Monthly Archives: September 2024

I Can Hear Clearly Now, Sort Of: On that Hearing Test

Posted on by John

So this past Wednesday, I toddled off somewhat unwillingly to my audiologist’s office for the pending hearing test. As I noted in the previous entry, I knew I needed this checkup as my role calls for me to be able to hear in more and varied situations and to work with individuals one-on-one and in groups.

The last audiogram (that’s the technical word for them) I had was in 2018, but I barely remember that. I think I intentionally block them out. I should probably call them audiograms more often anyway, as the word “test” connotes academics, and the feeling that I am not doing as well as I would like can make me feel a little bit of that failure feeling. The last audiogram I recorded in this journal was in 2016, and can likely be found under the “Hearing” tag.

I sat in the booth with a different audiologist and, I guess, her student who was doing most of the work while under supervision. First, they checked my ears to see if there had been any wax accumulation, but she said apparently I’m doing a pretty good job of keeping that at bay. I’ve learned some lessons after my much-documented challenges keeping hearing aids going as they constantly filled up with the annoying stuff.

“How long is this going to take, approximately,” I asked.

“It should take no more than 20 minutes” she replied. 20 minutes? It felt like an hour easy!

This test was different than the one I recalled from 2016. First, they had a recorded male voice reading back the words. They start to become predictable to some extent, or at least they make us think they are, as they say “Baseball,” “Airplane,” “Northwest,” and the like over and over again. And of course they test each ear, sometimes playing white noise or a wind sound in the other ear. Another, very real challenge I experienced was shutting down my inner thoughts: dinner, sleep, work the next day, etc.

One of the words that kind of caused me to laugh… it sounded like he said “Say the word Bi*ch”. Hmmm, I’m pretty sure he didn’t say that, I thought. “Ditch?” I tried tentatively. Probably… not that either. Ah, well.

I then had to get the beep test. I think I actually did better on this part, and especially when they put on the big clunky things that kind of fasten to your head as honestly I could often feel the beep more than hear it. We laughed though when at the end of the test she said something to me and my hand shot up as if I’d heard a beep again. “Sorry, you just get conditioned to do that’” I said.

“I understand,” she replied.

The results were a little worse than the last time. She said something like my word discrimination dropped from 80 to 55% in my left ear, and my right ear remained profoundly deaf as it has been for some time. “It’s probably time for you to consider a cochlear implant, especially on that right side” she said. “And as your left-side clarity diminishes”. I have noticed that this has happened, for sure, as my Norrie Disease-related progressive hearing loss keeps progressing. A little disheartening, but such is the way I guess. I just don’t know about CI’s, because I’ve heard all sorts of stories about them. There is a possibility that it might not work, and I think you don’t really have a way to fall back if they don’t. But I know that time is likely coming more quickly than I would like.

Meanwhile, she went ahead and made adjustments to the aids as a result of the tests. And they’re kind of a mixed bag. Sports sound a lot better, and I was much more able to hear my supervisor and trainee today at work. But I am still kind of working to adjust to my wife’s voice and others, as the sound while turned up is also somewhat muffled. I think I’m getting there though and will just have to be patient, while hoping others are patient with me. The paratransit vehicle I take to and from work also sounded really loud for the first few days, but that is starting to calm down as well.

So yeah, this issue is always going to be complicated. But ultimately I am grateful to those folks and their good work of really getting the aids to work for my needs. I still haven’t tried them in the holy grail of hearing, the restaurant, but I’m sure that is coming soon. That will really tell me if a difference has been made. And even more the National Industries for the Blind conference I will be attending in three weeks as a result of winning Employee of the Year. I’ll keep you posted, and I mostly write about this to help parents of children with Norrie gain some insight into what this experience might be like, again realizing that my voice does not represent everyone’s. I do hope it helps.

All Aboard for a Much-needed Weekend

Posted on by John

Do you have that person in your life who always gets you, no matter what? The one who, because of similar experience and an upbringing that involved many of the same challenges is someone to whom you always look for advice or just to vent. That person for me is my cousin: technically a year younger than me but seeming older in many respects.

For our early life, really until mid-20s, we were never that far apart. Both of us are totally blind and have significant hearing loss due to a condition called Norrie Disease, so we have to work hard just to fit in to this world. We went to college together and lived in an apartment (albeit a slum) for six years.

Then life rolled on, and we were both fortunate to marry wonderful women. That has though necessitated changes in our relationship, as is common for all adults really. Now, we usually see each other maybe three or four times a year (with the time from January of 2020 till May of 2022 being the longest we didn’t get to spend time together due to Covid).

Anyhow, that’s slowly, finally, starting to change. This past weekend, as my work life ramps up and I feel increasingly nervous about my hearing challenges, I decided to see if we could just have a marathon Saturday watching sports and talking about nothing and everything as I like to do. My cousin and his wife agreed to allow my visit, so I purchased round-trip Amtrak tickets from Cary North Carolina to Charlotte.

I had to get the 5:43 Carolinian train, being fully aware of likely delays as it makes its way all the way down from New York City. And delays indeed happened, with emailed announcements throughout the day that the train was getting later and later.

I had Lyft take me over to the Cary station after a long day at work trying to hammer out the material for our upcoming Microsoft Excel workshop. The building was cold, and I found myself wishing I’d chosen to stay outside in the beautiful Fall-like weather to wait. I sat, snacking and reading, and tried to make myself take a break so all of my devices would make it onboard with a little life left.

The train finally arrived shortly before 7, and as I feared I was given an aisle seat so couldn’t plug in as easily. I always feel weird about asking my neighbor if I can stretch the cord over their legs.

The ride down was uneventful, and we arrived in Charlotte around 10. Knowing I would want to pick up food on the way to my cousin’s house, I decided to try downloading the Jack in the Box app to see if I could place an order in advance of getting there. I get Jack in the Box whenever I visit the Queen City, because we don’t have any of those in our area. And this would have worked, if I had already entered my payment method or at least set up Apple Pay. Trying to do that at the last minute just… didn’t work. Choosing the menu items I wanted though was accessible. Anyway, the driver just rolled me close enough to the Drive-through window to put in my order and I collected the food and headed to my cousin’s house. I do love this tech that makes it so much easier to independently move around and run errands.

Because it was already nearly Saturday by the time I finally arrived, we just stayed up a little while listening to the NFL game in Brazil and scarfing down the food. Then we retired for the night. I’d already understood that we would mostly be spending Saturday together anyway.

Knowing these folks wake by 8 AM, I was crawling out of bed just as the smell of bacon and eggs permeated the air. My cousin texted me, and I headed on down to sink my teeth into it. A small cup of orange juice and a big, piping hot mug of coffee completed the morning.

As far as sports go, our Alma mater UNC Charlotte (they call themselves Charlotte in the sports world) played, and were pretty much slapped around by, the North Carolina Tar Heels. Bowling Green University gave Penn State a scare, and number 5 Notre Dame were nipped by the Northern Illinois Huskies in an awesome upset. The prime-time game, North Carolina State University versus the University of Tennessee, was a bust as State were dragged all over Charlotte’s Bank of America Stadium.

While the games played, we chatted about our roles as Assistive Technology Specialists. We also noted the recent availability of high-powered, AI-driven Phonak Hearing Aids (NOTE: those may or may not be the right ones). Anyhow, I’m considering trying to get those, as they’re supposed to be really good at filtering out background noise. I have a hearing test (Oh fun! Except not), scheduled for September 18th, at which point I will begin this conversation with my audiologist. Where the money will come from for such a thing? Well… we shall see. No doubt I need it though, to help my rising career.

After our day of fun, we got food from a restaurant called the Skrimp Shack. (They mean Shrimp, but ok haha). I had a giant chicken “sammich” that I could not eat entirely, and a big styrofoam to-go plate of fries (the small is really small, the large is really large, no in-between). The food was really good, though.

And that was the crux of a great Saturday and weekend. I’m writing this as we speed back toward Cary on Sunday morning from 6:45 till 9:45. A bit of amusement: as we departed Charlotte, the conductor said we would be arriving in Cary, our next station stop, in 25 minutes. Cary takes three hours to reach, as suggested by the time I just posted, and it is not our next stop coming out of Charlotte. He meant a town called Kannapolis. I can only assume that it was too early in the morning for him, as it is for me of no or very little sleep. Although for some strange reason I feel hopped up on energy right now. Let’s hope that lasts till my Carolina Panthers (NFL) play the New Orleans Saints at 1, and hopefully start this season off right. You can’t get much worse than our 2-15 record the previous season. I do hope more of these restorative weekends are in store, and that you are able to find a way to lift your spirits when needed as well.

Reflections On An Age Milestone

Posted on by John

As college football plays in the background (so glad it’s back!) I begin to feel celebratory. Hello, and welcome to September. What has happened to the summer? A smokin’ hot June, a flooded July and a mostly ambivalent August seem to have gone by in a blur. I enjoyed it, and thanks to remote work on Tuesdays and Thursdays I actually felt like I had a little taste of the old days, languishing on the floor as a kid.

Nevertheless, all of that will soon be behind us as we celebrate the last hurrah, Labor Day. Or should it be called Day-Off Day. And of course I know some folks must still work in order to keep the nuts and bolts of society going (I hope those of you to whom this applies at least get to have a day of relaxation there somewhere.)

The good news though (the really good news, admit it you think it’s good news) is that we’re now entering my birth month. Yup, here’s to all the Virgos, as my 45th birthday is on the 13th. Friday the 13th, oo scary. I think that’s only happened a handful of times for me. The one I most distinctly remember was in 1996, when a nice young woman who was in Chorus with me made me a braille card by folding a piece of paper several times so that it became thick and writing with her car keys. That’s the kind of gift one never forgets, just because of the thought and effort that went into making it. This year, we’re planning to go to a local restaurant called It’s A Southern Thing, where I will eat some of their delicious “Pete loaf,” some of the best meatloaf you’ve ever tasted invented by some guy named Pete I guess. I and my soon-to-be 45-year-old mind may have written about this place before but… whatever. It’s good! Kinda pricy and most consider it “Southern-inspired” rather than straight Southern. We ate there for our sixth anniversary.

Speaking of anniversaries, this past year of my life has been in many respects the best I’ve ever had. If you’re like me, and you might be, you have to remind yourself on occasion to step back and take stock of how good your life actually is. My overly perfectionistic tendencies can lead to undue stress as I do my work at work, training other blind folks so they can do what they want with their lives. I do believe that I’ve done better though this go-round, which also marks a completion of my second year at this level of employment as I officially started in this role on September 26 of 2022. I’m just getting more comfortable talking to people and going through my sessions, even when under supervision. And for me that comes with just taking a deep breath, focusing, and preparing as best I can. And being willing to ask questions of the participants, with the recognition that they have some thoughts about the direction they want things to go as well.

The coming weeks will actually be some of the biggest we as a department have experienced, as we get ready to launch an apparently popular set of live courses on Microsoft Excel. It’s after all something many of us need to use in our work situation but few of us really understand. I am certainly no expert either, but what I am is a quick learner who is working to quickly synthesize the information in a way that I hope others find helpful. We’ll see how it’s gone by this time in October.

And that’s pretty much what I’ve got. Still reading, I’m already into my 63rd book of the year! Let’s see if I can give you a cheat list of my top five books of this year so far:

  • Dust Child, by Nguyen Phan Que Mai
  • James, by Percival Everet
  • The Uncharted Flight of Olivia West, by Sara Ackerman
  • The Noumenon Series, by Marina Lostetter
  • Shelterwood, by Lisa Wingate

And yeah I added a whole series: sue me! It was good for reasons I’ve already detailed in here, namely that this author had folks with disabilities performing key roles on deep-space missions. Lots to talk about in the near future, as things really get oppin’. Well of the things I can disclose publicly, that is. More soon.