#FridayReads The Untold Story of the Talking Book

Whenever I type that title, I keep wanting to put “audiobook” instead. This is because I find the term “Talking book” strange. Makes it sound as if the printed pages are actually speaking, which ok I guess in a way they are.

I am reading a nonfiction piece, a result of Matthew Rubery’s research project called The Untold Story of the Talking Book. And as one who has grown up immersed in this media, I love learning about the ins and outs of how it truly came to be.

RELATED: Listen to an interview with the author couched in that Blind Bargains Podcast episode.

I have only just begun reading, but I already know it’s course. He notes Edison’s invention of the phonograph and the savvy advertising that slowly convinced people of its utility, how audiobooks really came to life as a way to service newly blinded soldiers after World War I?, their slow but continuous growth with all of its attendant controversies, and concerns over Audible, the granddaddy of audiobook companies, taking everything over. In between, there lies the content of what could be a college-level course. I am intrigued to continue grasping the main way that reading, especially initially and even counting into the smartphone era, has become accessible to me.

The funny thing I suppose is the way I am in fact consuming this book. I read the introduction via a digital audio file downloaded from BARD, the Braille and Audio Reading Download service provided by the National Library Service for the Blind and Physically Handicapped. I eventually decided though that I was gaining nothing from having it narrated, and switched to a Braille copy obtained through Bookshare and consumed on the phone with my refreshable 40-cell display. (As an aside, I have noticed a spiking interest in my silly Braille post made in late 2015, so I hope you all are having fun with that!)

I have for a long time now enjoyed taking in books through multiple modalities. Each suits me at its time. Audio is great for winding down at bedtime, and when I was at the workshop, snatching a few minutes of a thriller or great memoir to fortify me during the breaks as I prepared to enter another segment of the day. Braille works best when I’m outside and wish to listen to and absorb my environment as I read, or if on a long road trip as it can make time speed by. I know too that they stimulate the brain in slightly different, but equally interesting, ways. So I would definitely say that each has its place.

Given Rubery’s primary focus on audio and the resultant transformations it has wrought though, I want to mostly stick with that vein. Let’s talk about narrators. (Readers? Voice actors? There is even disagreement about what to call them). First, I am in agreement that one who does not do this well can detract from the story. But then “doing it well” is probably subjective. As Rubery states, I have some favorites who will cause me to grab a book even if I have no idea what it is about. And there are others whom I will avoid at all costs, either finding it in Braille or locating another audio version. One of the major areas that is changing as audiobooks gain in popularity is how they are read. They are becoming a little less truer to the printed page, which coincidentally I noticed was even the case with this title as it has been rendered for BARD audiences.

The main way this plays out is in dramatic, or multicast, narration. I actually thoroughly enjoy this kind of performance for what it is, whether one can call it “real reading” or not. I will often take in these books from Audible or its competitor if it looks like something I can get into.

So as you can see with this title, there is more to an audiobook than meets the eye. (Ear? Ah, that’s too easy.) It is a fascinating topic, and one that has been addressed to a surprisingly small degree. I would recommend it to all of the audiophiles out there who, like me, look forward to putting head on pillow, setting the sleep timer, and being whisked off to a new world. After all, this thing we love started somewhere.

A Small Comparison of NC Transit Systems @GoTriangle and @CatsRideTransit

Ah, what’s a man’s life without a little adventure? Especially mine, and after I had been (relatively) motionless for much of the preceding month.

As I vaguely alluded to in the previous entry, I am making moves to shore up affordable and hopefully usable transportation in the city of Charlotte. A place this size can be a bit challenging to navigate, and even more so when you live towards its periphery. But, after much consultation of Google Maps, I located a Charlotte Area Transit System (Cats) park and ride within easy Uber distance of my current residence, and as I needed both to venture to the transportation center to acquire my paratransit ID and to visit Queens University so I could work on a couple of things there, I opted to chance the bus.

Naturally, I found myself drawing comparisons to that I experienced aboard the GoTriangle buses that took me to and from work for just over four years in the (of course) much smaller Durham/RTP area. Note that I am not saying either has issues per se, just that they function a bit differently from one another.

First, the similarities: on boarding the 53X, an express bus that would whisk me to uptown Charlotte (it’s our downtown but we’re just quirky like that) I notice that they too have switched to the more comfortable upholstery that most of the GoTriangle buses now have. I guess that most have gone in this direction, eschewing the bumpy bucket-type seats of my childhood. This definitely makes for a lot less soreness for road-weary commuters.

I can think of few other similarities, interestingly. Their differences were more notable. First, I suppose Cats does not have onboard WiFi. I guess this is to be expected in a larger fleet, and it is not a big deal. Second, all of the buses I boarded still have stairs one must climb to board, rather than the flat surface you step onto when entering a GoTriangle bus. I think they still lower them though. One nice difference I noted: Cats has its automated system set to call out all of the stops, stating which locations each serves as well. This means I can follow along without use of my GPS unit for the most part, insomuch as I can hear it, which was less doable on the return commutes when the A/C was set to full blast.

And hearing is in fact the greatest challenge I face when riding the fixed-route system, not surprisingly. This is why I signed up for Special Transportation Service (STS) and will see how much use I am able to get out of them. I know though that, being as we are outside of their guaranteed 3/4 of a mile from a stop, there will probably be times when I cannot get a ride through them and might want to resort to the regular route. I would say I actually got to my points relatively well, but as one might expect there were a few, insignificant glitches.

The main issue was communicating to the driver where I wished to disembark. I could tell them the stops as Google had told me, but this did not always get the desired result. Actually, the first driver on the Express route took me all the way to the transit center, and the second had no issues notifying me when I had arrived at Queens. The third told me, I think correctly, that I could catch the return Express route at the transit Center rather than doing so on 4th Street as the map suggested, but relented and let me off at the latter location. This was good, because there is a little bit of a walk from where the locals arrive to the Express routes at that very loud facility.

In the end though, I certainly was able to reach all of my intended destinations without notable difficulties. As I more fully come to understand the system, and especially the route to Queens I should have an easier time communicating exactly where I am going, but these things come in time. I am one who does not and will never mind the learning.

The Charlotte Life: Settling In

Every day, I adjust a little more. It’s small things, like figuring out a sensible, and slowly cheaper and cheaper, way to get where I need to be. Becoming used to basking in the rocker out front for a while as I read my Braille display, which at the rate I’m going I will completely lose shortly, then shifting to the low metal table with two chairs to break out the Mac for some work. It’s adapting to the relatively late dinner schedule in here, meaning I learn to consume such that I am not too hungry once mealtime arrives. It’s discovering the many entertaining Netflix series that, along with the aforementioned reading, help pass long summer days that feel like a second dose of childhood.

At some undefinable point, these little changes continue until suddenly, I have made myself a temporary home. This is my longest stint in the Queen City since eight years ago, and it amazes me how different things are, and yet how the same some other things remain. Certainly my tech, and let’s be truthful, especially my iPhone are aiding in the acceptance of this new period. I can pretty much remain in my comfortable room/nook up here in the nice house and stay out of the other folks’ hair unless they are inclined for conversation. I think that this makes the situation more tenable.

Not that I am silly enough to just remain in here all of the time, of course. I am, in fact, looking for some kind of work. If all goes as I would like, I will find a position that moves me forward. To that end, I am working with a career counselor at Queens who will help me clean up my resume and may give me some ideas on what I can pursue. I have also come across an interesting opportunity on Twitter about which I will have to inquire tomorrow. See? Social media can be useful sometimes. I will definitely hit this hard for the next little while, and see if something can come to fruition.

And even as all of that unfolds, along with my working to complete grad school, the wedding preparations begin to ramp up. The main thing that will happen in relatively quick succession is acquisition of my passport, so that we can leave the country immediately after the ceremony. We figure once that document is gotten, after dealing with the bureaucracy required to do it, we may as well notch some other countries in our belt someday soon as well. So we’ll see on that. At the moment though, it’s just going to be trying to get everything funded and to not go crazy in the midst of all of this change! It’s incredibly exciting because we so rarely get the chance in life to really reset and try to get things more right, but it is also nerve-racking because my decisions and choices are tied into the fate of someone else. I just pray everyday for the wisdom to make the best calls possible.

So here I am, firmly into what I’m calling my middle transition: Chapter XI as it were. I believe that today was one of the happiest I’ve had since abandoning my Durham residence (well other than spending time with the lady in Williamsburg of course) and that things are really looking up. (I have learned from the past not to say “can only look up,” because that’s daring stuff to slide sideways, but optimistic, I’m gonna be optimistic!) Till next time, I bid you adieu. But I invite you to check out this great interview turned blog post that BookShare did with me (thank you Laura for that). Heck, that thing told me more about what I’m trying to do now than I could probably have articulated. Amazing. Back soon.

Williamsburg, Jamestown, and Busch Gardens

Ah ba-humbug. My initial idea had been to accompany this post with photos, but as you might figure it is difficult for me to keep reams of them straight. I will learn to do this someday! But first I have to come up with some kind of labeling scheme so that I can be certain of what I am posting. In the meantime though, I guess I’ll stick with what I know and write, write, write. So enjoy a (relatively) quick summary of our entertaining and educational trip to Williamsburg Virginia.

We set sail for (ah ok drove to, although that might be an apt metaphor given the amount of rain we encountered on the way) this historic Virginia town on Wednesday at 12 PM, a couple hours later than intended but after some much-needed sleep. Mostly things were sunny, but when we did enter those two or three downpours I stayed quiet so that she could concentrate on keeping us whole. We popped out of the other end of the tube around 3:30, arriving at the fairly decent Courtyard by Marriott, Busch Gardens Area located at 470 McLaws Circle and within a mile of that iconic theme park. You’ll notice that of late I’ve been staying in Marriott properties, because I’m trying to stack up rewards points. They say I’m only 9 nights away from Silver status, but if I understand correctly you only get one night for every three.

Bags down and a little more rested, we schlepped off through the horse-poop-filled streets of colonial Williamsburg. Unfortunately by this time, all of the houses and such were closed, but just smelling the smells was enough to conjure up a feeling of what life might have been like there. And I got firsthand experience of what life could have been like if I were to be punished for being bad, as she good-naturedly placed my head inside of a stockade, (guillotine?) and took a hilarious photo. This device forces you to sit on your knees and makes the head nearly immobile. It’s brutality, made real. That bit of silliness done, we strolled by houses noticing a prominent name of Bruton (this guy had a Parrish church and a house apparently).

That trip out was relatively short, though we still logged at least two miles of walking. This added to the three miles or so we’d traversed the previous day leaving and returning to the car for the fireworks display (which was also fun as we snagged good seats that gave me an unusual sound experience). Anyhow, needless to say we got our exercise in this week.

Off to Cracker Barrel for dinner, where our inexperienced server neglected to provide the biscuits we had requested. I was ok though, as I greedily consumed my meatloaf, Mac and cheese, mashed potatoes, real lemonade, and later, a piece of delicious chocolate cake.

After that kind of start, it was surprising that we actually rose earlier than expected for the trip to Jamestown Settlement, a fascinating replica of the first established colony there. Afraid of both the rain and crowds, we arrived as it opened at 9. I think this contributed significantly to my great time learning there.

As we left the cool of the visitor center for the nearly dripping moisture beyond, I immediately felt a separation from modernity. The first thing we did was enter what the Tap Tap See app says is a Tiki tent? I hadn’t known what they were called, but the huts where the Powahatan Indians would have lived. I really couldn’t help wondering how one lives like that, but at the same time that sort of spartan existence kind of appeals to me. The natives did little inside of those huts but sleep and stay warm, even preparing food outside at private fire pits. Even so, they were so tiny that I, and most people I would imagine, had to duck to enter and exit, and could barely stand up inside.

But then there was the most interesting part, where we were able to board replicas of the ships that sailed from England. Constantine, the largest of the three, would have had 71 persons onboard, which I find mind-boggling! After walking around two of the decks of that and the other two vessels, I know that if I were to try and survive the four-month crossing from England to the colonies I would probably be half dead on arrival. I mean what did they eat? I am reading a book set in Jamestown now, a fictional tale called Dark Enough To See The Stars of a Jamestown Sky by Connie Lapallo, wherein the author states that it is based on the true story of her ancestors’ arrival there. So I anticipate getting a sense of just those sorts of questions.

After making our stumbling way up from those depths, we sauntered over to a table full of what would then have been classed as medical supplies, but actually resembled a toolbox). The woman at that exhibit showed me the crude splint, forceps, and other what would now be considered dangerous items used to operate on people, and especially soldiers, during that time. It was quite interesting.

And after a tour of the mostly inaccessible indoor gallery, she and I had a random stranger snap us standing in front of a fountain as some kid inadvertently intervened. The sound of rushing water was pleasant, if not enticing in those temperatures.

The rest of our day in town mainly consisted of a respite in the hotel from 1 to 3 after enjoying burgers from Sonic, as we did on our Charleston trip. Then off we went to Busch Garden.

Happily for us, the suggested rain showers did not come at all. But the humidity was such that, as previously noted, we still sweat buckets anyway. We also rode in a bucket of a ride that flung us around a bit, one that reminded me of the Wild Bull at Carowinds as it rocked us back and forth aggressively, a giant swing, and the one roller coaster I could get her on. Our final ride was the mach Tower, analogous to Carowinds’ Dropzone, where we rise way up and are flung to the ground. We then retreated into a German restaurant where some sort of live band was playing for the few patrons inside. Then after a boat ride called Cruising the Rhine, she said she needed to go ahead and call it a day. This was clear as we ambled about, trying to find a way out of that monstrosity but getting turned around a time or two. It is an amazing place, divided into countries such as Italy, France and Germany where those cultures are highlighted. I hope to visit again someday.

And that about sums up Williamsburg, in probably the longest entry I have ever written. We had pondered eating in a local spot called The Whaling Company, but a quick look at the prices changed that. They did have some pretty good sounding seafood though. So it was back to our trusty Cracker Barrel, where this time I had Chicken-fried Chicken with the same sides. Hey, you can never go wrong with that! Back with the good stuff whenever the next adventure happens.

My Life, Chapter XI

(Because adding Roman numerals gives it a certain gravitas).


I: Being A Baby In Brook Hill. II: The Florence Avenue Blues. III: Birch Crest Family House. IV: The Town Home Down Home Experience. V: Livin’ Large on Hyde Park. VI: Off To The Pines. VII: Over The Bluff. VIII: Getting “Royal” on Beatties Ford. IX: The Estes Park Avalanche. X: Duke-in’ in Dern Durham. XI: Back to the QC, A Cozy Spot. XII: Marrying and “Cary-ing.

Ha! I really could use that as a template for my life memoir, at least as it has gone. Each of those titles represents a relocation for me, to all of my non-university residences held for at least six months. I had to specify those criteria, because if not then things become confusing and difficult to sort.

So, the last two chapters have yet to be written, of course, but they have begun. Chapter ten was brought to a rather abrupt end as the truck bearing my furniture, nearly popping a tire, eased onto the freeway and slight sloshes of rain blew in as if off of an ocean. The hour was 12:30 AM, and both I and the driver, my always hard-working uncle, were famished

“Ok, let’s stop here,” he said as we scrambled out and walked hopefully up to a small-town Wendy’s in a truck stop-type area. But, it was a no-go.

Then, as tired as he was, he said “ok we’re gonna try one more fast-food joint, then it’s the Waffle House. They’re always open!”

And with that, he reluctantly eased into the McDonald’s drive-through line, where I acquired my first Big Mac in many years. I agreed with his assessment that their burgers just don’t hold a candle to really any other establishment, despite the fact that their fries are actually superior.

A hair-raising cruise into the Queen City, with the last miles being seen through a fog of daydreams according to my uncle, found me, by 3:30 in the morning back at the Hyde Park residence of Chapter Five. Because he basically maintains a bachelor pad in there, the room was warm and the covers a bit dusty. But by that point, nothing else mattered but sweet sweet sleep. While I wouldn’t say I had done nearly the amount of work he had hoisting all of my (former) furniture and cleaning all of the detritus of years spent in a place by someone more concentrated on other things than, well ok keeping spotless?, I had taken out tons of trash and helped the morning mover with my tables. So numbness spread mercifully across me, and I sank into hilarious dreams with contents I of course can not recall in any great detail.

And so here we go. With that cliff-hanger ending, I plunge into the area unknown with little idea of what to expect next. Right now though, I am sitting in (Chapter Eleven), at a desk with the kind of writing chair I had during (Chapter Eight) and feeling the inspiration flow through me again. Thus far I have eaten at the delicious House of Prayer cafeteria, a church located on Beatties Ford that is the only restaurant I know serving what I call “REAL” baked macaroni and cheese. I have also enjoyed chatting with my cousin for only the second time all year, and luxuriating in the expansiveness of this place. I am definitely feeling the love, and comfort as I have a nice room to myself as well.

So do enjoy as my story continues to unfold with unforeseen plot twists, and probably the climax. (Wait, maybe not yet on that last, because the end usually follows that in rapid succession). But, you get my drift. More pages and chapters coming soon!

On Furry Friends

As my transition enters its final phases, I’ve sat out on this little thing we call a porch and pondered the meaning of life, often while reading a good book or otherwise occupied. As I’ve done so, someone apparently decided he (or she, who really knows?) would like to meet me and I guess maybe feel a bit less alone.

I think you can see my new companion here, blind folks, it’s a cat apparently with his head missing (this is why they will never hire me as a photographer)

Anyhow, this has been happening all week. At first, he would saunter up to me and just brush against my legs, then bounce off to other parts of the porch. Then, he began stopping and sometimes sitting at either of my feet. In the last couple of days, he has attempted to put his paws on my legs, as if asking to be helped into my lap. But then I get the sense he knows he is probably not clean enough to do this, so he will retract the paws and likely sadly slink away.

I can’t help wondering if he was also a victim of this apartment complex’s rapid rent increase, in that maybe someone threw him out? Maybe they, as am I, moved in with some other family member who wouldn’t allow pets and had to make a wrenching choice. I say this, because I would find it surprising to be so rapidly addressed, and apparently trusted, by a stray with little experience dealing with humanity. That cat acted as if it were quite close to someone, in fact. Something of a reminder that these kinds of policy shifts can effect other lifeforms as well.

If I were staying here though, I might actually consider keeping him, knowing that I would have to take him to the vet and have all of that stuff checked and get him cleaned up real good. As it is, I hope maybe someone does find him soon and take care of him.

I don’t know what’s in their minds, of course, but I have always felt like animals have a deep connection to me that forms as soon as I am seen. They have played some role in nearly every major era of my life, as I would guess is the case for most.

Because we were the poor kids we were, our first four kitties came from a cat that had been stolen from my grandma’s neighborhood and transported clear across town. Named Tiger because she looked a lot like one, she gave birth to Ginger, Salt, Pepper, and Cheetah. The first three were seasonings, and the last was just fast! Ginger was the only one to survive that rough and tumble existence for any length of time, living with us until we left that house and began our next chapter in a town home around my teen-age years.

We’d had a dog then named Shannon, but because she hadn’t really been trained and lived out back, I didn’t get to develop any kind of relationship with her. I was afraid of dogs actually, until 2004 when I ventured to Spain and met a shaggy Old English Sheepdog whose only desire was to lick one to death and try to knock them over with his bulk. Then in 05, my cousin acquired a terrier to whom I became very close, cementing my belief that I was far more a dog person than a cat person. I mean dogs understand so much more, it seems. My sister’s little dog got close to me during my brief time in PineBluff in 2012, and now my fiance’s dog enjoys having me around. She seems to know the rule that she should only stop by to say hi when the lady has gotten up to do something else, m which amuses me.

But I am sometimes reminded that cats, aloofness for which they are known and all, can be just as intelligent and friendly. I guess really their personalities can vary as much as any person’s, right? This is what we humans can forget, that these animals do have feelings and probably even realize when they have been neglected. If my story above is true and that one was tossed out by someone, I wish they could have managed to at least turn it in to some sort of agency. I know there are shelters that are set up to handle such things. I also know, of course, that if someone is under stress about all other elements of their life, like where they will eat or stay, this just might not occur to them.

So that’s just a bit of the strangeness that represents the beginning of my summer. I actually hope it’s not a bad omen, as I’ve heard before that cats can be drawn to people when they have some kind of serious condition of which they may not even be aware. But in the end, its presence has had a calming effect during a tumultuous time of my life. In any event, he gives me something other than grad school to write about.

A Farewell to Dern Durham

That’s a phrase jokingly applied to this area by some, because of the way it sounds when you actually pronounce the city’s name. I’ve heard some foreigners call it “Dur-ham” stressing each part of the word. When I was a kid, I thought it was Durm, because that’s how we all said it. I’ve seen the Bull City’s image improve, having recently become known nationally for its foodie culture but still sadly seeing more violence than one might like. But then again, that’s probably the case for any fast-growing urban area, right?

1540 (plus or minus, don’t break out the calculator on me! Haha). Buy the time I depart this apartment on June 24 in the year of our Lord 2017, that will be nearly the number of days I will have resided herein. Outside of my time in Charlotte, I probably have not remained for so long in one place; not even Southern Pines as I lived there prior to college for only just over three years. So naturally this wonderful local community, in which I found a place to be a regular (granted it’s a chain but still,) met neighbors who always took care of me, and even found ways to be entertained while going to work has come to feel like home.

Of course, life does and will continue to change, and I very much welcome this as it forces me to grow. The coming change will represent a middle transition, as I’ve taken to calling it, between the last vestiges of bachelorhood and marital bliss, the latter now set to begin in January/February. During this period, I will reside with my cousin and his wife back in the Queen City, relocating there for the first time in almost eight years. I am actually excited about this, primarily because I am attending Queens University of Charlotte online anyway and being closer to that facility will help me as I conduct research for the Capstone, their term for the Master’s project. What that research will be has yet to be determined, but I have some ideas.

That excitement is tinged a bit though by the fact that I am essentially being forced into this move, due to the apartment issues I have chronicled in two previous entries. I am fortunate enough to have somewhere to go at least, but I know some who are going to really be struggling. So one of my new advocacy challenges will be trying to learn about affordable housing, how it can be saved (yeah right in this society) or at least kept remotely in check. I won’t forget about y’all!

The cumulative stress of this pending life shift is causing sleep to be near nonexistent, as I have been since Sunday operating on fumes. I had already decided a couple of weeks ago that this would be the last week with my current employer.
RELATED Job Days No. 5
Which I am now glad about as I can use that in-between time to recover a bit from this horrible insomnia and to try and make progress on the practice research project we are now doing in my current class. I also plan to start making inquiries about ways to generate income once I relocate, mainly by visiting the university’s career center. Hey, I’m paying for that service so why not!

And, not much else. The typical thing is happening as I get ready to leave the community; I am meeting all sorts of fascinating individuals whom I would have enjoyed talking to if they had dared to speak earlier. But this is ok I guess, it is paradoxically a sign that the time to move on has very definitely come. I guess only time will tell what awaits around the bend.

I know I hadn’t posted as often as I would like (the goal is once a week), but not surprisingly as classes gear up the posts fall off. But I know I already have a couple of fun pieces that should be coming up, including a trip to a new destination that I will tell you about after it occurs. More later.

Rare On The Road with the EveryLife Foundation for Rare Diseases

I think I’m in this group pic? With my T on

There are few events in one’s life that can be called “Life-changing,” and often the use of this term is overblown at best. Probably those that I could say qualify are high school graduation, completion of undergraduate study, and the attending of the 2009 conference of the Norrie Disease Association. Not excluding especially personal markers of course, such as my relationship and coming marriage, but I think I’m speaking more of professional encounters here.

In my role as president of the Norrie Disease Association, I have always been on the outlook for possible opportunities to expand our reach. These days, such chances are most often found via social media networks like Twitter. In that forum, I discovered the EveryLife Foundation for Rare Diseases, which works to change public policy to enhance outcomes for persons with rare diseases through political and other advocacy. They tend to have more of a focus on research/medical issues than the NDA does, the latter being primarily a support group, but as I discovered in attending their first Rare On The Road meeting, much of the information they supply can be of good use.

So first the backstory. As soon as I saw that this conference would take place in Atlanta, I scrambled onto my apps, found great air and hotel deals, and decided I would go. I guess I am one who looks for signs of the “rightness” of a thing, and the fact that I got low prices to travel and lodge at the Atlanta Marriott Marquis, along with a $5 coupon from Lyft to use them for airport service like a day before I needed it were good omens indeed.

Not surprisingly, once I arrived at that mammoth hotel Friday night, I began to wonder about the sanity of staying there. I hustled up to my 27th-floor room, unpacked, and… got lost in the hall for perhaps 15 minutes trying to find the elevator! But y’all, it ain’t a blind folks party till something like that happens. And a blind folks party don’t stop. It all ended well though, because I quickly discovered on return how I could more easily navigate that labyrinth with a giant rail that almost looks like its purpose is to guide, even though it may not be. I had gone down to the restaurant for a slightly overpriced but pretty good burger, fries, lemonade, and chocolate cake, consumed as people whooped to the NBA playoff game on the TV.

Once I had retreated to my room, I snatched a little time to enjoy the luxurious surroundings before putting myself down. I awoke that Saturday morning, checked out, and made my way to the Loudermilk Conference Center about a half mile away where the event was to be hosted.

Always with these things, I wonder how the hosts will treat me. Immediately on entering, the registrant greeted me and served me a breakfast of blueberry muffin, mixed fruit, and coffee. Then I pretty much remained at that table all day, speaking largely with a woman named Lisa Raman, who introduced all of the speakers as well as leading off with a nice speech about her own journey to this sort of work through engaging with her son who has a rare syndrome. She was really nice, being willing to help me empty my bladder when that coffee, some water and juice poured right through me.

Of course a primary function of most conferences is networking. And while I do not yet know exactly how my newfound connections will play out, let’s just say there’s some real potential there. I got to talk wit two people who are now working with me to make some things happen with social media and in expanding our knowledge on rare disease issues.

As for the conference itself, probably the most helpful thing to me was talking with other organizational leaders and discovering that our challenges are quite similar. These include sustaining membership, finding ways to keep people motivated within the organization, and increasing fund-raising/awareness.

As is common with such events the entirety of it is difficult to capture. But here are my key takeaways. First, story construction for persons or organizations is important. They noted that stories have three main elements, especially as relates to advocating for funding or other action from politicians and the like: an issue/problem, proposed solution, and call to action. We were then told to create elevator pitches that address these areas, a bigger challenge than one might think. SIDENOTE: It was cool to have my Braille display in that situation, as I could type my response into the iPhone and read it back. The other attendees thought this was neat.

The second main takeaway is that we should contact our senators and representatives and let them know of our personal issue. They spoke a lot about the coming healthcare changes, and of course I acknowledge that you have your own views on these, but I agree that whatever our side, we need to be aware of what’s going on and how it might affect us. I know in many NDA member’s case, loss of certain supports would make it harder to get the early intervention and therapies that can improve quality of life for children with Norrie. So I will indeed reach out to my senator(s) for what it’s worth.

This was the essence of what was covered in the conference, but the fun wasn’t over! My second networking contact occurred because she had overheard me saying I had stayed in the Marriott, and allowed me to share an Uber car with her to retrieve my bag. So one never knows when these things might happen. I got the business card and successfully scanned it with the KNFB Reader app on my phone. (This was a trip definitely made more possible by that little device, for sure). Bag gotten, I survived another harried ride to the airport with a driver who said he had glaucoma but could still see well enough (um…,) booked it to the gate through the gargantuan Atlanta airport after another needed potty break, and came on home. It was quite a fun day and weekend, with results yet to be fully realized.

On Rites of Passage: 20 Years Since High School and Apartment Follow-up

I was listening to a recent episode of the Spark CBC podcast in which someone noted the importance of nature, especially when one finds oneself at a major life juncture. Go for a walk in the forest, find a nice, calming trail, or my favorite, visit the ocean. Ironically after the apartment thing met its conclusion, which I will get to later in the post, I was already due to head to the beach with the fiancé. The story claimed that, along with just feeling less stressed, blood pressure and other physiological indicators moderate as well. I can truly believe it, as the sound and feel of those unusually warm waves put my frazzled mind at ease.

Even as I stand at a new, very big precipice, probably the most important in my entire life, I find myself reflecting on a prior time. It amazes me that 20 years ago this month, I was about to celebrate the completion of a long, fun high school career. The thrill of singing in the chorus, as one of three seniors we also got to perform Rent’s Seasons of Love, so that one will always hold a place in my heart. The wonderful friend who helped me secure a 97 keychains that I still regularly finger whenever I need something to ground me; wrote me a Braille birthday card with her car keys (how cool is that); and ensured that I was able to enjoy senior picnic by offering to take me paddle boat riding on the lake we were visiting. (Ugh, that lake was so full of trash, but that’s beside the point).

And then the proud moment of graduation, May 22?, 23?, how do I not exactly know. I still remember the honor’s rope hanging from my neck, and not even knowing what it meant till right before going to the ceremony as my Aunt told me. The junior martial who escorted me across the stage, saying she was getting teary-eyed thinking of her own approaching graduation. And the too-warm, packed auditorium.

Ah, the memories. I know I know, I lie too aggressively in the past most of the time. In my present though, I have taken another step toward completing my current Master’s degree, having finished a class on Computer-mediated Communication. We did a podcast for that class as well, of which I am a little less proud but also understand that it all is a learning process. It was still fun to create.

And now to the news you’ve all been waiting for. Regarding the apartment outcome, I have been told that I must move on, as they are going to renovate starting June 24th and rents will rise. After thinking about it, I feel that this might not be such a bad move for me as I kind of need to get beyond this neighborhood anyway. But for folks like one of my neighbors, without going too deeply into her personal business, it will cause her significant difficulties as she needs to stay over here and will need family to help her absorb the increased costs. I just want to point this out, because I hope someone continues to see the need for affordable housing, and especially as it applies to older individuals, and those with disabilities who mostly live on fixed income. *sigh* sometimes that part of things truly feels like a losing battle.

Wrapping around to the beginning, I am certain that if I had not immediately schlepped off to the water, I would have felt a lot more panicked about the required changes I must make. That time away allowed me to categorize, prioritize, (are they’re anymore “ize”s?) It’s such an obvious thing, but we city slickers should remember to keep ourselves connected to surroundings. While I am not always afforded the luxury of the ocean, yet, I do usually take a walk or at least sit on my porch and listen to the real tweeters, the birds! Find that something for yourself.

Some pretty exciting stuff coming in future entries, so stay tuned. Till then, breathe deep and revel in pleasant memories.

#FridayReads Someone Knows My Name, by Lawrence Hill

If you were to read the summary presented on the NLS site, you would get the sense that this was all the book was about. By itself, I figured “hmmm, it could be worth the read”. But that description hardly does it justice.

As the story starts, we see the main character (I suppose her name is spelled Aminata Dialo, but that’s where audio can get me in trouble), in London toward the end of her struggle, working with the British to have slavery abolished. But then we almost immediately flash back to her residing in an African village, I think somewhere around present-day Mali, where she and her family practice Islam and farm the land. It takes on a Roots-like feel, as she is snatched, placed aboard a slave ship for the vivid ride over, and taken into a property on St. Helena Island off of the South Carolina coast.

The story continues in this vein, flashing forward to London at the beginning of each major section then back to the time that had been left off, spanning from approximately 1754-1793. She doesn’t experience the outright cruelty that is often seen in such tales, but the psychological trauma along with people’s constant betrayal of her trust are just as bad in the long run. And of course, she continues to dream of returning to Africa, which eventually happens but doesn’t turn out to be all she had hoped either.

Aminata, (called Nina by people in what would become the United States), tells the story in first person, with the amazing rhythm that comes from her initial culture, and even some snippets of the language she spoke. Interestingly, Colleen Delany the NLS narrator who reads this, reads the entire thing in an African accent. I must admit she does pretty good with this, as well as an American could be expected I suppose. Probably her American slave accents were not as good, but one really does not have issues when listening, as the power of the story itself takes you away.

I think the thing that interests me most about this piece is its presentation of a little-known portion of the history of slavery in the US, how Britain and their soon-to-be-Canadian colonists treated these individuals after they had aided in the fight against the American colonies, and even many Africans’ unwillingness to truly assist them. The latter happened in many respects because those coastal folks were being sweetened by the resources provided by their European colonizers.

I don’t know who this Lawrence Hill guy is, but I want to see if he has anymore work. Because this book, 18+ hours of audio, has me so captivated I can hardly put it down, even when I grudgingly have to at work. This woman’s life was amazing, and it does us all well to expand our views of how people lived under and rebelled against that awful institution.