Tag Archives: hearing

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.

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.

“The Sign for Home” Examines Life and Challenges for a DeafBlind Individual

Posted on by John

Recent high-profile cases have shone a spotlight on issues regarding disability and independence. To what degree should one make decisions about one’s life, even if not fully able to perceive the world in what is deemed a “normal” way. Should family be able to basically dictate how a person is to live, simply because they believe they are protecting the individual from harm, thus possibly denying access to choices that other adults expect to have?
In his debut novel The Sign for Home, Blair Fell addresses this issue in a novel way. First, we have Arlo, a DeafBlind individual who resides with his devout Jehovah’s Witness uncle and receives information via a Tactile American Sign Language (TSL) interpreter who professes to believe the same. Arlo, wishing to explore possibilities in writing, enrolls in a class at a Poughkeepsie (NY) community college where he meets Cyril, another interpreter who accidentally or on purpose opens Arlo to a whole new world.
This writing class, taught by an unusual professor from St. Kitts, leads Arlo to explore parts of his past that he had been forced to shut away because his uncle deemed them sinful. These included an encounter with a deaf girl while he attended the School for the Deaf that led to his being sent to live with said uncle in the first place.
As the story unfolds, we learn that things with this girl are not as they seem. Arlo had been told one story about “the event” that ultimately ended their blossoming love affair, but… well as it turns out everyone has their secrets and lies. As the truth is revealed and Cyril and his associated cast of characters make Arlo more aware of possibilities regarding independence, he begins to push back against his uncle and Molly, the initial interpreter. This eventually leads to his seeking total freedom from his uncle’s guardianship.
Arlo and Cyril are primarily featured, with Arlo’s perspective being second person present and Cyril’s first person past. Both of these methods allow the reader to connect deeply with what is going on, offering a different set of feelings based on each. The former seems designed to ensure that one feels the experience of DeafBlindness and coping with a world neither heard nor seen insomuch as one can truly experience this, while the latter aims to allow access to the complicated emotions involved in helping Arlo deal with change.
At points during this novel, I as a DeafBlind person worried that the portrayal of Arlo made life for those living with these disabilities seem too simplistic and/or sad. Arlo knew little about how to operate in society when it came to moving around by himself and being willing to explore the wider world. The first part of this of course is that for some individuals who are DeafBlind, just as for those with other challenges, this is a true outcome. If one is not exposed to people and services such as Orientation and Mobility and Vocational Rehabilitation that are designed to help a person with a disability learn what is needed to thrive, one might indeed have a hard time. Even so, I appreciated that Fell included people who were functionally independent and who knew enough to teach Arlo, Cyril, and all in their circle some basic strategies to make his life easier. It is realistic, after all, to show that one might struggle with life as a DeafBlind person, but I believe it is equally if not more important to show that life can still be lived well with this or whatever condition one finds oneself.

Meanwhile, Back At The Plant: The end of my 72-day quarantine

Posted on by John

THE CALL finally came that Tuesday after Memorial Day. No surprise, really, as I expected upon North Carolina’s entry into Phase 2 of Covid recovery (if one can call a record-breaking 1,000 cases a day a recovery. It’s got me terrified, truthfully). Anyhow, I knew my time relaxing and hiding inside would draw to an end soon.

The number originated from the Hazelhurst, Ms. Branch of my employer, so I initially didn’t take the call. “Hello, this is a message from LCI for John Miller about coming to work.” So, I tapped the number, returned the call, and affirmed hat I would return on Monday June 1.

After discussing it with my wife for a time, we decided that at least for the time being it would be easiest if she takes me in and picks me up, when possible, because as noted in a previous entry dealing with public transit or Go Cary Door-to-Door presents a number of challenges in this environment. And honestly it’s working out a lot better for me, as I can wake 40 minutes later and depart the apartment only 20 minutes before my 7 AM shift begins. I could actually wake even later if I wanted, but I like having a little time to quickly check out podcasts and news as I get ready.

So the first week has ended now, and mostly it went well. Monday was long, as I had to re-remember how I get through the day without music or books except on breaks. And without being able to take the random nap, which was a little problematic that first day as my still-recouping gums let me feel not pain really, but a little pressure. The least fun part was wearing that mask for eight hours. My nose was stinging by day’s end, as I had breathed so much air into my own face. I know it is absolutely necessary to wear it though, and washed my hands whenever possible along with sanitizer when too far away from a sink. I certainly do not want the ‘rona, and don’t want to pass it onto my coworkers either, if I can help it.

The only glitch in this week occurred on Wednesday, when I awoke to a non-functioning right-side hearing aid. It started working after an hour or so, sort of, but I knew that it was still time to get both aids retuned. I’m amazed they’d gone a year and a half without requiring service, definitely far better than I got out of my previous aids, but they usually need to be tended to as soon as the heat and humidity arrive.

Covid protocol meant that I had to give the aids to the office receptionist, who came out to the car to collect them, then sit there for 20 minutes in silence while they were repaired. But as usual, when they were returned to me I marveled at how much louder and clearer everything was. The changes in hearing level are so subtle that they can go unnoticed until corrected.

And for the most part, that makes up the news of my return to work. Nothing groundbreaking really, but the week was nice in the sense that I felt great each workday, even managing to get enough sleep to be functional. That time off definitely helped me to get my health back in order, and for that first week at least, I reaped the benefits. Let’s hope this continues, and I sure hope that sometime soon my state, the nation, and the world can begin to find the path to healing that 2020 so badly needs.

On Healing

Posted on by John

A series of recent events have me thinking about how I feel about life with dual disabilities. Specifically, to what degree would I want to mitigate or perhaps eliminate at least the medical component of said disabilities, should that become more possible in the future.

I suppose because I wasn’t born with significant hearing loss, but have had to adjust to it over the lifespan, I would definitely opt into something that promised to correct my hearing. I’m pretty sure now though that I’ve had some loss in that area even before I had become aware of it.

Certainly the technology to enable one to hear, at least in an electronic way, has progressed in leaps and bounds in recent years. Many see this in the existence of the Cochlear Implant. One thing that gives me pause in goingfor a CI though is that I’ve heard it can throw off sound localization, making it difficult for someone who is also blind to navigate safely around his or her environment. I think one could adjust to this, but I know not how long that might take.

I recently met an individual who is a mental health advocate, writer, and one who has assisted many people with disabilities in learning the social landscape. This person shared with me a video in which a woman hears sound for the first time via a cochlear implant.

I’d heard of this video before, and its attendant controversy. I guess people’s biggest concern had to do with the notion, right or wrong, that it would serve to enhance the public’s idea that perceived disability must always be a bad thing and should thus be dealt with. Some were also not sure how to take having such a private, emotionally jarring moment aired online. My position on that is it was her personal decision to do this, and should be seen as such.

I could be wrong, but it seems to me that deafness doesn’t get quite the social taboo that blindness does. I mean I suppose most wouldn’t actively choose to be without hearing, but many individuals who are deaf only can get good jobs and do things where their competence is questioned a little less. Are they discriminated against in some ways? I’m sure of it, and especially when attempting to communicate with others who are not deaf and don’t know sign language, or take in programming that isn’t properly captioned.

But when many see an individual who is blind, they automatically assume that some sort of sin has stained their soul. Some of the braver folks figure that God has actually appointed them to lift that sin, as a person tried to do this morning.

I’m strolling along, enjoying the birdsong and wind that finish waking me up as I head toward the bus stop. I get to the street corner, and over the sound of a roaring machine of some sort, maybe a lawn mower? I don’t know, I hear someone calling, maybe my name?

Are you talking to me?” I ask, turning to face the voice.

“Yes,” she replies. “God says he wants me to touch your eyes.”

And before I can stop her, she has practically smacked me in the face! She pounds my eyes a couple of good times before I softly remove her hands and push them down.

“Um,” I say: “I’m just trying to cross the street, an now I’m distracted. Can you tell me when to go?”

“Yes, but you gotta feel what happened! You have to believe! God’s gonna open your eyes in a week!”

I just say ok, and thank you, and shuffle on down towards the stop.

Because I’ve never seen before, I can’t even begin to imagine what it would be like to suddenly have working eyes in a week. I guess it would be like that woman’s reaction times 100, as I’d be bombarded with stimuli that I couldn’t make sense of without the proper context and training. I wonder if people who hope for such things to happen to a totally blind stranger have even stopped to consider the ramifications of the situation?

Second, I think I’m made just the way I’m supposed to be. As with hearing, I don’t begrudge anyone who wishes to be able to see after having been totally blind whenever it becomes feasible to do so, but I definitely don’t. I guess in many respects, I would feel like I’m giving up my “self” as I currently know it.

These are certainly interesting and complicated issues, and I know many who are working to find their own answers as they deal with one, both, or some varying combination of them. I guess what it comes down to in the end, as I said when someone at a small church I went to thought of trying this same sort of intervention, is to respect the person’s humanity. Ask them questions about what they might want you to pray over, or if they’d just prefer to be left alone. Because what you think you see in someone else is not always what is.

Travel By Leg: on my mobility abilities

Posted on by John

This post inspired by Adventures in Low Vision, a blog about the different challenges and happenings its author encounters as she adjusts to low vision life. She writes snippets that I always enjoy, as they turn visual images into words.

In her most recent post, she asked the question “What do we as blind or low vision people do to ensure safe travel.”

In my now defunct blog, I had written about a series of techniques lumped into the general category called Orientation and Mobility that are designed to help blind people learn to navigate their environment. These most commonly include crossing the street safely moving around in large spaces such as malls and department stores, and using public transportation.

When many think of Orientation and Mobility, (O&M) they think of learning routes to specific places. Yes this happens, but if one only knew how to get from one particular place to another I don’t think one would be able to adapt well to new settings. I am happy to say that my instructors, probably some of the best there ever have been taught me methods that allow me to figure out where I am even when I locate to another area.

I never heard them use this exact term, but I believe the ability to put together bits of information to figure out different surroundings is called Structured Discovery. I sometimes do this by walking with a sighted person a couple of times and paying really close attention to turns, cracks in the sidewalk, street gutters, the sound of ventelation units, etc that help me memorize the layout. I would venture to say that suddenly I’ve gotten pretty good at this, and especially living in my sprawling Durham neighborhood with its restaurants, convenience stores, and leasing office a quarter mile away. I’ve also had to use this in the place where I work, as they often rope off familiar hallways without warning and I am forced to readjust.

The only thing that does concern me is the degree to which I rely on my rather shaky hearing in order to safely move about. I had lost this ability near totally with the lower quality hearing aids I’d had from January of 2006 till February of 2011, as they didn’t provide a high enough degree of stereophonic sound. By this, I mean the ability for both of my ears to work together to create a unified soundscape that makes it clearer when, say, cars are passing in front of me as opposed to going by on a parallel. This is vitally important when crossing streets.

Not that I’m entirely perfect even at that yet, unfortunately, but I think I do well enough to stay in one piece. I always press the button, waiting until I’ve heard an automobile pass in front of me before so doing to try and get myself as close to the beginning of the next light cycle as possible. It’s fun being me sometimes.

You might think it odd, but I believe the most dangerous part of the travel I do is actually crossing open parking lots. Here, if a car is moving it is usually doing so slowly. While I wouldn’t be hit particularly hard, hopefully, I also can barely hear the engine when there is little speed involved. I have lost a couple of canes this way, though as others point out in those situations, at least said canes did their job and kept my toes in tact.

To try and head that off, I’ll usually stand on the curb and, in a technique taught to me by my O&M instructors, wave my cane three times across my body to hopefully let anyone know that I’m about to step off. Then it’s just a matter of holding head high, trying to make sure I can be seen, and crossing fingers!

And on pressing buttons, or pulling cords, riding the bus is also usually an adventure. I’ve very much improved that over the year plus that I’ve been here as well, finally actually learning where the cords even are and thus how to properly use them.

And even though the ADA mandates it, not all stops are called out on most of the routes with which I interact on a regular basis. This is less of a concern for me lately though, as I can use my iPhone’s GPS apps to help me get a sense of where my exact stop is. I do this for the first several times I need to get to a different destination, until I get all of the turns, speed bumps, traffic lights and the like down so that I can ride without that assistance. I of course also tell the drivers where I wish to get off, but being human they are prone to forget and sail right on by if I don’t ring that ell in time.

As I stated earlier, I’m kind of afraid that my travel abilities may continue to deteriorate. I’ll probably never be able to really move around malls and such, unless perhaps I go ahead and get a guide dog. As far as that goes, I do feel I might be better with a dog than I’d thought as my basic mobility principles are solid. But if I have to get a cochlear implant, I’m raeding that others who are blind have lost some of that ability to track themselves in relation to other objects. That might render me unable to function, but I guess I have to hope not. Maybe it can be reacquired with time.

Thanks again to Adventurous in Low Vision for this post idea.

Hear It: My Challenging Wax-cleaning

Posted on by John

I should open by saying that I am trying as best I can not to come across as overly critical of anyone. I do not think for a minute that the medical professional who saw me intended for my experience to be as it was, and there are things I could have done to make it less likely to have gone that way as well.

That said, I have a disorder called Norrie Disease that renders some unable to communicate what they are feeling or thinking, due to moderate to severe intellectual disability, autism, or some other developmental challenge. So, I take seriously the idea that I can attempt to be a voice for others, of course not having gone through exactly what they are but still being able to give some idea as to what it may be like.

So an audiologist with whom I worked looked at my ears on my last visit to have the aids cleaned. This happened right before the phrenetic events of my Christmas vacation, and in many respects if the aids had to die on me again, I am highly fortunate that they didn’t wait past December 20th to do so. I can’t imagine the displeasure of trying to get by with only one working ear in large family gatherings. Even with both working, functioning in such gatherings takes work.

Anyway, she determined that my right ear in particular was packed to the gills with wax and should be dealt with immediately. She’d wanted to schedule an appointment for that day, but not surprisingly this wasn’t available. So, she had me booked to go in today.

For this appointment, I had to go to UNC Hospital, which is practically on the UNC campus. I managed to get to the Audiology department in time for my 9:45 appointment and settled in the lobby where they were watching some sort of weird cartoon. I also heard kids scampering around, probably burning off energy as their parents tried in vain to keep up.

Soon, I went in to see the nurses and have my initial forms filled out. They weighed me, I’m up to 141 pounds which may be the highest number this skinny person has ever recorded. Then, they started asking me all sorts of scary questions about disease, family history, etc. Standard stuff I know, but nevertheless it makes me nervous.

After a short wait in a doctor’s office, thankfully not too cold, and just as I pulled out the iPhone figuring that it might take longer for him to arrive, the doctor showed up.

“Ok, what are we doing here today?” he asked.

“I’m here to have my wax cleaned out,” I replied. “My audiologist says it’s starting to be a real problem.”

“Ok then, hop on up here,” (I was ushered to a somewhat reclined chair where my head was then placed firmly against its back at an angle), “and take out the aids, one at a time so you can still hear me and will know what to expect.”

Into my right ear went the air machine. I actually don’t really know what it is called, except that it made a fair bit of noise. I could immediately feel it sucking, and thought to myself “ok, maybe this won’t be so bad after all.”

And then, oh but then. He gradually amped up, commenting: “man this stuff is really packed in. That’s common for hearing aid wearers though.”

If I had remembered my last attempt at having this done, I would have suggested that we go ahead and stop there, just letting him prescribe me the eardrops he eventually did recommend I get. You administer them to each ear approximately three times a week for a month, and they’re supposed to loosen up the wax so that it will come out more easily. I’d done this a year or so ago, but then we never went forward with the larger-scale wax removal.

Unfortunately for me, this thought didn’t occur to me. As the machine pulled harder and harder in my ear, first tears began rolling down my eyes.

“Are you ok?” he asked.

“Yeah, this sort of thing just makes my eyes water,” I replied. I’m not crying! I thought to myself.

Within the next few seconds, I practically was crying. I kicked the table, screamed “ouch!” and all but forced him to stop. Oo man! I don’t think I’ve ever experienced pain like that. Oddly, the only thing I could think was “I wonder how on earth women go through with childbirth?”

“I’m about to pass out!” I instructed him once the machine had ceased operating and I’d removed both aids. “Would you happen to have any water available?”

I guess it had occurred to him that I might just need some water at some point, because a full styrofoam cup was in my hand a second later. I gulped it greedily, and just managed to stave off that unwanted episode.

After this, he decided to go ahead with the drops after all and have me return on February 13th for an attempt to complete the process. I was more than a little relieved to get out of there with my hearing in tact.

Except, when I plugged my right-side aid back in, all I heard was the faintest sound of its turn-on tone. “Oh no,” I thought in panic: “I may have lost a lot of my hearing in this ear!”

I muddled my way back on to a bus to Franklin Street to go to Walgreens and collect the prescription, then fired off an email to one of my audiologists to ask what she thought might be happening. I said “and if this loss is permanent, can I begin the process of getting a cochlear implant?”

She replied, correctly I now believe, that things would probably be ok in short order. My canals are kind of small, and thus it’s easy to get things like wax and such lodged in a place and way that it shouldn’t be. As the day has progressed, I’ve noticed more hearing returning as the pain lessens. All I can say to that is Thank God! I envisioned having to make radical changes to my navigation and independence, which I would have done if necessary. But I won’t lie, that sort of adjustment would be hard. I’ll probably have to make it at some point, I imagine.

So I guess the main reason I’m writing about this is to note the importance of really sitting down with the patient, doctor, and perhaps someone who can communicate on the patient’s behalf before treatment is initiated and generating a plan. The thing is, I know that doctors rarely have time to do this. If it doesn’t happen though, it could definitely have less-than-desirable consequences.

Also, it is important to listen to and be aware of the patient’s responses. I can say that he did suspend treatment once it became clear that I could no longer stand it. I’ve heard of cases where this hasn’t happened, and I’d bet it would be more likely if the patient was unable to speak for him or herself.

Just some stuff to think about. I hope all will be normal for me by the weekend, as I still feel some lingering pain but it is now more noticeably decreasing. A nap when I arrived home helped with this. I hope I don’t have any balance issues when returning to work tomorrow, but we shall see. More soon.