Tag Archives: Disability

Live Caption Addendim: A Hearing Aid Horror Story

Posted on by John

I guess I should begin by noting that this happened to me because of my own hard-headedness. I should have gone in to have the aids maintained long before it got to that point, but it’s always hard to find a stopping point in busy life and work. I guess next time I’ll just have to schedule the appointment six months out and aim to make it there for the routine retubing. Anyway, here’s what happened.

Have you ever had one thing happen, then another thing immediately follows and something else follows on that until it feels like catastrophic failure… then you wake up? And breathe a huge sigh of relief? “Man thank goodness, I had no idea how I was getting out of that mess!”

Well this incident felt like that, except unfortunately it was not “but a dream.”

Monday night. My wife and I were wrapping up chatter about our day and about to pack it in for the night, me laying on my side and exerting pressure on the left-side hearing aid. Suddenly I realized the sound had become muffled. “Oh no, not again” I thought. “I know this stupid thing hasn’t become blocked by wax again.” Only when I reached my hand up to investigate, I discovered that the tubing had actually become severed from the earhook. Worse, it had split slightly at the top, meaning there was no way I could reconnect the pieces. My stress meter immediately shot up, and my brain whirred as it tried to come up with at least a minimal fix that could at least let me get to the clinic the following day. Figuring that since my left ear was the most important to hear from, I decided to connect my left-side aid to the right-side tubing so that I could at least nominally communicate. And then I went to bed, restless.

Tuesday morning: I awoke, called out of work, and prepared to settle into my recliner to await the clinic’s opening at 8:00 AM. As I turned on the SiriusXM Real Jazz station I enjoy waking up to and opened the book I was reading on my Mantis Braille display, I happened to reach up and touch the left-side hearing aid for some reason. And then that tubing, which had previously been attached to the right-side aid, also broke. It too would no longer stay attached to the ear hook. This meant, one of my greatest fears, I was completely unable to hear. By this point my wife had already departed for work, which was fortunately only a few minutes away. I sent her a frightened text, and she said as soon as she could get the day started and let those know who needed to know she would return home to assist me.

8 AM came, and no one answered the phone right on the dot. Then 8:10, then 8:15, at which time I left a message. Finally, on my 8:25 attempt someone picked up. I had to hook my USB headphones into the iPhone and turn them up to full volume, thus just being able to make out what was being said. The receptionist said a graduate assistant could see me at 10:30 AM, and I instantly felt much better.

So I put on my clothes, sat downstairs on the couch, and waited for my wife to show up shortly after 9:30. I had already enabled the iPhone’s Live Caption feature that I wrote about in the previous post, so I would know when she had reentered. At one point though, I saw the words “come on” scroll across my display and I thought she had arrived, but it was a false alarm. Yeah, that app, while very helpful, is far from perfect. I sure was curious what it could have heard though, in our supposedly quiet living room.

Once she did get there though, we were able to have a sort of halting conversation as the car sped toward the audiology clinic. She said it felt odd with the delay, as naturally it took me a few seconds to process what had just been said. And sometimes the transcript just isn’t correct, leading to hilarities. For some reason it often thinks people are saying expletives (the F-word especially). And at this point it doesn’t distinguish among voices, meaning what I’m seeing could be coming from a person or the radio. I hope that can be improved in future using AI. Still, it was truly a game changer, and perhaps even a lifesaver, in that kind of situation. The last time I lost pretty much all of my hearing due to an ear infection and needed quick treatment they just had to get started without asking me any questions, which can be dangerous.

In the clinic, the audiologist-in-training was also able to communicate with me, even as she repaired the aids. Usually, I’d just be sitting there waiting for them to plug the left-side aid in so I could hear them. It was great though, knowing what was happening in real time, well sort of real-time.

After that harrowing experience, I was more than happy to take my wife up on a breakfast at a local diner called Brigs. There are three locations in the Triangle, and they serve breakfast until early afternoon. The atmosphere was nice, and at the time we got there it wasn’t too loud, so I could actually communicate with the server. They had large and small cups of orange juice, and I wasn’t sure which to get because how does one define large versus small. I went with the former and was glad I did, as it was only the size of a normal glass. Along with that, I had a delicious sausage and cheese omelet and fruit. She chose to eat blueberry pancakes. It was nice just enjoying a rare meal together in the middle of a workday, and finally, happily, letting all of that stress melt away. Until my next misadventure.

On Braille Access and Live Captioning

Posted on by John

If you’ve followed my blog for any length of time, you probably know that I have significant hearing loss. I could likely even be classified as functionally deaf. This has presented challenges not only in likely spaces like restaurants, on the bus, or even at work, but also sometimes at home. The issue there is that sometimes I’m trying to hear someone over a television or just the way the room is designed causes an echo that interferes with my hearing aid’s ability to clearly perceive the sound. This is stressful, to say the least.

So color me very excited to discover that in Apple’s latest update to iOS 26, they included a feature called Live Captioning. I think there is a Live CAptioning option that provides visual captions usable by those who are deaf but have sight, but the version I’m going to talk about is built specifically for those of us who are blind and also have hearing issues. Yay in itself is a revolution as even in most accessibility regulations they rarely consider persons with multiple disabilities. They have rules for blind folk, rules for deaf folk, etc, but not often an acknowledgment of the potential crossover, which I dare say is more common than we might think.

Anyhow, if you don’t know how to access Live Captioning and want to, here’s how. First, you have to have a Braille display of some kind; it can either be with a Perkins-style keyboard or using a QWERTY keyboard with something like the APH Mantis, which is what I’m using. If using a Perkins keyboard, access Braille Access by pressing dots 7 and 8 with Space bar. And all you need to do to envoke this feature with the Mantis in most cases is to press VO (Control+Option, or Control+Windows if you are more Windows inclined) with Y to enable Braille input, then press the letter A and semicolon as your dots 7 and 8 along with the Space bar. There are other items in the Braille Access menu that appears, which operates separate of your iPhone so you could use VoiceOver’s speech to view other content while it is open. It lets you, for example, take notes, view the time, or use Braille to open other apps.

But I’m just pressing up arrow (Space with dot 1 if using a Perkins keyboard) to navigate to Live Captioning and pressing Enter. You also have two options with this feature open, changed easily by pressing dots 7 (or the letter A with a QWERTY keyboard) plus Space bar: listen to audio or listen to microphone. Audio refers to the audio generated by the iPhone, and if you do this you can have it pick up spoken words even without the phone being turned up. I used this to, for instance, follow play-by-play of a Carolina Panthers game via the display while in a car with others (they beat the Dallas Cowboys on the Sunday prior to this entry’s writing, so I was thrilled as they’ve done virtually nothing over the last five years, but I digress). I’ve also used i to make sure I can hear narrators in an audiobook, as I find that after listening to their voice for a while as I also view the transcript I can actually understand them more.

If set to listen through the microphone, it’s as if the iPhone is recording. This means that you do not really have use of any other audio on the phone while in such mode. But the beauty of this is it will pick up conversations and other things, such as the TV, happening around me. I used this to speak to a coworker whom I’ve usually had a hard time hearing, just because of how things sound in our office and the fact that we’re positioned relatively far apart. I’ve also used it to chat with my father-in-law about work, and that went smoothly.

There is, naturally, a slight delay in between the words being spoken and flashing on the screen, and if you fall behind in reading the transcript, indicated by a braille box on either end of the display, you can just press a cursor routing button to jump to the end. And of course, the transcription is not always totally accurate, though it usually makes enough sense for me to get the gist of what was said. It can also be more challenging to follow if you have lots of crosstalk going on, as it doesn’t identify if a different character is speaking. But it was/is helping me to pick up at least a degree more than I had before, and every little bit helps. This is especially important as I continue to gain responsibility and standing in my career, not to mention that it’ll likely make family social gatherings not feel as difficult. So I applaud Apple for taking such a step. Let’s hope it’s only the beginning of what can be done to get this tech to truly help us all.

AI A-I-O!

Posted on by John

I am still writing this entry, for the time being. I say this as the AI revolution continues to take over, and I am not entirely sure what to make of it yet.

I was, and mostly still am, a skeptic. Of course I’ve used various AI apps like Seeing AI and Be My AI to describe photos and read documents for a while now. And especially where it comes to photo description, I’d taken the readings with a grain of salt knowing that AI often hallucinates and just plain makes things up. But it was no worry, as the descriptions weren’t serious and an error would have no real impact on me.

But lately, I’m seeing more and more people use this technology, often called generative AI, to create or edit documents or to help brainstorm when preparing to construct projects. This makes me nervous, because what is that going to do to human creativity long term? What does it do to our ability to learn now? These are deep philosophical questions about which we will no doubt debate for a long time.

But two things happened recently to change my mind a bit. Well for starters, I downloaded the Chat GPT iOS app so I could explore what all the fuss was about. In its suggested things to ask, it offered to play a World Capitals game. This immediately appealed to my nerdy GPS-coordinate, geographical tendencies. I knew the capital of Ethiopia, ADIS Ababba; and Bolivia, La Paz. I found out though that the capital of Bhutan is Thimphu. Hmmm, not likely I would have known that one. Anyway my free time ran out, at least for the next few hours, so I bit the bullet and opted to pay (for at least one month).

And in for a penny, in for a pound, right? So the first of the two things that really got me thinking about the potential power (and perhaps peril) of this and any so-called AI platform was my decision to query it about a project I’m hoping to launch. It’s a revamp of a podcast idea I had back in 2021, where I would explore books featuring characters with disabilities and see if I could land author interviews. Only this time I plan to be much more prepared, thanks in large part to the How to Build a Podcast segments on the Access On podcast. So I also asked GPT for suggestions on content, an author email template, and ideas on show structure, for which it supplied good answers. I guess the good of it is, at least for now, I still have to do a lot of the heavy lifting to really get this thing going. But the AI helped me get it off the ground in a way I may never have done otherwise.

And right on the heels of that, pretty much the day after I made the purchase, a work project surfaced that would also be a good candidate for AI intervention. I had to quickly generate four scripts of sorts, starting that Wednesday afternoon, and if possible have them done by Friday. Again I had GPT create the templates for me and I went in and filled in all of the relevant information, also editing the document so that things would be formatted correctly. It definitely reduced the time it took me to complete that, and I made the deadline.

So I continue to experiment with what all this and other such applications can do. I’ve since asked it for more geography games, and am enjoying guessing countries by three clues it gives me. I do suppose I will also use it for other work and hobby projects as well.

I just completed a work of fiction called Coded Justice, by Stacey Abrams, that explores the role AI could play in medicine. Of course it to some extent goes with the trope of AI gone rogue, but things get deeper than that. It’s the third in her Avery Keene series, and I’ve enjoyed all of them.

A Third

Posted on by John

So here we sit, April wrapping up and headed into the second third of 2025 already. I started the year off with hopes of being more verbose than I had last, but thus far it just isn’t happening. I guess to some extent the problem is I feel like I’m stuck in one big routine. Monday=Work,Home;Tuesday=Home/work,HOme:repeatedWednesdayAndThursday. Saturday and Sunday, resting up and preparing for next week’s festivities. It’s the rhythm of life, or something like that. This is not to say that nothing ever happens, it’s just mostly quiet. Let’s take a look at some of this year’s highlights, though.

Work

This year on the job has been interesting. We’ve started a rotation of regularly-scheduled classes, and April’s was a successful course on using Freedom Scientific’s JAWS for Windows screen-reader with Microsoft Outlook. I demonstrated and had my trainees try creating folders, adding meetings to their calendar, sorting messages using rules, and creating and editing signatures. It was fun, and I enjoyed working with the engaging group of Customer Service reps who opted to join me.

I’m also working intensively with someone in what we’re calling a JAWS Boot Camp, wherein I’m helping her to acquire the basic skills she can use to learn other tasks needed for a computer-based job position. This is a challenge, because it really requires me to think outside the box and come up with activities that can make harder-to-remember concepts manageable.

Travel

As far as trips go, we did take one journey right at the end of March to Virginia Beach to see my sister in law. This gave me an opportunity to break out my GPS apps, BlineSquare for GPS coordinates and a somewhat accurate listing of my surroundings; Google Maps for direction information and hotel reviews; and Ariadne GPS, because it allows me to run my finger along the iPhone screen and hear what streets it is encountering. I’m sure I’ve written about these apps before, but I just like that they let me hear so much about an area’s geography.

We also did a bit of a riding tour of Virginia Beach, traveling through Regent University which is a religious school. The best thing we did though was eat, and particularly at a place called Gus and George’s Spaghetti and Steakhouse. Although I’m still grumbling a bit about the fact that my spaghetti only had 2 meatballs in it, it and the before-dinner sallad were delicious.

Books

And of course, I’m always reading. I’ve already hit 30 as the month concludes. Currently engrossed in one called Death of the Author, by NNedi Okorafor. Split between Lagos Nigeria and Chicago USA, this story is about a young woman who has acquired a disability after falling out of a dead tree and becoming paraplegic. It addresses interesting issues of so-called accepting one’s disability, and the controversies that can arise if one chooses to modify functioning with the assistance of technology. It’s an interesting thing to ponder, and I would of course note that all of us modify our functioning in low-tech (canes, glasses, wheel chairs) and high tech (hearing aids, screen-readers, scooters) ways. Mostly this is done to achieve the highest quality of life we can manage, which constantly changes as technology improves, but hopefully it does not mean we are “ashamed” of our disability. These are and probably always will be delicate questions, since they are framed by each person’s experiences and the perceptions of those around them. In any event, it is a pretty good story.

And that’s about all I’ve had going on for these first four months. Hmmm, when seen through that light I guess there has been more going on than I thought. I hope whatever you’re up to has been relaxing when needed yet eventful when desired. More soon.

NIB 2024: A Day of Relaxation

Posted on by John

Ah, I meant to chronicle the rest of my time at the NIB 2024 Training Conference and Expo more quickly than I have, but alas work, cooler weather, and reading have interfered with my writing. (I’m already about to set a new record for books read [and listened to] in a year, as the old one is 79 and I’m already at 76). Anyhow, I wanted to capture at least one more day of attendance before it all becomes too distant in my ever-aging memory.

Wednesday, October 16: The day dawned crisp and cold. Most times I’ve visited our nation’s capital, the weather fluctuated crazily with temps in the 80s in the afternoon and snow at night. Granted those visits usually occurred in May, whereas October weather is more uniformly dreary. But the sun was actually out on this day as we meandered out of the hotel and across the busy street to a two-story McDonald’s. We don’t have many two-story restaurants here in North Carolina, but I guess you see them more in places where space is a premium.

I had a sausage, egg, and cheese McMuffin, while my wife probably ate a McGriddle (she likes sweet, I do savory). As we ate, she noted that there were some homeless individuals using the space probably to stay warm. I’ve also noticed that, sadly, that city seems to have a high population of unhoused individuals, perhaps because there are more services available? It’s an interesting question. Anyhow, she said there are signs that specifically say “No Loitering,” so if one wishes to remain for an extended time they must either buy food or devise other strategies to make themselves look occupied. I just hope we as a society keep moving in a direction where people will have fewer of these challenges, because the systems will work as they should.

Food consumed, we went to a little store to get snacks for later. I had a giant cup of grapes, because hey grapes are good for the brain. Back in the hotel, we milled about in the lobby for a while then decided to head down to the basement area to see what was going on in the conference. I then realized that I had missed the technology demo that was put on for the employees of the year, because at that time the app I was using to keep up with events was not sending notifications out. This was ok though, as I got to check out some of these devices in the exhibit hall. I’m always fascinated by what they have in these places, but also overwhelmed by the people pulsing from every nook and cranny. My wife had to keep me grounded and inside of the place. I held and listened to the Envision smart glasses speak. Those are nice and built specifically for blind folk, but at $2,000 I probably won’t be getting a pair. The Meta Ray-ban glasses are a likelier candidate, though I might just hold out and wait for a competitor as that market is now starting to come alive. Many of my trainees at work really want me to acquire those though, so I can show them how to use them.

Anyhow, I also checked out a Freedom Scientific workstation, equipped with a computer running JAWS for Windows and, more interestingly to me, a Focus 40 Braille Display. This is another device some of my trainees would like me to get for demonstrations, but alas. It had a whole lot of buttons and switches, and it is powered by a Perkins-style braille keyboard as opposed to my Mantis QWERTY device. I prefer the latter for writing, but the Focus does have many features that could make it desirable.

After checking those out, my wife and I decided to do a whole lot of, welll… nothing. Hey, one of the rewards of this trip was to be able to relax if one wished, and how often do you get to crawl back into bed and sleep on Wednesday afternoon. It was glorious, but I just wish I had drank more water as I tend to dehydrate easily if I do not and paid for this lacking later. Fortunately I was ok.

At about 5, we opted for another fine-dining experience and one we can no longer get in our area, and ventured to McCormick and Schmick’s. We had visited this chain in Raleigh for our “halfversary” after the first six months of marriage and fallen in love with it, at which point they took it away in favor of a Mexican restaurant. So we said whenever we got to a city with that establishment we would check it out again. Arlington did have a location.

This time, I ate some kind of salmon and mashed potatoes. It was delicious, if a little expensive. And as was the case in Raleigh, I loved the ambience of the place as it wasn’t too loud and we could easily have a conversation.

Before getting a Lyft back to our hotel, we walked around that area a bit exploring some of the ice cream shops and stores they had. You could tell we were in a different city, though of course it still had nowhere near the hustle of a New York or Philadelphia. I enjoyed the feeling.

And that was the crux of Wednesday, the midpoint of our trip. A little learning and a lot of rest. We sure needed that rest for Thursday’s tours, coming up in next post.

NIB 2024: First General Session, and Good Eatin’!

Posted on by John
The FDR statue. He’s sitting in a wheelchair. There were braille plaques nearby, too.

So, this is what happens when I am left to pack.

Tuesday October 15 dawned cold and blustery, as we knew it would. My wife had stacked sweaters on my couch that were to accompany my dress outfits so that I could stay at least minimally warm, but of course I didn’t notice they were there. This meant all I had was my sturdy jacket, which doesn’t always make the best dressing piece, comfortable as it is. So we needed to make a store run.

but first, we had to get ready. The bathroom in our room, and I presume throughout the hotel, was designed oddly. The showers had no curtains, only a half pane of glass that seemed to allow water to wet the floor more easily, and the head was of the rainwater variety, coming down from straight above. The bed was decent enough, but well let’s just say we have exacting standards about pillows that are rarely met in hotels.

These things were ok though and certainly did not cause a high degree of displeasure. Once dressed, we made our way down to the teeming ballroom for a light breakfast of yogurt with granola and peaches among other things (pretty good) and an empanada with egg and sausage. Then we made a quick trip back to the room to grab everything we needed before shoving off for Target.

I used the Lyft app to get around during this trip, and I was amazed by how accurate the locations were. For instance, it could tell me that we were standing inside of the Hyatt Regency Crystal City, of course, but it also pinpointed exactly which storefront we were in while waiting for our return ride. That kind of exactness would help blind folks more easily navigate, I would think.

In the store, we joked that we were exploring by doing something we could just as easily have done while in North Carolina. But that’s the truth, perhaps sadly: almost all of the world is now a big chain. Local stuff does exist, but it’s becoming increasingly harder to find.

We quickly found two nice, relatively inexpensive and versatile sweaters, then made our way to a Barnes and Noble to await said return ride. What I hadn’t known, because I wasn’t looking as it happened, was that Lyft had switched my car because a closer driver was available. This caused some confusion as a ride that looked nothing like expected pulled to a stop in front of us, but the driver called me on the phone to clarify and my wife could hear my voice coming through the window. So we felt ok about hopping in.

Back at the hotel, we opted for another meal at Cinnabar. This time, I chose a cheeseburger. It was ok, but didn’t come with any sauce or have a whole lot going on in the way of toppings. I had some mayo added, and thus managed to consume a fair amount of it with fries that were different from those we had on Monday. Then we briefly ran to the room for some R&R and to grab whatever we needed before the main event, the general session.

The ballroom was again teeming, with nearly every chair occupied. We’d located spots kind of far back from the speakers, so I could hear decently but maybe not well. This would definitely be a theme throughout my experience, unfortunately, due to my own issues and not anything conference-related. The session itself was interesting: the usual pageantry that accompanies such events. I listened with some interest as they talked about some of NIB’s achievements, especially as relates to helping those of us who are blind experience greater upward mobility. These metrics have definitely improved, and I am, I hope, an example of that.

What I most enjoyed though was the hearty reactions that went into celebrating employees of the year. It boosts morale among the workers, making us feel like what we’re doing matters. And it certainly matters in creating more jobs for blind folks in a way that is or can be transferable to the mainstream as attitudes towards disability improve. The session was supposed to be done by 4, but it actually lasted closer to 4:30 as a long discussion continued on areas that were slightly above my head.

Then the elevator madness ensued. This was another theme, especially as not all of the hotel’s elevators were working the entire time. They slowly brought more and more of them online, but until then massive lines and surges dominated. When we did wrangle a spot, we still had to wait as stops were made at nearly every floor.

After another brief respite in our room, we headed back down to the lobby around 5:30 to have dinner at Ruth’s Chris Steakhouse. First though, we had to work out how we’d get there. The two of us LCI employees who had won Employee of the Year, our guests, and the higher-ups who had come to the conference as well were to be treated to a delicious meal at this pricey restaurant. The Arlington, Va. location was only about a half mile away, but given that it was already darkening and cold out, we summoned two Ubers and made the short ride over.

Into another elevator and up to the 11th floor of some sort of office building where the restaurant was housed. My wife said it gave a great view of planes landing and taking off from Regan. Though we ate in a private room, it was so buzzing with activity that I could, again, barely hear anything. Yup, same as always. But the food was good though. I had stuffed chicken, with cheese and a sauce of some sort. It was definitely filling. I also consumed a glass of wine along with some water, because why not? I mostly just took it all in and reflected on the significance of even being part of such an occurrrence.

And that was all for Tuesday. More in our next entry.

NIB 2024: Arrival

Posted on by John
Me standing near the Washington Monument and Reflecting Pool

And so it begins… This year, as I’ve noted, I had been invited to attend the annual conference of the National Industries for the Blind in Arlington, Virginia, as LCI had awarded me Employee of the Year. Well one of them, another individual with whom I’d actually done some training as it happens, also received the designation. I was allowed to bring a guest, so my wife came with me.

The good news for us is we didn’t have to leave super early. Our American Airlines flight from Raleigh/Durham International Airport to Regan National Airport didn’t depart until Monday October 14 at 10:45 AM. Having prepaid for parking the night before, we loaded the car with bags packed to the gills for our weeklong trip and headed to the Economy lot. A shuttle arrived shortly after 8:00 AM and took us to the terminal, where we then had to hoof it with those heavy bags and I was sucking air by the time we reached the check-in counter.

“Would you two like to each check one of those bags for free?” The woman behind the counter asked. I have never been so relieved to hear anything in my life. My newly acquired briefcase (I had to look businesslike, time to shed the backpack) felt light by comparison as we continued onto the security checkpoint. This was my first time flying since… well, 2020, and one thing I’d forgotten was how annoying this process could be. Or maybe my patience has just shortened over the last four years. It was belts off, shoes off, Mantis braille display out, iPhone out, and oh I forgot to take off the Apple Watch. Oh, well. They did two inspections of my stuff, having a little trouble unsurprisingly working out exactly what the Mantis might in fact be. It looks like a computer keyboard, but… where’s the screen! They also had to dust my hands I guess to see if I might have some kind of residue on them.

Anyhow, once I put myself back together again we made our way to the coffee line as my wife got a free one with the parking reservation and I wanted some in preparation for a long day.

The rest of the wait was fairly uneventful, nearly 2 hours because hey it’s better to be early than late. I thought someone else from my employer would show up, but as we sat there in the terminal no one did.

“Now boarding American Airlines Flight 5545, with service to Washington Regan Airport.” We make our way to the line for preboarding, as usual, and my wife tells the gate agent I am blind as they initially say we are not eligible to board yet. We are on an extremely narrow-body Regional Jet, so have to just about turn sidwways to make our way to seats way back on row 20. I learned something new about airplane seat configuration, too: when I first saw our tickets, I noticed it said 20A and 20c.

“Wait, someone’s gonna be sitting in between us?” I thought. But no, there are no middle seats on this aircraft. So I assume any window and aisle seats will be A and C, and F and D respectively. The middles, if there, will be B and E. Interesting stuff, if you’re a nerd like I am.

We took off pretty much on time, shortly before 11 AM, and had barely completed our climb before we began descending. We mostly just sat there and made small talk, as you really didn’t even have time to get anything out. I suppose even with those security hassles, getting there that quickly still beats driving.

As it turns out, one other person from LCI was aboard but he couldn’t catch us before we got to our seats. He did get an Uber for us all and we piled in to make the short jaunt to the Hyatt Regency Crystal City, which is an airport hotel. It took them only a few minutes to get our room ready, so we ventured up in the ear-popping elevator to the 17th floor to deposit our luggage.

Flying, even a short distance, tends to make one hungry. So the next thing we did was locate the hotel’s featured restaurant, Cinnabar. I’m not really sure why it was called Cinnabar, as it is a full-service, sit-down restaurant. Their food was delicious but expensive. I had a chicken sandwich with cheese, mayo, and tomatoes. I guess I ate too many of the fries though, as my wife regularly chides me for doing, because I couldn’t finish that entire fairly large sandwich.

Not much else happened prior to dinner. We went and officially checked into the NIB Training Conference and Expo, collecting our lanyards and my Employee of the Year swag. We also had to attend an Employee of the Year orientation at 3, where we discovered how many of us there were (like 70 people). I was excited, but parts of me became overwhelmed quickly because of my hearing problems among such large crowds.

And speaking of crowds, prior to dinner we dropped in on the Welcome Reception. This was open to all conference attendees, and it sounded like one full-on roar as we huddled in the hotel’s basement-level vault. I stood in a corner and sipped on a Corona, feeling nice and reflecting on how I got here.

And finally, there was dinner. It was a simple affair, served buffet-style, with chicken, broccoli, and potatoes. There was supposed to be a Murder Mystery presented along with our meals, and I think it did happen later, but it took them a little while to get everything together. This is because it was to involve the audience in some kind of who-dun-it, where they acted out parts based on their role in the so-called murder. My wife and I didn’t stay to hear that part though, as the day and all its activities had caught up with us. We again rode that elevator into the sky, headed into our room, and called it a night.

More in Tuesday’s post, including a description of the room and some of its features.

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.

UNDERHEARD: Eating Out While Deafblind

Posted on by John

If you are like me, you wonder how and among whom the restaurant custom started. The idea of eating out in a place humming with activity, where all sound seems to merge into a full-on roar at times and you are left at the mercy of the wave as you, hopefully, enjoy some good food.

And of course before continuing, I fell down a rabbit hole and discovered, via a website on The History of Restaurants that they were supposedly started in France in 1765. I cannot attest to the veracity of this story, and wonder if some other culture might also lay claim to their origins. Anyhow, it’s good food for thought.

However they started restaurants are a venerated tradition of U.S. holidays and continue to bounce back after the dark days of Covid. Well, sort of. I accompanied my wife, her parents, sisters, and my niece and nephew by marriage to Red Lobster. That particular establishment does not seem to be faring as well, with many having gone into temporary closure and the business as a whole in bankruptcy. I guess they served too many shrimp.

We went to celebrate Father’s Day on Saturday, as is usual for us. It’s often less crowded on this day than if we wait till the day of, though going to eat at Fullers, a delicious local (to Fayetteville, N.C.) eaterie that serves just about everything Southern you can think of for Mother’s Day on the Saturday before, the place was brimming. I joked that it felt like someone was drilling a hole in my brain, because there’s just no really good setting on my hearing aids to help me handle such ruckous. But I made it through, as I always do.

Red Lobster, by contrast, was relatively quiet. We arrived at just prior to 2:00 and departed just after 4:30. I conversed some with those in my immediate vacinity, and ate my fill.

Ok first I had one of those delicious cheese biscuits, which according to my last doctor’s visit I don’t really eed to be eating. But hey, I offset that with a side salad. When I chose to order that salad, I expected to get basically a bowl of lettuce with bleu cheese dressing (another of my guilty pleasures). But actually it was loaded. Little flecks of meat, another kind of cheese (I’m not food afficianado, though I did apply to a food magazine as editor and they told me my resume was good once), croutons, and other stuff. Hey, my wife and I joke that my food critique is as follows: Real good, Good, Ok, not good, nasty! So there you go. Anyway, I had to stop eating before I became full off just that serving.

As we broke bread, talking about work, home, and life, the main course arrived. As I had on my previous Red Lobster visit, I’ve only eaten there twice if you can believe that, I had stuffed flounder (real good) with some kind of seafood sauce) and fries. I decided to walk on the wild side and went for a glass of mango lemonade, (good, I guess)? I don’t eat a whole lot of seafood, but I suppose it can be good on occasion, and I know it’s generally healthy as well.

The last sort of interesting thing I want to think about as a blind person is how we handle visiting the restroom. I needed to go before hitting the road, and it just made me think about my general strategy for finding what I need to find in there. When I enter through the swinging door, I immediately move toward the right wall and make my way around in a counterclockwise direction. This is because, at least in most of the men’s rooms I’ve seen, the sinks to wash hands are just to the left of the entrance with toilets in front. If I move in that direction, I usually manage to locate a stall, exit it, and get to the sink without any embarrassing mishaps. This time? Well, it was sort of strange as I did bounce off of someone as I made my way to the sink. Naturally, he then began providing assistance. It didn’t go completely sideways at least.

So there you have it, a little look into my mind as I work to negotiate the social norms that surround a typical holiday in my family. I enjoy it mostly, and by this point I know that most of the concerned parties know about my challenges and do not think any less of me. But sometimes having these hearing problems can be a struggle. Like when I find myself on a paratransit vehicle with a new driver who loves to talk, but I can’t comprehend him over the engines, as happened recently. I’ve learned though that the best, and really only, thing I can do is make the other person aware of this and take it as it is. More of my shenanigans as the summer time unfolds.