award, so I emailed the guy and asked him for a quote. He didn't get back to me, so I called him this morning and while I could not hear much, I did hear his busyness and offer to try to get me something.

I decided I better tell my boss I had the release ready except for the quote and I wasn't sure if he wanted to wait or get someone else to call the guy and get the quote.

Instead, our deputy came over and called the guy and got the quote and then wrote up notes from her interview and emailed them to me. And I finished the release.

And then he emailed the quote.

Not hearing is so rotten.

Turn down that racket

Another bad thing about not hearing well: My 6-year-old nephew just wandered into my room and told me he could hear my TV out in the other room. I turned it down, apologized, and then he left.

Thanks, MetroAcccess, for wasting my afternoon

Several years ago, I read a story in the newspaper that talked about how odd it was that MetroAccess, the Washington area's para-transit service, required people with permanent disabilities to recertify every few years. As if we might get better.

A Metro official said at the time, "We are considering broader changes to the application and eligibility assessment process for the coming year." This was in May 2008.

Apparently, those changes did not involve removing the silly requirement that people who have MetroAccess and have permanent disabilities go in and answer the same type of questions the same way they did before.

Oh, but there were changes, to be sure. I had to go downtown for the process. They closed the more convenient office in Virginia.

My pickup window was 2-2:30 today, but because of all the rain I asked Mom to call and make sure it was still on. It was, but my window was now 2:15-2:45. Not sure when they planned to tell me this. Never, I guess, because I got no call from them until the ride showed up at work.

We got to the Metro office about 3 for my 3:30 appointment to get recertified.

On the way in, this woman said to me repeatedly, "God bless you for that dog." It seems like Claren is the one who is blessed for dealing with me. But whatever.

At the office, I was OK waiting. I had a book. It's a good thing it is a big book because I did not get in until about 4:15. I signed three papers, said what subway stations I use, got weighed (450 in my power chair) and got my photo taken for the ID, and then waited for my ride home.

We picked up another rider on the way home. That was cool. It seemed on the way home. Then I noticed we were right near my work again. "Huh," I thought, "I guess the other rider lives near my office." I was going home, not back to work -- this was confirmed.

Then we stopped in front of my building. I said I was supposed to go to another address, but told the driver to just let me out and I'd get home from there. I was so mad, but it wasn't the driver's fault and I hear too poorly to argue.

The subway was good -- the elevator was right there and the train seemed to be wait for me -- but then I got to my stop and pulled up to the elevator just as it opened and filled with people who were able to walk.

I left work about 2, got home about 6, was crabby all night, so thanks again, MetroAccess.

If an awesome tree falls in the forest, is it still awesome?

I know I am awesome and all that, but it is really hard to share that with people when you don't hear well.

I went to the main Interior building last week to get my pass. It was painless. We have a shuttle that takes us there and brings us back.

While waiting for the shuttle on the streets of D.C., a woman joined me and we had a nice little chat. Of course, I didn't understand a thing she said. First, I thought she said she was a recent hire, then I thought she said something about 7 years. She told me her name, but I did not catch it.

One of the things I liked about my old job was the comfort I took because people knew me. Even if I did not hear a question or answer or I ignored them, they still thought I was awesome.

But now, no one really knows me. And it gets harder and harder to show it as my hearing gets worse.

Paul via rear window captioning

When I saw Superman Returns with rear window captioning, I could not position myself properly. I remember thinking that nobody is ready for someone with two disabilities: the wheelchair user who sits in his chair but also needs the captioning tool.

In the local theater at Tysons, the captioning system is a piece of Lucite on a gooseneck support that fits in the drink holder. You adjust it so you can see the captions showing on the back wall and the movie. The gooseneck wasn't really tall enough for me in the wheelchair. I wound up reading the captions, then looking at the screen and vice versa.

When I got to Paul Saturday night and saw the captions on the back wall, I quickly asked a friend to go see if I could get the system. I was pretty excited. I didn't expect to be able to hear the movie but now I might be able to.

I got another friend to help me into a theater chair, but even then I could get it so the captions and action were in one line of sight. Still, it was a million times better than it would have been.

I would never have understood the English guys who are the stars and Paul the alien would have been hard to lip read. As it was, it was pretty hilarious.

I hear dead budgies

When I was 12, I got Marcus the parakeet. He was every bit as regal as the name. He was blue and black and white and was the best budgie one could ask for. He sat on my shoulder whenever I played games on the Commodore 64. He sort of talked; I can remember "pretty bird" being scattered in his chatter. Layla came a few years later. She was quicker to nip at me, but she was handfed as a baby so she wasn't scared of being scratched by my finger. She loved it almost as much as Claren. The last two, named either Ann and Nancy or Lilly and Roxanne came a few years after that. Someone asked the pet store I worked at to take them. I did, even though they weren't the tamest of gals. But that's OK. They were pretty. Even if they didn't talk in English, you knew they were around.

They are all long dead, but when I take a nap in the family room after work, I hear them chattering away. Really!

It doesn't matter what is actually going on: computer games, Law & Order on a TV in the other room, water dripping, food sizzling.

Whatever is happening combines with the hearing loss and ringing in my ears and voila: Budgie chatter!

If I strain, I can tell the real sound, but I want to nap, not strain.

Even today, when I was thinking about it and my niece and nephew were playing a loud computer game ... you know what I heard? Dead budgie chatter.

This is nothing like college

Rodney Dangerfield's Back to School left me woefully unprepared for my return to the classroom.

Granted, I am in a 9-5 class at work about a new computer system we're getting, not on a campus full of dumb jocks and pretty girls. But, I've finished day 2 of the class today, and no one has invited me to a crazy bacchanal or even asked me to perform the Triple Lindy.

I am getting disillusioned and really tired.

At first, I thought the class would be a fun change of pace, even though I wouldn't get to work on the Detroit auto show much. I am also the only person with a dotcom background and several people have told me how key I will be in designing the new dotcom interface. I also got $10 worth of gift cards to the cafeteria so I was thinking, "cool."

But I never knew how tiring it is to try to listen to someone when you can't hear that well. There are just nine of us in the class, so it is not like I sit far away. I can hear the instructors fine, until they start talking to another student.

I also didn't realize how much I use sight to type and how hard that is in the dark. It's dark so we can see the big screen at the head of the class.

The bathroom in the conference room area is good and bad. The door is not automatic but is quite light, and they are several wheelchair stalls. I can't really reach the paper towels to dry my hands off, though, so I dry my hands on my shirt.

Today, I left the bathroom (is it odd I originally wrote "I walked out of bathroom?) and this co-worker was there and he introduced me to a few other folks. I debated declining to shake hands because my hands were damp, then I decided: Screw it, it's the towel inaccessibility, let them get a taste. So I shook hands. They probably thought I was a slob or something. Not sure it was the right call.

It's better than when in Back to School Rodney spits out a meatball into his hand, discards it, then tries to shake someone's hand. So don't watch Back to School for classroom tips, but it has got etiquette galore. And a Springsteen reference!

He ain't robotic, he's my brother

About 11:30 a.m. today, my brother with FA officially became a cyborg, and this bothers me for two reasons.

He got a cochlear implant to see if that will improve hearing that Friedreich's ataxia has taken from him.

I use the word "if" because no one really knows if it will work. He is, as far as anyone knows, the first person with FA to receive a cochlear implant. This makes him a brave, heroic pioneer. If it succeeds, and doctors are cautiously optimistic, then I can get one. But then I am just a wussy follower.

He will deservedly get all the praise for his risk-taking. This is great in the real world, but in the Matt-centric universe I like to live in, the very firmament trembles. I need to do something even more risky -- maybe with nanites.

I am also disturbed because it has long been my goal to become a cyborg. Granted, I prefer this kind of cyborg ... but, you know, baby steps.

I did, however, get these awesome new ears from a friend at work. They don't help me hear better, but they look awesome as you can see.

I do not want the legal pad

No one will believe that my first restructuring was actually worse than the one in Office Space, but it was and I keep thinking about it these days.

I had been on the job only a few months when consultants were brought in to help us reorganize. The scuttlebutt was that the consultants had never worked at a newspaper before and took the job to learn. We copy editors had to fill out forms with every story we read, telling whether it was a shirt, medium or long story, whether the headline was simple, medium or hard, etc. It was kind of a joke.

The day before the cuts were announced, a bunch of us were sent to learn some new task. I was among that bunch. I'll never forget that another guy was not in the group ... until he asked if he should be. The boss said OK and he came running up with his yellow legal pad at the ready.

The next day he was fired, and I have always suspected that the reason he didn't get invited to learn the new task was because someone knew he would be gone the next day.

I have never been a big meeting person. I hear poorly, so I don't go. But now I see a meeting at work and then see me holding the yellow legal pad. Symbolically, of course. I never bring a writing pad or pen to meetings.

Let's ride

The only bad part of the debriefing during the ride home from last night's barbecue was that I got dropped off first, meaning my friends were then able to debrief about their odd friend Matt.

The barbecue at another friend's house was nice. It is always a plus to be out with good people. It was too noisy for me to hear much and I said less, unless someone talked to me directly.

During the ride-home debriefing, one friend mentioned how quiet I was. I know, I know. I hate it, but I always have been quiet. In grad school, someone told me how I never talk but when I do everyone listens because they knew it would be intelligent. I had them snowed!

Add in the hard of hearing crap, and I really zip up. Even when I can follow conversations enough to say something, it is hard to know what has already been said, and I don't want to be a bore.

We were squeezed on to a deck so I could not move around, but it did not matter because several people helped me get food. Awesome!

The ride home was about the perfect setting for me to hear: two people, windows up, air on, lots of traffic so it was slow. Now if I only knew what they said about me.

Matt Trott and the Good Kind of Happy?

It has been a weird week.

I learned last Friday that a friend was leaving work and spent much of this week gearing up for various parties and lunches for him and another friend who is having a baby. But now the week is over. Kind of a letdown.

I used up a lot of adrenaline this week. I went to things where I couldn't really hear. I used a manual chair on one of the hottest days so far this year. I tried to get in a bathroom without an automatic door (I made it in finally, but on my departure I had to go out then reopen the door for Claren). I ate far too much bacon.

I am tired, but I am glad I did all of those things. Well, I could have lived without all the bacon.

I imagine people who read this blog will maybe sense a touch or two of bitterness and anger at being dependent. That hasn't changed.

But perhaps what I will take away from this week is that the kindness and assistance of friends and family overwhelm the dependence and the bitterness it causes.

A really awesome CCI workshop

Despite the somewhat scatological start, the CCI graduate workshop today was quite good.

The workshop was at a Lutheran church in Maryland -- the first outside New York -- which I have been asking for for years, so it was cool.

Mom and Dad just dropped me off, and I wanted to make sure the bathrooms met my definition of accessible. If they didn't, I could call Mom and Dad back to get me.

Mom and I agreed inaccessible bathrooms were unlikely, "egregious," Mom said. But as I pointed out, we have seen egregious before.

So when I got there I asked the woman who greeted me where the bathrooms were.

"Wherever you want," she responded.

"Damn," I thought. "I always figured Lutherans were stodgy Lake Wobegoners, but now they're advocating dropping trou at will. What would Martin Luther think?"

Then I realized she was just talking about toileting the dogs, and she pointed me toward the person bathrooms, which were perfectly accessible. Oh well.

The workshop was just refreshing stuff we had learned in team training years ago -- how dogs learn and how to teach them stuff. I could hear the trainers fine -- they are all good speakers. Being New Yorkers does not hurt, I imagine.

But when the other grads started asking questions, I was pretty lost. That stunk. I would have liked to share my experiences with folks but was not always sure what we were talking about.

Claren got to show off how crazy hairy she is. One of the trainers was demonstrating the Furminator. She asked to borrow Claren and brushed off a pile of hair from one small spot, even though we had brushed her with the Furminator last night.

When she borrowed another dog, that dog was so excited to see the trainer and hung around her regardless of whether she held the leash. Not my Claren, though. Once the trainer dropped the leash, Claren started wandering around and sniffing. She makes me so proud.

Just being there was fun, though. I saw people I had not seen in years and got to catch up with folks. And well, CCI is so freaking awesome, I'd go to support them almost anywhere.

My stupid hearing is making me feel old

A friend of mine sent out an e-mail and wrote a blog post about NPR streaming the new album by Gaslight Anthem. Even though I had heard of the band in reference to Bruce Springsteen, I had not heard their music before, so I listened. And I realized why my musical preferences only run through 1995.

It's not that no good music has been created in the past 15 years -- I am not one of those people -- I know there is still good music being born. But I can't hear it well enough.

Gaslight Anthem sounded cool enough, but the lyrics might as well have been "Yabba dabba do" repeated all the way through. More or less.

The songs of my youth have been hammered into my brain, so I know that Springsteen does not mention the devil when he sings "Tenth Avenue Freeze Out."

I just can't hear the lyrics. Even some of Springsteen's later songs fall into the "Yabba dabba do" category, I am embarrassed to say.

I'm sorry, Gaslight Anthem, Dropkick Murphys and others. I'm not old, I just can't hear.

--

I am off next Wednesday and a Wednesday in August. I told CCI I could go to Walter Reed then (Wednesday is the day you have to go and my boss is off most of July.)

I'm sorry I am deaf

That is more or less what I have said in e-mails yesterday and today to co-workers who called me to tell me something, but I was no help.

It's not that I am blaming myself, but I want to let them know that I am sorry they have to yell over the phone or just resort to e-mail.

They both said no problem, but it is for me.

Telling people I don't hear well

The wheelchair clues people in that I have mobility issues, but I am thinking I need something for my hearing.

I went for a walk today at work with Claren, and I asked a few people if they wanted to join us. Two did, which means I mostly heard neither one.

I started to talk to Claren on the walk, not because I was bored with them, but I just could not hear them.

I know I can't hear well and hearing aids just amplify sound -- they can't really make it clearer. I didn't need the audiology appointment last week to tell me that. And one on one, I can keep up or ask people to repeat as needed. But I would need two people to repeat the whole conversation and this time to talk loudly and facing me.

Maybe the problem is I assume that most people I talk to a lot know I hear poorly. I wonder.

I don't really like telling people, though, about another failing.

And I am not getting one of those ear horns.

What did you say?

I think all you need to know about my hearing test today is included in this brief conversation after a test in which I tried to discern and repeat a word said into my earphones while background noise was playing:

Audiologist: OK, that was tough.
Me: Did it show?
Audiologist: You got one right.

That's right. My discernment (a cool hearing term) is about 10% in my left ear when there is background noise, which includes other conversations, random noises, internal body sounds, etc. My right hear discerns 30%.

Without background noise it is about 60%, and that does not include ability to read lips or get context, so I survive.

I could get hearing aids, but they amplify sound, not discernment. There is not really anything for someone like me, whose hearing is not good but not awful.