Author Archives: John

Cha-cha-changes

Posted on by John

Welcome to the first official post of 2015! Yeah I know, some of the Louisiana entries were made during 2015, but they were referring to an event that happened way back in ancient times of the year previous. So, here ya go.

Man, has this year gotten off to a rockin’ start! It is setting up to challenge me in ways I’ve never really been challenged, but that will help me get closer to where I want to be pretty quickly. These changes are happening on both a professional and personal level.

First, excitedly, I have been named President of the Norrie Disease Association. This was necessitated by our previous president having to step down due to some unfortunate circumstances that have made it difficult for him to continue in that role. While the reasons make me sad, I am still appreciative of having this opportunity and hope I can make the most of it. I got a strong vote of confidence from my fellow board members, though I honestly am not entirely certain why. Me? One who is sometimes too shy to make a simple phone call? Who definitely has a ways to go before he is as assertive as he would like to be? But, I hope I have made and am making progress in this area, and it will help to have such knowledgeable people to assist me as I do so. We’ll see if this August’s conference goes off fairly well.

RELATED: Five Years of the NDA

Second, this city and the Triangle Transit system have decided to pull a bit of a switcheroo on me. They’ve altered some of the routes that I take, especially that which I use to get home from work. I hadn’t known this initially, I suppose because I wasn’t smart enough to check the service changes page they posted shortly after the year began. This meant I got stuck at Durham Station downtown for 30 minutes, in the cold wind! I have since been trying to learn how to get from my old bus to the new one, and a cool thing is that BlindSquare GPS, an app on my iPhone, can actually tell me where the buses are within the station. Well it probably has some set database that doesn’t change often, as some of the numbers are transposed a bit. For example, the 700 now stops where the 400 used to, so it still calls that the 400. But as long as I know this, I can easily still use it to track my location. Hopefully I will know it by rote soon enough.

The final change I will talk about at this point is in my reading habits. Check out my 2014 Booklist, which you should find in the “Pages” section of this site. There, I note that I consumed 34 titles last year, a record for me. Many of these titles were by so-called “indie” authors, as I’ve befriended them on Twitter and wanted then to check out their works. As local writer Monica Byrne noted in an article that discussed her book, 2014 was actually the year of the indie author in many respects. One of its best reads, The Martian, had been put out by an unknown guy named Andy Weir. The thing I most liked about this book is that, while he clearly knows his stuff regarding what the planet is like, how one might experience a mission there, etc.; he does a good job of making things understandable to those of us who maybe don’t have such advanced knowledge.

I also took in more nonfiction than I ever have before. I’m thus starting off this year in the same way, currently reading a very popular title called The Immortal Life of Henrietta Lacks about a black woman who’s cancer cells were scooped in the 50s, implanted in a dish, and have gone on to aid in lots of research, medications, and the like. It’s an interesting read.

I have it as a goal this year to reach fifty (5-0!) books. That’s a lot for me, as I normally don’t have a whole lot of time to sit and read. I’m doing them two at a time though, and already about a third of the way through both books three and four.

I have them all in my iPhone these days, using the Audible, BARD (Braille and Audio Reading Download) mobile, iBooks, and Kindle Apps. All of these apps have their pros and cons, but as far as functionality goes I think Audible tops the list. In Kindle, if I happen to get a notification it shoots me to the top of the page I was currently reading. In iBooks, I am slowed by having to wait for the page-changing announcement to disappear, though I suppose I do like this announcement since I can keep track of my progress. And in BARD, the audio books work fine, but I wish the Braille books would be automatically marked when you stop. If I forget to set a mark before closing the app, it’ll jump back to the beginning of the book and I must then find my place again. Depending on how far I’ve read in, this can take a while!

Anyway, that’s a quick scan of 2015 as it has unfolded thus far. It looks to be an entertaining year, full of unexpected occurrences. I just hope most of those are favorable for me and for us all. More soon.

FRIENDS CAFE: A Summation of the Rest

Posted on by John

Well, as it turns out, not a whole lot happens after Sunday. But, that is alright, as I very much needed the unwinding.

Ok, I am certain that I bring drippiness with me on any vacation I take. Just as happened to me last year when I went to Tampa, I really don’t get any sunshine down in Louisiana.

Monday: I wake at about 9, bringing in the day the same way as I had before. Just laying back, listening to 105.9, a soul station in Lafayette that someone has recommended I check out. As I do this, I read yet more of the Armstrong book.

After coffee and biscuits, we basically collapse into the rockers and sofas where we remain parked for nearly all day, listening to a TV country station. Well she doesn’t remain parked, actually. Despite still feeling yucky, she leaves to get the car ready for the return trip to New Orleans and grab us some yummy food. She brings us back a huge plate of chicken strips with fat fries and an unusual dip.

Other than this, I simply revel in the idea of just being, worrying about nothing except inhaling and enjoying the next breath, and of course cool conversation that comes and goes as we please.

On this day, as we had some on the day prior, we talk about the differences between the US and Australia. We conclude that while blind people may generally have more opportunities here, both of these fine countries still have work to do before their citizens with such disabilities really have a shot at the job and life choices they want. He is an advocate in the land down under, and I in many respects have come to see him as a sort of mentor, at least someone to whom I could look up to. I want to be a louder voice in this grand community, but have to get better at getting my voice heard. I think maybe I’ll get there fairly soon, but that remains to be seen.

I also make a silly comment about life down under.

“Everyone in Australia is upside down!”

“Upside down?” he asks.

“Yeah, relative to us. Isn’t that odd?”

This amuses us both. I hadn’t really understood what was meant by the phrase “the earth is round until I was 17 or so, due to someone’s patient explanation of how it is in fact like the globe I’ve felt many times.

On Monday night, we do watch the movie God Is Dead. It is an interesting story about a college professor who attempts to get his philosophy class to declare in writing and by signing their name to it before class starts that God doesn’t actually exist. One student refuses to do this, and is thus thrust into a semester where he must present evidence to the contrary. The movie is fast moving, and yet still thought-provoking.

Early Tuesday: We have initially planned to go to New Orleans’ French Quarter, so I wake by 6:30, not knowing at what time things will get started. But he has had trouble sleeping the night before and she is still dealing with this sickness. We soon learn that it is the flu, of the type that can’t be stopped with this season’s vaccine. I’m amazed I’ve managed to avoid it thus far.

Anyway, because of all these things, we don’t actually leave until nearly 12 PM. They decide that, due to the likely crush of traffic, cold weather, and general lack of time, we will go ahead and head for the airport instead. This is ok, it just means I have to plan another trip down to stop by and thoroughly tour New Orleans, probably when it’s warmer out.

On the way to the airport, we make what turns out to be a crazy trip to a place called Brick Oven Pizza. The GPS first leads us around the block, then up onto an unnecessary road that takes several minutes to traverse. I am surprised she doesn’t just give up.

Finally at the restaurant, I get an Italian personal pizza with sausages, peparoni, mozzarella, and some veggies. I manage to eat half of it, allowing the server to wrap the rest in see-through plastic in the hopes that maybe security won’t throw it away.

Then off to make the somewhat sad trip back to my humble abode. Though I resist it at first, I finally allow these people to put me into a wheelchair and zip me to security that way. That always makes me feel silly.

I check out some generally boring bowl games until it is time to board the flight at 6:20 for a 7:00 departure. The couple beside me, I think the woman is American and the man Mexican, are headed to Miami to visit family. Ah, how I long to go down there and stay for a week or so.

On my next flight, from Atlanta to Raleigh, I meet a woman and her mom who are returning from a wedding in Fort Meyers, Florida. I would go there as well. This kind woman offers to assist me both onto and off of the aircraft, probably getting appreciative nods and smiles from tired agents and flight attendants.

Finally back at Raleigh Durham International Airport, I have the individual who comes to collect e from this woman take me outside where I slide into a waiting airport taxi. When the driver is unable to understand the address I try to give him, I just plug it into my phone and have my GPS issue the directions out loud. This isn’t a bad idea actually, as I can then be reasonably certain that we are taking the expected streets and I’m not getting the runaround. I mercifully get home at 1 AM, message all who care to let them know I’ve made it, and slide under the covers.

And that is the end of my wonderful trip to the state of Louisiana. As I said earlier in this entry, the question isn’t if but when I will return. Heck, maybe I’ll go and find my wife there. Ha, ha. That wrapped 2014, and I am ecstatic to see what kinds of excitement 2015 has in store. Hope your year has gotten off to a good start. More probably quicker than I know.

FRIENDS CAFE: Zydeco 2, Gumbo and Shrimp Galore!

Posted on by John

Today, I got to take in a bit more of Zydeco in a slightly different context. I also partook of mounds of food in a local establishment, something I always wish to do whenever I travel.

Sunday, December 28

7:30 AM: We have already decided that today would be a relatively slow starter, since the previous two called for us all to rise so early. Given my sleep issues when o the road though, it’s not surprising that I am still awake by this time. Not to mention the need, as usual, to go ahead and put the hearing aids in so I can know if I am being summoned for some reason. I can’t sleep with them on, but don’t wanna be in la-la land if, say, they call me for breakfast.

So, I fire up the early Jazz station again on Pandora and read more of the Lous Armstrong book for about an hour. It feels good to just relax against the pillow in an unhurried way.

At about 9, we gather for coffee. She also makes biscuits, serving them with fig jam which I had never tried but liked well enough. We are each given three, and the guy eats all of his before I have completed my first one. Yeah yeah I know, I eat slowly. I think maybe my stomach has shrank or something. Life as a bachelor?

I go and grab a quick shower, and at around 11 we decide to attempt to watch God is Not Dead on Demand, because they both really want to see it. She searches high and low for close to an hour, can’t find it iuntil practically giving up, locates it, then decides we will go ahead and catch it at another time. This is because we want to get out for a little while and enjoy more Zydeco at a place in Lafayette called Vermilionville.

We leave for this venue, again under drippy skies, around 1 PM. Both this and last year’s winter vacations saw very little if any sun, actually, but I guess that’s mostly to be expected during these months. The village-type establishment is located right across the way from Lafayette Regional Airport.

First, we pass through a little store, where we are given wrist bands that will allow us admission. Then, in a courtyard between the store and bar, we see a giant pot that had been used to haul sugar cane but is now full of soil and little plants. I think she says there are also other bits of scenery out there as well, little houses and the like.

Inside of the place where the performance is happening, I sit at a table and suck down a Corona. People are dancing here, but it’s not the same kind of happy-go-lucky crowd as had been at Café des Amis, so I mostly just take in the music and allow my mind to wander down whatever path those tunes take me.

We are listening to Chubby Carrier and the Bayou Swamp Band,

and I enjoy them well enough. The show lasts till approximately 4 PM, by which time my bladder is nearly bursting. We start a running joke that if I even wish to carry a bottle of water with me into the car we’d need a urinal as well. I don’t know, it’s just that water and beer zip right along the pipelines and need removing quite regularly.

Before leaving, I get to meet Chubby Carrier himself, pictured here,

Assuming I know what I'm doing, this should be me and Chubby Carrier

Chubby Carrier

and discover that he regularly performs in and enjoys Charlotte.

“Yeah, I go to a place called Double Door all the time,” he says: “those people love Zydeco there!” I’ve heard of the Double Door, but have never actually been there.

After this, we make our way over to a restaurant called Don’s Seafood Hut. The place is nearly silent when we enter, but quickly becomes busy when a party of 25 shows up at once and nearly overwhelms the servers.

This meal comes in parts. First, I eat some buttery bread. Then onion rings with a special dipping sauce who’s name I can now not remember, but that I find quite tasty. Next, I have a piping hot cup of chicken and sausage gumbo. Ah, don’t that feel good going down! My extremeties in particular are still cold from the day’s weather, so I revel in that feeling and flow of warmth that radiates from my belly outward. And finally, I opt for shrimp and fries. The menu states that the shrimp are the big ones with tails, but the kids menu features popcorn shrimp. So, she asks the server if we can substitute the little ones for the big ones and I could get a regular serving size of these, and the server agrees. Not that I really need a regular serving size, as that turns out to be huge! I only manage to consume about half of them before I am bursting at the seams.

After that fantastic meal, it takes me a minute to wrench myself back out of the booth. I half roll myself out to the car, through the now slightly more insistent rain, and we head back home. On the way, I check the scoreboard and discover that my Carolina Panthers are putting the smackdown on the Atlanta Falcons, a game they would ultimately win 34-3 to clench the NFC South Division title and a trip to the playoffs with a sub-.500 record. I of course brag about this on Facebook, noting that I am “proud to announce from Saints territory”. She is a Saints fan, and so mockingly threatens to throw me outside to sleep in that insistent rain. Ha, ha, ha.

And that basically makes up Sunday, all in all a nice day. We just take it easy from then on, watching an episode of 60 minutes and continuing the chatter to which I have been looking forward on this trip. Everyone begins filtering out to do his or her own thing by 9, so I climb the stairs and settle in with my book and the night-time football game until sleep begins its gentle tug.

FRIENDS CAFE: Zydeco 1, Tight Crowds and Dancing

Posted on by John

I think this day was the climax of my trip, in many respects. I had a lot of fun, got to enjoy a new kind of music, and expand my food repertoir a bit. Not to mention bouncing around a jam-packed building with random people.

Saturday, December 27

6 AM, Having already plugged the hearing aids in so that I wouldn’t miss the household’s early rising, I am called to action by a light knock at the door. Time for their usual coffee and morning chat. I have fun with this, feeling the correct balance being restored to my “caffeine stream”. It is no wonder that coffee is a multi-billion dollar industry in this country.

Feeling even more refreshed after a quick shower, I and they are relieved to discover that the deluge of rain (supposedly 7 inches) that had been forecast has really turned out to be more of a slightly unpleasant drip. I guess that we were going to give it a go anyway, given that we’d be leaving early and were bringing along the appropriate gear to protect said hearing aids, but definitely not having to deal with that kind of craziness is preferable.

Into the car for the fairly short road to a town northeast of Lafayette called Breaux Bridge. I’ve heard of this place, because former Carolina Panthers quarterback Jake Delhomme originated here. We are visiting not for sports though, but for their famed music, called Zydeco. According to the Wikipedia article I read, this musical genre is fairly distinct to Southwestern Louisiana, and was invented by African Americans and Creoles in the area. The article goes on to state that the first recorded instance of this term (Zydeco) was by a country western group in 1929 called the Zydeco Skillet Lickers, and they had a song called “It Ain’t Gonna Rain No Mo”. Ironic title for our day’s likely outcome.

Our intended destination is a jumpin’ place called Café des Amis, from which I generated my title for these posts. Not only the building but its surrounding area are about as full of people as can possibly be, and then some. We have to connect to a long line and hope that maybe we will get inside. As we wait, we make friendly chatter with everyone around us.

“Do you know them?” I often asked the woman of our group, referring to the people to whom she speaks.

“Nope,” she replies: “I just started talking to them five minutes ago”.

Yup, it’s just that kind of place. Once inside, I even get to enjoy a little of that randomness myself when a woman pops out of the rocking masses and asks to dance with me. If I do this right and have chosen the correct photo, always an adventure for a blind man, you should see us standing there. IMG_1736 And now to something I do know for sure what I doing, I recorded an audio clip there as well. Great music and great musicians, Leroy Thomas and the Zydeco band. I hear they’re always wildly popular.

Soon enough, a table opens up and we sit to have breakfast. You always have to eat fairly quickly, as there are people pressing in on those seats as soon as you’ve finished. I opt for a yummy sausage, egg, and cheese croissant and some grits, I think, along with a glass of orange juice. I also try a piece of beignet, which was delicious. It tastes like a funnel cake that has been stuffed with eggs and such.

Once we finish, we prepare to exit this particular café. On our way out though, we come across someone to whom I am introduced who also happens to write a blog that focuses pretty heavily on travel. I like that the URL is A Road of My Own, and the title is Traveling Solo. I ask my friendly host a couple of times if she had known of this before striking up that conversation, but as usual she hadn’t known this individual at all. This is a definite, good coincidence.

We then venture over to the Joie de Vivre café, as I guess many coming from our former location do. Here, the guy in my group strikes up a jam session with some of the other musicians there, his instrument of choice being the piano. Here’s a bit of that audio as well.

By about 1:30 PM, we decide to head home, where we mostly just chill for the rest of this day. Once both of them have drifted off for a nap, I sit on the little rocker and listen to sports for a good while. Then when the guy returns, we have a bit more of a conversation, before the woman returns and we settle in for some TV and good company.

For dinner we also have croissants, because she needs to get rid of them. She puts ham, cheese, and I guess mustard in them. Whatever the sauce inside, they are so good that I eat the two almost quickly enough to lose a couple of fingers. But then, what isn’t good down there?

This makes up the bulk of Saturday’s activities. I eventually retreat upstairs, turn on some jazz, and read more of the Louis Armstrong book. I think by this point, unfortunately, she is beginning to come down with something that may have been gotten from exposure to the swells of humanity, so we just lay low after this. More soon.

FRIENDS CAFE: Kind Servers and Craw-fishy

Posted on by John

I will use the overarching title “Friends Café” for my trip to Louisiana, both because it’s the translation of an actual place we visited, and because it applies to pretty much everything I experienced on this journey. Never have I seen truer examples of “Southern hospitality” than I have in this fine state. So, let’s begin the journey shall we?

Friday, December 26

3:20 AM, I make my halting way out to the curb, absorbing the absolute quiet and clear cold that are present on this post-Christmas night. As the duffel bag’s strap digs into my shoulder, I hope that my prearranged taxi does show up at 3:30, for I have no other viable options that I can think of. 3:22, 3:24, and finally it pulls up at 3:27; actually three minutes early. Well done!

I hop in and nearly doze, warming my digits in the heat stream as the driver, from a Middle Eastern country I think, chatters about perceived differences between Christianity and Islam.

“Do you know why you’re here?” he asks.

I think his take-home message is that death exists to keep us from doing things that are too far out there, and that it also focuses us on finding our purpose. We should also strive to live the best we can while in this body. I can agree with those conclusions. I think more than anything though, he’s just talking to keep himself awake long enough to reach Raleigh-Durham International Airport, an 18-minute ride along Durham Freeway and Highway 40 according to Google Maps.

We do reach the building, and I am disgorged at the Delta Terminal. A woman who says she is on her way to Detroit helps me to the check-in counter, but I do not get anymore time to speak to her. Really, I suppose that few people feel like speaking at 4 AM, as even the worker who is guiding me says the bare minimum.

At the ever-so-fun security checkpoint, I am pulled aside and wanded, even having the palms of my hands scanned. Fun times. Then down to my gate, where I sit for about 15 minutes before being silently ushered aboard.

The first flight to Atlanta departs promptly at 5:10. I am annoyed for most of it, because the Braille display absolutely refuses to cooperate. Airplane mode has shut down Bluetooth, and when I attempt to re-enable it I still can’t regenerate the connection. I have since come to the conclusion that it is better to turn on Bluetooth immediately after going into airplane mode, and not once I plan to actually use the display.

I have brought two books onboard with me: Louis Armstrong’s New Orleans, an exhaustive piece about that city’s musical, Jim Crow, and other history as it relates to that jazz great; and Buccaneer by Maycay Beeler, a true crime story about a drug dealer who has all sorts of adventures transporting product and eventually lands in prison. I find the latter to be a better airplane read, as the chapters are generally short and action-packed enough to hold my interest.

After having guzzled a cup of coffee to also give me juice for the day, we touch down in Atlanta where I am to wait another hour and a half for my final flight to New Orleans. No one talks to me at this point, so I finally fight the display and get it working, and chat with people online.

The next flight is relatively uneventful and on time, so I just sit and enjoy this one. On both of these trips, well really all four, I have been placed in right-side aisle seats. This means I have difficulty engaging seatmates in discussion, since I can’t hear particularly well in my right ear. In the small talk I do manage on the way to the Big Easy, I ascertain that the person beside me is from Massachusetts and is visiting family.

“It may be kind of cold out there,” she says: “but I’ll still enjoy it!”

As we disembark, the flight attendant insists that I must try beignets and of course that other Louisiana thing: crawfish. An agent then shows up, whisks me into the airport, and since I’ve managed not to check a bag, straight out to where my party awaits.

I have come to see two individuals with whom I serve on the board of the Norrie Disease Association, mostly for the vacation and fun chatter that would ensue. They are both due to make the long trek to Australia, another place I would very much like to visit, at about the time that I return to the shop for work. The woman who is hosting me at her place actually resides in Lafayette, which is about as far from New Orleans as Charlotte is from Durham. I suppose I should have known this, but still end up feeling a bit bad for not flying straight into Lafayette. That choice does save me $100 at least, though.

Before beginning that drive, we stop at IHOP for a quick bite. I opt for a sausage, egg, and cheese sandwich and fries. They really give me two, and I can barely eat even one of them! This is only the beginning of my food consumption in that great state. I also have fun talking to the server in there who asks “what are you doing with that phone!” I think she was surprised at how I could even operate an iPhone. She is fun, funny, and cool, and keeps watching me for most of the time I am there.

On the road again, the guy and I in back start conversing about topics as wide-ranging as independence for blind folks, the pending big changes in the Norrie Disease Association, and what we want out of life in general. Eventually we start to drift off, and she turns on the radio probably to stave off the silence and keep going. After nearly 3 hours, we arrive at her place.

It is a comfortable little house with a 1-car garage. I am given a quick tour: shown where the two bathrooms, stairs, and the guestroom where I will sleep are located. I am then ushered to the little rocker where I immediately get comfortable, wrapping in an LSU blanket and enjoying the warmth of a fire. I quickly adopt this chair as “mine” during my stay there.

Not much happens until dinner, where I get to try crawfish for the first time. It is in a pie that they get from a place down the street called Pouparts French Bakery, kind of like a chicken pot pie type thing. There seems to be some other filling inside of it too: consisting primarily of the “trinity”: onions, bell pepper, and celery, and I enjoy it. I don’t notice much taste in the fish itself, but it might be hard to distinguish within that context. Accompanying that, we have a delicious salad. She accidentally gives me the one with Caesar (sp?) and he the ranch dressing, but I certainly don’t mind. It is delicious and full of flavor. There is also a potato covered in flecks of bacon and cheese. MMM.

And that just about wraps up Friday. As the weather turns gloomier, we opt to just stay inside and call it a night early. I am pretty tired, so take a bottle of water upstairs, crawl under the covers to catch some football on the phone, and soon enough give in to dreamland.

Christmas Vacation 2: The Party

Posted on by John

Because I am completely unimaginative, I will use the same subject line I did at this time last year. As I had then, this year I also venture to Lumberton NC to attend the now-Annual Christmas party this past Saturday.

First, the departure. I am excited to learn that Megabus has now made available a route straight from Durham to Fayetteville. This means that, unlike last year when I had to get a neighbor to drive me to Raleigh where I connected with Greyhound, I am able to launch straight from home.

I almost don’t even manage to get out of here in the first place, though. Uber, I still love you as a service, but I have to wonder about the drivers you’ve hired of late. I know that the Megabus is scheduled to leave at 11:25, and I would have to stand in the near-freezing rain to wait, so I admittedly opt to push it about as close as I can and leave at 11. The Uber driver I get though is unable to understand English or, I gather, follow the GPS. I try in vain a couple of times to explain the somewhat complex instructions for locating my apartment and finally hang up. Pondering what to do and prepared to call Durham’s Best Taxi, another taxi happens to pull up in front of me and ask if I need a ride. I’ve seen this guy before as he regularly cruises the neighborhood, and so I don’t hesitate to jump in and hope I still have time to get to that Megabus stop. And because I was unable to properly cancel my Uber, they still billed me $4, I guess their base fare.

Oh man is it cold at this stop! The wind is cutting, and the rain isn’t absolutely pouring but it’s certainly hard enough to make even checking my iPhone impractical. A couple of other families stand nearby, kids milling around and probably trying to keep themselves warm as well. The vehicle mercifully arrives, and a woman lets me stand with her so that I will know when we can board.

I guess the vehicles can be designed differently, as this one has virtually no seat pitch. I sit with my knees almost under my chin, well ok maybe not quite that drastic but close, and try to figure out a way to balance my Braille display on my lap so I can read.

“Excuse me, sir” I hear a voice ask: “where are you getting off?”

I tell her, and discover that she is an older woman from Connecticut who is coming to visit her mom for a month. She has some kind of physical issue who’s origins she is not even certain of, and thus is unable to walk easily.

“I usually use an electric wheelchair,” she tells me: “but they’ve taken it and put it somewhere else. Having to use my walker now, which kind of hurts me.”

We talk about potential careers, and she says she once worked in customer service, but wants now to use her cooking abilities to start a food truck. MMM!

She has offered to help me sort things in Fayetteville in the event that I arrive and my pick-up ride isn’t there, but as it turns out, my ride is indeed waiting. She, as well as the woman on the bus, expresses some concern about the area of town in which the bus disembarks, noting that it’s “real ghetto”. I am just relieved to not have to wait in the cold again.

We speed toward Lumberton as I make conversation with the driver and a front-seat passenger who is also a friend. Both of us blind folks opt to remain in the car during the quick grocery stop, sitting for only about 7 minutes while some additional supplies are acquired.

The party is much the same as it had been the year before and the one before that. I meet my cousin and his wife there, as well as another couple from smalltown NC not far away from Charlotte, who had also been there the previous two years. But, a friend from my university days has made an appearance for the first time in a while. And the most exciting find: my other long-lost “cousin” also shows up with his very kind girlfriend, who impresses us all by her willingness to just jump right in and make herself at home among this disparate, sometimes crazy group.

I am given two tins of cookies, as well as a gift that I still have wrapped because I want something to tear into on Christmas. Just a little of that childhood sentimentality, for old time’s sakes.

The evening’s highlight is the gift exchange. I brought an umbrella, easy to tell what it is even though wrapped, but hey a useful device! Especially considering that we’ve turned into Seattle lately. I don’t know who takes it, but it is plucked near last. I initially get a $25 Starbucks gift card (OO, nice!) but am not surprised in the least when someone opts to “steal” it. On my next draw, I got some sort of ringholder. Funny.

We also consume delicious nachos with cheese and meat, pasta sallad, and the requisite sausage ball that I have every time I go to this particular residence. We laugh as the NFL’s Washington Redskins amazingly knock off the Philadelphia Eagles, ending the Eagles’ hopes of making the playoffs.

After more chattering and ingestion of punch mixed with OJ, lemonade, Southern Comfort, and perhaps something else, I slunk off to bed.

And that’s pretty much the crux of the happenings at this year’s party. Most everyone had already departed long before I do, but I stay with my friend and watch our Carolina Panthers keep their playoff chances, which should by rights have been long gone, alive with a win over the Cleveland Browns 17-13. We have to defeat the Atlanta Falcons this Sunday starting at 4:25 in order to win the woeful NFC South, and extend our season with the worst record in NFL history of any team that has managed to do so.

I guess I’ll check in on that one while down in Louisiana, as I will be from this Friday till next Tuesday. Those will of course be my next series of posts. I’m guessing more will happen than I can even contain in two entries. We shall see, though. Wishing you all a Merry Christmas, and happy holidays.

EDIT: Oh, and I also don’t have to await a ride when I arrive on the Megabus in Durham, as the individual I’ve designated as my favorite cabbie happens to be there. I guess she positions herself near arriving transit vehicles like that and Amtrak to see if she can get a fare. Makes me happy, again.

Brailliant Follow-up, and Holiday Travel

Posted on by John

So, the promised Braille display did in fact arrove last Wednesday. I was so happy about this that I coasted through the rest of my workday, unable to think about anything else but coming home, opening the online User’s Mannual, and figuring it out.

This is exactly what I did. First, I was impressed with how intuitive the display and its commands are. Access the iPhone’s status bar? Press the Braille letter S, as represented by its command keys. These are a set of three keys on either side of the unit, not part of the keyboard but off to its side, that give additional functionality. And because the letter S is taken by said status bar, you press W to swipe down and read continuously. This is very nice indeed.

The display also has a set of thumb keys that are along the front of the panel. I probably don’t exactly use these as intended, because well what do I do that is as intended. I just place an index finger on the key that advances by display length, then can run my other index finger, the right-hand one, along the top. This method has me reading almost as quickly as I would on a full sheet of Braille paper, and boy does it bring books to life in a new way.

While I had great success with the reading aspect of things, the writing took a bit longer. First, it took me a minute to work out how to power up the Braille Keyboard. In a brainwave, I finally deduced that this could be done within the display’s onboard menu. Then, I kept having an issue with the keyboard locking after I entered only a few characters. First, I concluded that this happened only if I turned off VoiceOver’s speech on my iPhone. When it occurred again, I assumed it was only on the initial startup for that day. Finally, I’ve just given it over as a random issue, possibly in VoiceOver, iOS, the display, or some combination of all three. The more I use it though, the less I’m finding that it even locks up period. This is definitely a good thing for my frustration level.

This display has had the effect I’d hoped for. Because I can sit in a coffeeshop or my job’s break room with ears unencumbered by a headset, I am much more able to meet new people. Not to mention that I can read for way longer periods of time without that feeling of agitation that can sometimes come when listening to something for too long in one’s ears as well. I can’t wait to see how this technology will help me on my coming bus rides and flights. More on those in a bit.

I have also enjoyed using the display as a remote of sorts for the iPhone. Now, I can have my phone plugged into the speakers and charger on my low table, and change songs, sports, NPR stations, etc from the comfort of my desk. And now that I’ve turned off the clicking sounds the iPhone normally akes when VoiceOver is in use, I can check and play with other apps on the same device even while listening to other media. This definitely makes the iPhone more computerlike than it had been before

Along with this fantastic display, the North Carolina Division of Services for the Blind allowed me to re-acquire the JAWS for Windows Screen-reader. Once the dominant way in which blind folks accessed PC’s, this thing now seems to be kind of, well, iffy. At least on my machine, when I use Jaws it causes my Internet to slow down somehow. I know that doesn’t make much sense, but it’s true. I can hardly pull tweets, log onto websites, or do much else. I’m not really sure why, but it’s disappointing as I was hoping I could disconnect my current solution and save some dough. Hopefully I’ll figure out what on earth is going on there.

And speaking of dough, more the spending than saving as I probably should be, I have two fun trips booked for this month.

First, I’m going to what has become an annual tradition: my friend’s Christmas party in Robeson County North Carolina. It’s a large, rural county a couple hours Southeast of here, and I’m kind of looking forward to just letting everything go for at least one day and reveling in the holiday spirit. The party will be on Saturday, and we will partake in what is sure to be an entertaining gift exchange, some fun conversation among long-familiar folks, and good food! Sausage balls?

Then the real kicker of my extended vacation from work, which lasts from December 23-January 5: I’m taking a jaunt to Louisiana to hang out with some good friends with whom I have been working as part of the Norrie Disease Association for some time. I will fly into New Orleans, then be whisked to Lafayette. More good, probably rather interesting food shall be consumed, I think a show will be listened to, and probably a lot of chatter about any and everything will happen. I am definitely looking forward to that, will be there from the 26-30. The only thing is the crazy flight times: I depart Raleigh/Durham Airport (RDU) at 5:10 AM and will return there at 12:22 AM. It’s all good though, I should be well-rested and ready to go on both ends. I’ll definitely take traveling at those times over working anyday!

And that’s a little about what’s going on this month. It has been a great one, as this year has entirely. I should do a review of the extremely fast-moving 2014 at some point, but not real sure when I’ll get that in. No doubt I’ll have tons to write about Louisiana, so we’ll just have to see how that all plays out.

Do you have fun holiday plans? Whatever they are, I hope you stay safe and eat lots. More comin’ soon.

2345-125-15 12-15-1-136-2345-13456 135-124 12-1235-1-24-123-123-15

Posted on by John

In its simplicity, it reveals the word(s) to so many on an 8-by-11 inch sheet of thick paper. At least this time-tested method had been the most common way to present written text to those who are blind for many years, taking me from the good ol’ days of primary school up through the proud moments of my high school graduation. Its existence ensured that I was able to get an equal education to that of my sighted peers.

It is not, in and of itself, a language, as so many think. Thus the question “is it harder to read this way than in English?” is an incorrect one. Rather, it is a medium: a means of transmission in the same way that print is.

“24-2345” 24-234 12-1235-1-24-123-123-15, and throughout this entry, I intend to pepper little bits of code that are to represent the dot presentations as we see them. View the Code Legend here, and try to figure out as many of the words as you can. Many can probably be ascertained by 14-135-1345-2345-15-1346-2345.

Braille is made up of different dot combinations that are centered around a six-dot cell. On the Perkins Braille Writer, the most regularly used device for hardcopy output, the dots are as follows: to the left of the space bar going right to left, dots 1, 2, and 3. To the right of the space bar, going left to right, dots 4, 5, and 6. The dots are pressed simultaneously to create whichever letter/number/symbol you wish to generate.

When viewing Braille characters on the paper, however, the dots are aligned so that dots 1, 2, and 3 are on the left side of the cell, while dots 4, 5, and 6 are on the right. I am not certain how challenging it would be to discern this visually, but know of many people who are able to sight-read Braille so suppose it can be done.

As I suspect many are aware, Braille was created, or more like modified, by the Frenchman Louie Braille, who had lost his sight due to an unfortunate accident involving an awl that stuck into his eye. This actually helped to give rise to the first method for writing in Braille: the slate and stylus.

1235-15-123-1-2345-15-145: Connecting the Dots: Braille in the Digital Age An excellent post recently written by one of my online friends.

While Braille is not a language, it does have the ability to shape thought. For example, take the oft-used phrase “knowledge is power”. Because Braille tends to take up so much space it also has a contracted form, called either Grade 2 or Contracted Braille. In this form, the word “knowledge” is represented by only the letter K. Oddly, this does seem to confer an unusual amount of power into that statement.

Well, I should say that Grade 2 Braille is what I grew up with, but that is now being phased out as attempts are being made to move to a single standard called United English Braille, or UEB. I don’t really know much about nor have I seen this type of Braille in action, but I hear that some of the symbols we’ve been used to are changed or removed. Hopefully, it doesn’t take us older folk too long to master this new incarnation, though.

I’m writing this, because in theory at least, I will get a new refreshable Braille display, the Brailliant BI 40, next week. This designation means that it has 40 of the six-dot Braille cells I referred to earlier, making it 15-1-234-24-15-1235 to read an entire line. I am happy about this, as the previous display I had only contained 18 cells. This meant a lot more clicking, and was generally not all that 14-135-1345-1236-15-1345-24-15-1345-2345.

This equipment is being provided to me via the National Deaf-Blind Equipment Distribution Program (NDBEDP), a trial effort to help individuals who need this technology but cannot practically afford it. In order to obtain it, I have been working for the past year with my deafblind specialist at the North Carolina Division of Services for the Blind, who has handled much of the paperwork and coordination with the Division of Services for the Hard of Hearing. There are some income eligibility and hearing/vision requirements, and so if you are interested I would advise checking with your state’s equivalent department(s) to see if you meet these and can be assisted. I think in my case, the ear infection incident I suffered earlier this year definitely showed why I should get my hands on a display as soon as possible. Not to mention it will be pleasant to be able to read books and create my own ideas of how characters sound without the interference of 15-123-15-14-2345-1235-135-1345-24-14 or human voices.

Currently, the cost of these displays is quite high, I would guess no less than $1500, and well upwards of 10 G’s for a high-end model. Happily, there is an attempt by two orgs to bring that down to around $300. It looks like those models would have only 20 cells, but that would still revolutionize access for people who aren’t able to utilize government programs for whatever reason. It also would bring the price in line with most other mainstream pieces of technology. I have high hopes that this will happen. I do not think Braille will disappear as technology advances, but as my friend said in her piece, it will become more accessible and useful than ever before. 123-135-1345-1245 123-24-1236-15 12-1235-1-24-123-123-15!

Another Durham Night

Posted on by John

A month or so ago, I got a notice via email that NPR’s Ask Me Another, a puzzle/comedy show, would visit the Carolina Theater here in Durham. I decided I would go, opting for mid-priced, and thus first of two balcony level seats. It took place yesterday, and was quite enjoyable.

First though, I had to visit a more recent but instantly respected local institution, Cocoa Cinnamon. I’d read an article way back when I arrived in the Bull City last February about how this place was started, I think by some Russian folks? I can’t exactly remember the story, but was inspired by the entrepreneurial spirit it suggested. It kind of made sense to go on this day, since the little cozy coffee shop was located only a few streets from the theater.

I got there at 4:15. The crowd kept ebbing and flowing around me as I leaned back in a comfortable, homely chair. The only issue I had was that there was little table space inside, meaning I had to hold the giant, two-hands-requiring mug aloft. This meant I couldn’t immediately use my iPhone, which ok ok was probably a good thing, as it forced me to enjoy the environment while I sucked down the vanilla latte..

And speaking of that, yeah the price was a bit up, but I suppose you’ll have that at a non-chain establishment. However, as I said I looked forward to actually supporting locals with good business sense.

And the baristas were nice as well. I remained there till around 6:30, and thus a different woman helped me with the cookie recommendation, a giant coffee-flavored confection, than I’d encountered when I entered. She was also kind enough to walk me outside and help get me into my Uber ride for the short trip over to the auditorium.

Last chance for a $30 trip! Use my Uber code to sign up: johnm1014).

The show started at 7, with the house opening at 6:30. I had to wait a couple of minutes to go inside, but was able to do so in the lobby that smelled of popcorn. My kind volunteer usher told me that the building has two entertainment auditoriums and a cinema where, well different, movies are shown. I think they like to air old stuff as well as pre-screening newer ones. I’ve also learned that that theater has been around for 86 years.

Even so, I was glad to see that this theater had an elevator. I could have of course walked up the stairs, but hopefully the lift would make it more wheelchair accessible. I’m not sure about the small steps that lead up to one’s seat though, but I guess they probably have an area where chairs can park before actually getting to said stairs.

I was told that the auditorium where Ask Me Another was staged holds approximately 800 people. Into my seat, I settled in and immediately sent my cane sailing away somehow. The woman to my right couldn’t initially see it, which caused me to panic. But luckily, it had just fallen to my left. I also enjoyed a short conversation with the guy on y other side, who said he was a great fan of the show but hadn’t known what Ophira Eisenberg, the show’s host, looked like; since he’d only listened to the podcast.

Things actually got started about 12 minutes late, I suppose not too surprisingly. Weekend Edition’s Scott Simon did the courtesy announcement “please turn off your smartphones,” then Ms. Eisenberg came onto the stage. She buttered us up, “Durham, are you ready to party!”, and told stories of predictable Southern hospitality as she walked through the grocery and on the street.

“Um, I wasn’t really sure how to react to that”, she thought in response to some such acknowledgement.

The house musician, Jonathan Coulton, worked the audience into a fervor with a silly song in which he instructed us to sing roughly in a way that represented whichever characters the song was referencing. Sadly, I couldn’t exactly hear what they were saying. That’s probably not much of a surprise, though. They definitely had fun with it, and the energy of the crowd made me smile.

Then, the official recording began. What we hear on the radio only lasts an hour, but it actually takes about two to complete. It begins with two contestants answering a series of crazy category questions. The first was “Are you ready to rumble!” in which all of the correct responses would end in MBLE. The competitors got into it, mumbling “are you ready to mumble?” sounding meak and quiet when saying “are you ready to humble?”, and the like.

The next category was sports teams. They would give some silly clue, and the contestant had to determine which college team was being spoken of. Everyone was kind of quiet as she mentioned this, till someone did the example, saying something that referred to the Blue Devils. More people boo’d than cheered, which amused me since we were definitely in Duke territory. I guess in the Carolina Theater, it was a partisan Tar Heels crowd. Well, of course.

“Wow, a lot of emotion there!” she laughed in response to the crowd’s reaction. “Everybody’s like blah blah when the category is mentioned, but when I ask you who’s side you’re on?…”

After another category of some kind, she interviewed a musician who now lives in the area, but is originally from California, I think. He’d lived in Iowa before arriving in Durham, and commented on the hilarity of being able to walk onto his driveway in barefeet on Christmas here. I’m not sure if I would do that, but well… They then asked him to identify a series of songs that had been altered lyrically in some way. More contestants then did this as well, identifying songs associated with states but who’s state names had been changed to more exotic locales “to bring about world peace,” according to the show’s proctor.

Intermission happened at roughly 8:30, and I got my exercise getting up and sitting down as people moved about along the extremely narrow steps. My knees were so close to the heads below me that I had to make a conscious effort to avoid knocking them against those heads repeatedly. It was fine, though.

The final round was on hills, in honor of Chapel Hill. They nearly ran out of questions to ask the two finalists, and so came down to a tie-break that gave the win to the first to buzz in and answer correctly.

So those are a few of the highlights I can recall. Overall, I really had fun and found it to be a fascinating experience. As someone else pointed out, it was interesting to hear Eisenberg go back at the end and re-speak short portions that the producers, through an earpiece I think, told her to smooth out. This particular episode will actually air on January 22nd, and I will probably listen to it to see how it juxtaposes with what I heard while live in the place.

Now, still looking forward to the live Wait Wait Don’t Tell Me taping I’m due to attend in Chicago. I guess that’ll happen sometime next year though. I want to do more other stuff like that as well.

But that’s a thing I really love about Durham: it’s small, but has good transit and enough umph to attract some pretty cool acts. We’ll see what else I can find indoors, to keep my mind off of the falling temperatures.

Five Years of the NDA

Posted on by John

The organization to which I am referring, the Norrie Disease Association, has actually existed for more than 5 years. If my facts are correct, it was founded in 2006 by individuals with Norrie or those who are close to such individuals, (e.g) family members, certain medical professionals. The main purpose of the NDA is to offer support to all involved, advance ability to do and knowledge into research on Norrie-related issues, and to enhance outreach within the larger medical and social context.

I became aware of this organization in 2009, when they advertised to a group of us who had completed a survey about Norrie symptoms on their upcoming conference in Boston. I decided pretty quickly that I would in fact attend that conference, with little understanding of how my life would change as a result.

On November 13 of that same year, 2009, I sat outside of my apartment clutching a nearly dead cell phone to my ear and shivering as I tried to maintain reception. I was attending my first ever teleconferemce as a board member of the NDA, and man was I ever shy. I probably didn’t say much beyond “Hello” when I called in, and “bye” on disconnecting after two hours of chatter. To be honest, I wondered why I’d opted to volunteer in this way at all, and especially as I was in the thick of a crazy first semester at grad school.

Time passed, and with few exceptions I attended each monthly meeting. Slowly, a rapport built between me and the rest of the group, which also consisted of two other Norrie men, two parents of persons with Norrie, and a sibling of that same type. The thing that most brought me out of my shell was the feeling that others took my responses seriously, even if at first they may have been hard to hear, since I would mumble with little confidence.

The person who did the most to ensure that I found a bit of my niche as NDA boardmember was the late, great Mike Kosior. My understanding is that this group was initially his idea, and at that time he held the title of Vice President. He encouraged us all actually, making each person feel like he or she had something valuable to contribute. We hadn’t discovered until he died, but Kosior took the time to email us one by one, asking how things were going, wondering how he might help to make things better, and giving us all silly knicknames. I was “Chief”. Interesting.

I got to participate in planning for the 2012 conference, a month prior to which Mr. Kosior sadly passed on. It was tough to carry on anyway, but we all felt that he would have wanted us to do so more than anything.

I’d chosen to head the meeting of Norrie men at the conference to discuss challenges and such that we face among ourselves, and I admit and have been told in critiques that I didn’t do the best job in the world at moderating said discussion. I think that shortcoming was again reflective of my general shyness, a characteristic I hope I’ve managed to tamp down a bit simply by continuing to watch how other board members conduct themselves.

I imagine I may get a good chance to find out at our next conference, which is tentatively set to take place in August of next year. I have been vice president since August of last year, and admittedly I’m still not entirely sure what I should do with the role. I do know that I have big shoes to fill, and should begin making more of an effort to do so, perhaps just by taking inspiration from what I got to see of Kosior’s actions.

In any event, I look forward to serving for as long as it is deemed acceptable and of use by and among others. I agree with the president though that we need at some point to get some new blood, so that we keep things, people, and ideas fresh. So to the rest of you in our little Norrie community, keep your ears open for when slots do open up. We will need individuals who represent a number of different backgrounds. Till then though, here’s to another five years!