Holidays tell us to remember that we love our significant others, family, country, and higher power of choice. But very few exist (well ok putting aside the murky historical underpinnings of it, which I know that one can hardly put aside but stay with me!) to remind us to just, be, thankful.

As the day arrived, sunny and quite warm for late November, I reflected that I had much to be thankful for. I’ve never had a year quite like this, where I have such a powerful, stable relationship with another human being. Where I find the courage to begin the process of stepping out and getting to where I really want to be in life. Where I am inspired to take on what may seem a frivolous but possibly life-changing books challenge, (I’m up to 47 by the way). Where, even my sports team, the Carolina Panthers (NFL) are having a truly historic year at 12-0 already, smashing records and expectations along the way. It’s just been amazing.

I found myself in the unusual position of not going to my own family’s place for a gathering, as everyone decided at the last minute to just sort of do their own thing. This did make me a bit sad, as Thanksgiving is maybe the only day where we really get together anymore, but then it also presented me with a great opportunity to start a new tradition with the woman, whatever that ends up looking like in the end.

This year, we went to Fayetteville and ate with her folks instead. I was a bit nervous about this, mainly because of my hearing issues. But, I found it surprisingly easy to just slip right into conversation and never really felt left out of anything. It probably helped that only immediate family was there, but I was prepared to cope with a larger gathering if it had been so.

Mostly all I have to do anyway is get my eat on! Sometimes I choose not to have turkey, as I so did this year. Instead, I sucked down some delicious ham, mac and cheese, dressing (as we call it in the South, an NPR story said most everyone else calls it stuffing but so what), green beans, a roll, and some cranberry sauce. Outside of her father, I’m the only one who eats that last. I grew up enjoying it at our feasts, though. One thing I’ve learned is that it is very important that I not overeat, as doing so can make me feel faint and awful for the rest of the day. So I give myself just enough.

Then they fired up the TV in the little downstairs room where the tables were so we could catch the Panthers game. They of course feasted on the Cowboys, ultimately winning 33-14. Her folks, again other than her dad, aren’t really into sports either, but they did have fun trying to ascertain what was going on in that game. We hit the road for my hometown of Charlotte midway through the second quarter, so that I could get in some valued time with my cousin.

Not much happened during our stint in the Queen City, but it was definitely welcome relaxation. My cousin and I did watch the nightcap between the Green Bay Packers and the Chicago Bears, then stayed up chatting till nearly 1 AM. We also got more time chillin’ while his wife and my girlfriend went for a shopping run that afternoon. We closed the day with carry-out meals from a Greek-style restaurant called Shomars, where I got, as always, their Callabash shrimp. I only regret that I wasn’t able to finish all of mine then nor on Saturday, before we deemed it had been exposed to the open air too long for safe consumption.

So in the end, I was pretty well satisfied with the balanced weekend I had. I got to get more comfortable with her folks and to enjoy some time with mine. It doesn’t get much better than that, right?

p>How was your Thanksgiving, if you still remember. Do you eat anything that you think most people don’t? Finally, what has been the thing about which you have been most thankful this year.

Ok it’s official, I have been accepted to the James L Knight School of Communication Master of Arts program at Queens University of Charlotte. Classes begin on January 11, 2016. So after a three-year hiatus, I am back to give this grad school thing another shot!

How do I feel? Well at the moment, kind of overwhelmed but really excited.

Overwhelmed for the predictable reasons: the bureaucratic slog must now kick into high gear. I have to complete a FAFSA, and do a couple of other things that are in the welcome email I got from my program manager. I expected this, of course, but am trying to think of how I might get some assistance without driving the same two or three people a bit nutty. Those folks have been tremendously helpful to me throughout this process, though. I am figuring it out on my own to the extent that I can, but some things are just not as readily accessible or require actions; such as printing out, signing and rescanning forms; that are beyond my purview.

On the other hand, I am thrilled because this time I have a much more well thought out plan for how I will approach this attempt, including my overall goals and the research that is needed to achieve them. In a nutshell, I am aiming to take disability into the mass, probably noncommercial media (NPR) perhaps through some sort of blog/social media content. I have my steps for getting there more laid out in my personal statement, and intend to use that document throughout as a guide for helping me along in deciding on project topics and how to approach papers/presentations.

The goal is a big one, and it makes me nervous since it comes so close to what I’ve dreamed of doing all of my life. Well ok, I’ve actually seriously contemplated work with NPR since 2001, when one of my professors had us look up and listen to an excellent series on Black Codes. I’ve been an addict ever since, and am now able to name many of the reporters, guess which stories will be covered by whom, and the like to an amusing degree. As the concept of blogging has really taken off and this network in particular has embraced it in its many different forms, I am ever more able to see a way in.

I think it’s hardest to really go after what you want, because the perceived disappointment of not getting there is highest then. But we only live once, and there comes a time when one must take that step onto the invisible staircase and hope for the best, or risk remaining on a comfortable, if not nearly as desired, level. Taking this chance just involves realizing that it might not work out exactly as intended, and to have come up with alternatives that at least approximate the hoped for outcomes. I do have these, and will develop them as I matriculate through the program. I hope that maybe I and my crazy belief that I can have better will serve as inspiration to someone else to try to move beyond that place where they are stuck as well, and that whatever happens, I am able to resume my attempts to improve things for persons with disabilities, just in my more natural forum of the written word rather than as a counselor. Here’s to the beginning of my next journey. Stay tuned to see where I end up! And as always, thank you for your support.

Ok, I kind of failed at completing the Blindness Awareness articles by the end of October. But, there were a couple of pretty good reasons for this.

First, I got leveled by another nasty cold, my third of 2015 and the second to directly impact a weekend to which I had been very much looking forward. That’s right, even as drippy, coughy, and otherwise unpleasantly sick as I was, I still attended the North Carolina State Fair with my girlfriend, cousin, his wife, and agaggle of others, known to me and unknown.

I was most amazed by the size of the crowds. It felt like walking through New York City at times, because we almost had to bull our way through people in order to get anywhere. I think the day we attended, the last Saturday, saw attendance of upwards of 140,000 folks. This was probably because the weather was fantastic, amazing really given that the month of October began and ended with significant stretches of rainfall. Undoubtedly, the fair’s organizers got lucky with timing.

I hadn’t realized until this year, probably because I live under a rock or something, that not all state fairs take place at the same time. According to that great arbiter of truth, Wikipedia, ours has run almost continually from 1853, with stoppages only during the Civil War, mid 20’s, and World War 2, and always takes place during mid October. Interesting.

Lacking taste as I was, I found it difficult to really indulge in the strange food that most makes up a fair going experience. I did struggle through a bite of a Krispy Kreme Burger though, and I probably won’t be lining up to order that thing again. I might like it if the donut were plain or something, but the sweetness therein was so overpowering that I could barely taste the meat. It just… didn’t work.

So that and being consumed by watching my Carolina Panthers, 6-0! win a late game over the Philadelphia Eagles took me out of my weekend writing rhythm. Am I forgiven?

What I was mostly going to talk about is how blind individuals are able to take in a world that is largely built for sighted people. This is especially relevant in environments such as museums, as I note in this 2013 post . I wonder if that place in Philadelphia still exists, and would perhaps like to go and visit it one day.

The ability to take in art exhibits is considered one of the most important ways to enrich and give depth to our human existence, as it is a form of media that has really been in use ever since people learned to sketch on cave walls. I’m glad that more are realizing the usefulness of making sure this form can be accessed in a way that is meaningful to those who cannot see it as well, as I also got to observe in 2008, when I took a fun trip to Denver to help a grad student do a research project about said access. For me, this involved having my hand banged against the side of a fish tank by feeding sting rays, listening to a described video in the iMax theater, and feeling giant sculptures of such things as horses in gallop. It was cool.

With regards to entertainment, the most notable challenge comes when trying to perceive visual content such as movies and television shows. Fortunately, these barriers are also being addressed, if slowly and inconsistently, with the wider introduction of audio description. Read more detail about what that is and why we want it in this old entry . I am happy to say that Netflix has begun rolling out more and more titles with AD available, and so we hold out hope that more mainstream companies will follow suit in the future.

What we lack in the visual media, we are thought by most to have an overabundance of when it comes to musical ability. Heck, probably for a long time our best hope at employment was to entertain others either by singing or playing the piano. I enjoy singing, certainly, but because of my hearing deficits I will never do so professionally. Still few things can kill time and lift my mood as well as belting out some fun tunes.

And I guess that wraps up what was no doubt a nebulous attempt by me to give a well-rounded picture of what it is like to be a blind person in today’s society. Much has been gained, but there is and probably will always be much to do to level that playing field and give us a true chance to succeed to the fullest of our abilities.

I’ll start this post off with a couple of links. First, check out an interview that the author of Adventures In Low Vision conducted with me, a Quick Q&A, as she calls it. It was fun.

Second, if you haven’t, read last year’s post for National White Cane Safety Day, which was October 15th.
A Big Piece of Freedom
I suppose most of that content is still relevant.

And now on to today’s main topic: the second E, Employment. I’m probably not the only one who used to dream that I would have some kind of meaningful job that paid enough for me to get by and met all of my other needs as well. What that would look like, I wasn’t certain. Counselor? Teacher? (I did dabble in education for a really short time when starting my undergraduate career, but only had to think to come to my senses with regards to the feasibility of that for me.) Perhaps some kind of writing?

As so many seem to, I completed my Bachelor’s in Psychology with a minor in Communication studies, figuring that I could somehow go into that particular field. And then, life happened.

My main concern once I gained the age of adulthood, which in my case wasn’t really till I turned 23 or so, was wanting to be independent. To that end, I scoured the Internet, worked with Job Placement Specialists employed by the North Carolina Division of Services for the Blind, and took other actions to try and find something that would fit my many and varied interests. Sadly though, I encountered discrimination and an unwillingness by most to accept the idea that though my eyeballs may not function, I could still bring a lot to any organization.

Finally, as so many of us are driven to do, I took a position with one of the National Industries for the Blind (NIB) -affiliated agencies. These and the NISH, once known as the National Industries for the Severely Handicapped but no longer so known as that terminology is outdated, were some of the first organizations to allow persons with disabilities to do something other than perhaps just sitting at home all day.

Aside from a first attempt at graduate school that lasted from August of 2009 till December of 2011 (at UNC, MS in Rehabilitation Counseling and Psychology), I have been within the realm of the NIB for all of my working career. I was from 2003 till 09 at Lions Services of Charlotte, and since January of 2013 I have been at Durham’s LC Industries.

While I long to do something more fulfilling someday, I also acknowledge that I am fortunate to be working at all. According to a page via AFB Career Connect, which has what they admit is older information by now but which I’d be surprised if it has changed much, only about 30% of legally blind individuals of working age are employed. The percentage jumps to 45 if you have enough vision to be classified as not legally blind but are still of low vision. I do not know for certain, but would venture to say that a majority of us work in sheltered, noncompetitive positions such as what I do now. The really good stuff is so rare for us that I probably know many of the people who are out working within the regular workforce.

With that said though, I think we are in a more hopeful time than ever. The technology exists that can connect us in such a way that most people on the other side of the screen don’t notice a difference. With the proper training, we can reach a level that in some cases exceeds that of our sighted peers. For instance, some blind folks are able to read documents really quickly by setting their screen-reader of choice to 100%, and to actually understand the material as it flies by. I’ll admit that I’m not one of that club, but I can certainly take it in quickly either via synthetic speech or in Braille with my electronic display.

To that last part, the ability to read Braille, it does seem to be a major component for those who do get better positions. It is not the only indicator, and also is not strictly required for one to experience success, as some have demonstrated. But just as with a sighted person, being able to actually read the material oneself rather than simply perceiving it in audio helps with spelling and comprehension. It also would be of use if in, say, a call center. Should I become a writer, as I hope to someday, I plan to acquire an even better Braille display than I currently possess.

The era of the sheltered workshop has been since approximately 1935, about 80 years. For various reasons, these agencies are likely to be phased out over the coming years. It is my ardent hope then that all who are able and wish to seek competitive, rewarding work will find a more welcoming environment over the next 80 years. This is helped by constantly working to change perceptions of what we can do in the eyes of the public, which I would say is my main mission.

Hello, and welcome to Blindness Awareness Month! What exactly this means I confess to not entirely knowing. But I suppose the main idea is to continue to make society aware of the fact that we’re here, we function, and despite little or no use of our eyes, we are still quite capable of accomplishing great things. So in my clunky way, I will try to highlight how I and some of my peers have done this over the years. Of course, some things will be very much related to other posts I’ve already created, but well that’s part of the point right?

First, I’ve had an idea that came to me because someone asked that I feature their page on my blog. I’ve created a Disability-related Resources and Favorite Blogs page that I will modify as time goes on. Please take a look and tell me what you think.

So my idea for this month is to write about the Four E’s: education, employment, enrichment, and entertainment. I hope something I say is useful.

In my previous post about this subject entitled ADA 25: Blind Learning , I wrote a lot about blind people’s changing ability to receive an equal education within the public school system, as opposed to specific schools for the blind. I think in this piece, I will take a more in-depth look at how my own education, both book-related and physical, unfolded against the backdrop of the 1980’s and 1990’s with its burgeoning technology.

It’s funny: in my earliest days, I hadn’t even known there was a significant difference between me and the majority of my classmates. This despite the fact that I would usually leave the classroom everyday for some one-on-one instruction with what we called a Resource teacher, but who is now more often called a Teacher of the Visually Impaired (TVI). (It surprises me that this terminology is still used actually, as many don’t prefer to be called visually impaired even if they are low-vision, but there you have it.)

In this classroom, as probably mentioned in my prior post about the subject, there were all of our special equipment for learning and using Braille, as well as printing out our work.

RELATED: Wanna take a gander at learning some Braille? Check out this post.

The first, we’ll just go with TVI for the sake of simplicity here, was one of those mean, old-time folks who would whack hands with paddle if need be. This usually came about if I continued to insist that “I can’t!” as I so often did in those days.

It’s gonna be a crazy world for you out there,” she said. “So it is very important that you believe yourself able to do whatever you set your mind to! So I’m gonna do whatever I have to in order to get that through your thick head.”

I still love that woman for her dedication, and for what she managed to teach me. I saw her much later in life, once I’d gotten into university, and she was so proud of and happy for me..

A bit of a sidenote/amusing anecdote: once she recorded herself asking me how many legs a cat has. I was in the third grade, and we had a cat as a family pet, so why I responded with “16” will always be beyond me. Mutant cats?

In about the fourth grade, she gave way to another TVI who oversaw my progress pretty much for the remaining time I spent in the Charlotte Mecklenburg (NC) school system. She had a softer, but no less effective way of guiding me along my learning journey. Rather than whack my hand for expressions of doubt, she rewarded positive occurrences, sometimes with crackers or lunches, or my favorite cakes from the cafeteria. Hey, I’m easy to please! It was at about this time, in conjunction with my fantastic fourth and fifth-grade teachers, that I really began to take off.

That’s the mental aspect of my education. Important, of course, but not the only thing. There was also the mastery of body, through exercise and activity. As with everyone else, I achieved this through Physical Education (P.E) classes.

I have distinct memories of these classes, especially in elementary school. We were gifted an incredible individual named Mr. Beattie who insisted that we participate in classes to the fullest extent possible. I remember him attempting to teach me how to properly shoot a basketball.

“Ok, take the ball and position your hands like this.” He then placed my fingers as indicated. “Now, shoot it up and forward!”

I shot it up, all right. Then boing! Right off of my dome. “ouch!”

“No, I said forward!” he said, a touch of laughter in his voice.

Up, up, and down to meet dome again. *sigh* this seems to be a hopeless cause.

“Ok,” he said, taking the ball from my hand and sliding me back a bit. “I want you to try shooting it into the trash can.”

Oh yeah, I understood that concept easily enough. Still, when I attempted to aim at the basket, boing! On accident, I did manage to flick my wrists just so a couple of times and drop it through the hoop, but I didn’t fully grasp the idea until my uncle got my cousin and me a diminutive goal with small ball that we could feel.

“Ah, now I got it!” (My cousin and I wiled away many hours, and nearly decapitated each other, playing games on that goal. So much fun).

When it came to football and baseball, Mr. Beattie also helped us to be involved in these sports. In football, I would snap it to the quarterback, pushing it backward between my legs. I didn’t really understand the purpose of this activity, but did it faithfully anyway.

In baseball, I would hit the ball. I can’t remember exactly, but I guess it was mounted to a tee. Then I’d run the bases with a sighted guide. Well? It’s better than just sitting on the sidelines entirely, I’d say.

So thanks to the strong-minded adults in my life, I was and have always been both physically and mentally active. As with so many things, it worries me a bit that not only blind kids, but kids in general are experiencing less of the former. And I only hope that there are still some caring instructors out there who will take their place in a child’s memories as mine have, by giving freely of their time and energy to move them forward.

And so we have arrived at that time of year, when it can rain relentlessly over a significant amount of time. I saw a stat on Twitter that suggested that if we get rain tomorrow, which is in the forecast, it will set an all-time record for consecutive days of precipitation here in the Triangle. Oh oh. This means that, aside from a walk to pay rent yesterday and a brief period out today, I’ve been confined to these four walls.

And what have I been up to? Well, pondering how to begin seriously laying the course for my next moves in life. It is looking increasingly like I will make a real attempt to enter graduate school, this time in Communications as I probably should have last time. I did a search for Master’s programs, and found one administered entirely online by Queens University of Charlotte, in my hometown. Of course given that it is in fact online, it would hardly matter if the program were on the other side of the country.

I’ve begun having conversations with someone who states her position as Program Manager there, and am starting the process of gathering the documentation I need. She has given me a helpful outline that I will attempt to stick to that should help me finish applying well in advance of the next sessions which get underway in January.

This program puts a lot of emphasis on blogging/social media, networking, understanding audience, and using this knowledge to assist a given organization. This is exactly what I’m looking for.

I do wonder about how the dynamics work when these types of classes are all online. But well the truth these days is that even so-called “on-campus” classes are at least partially done via the Internet. It’s just the new and preeminent paradigm. And of course technology has advanced so much over the last few years that I doubt there’s a whole lot of difference anyway.

If I start now, I suppose I’d finish around the end of 2017. While so doing, I hope to find internship opportunities and make other sorts of connections that will lead me to possible career options once I have concluded.

I know that the biggest challenge will be paying for it. I’m certain that the Division of Services for the Blind will not cover it this time, so I’ll likely have to take out student loans and hope for the best. Still, it’s just time to jumpstart my life and make some stuff happen. I plan to augment the skills I have already gained by taking HTML and WordPress courses with the Cisco Academy for the Vision Impaired a couple of years ago.

And that’s a bit of what I’ve had going on of late. Other than that, I just sprawled on my couch or sat near the computer, reading two different books, as has been the case throughout my 50-book, 50-author challenge: A Walk in the Woods, by Bill Bryson; and Shadows over Paradise, by Isabel Wolff. I like them both for their deep descriptions of nature, but am especially liking the second with its talk of life on tropical Java as experienced by Dutch colonialists just prior to World War 2. An Englishwoman is charged with encapsulating the much older Dutch woman’s story in order to sort of ghost-write her memoir, and as far as I can tell, the story will become a lot bleaker as the Japanese take over and make everyone subservient. It will be an interesting read though, because I’ll get to see a lot of the technique involved in the craft of “Ghosting,” which I may well try to do someday.

So there you have it, a sort of stream-of-consciousness post in order to maintain my burgeoning streak of at least one per week. I suspect that things are really about to get crazy, so stay tuned for the fun.

I still recall the first day I pulled that piece of metal from its wrapping in a box that had been delivered to me by a friend. I’d chosen to have it shipped to her house, because there was some possibility it would arrive after I had relocated to PineBluff, North Carolina. I held it up, clicked the home button 3 times, and heard “VoiceOver On. My life changed.

That day was September 21, 2012, and this week makes three years since it happened. In the previous two years’ retrospectives, I ranked my 12 favorite iPhone apps. This year though, I have decided that I wouldn’t do that again, primarily because now my uses are so many and varied that I’m not even sure I could come up with just twelve. I thought therefore that I would talk a bit about what this technology seems to be doing to us.

I absolutely love my iPhone, and in many ways you’ll have to pry it from my cold, dead hands in order to stop me from using it. I can’t think of a single device that has so been able to encapsulate everything I want with it, from entertainment to news, sports and time-passing games. And of course there’s interacting with people from all over the world via text message, Facebook, and Twitter.

However, we must be quite careful not to lose sight of maintaining real human connection. A couple of podcasts, including the Ted Radio Hour, have had recent discussions that suggest that we are headed for a point where we experience two realities: one in the “real world” and another inside of our little screens. One of the Ted speakers even stated that this second reality would be something like our chance to explore an Outer Space that we have invented.

Interesting metaphor, and one that Ernest Cline takes to extreme in his book Ready Player One. There, he takes us to a dystopian world in 2045, where all of our current energy resources are nearly gone, causing even basic travel to be virtually impossible. So people spend most of their time online in what is termed The Oasis, a “reality” created by an eccentric, 1980’s-obsessed billionaire.

To fully immerse oneself in this universe, one wears haptic clothing and sits in a chair that allows for the experience of actual movement. Players can blast off in Space ships and visit other planets, which are really just coded by different individuals. They can also pick up items, play games and other media, and talk with each other in real time.

The game’s creator has it set up so that, on his death, there will be a contest for a vast sum of money for the person who can navigate through the entire game and locate his Easter egg. This sets regular people against large business interests, culminating in an exciting battle near the end.

Ultimately, the main characters discover that reality, even with all of its issues, is more desirable than existing in a fashion that allows for little to no encounters of real people, places, and things. As I hear stories about teen-agers constantly texting even as they ride to school with their parents, and thus in many respects not even having the basic skills to successfully navigate a job interview, my feelings of unease increase.

I know I’m not immune to these issues either. Heck, I don’t know if I could survive my workday without pulling out that piece of electronic crack at any break and lunch period I can. But I had an experience that showed me why I must force myself to scale back, at least a bit when I’d accidentally forgotten my external charger at home, and all of the juice ran out by 11:30. I met a kind individual in my section who had suddenly lost her sight, and thus had many questions for me (perhaps ironically) on how to use the iPhone. I guess my reputation preceeds me, regarding my supposed proficiency with this technology. She has told some in the front office, as I guess they have a training area on-site, that they should consider hiring me. We also now have regular conversations, at least to the extent that I can hear over the roar of machinery and banging that never really cease there.

So I guess my takeaway here is to remember that there are folks within easy vicinity of you, so remember to pull those eyes away from screen, or in my case, hands from display or ears from big headset, long enough to take it all in. After all, some of our best stuff comes when we allow the brain to sit and work its magic, unimpeded by stimulation. Wait, I’ll post more as soon as I respond to that notification I just heard.

I did a project during my undergraduate studies on the difficulties of getting underrepresented groups, and particularly African American males, to go in for preventative medical care. These have occurred for many reasons, but one of the most important is a lack of insurance, and the subsequent inability to form strong relationships with primary care providers.

This has been the case for me, until now. Probably the best thing my current employer provides is a good insurance plan that allows, well requires, me to get at least one physical a year. For the years 2013 and 2014, this passed without incident. During both of those, I also had different doctors.

Then I crossed that 35 line. It’s a point in life where more rigorous testing becomes necessary, because well that’s when all of the crazy stuff seems to begin. My doctor from last year had already informed me that this physical would involve more, and that close examination would continue from here on.

Then a new person came in this April, one who really takes the time to sit down, talk through things with me, and take extensive notes. She even picked up on unspoken subtleties that led to more questions, uncovering further information that I might not have otherwise inquired about. That shows how truly effective medicine uses components of counseling such as empathy and the ability to propel a previously stalled conversation forward.

So I had gone this April for the annual. There, it was determined that my blood pressure was entering borderline territory, with the top number hovering between 140-150, and the bottom number around 80-90. The only other thing I had checked at that particular meeting was cholesterol, which seemed to be fine.

“Ok, we’re not gonna do this once a year thing anymore,” she said. “I want you back in three months.”

Ideally, I would have scheduled that next appointment right after my return from the Norrie Disease Association’s conference in August. But, I knew I would be tired and probably a bit stressed then, thus potentially fudging the BP numbers a bit. I did attempt to schedule the follow-up right at the beginning of September, but she was booked by that point until this past Tuesday. So that is when I had to go.

This time, they administered two tests: because she wanted to try and counter whatever I might have been feeling due to the crazy transportation issues I had in getting there (for some reason, the bus didn’t come at all!) The numbers did fluctuate, but both times they were still in that borderline range.

“Ok, next I want you to obtain a blood pressure cuff and test yourself at different periods of the day,” she said: “because there can be a lot of variability. We’ll take this final step and I’ll see you back in a month, then we can decide on whether to proceed with medication.”

Now, there are some cuffs that can talk, which is a good thing as I can then take the readings and log them myself. But those cost like $80. I’m going to see if there is a way I can get my hands on one for at least cheaper in the coming week.

In the meantime, I am already trying to modify my eating/sleeping habits such that perhaps things will improve a bit. Man is this hard! Many of these habits, including ingesting sugary and/or salty foods, just help me cope with adult life. But I believe that only a few days away from them, or at least cutting them back significantly, will demonstrate that they are not truly necessary for me to function.

The greatest challenge I face is finding stuff to replace my largely microwavable diet. I need things I can prepare relatively easily, but that have a higher health value. I can cook a little better than I usually do,, and have been contemplating some sort of grocery list that relies a lot less on processed platters.

While finding out that I have this issue now does make me a bit nervous, I suppose it is better to know while I can try and do something about it, and not once some truly horrible condition occurs. That is why I say to, well so many of us, including people with disabilities, cultural minorities and the like, that it is important that we allow ourselves to be checked out periodically. Because knowledge is power.

Note: I’m experimenting with posting pics, so this thing may still not be oriented correctly. Feel free to let me know!

Hello! I come to you one year older and a little bit more relaxed. It’s been since the conference a month ago that I last made a substantive post, but mostly because I’ve been plodding along. As usually happens when I attend an event of that magnitude, the post-script can be a little tough. I always come back and do some serious reflecting on why I might still be here, spinning my wheels, attempting to make my way through this madness we call adulthood.

A few things have happened though that finally have me feeling a little more optimistic. First, I was invited to join, and happily accepted membership to, the NC Blogger Network. I hadn’t even known such a network existed, but it aims to build community among local writers throughout the state through online forums and sharing of/encouragement on work. I am enjoying it thus far, and starting to feel that tug to pull my stuff up to that next level. It’ll hopefully begin to happen as things unfold for me and I continue to find my voice.

Second, and I know I often talk about it because it’s so powerfully uplifting to me, is the support of my wonderful girlfriend. One who has listened to me, probably having to gnash her teeth occasionally in the process, as I have tried to find some of these answers. She decided that she would end my too-long drought from the ocean (just over 13 years since toes last hit sand,) and take me on a relaxing birthday trip to the beach.

We left Durham on Friday somewhere around 1. The weather concerned me, as it was due to rain for most of our short time there. But aside from a quick, heavy storm that pounded on us as we entered Wilmington, things were pretty much ok.

As usual when traveling, I had fun watching the towns pass with my GPS and listening to her explanations of them. Once we clear Raleigh here in our great state, things are pretty rural all the way until we reach Wilmington at the eastern of the very long Interstate 40, which runs all the way from California. Also, we drop a good 300+ feet to reach sea level. We cross an odd-feeling bridge with metallic grates over the Inter-costal Waterway to enter Wrightsville Beach, then another bridge spanning Greenville Sound. Finally we arrive at our destination, the seven-story Holiday Inn Resort that sits, somewhat precariously she says, right up against the Atlantic.

“There were probably some houses at the end of the road here, but they likely fell into the ocean,” she said. “Looks like this hotel will too, eventually.”

We had a fifth-floor oceanfront, from which you could hear everything down there as if you were close to it. We spent a good stretch of time on Saturday, during which time we had gotten rained out of the water, on that balcony listening to a rousing game of volleyball as the waves ramped up. They even put up a yellow flag at the lifeguard station, which we guessed meant that the current was getting to be a bit dangerous so folks should use caution.

Not that we ever went anywhere near that far out. We took pleasure just in sticking our toes in that lukewarm comfort, and allowing the “itchy” (she laughed at me about that characterization all weekend,) sand and salt ride up our legs. The initial shock of getting slapped by a wave was cold though, causing us to nearly stumble back out.

She saw surfers bobbing some distance offshore, and a few people swimming. There were also other couples sprawling on the beach and taking in the elements as we were. Not a whole lot else in the way of development and/or people, though.

“That’s my favorite thing about this place,” she said. “If you come here, you’re just here for the beach.” Hear hear!

I did feel that somehow the beach and its salty nature made me unnaturally thirsty, even more so than hungry. But of course, there was plenty to satisfy our tastes. We made a point of eating a little of everything, and consciously trying to avoid our usual choice of burgers, burgers, burgers.

On Friday night, we ate in the hotel’s restaurant: Oceans Café. (I know, real creative name). But hey, I loved the food! I had Fish and Chips, which is just what you expect, fried fish and fries. They were fileted strips that I could dip in tartar sauce, and each was delicious. The fries were also good; covered in a seasoned batter that one doesn’t often encounter. To the extent that I ate anything “healthy,” it would be the mixed vegetables of squash, green beans flavored by almonds, and a piece or two of carrots.

On Saturday morning, she had intended to take me to a famous local diner/bakery in Wilmington called Sweet N Savory for their one-of-a-kind grits. However, by the time we dragged ourselves out of the depths of a much-needed sleep, we had missed breakfast. The place was still packed to the gills though, at somewhere near 11 AM.

Here, I opted for a Hawaii 5-0 Pita Wrap, which contained ham, pineapples, cheese, and some other vegetable fillings. They gave me two of them, along with homemade potato chips that I dipped in ranch to add moisture and flavor. Actually, all of the bread in this place is made in-house. Both of the items I chose here were also great.

Our next two options were chains: Texas Roadhouse on Saturday night and Cracker Barrel on Sunday morning. But as long as I got to eat in one local establishment, I was happy. Plus, I think these are two of the best chain restaurants if I had to give my opinion.

In Texas, I chose as I usually do here the country-fried chicken dinner with mashed potatoes and green beans. Only I didn’t realize there was a difference between white and brown gravy. I went with White, which our server said was her favorite, but my girlfriend told me she preferred brown. I still liked it, and will have to pay attention when I consume that other color to see if I can distinguish the flavor.

And really that was about the substance of that trip. But, it worked out just fine for me. My main desire was to relax hard, hear that mighty roar, and get my eat on. All three of those were accomplished. I managed to read some of my books as well, thus not losing significant pace on my 50 book 50 author challenge. I guess I’ll find out the extent to which this has helped me to ease up when I return to work tomorrow.

So happy birthday to me! 36 years down and counting. I hope year 37 will be more than I can imagine, and salute all other September babies. More fun when it happens!

Ah, the much-delayed Friday entry! But, I’ve been running like crazy ever since my return, as so often seems to be the case the wrapping up of the conference seems to have heralded the beginning of a new era for me. Let’s see if we can still remotely capture the essence of that Friday with any kind of accuracy, shal we?

Fri, August 14

Up early, surprisingly very little drag after sleeping like a log the night before. I read from 4 till approximately 6, then zip through shower, inhaling a blueberry muffin, and other morning tos and fros as we prepare for the day.

We get over to the hospital, first going through that cold lobby, then being relieved that the floor on which the conference is hosted isn’t similarly chilled. She and I are pretty much the only ones there when we arrive, but this suits me well. Better early than late any day.

She notes the interesting view from the large windows that look out toward an apartment building just across the way from the hospital. A woman gathers her pillow, covers, and the like from a bed she has placed on the balcony, where she apparently slept. We surmise that this may have been due to not having air conditioning inside of her apartment. Not a lot of northerners have it, or at least they hadn’t. I think that’s starting to change these days.

She also sees a man step from his place onto a balcony a floor below and make quick gestures with his hands, as if saying a quick prayer. He doesn’t stay out much longer than that, though.

Finally, others start to trickle in. As with my other times attending the conference, I am fitted with a hearing loop. Only this time, I never quite get it to work well, as it is staticky and difficult to discern what is coming through the microphone. I wear it for the first half of the day, then just give up.

And now, it’s my turn to get nervous! I sit there with my palms becoming more and more sweaty as Dr. Kathie Sims goes through the preliminaries, introducting everyone to the facilities and telling us how things will basically work. It is just after 8:30, and in a few short minutes, I will give a speech as President of the Norrie Disease Association that I haven’t even really practiced.

Dr. Sims introduces me, but first we have a surprise for her. She is about to retire from her post at the hospital, and so we give her a gift card to a local restaurant called Ester, and a plaque engraved with the words: “In appreciation of your years of research, work and dedication to the Norrie Disease community.” It is one of those rare moments where I wish I could see facial expressions, so that I could gauge how she reacts to this gift. I bungle it a bit, but ah well, I’m learning on my feet!

All things considered, the rest of the speech goes pretty well also. I give brief intros of the rest of our board: Jean, (kind of an advice-giver who has plenty of previous board experience to back it up) Cara the treasurer (Brains of the operation,) Paula and Rikki (Co-membership chairs and both fierce advocates,) Jan, (our long-serving secretary who must somehow hear through all manner of phone noises, including people washing dishes (that part made people laugh)), and of course myself. I then give a nod to our recently resigned members, Bruce the former president, and Mary, the person who largely made me feel comfortable at the conference.

I then outline our future vision of where to take the NDA, noting primarily that the conferences, while good, can be costly both to the organization and those who wish to attend. To try and remedy this, or at least add a new angle, we will look at making smaller online presentations that can be available to whomever wishes to attend them.

I wrap up with a tribute to the late Mike Kosior, whom I’m sure I’ve referred to earlier in this blog. He sadly passed just prior to the 2012 conference, and I remember him for his belief in me, willingness to help me try and locate other employment, and the nickname he gave me via Email: Chief, which I think suggests that he foresaw me taking such a position.

Our next speaker, the keynote Jonathan Mosen, gives a speech entitled The Gratest Gift (Text which is inspirational and meant to lend hope particularly to parents of those with Norrie. If you haven’t, I’d recommend reading it. In it, he spoke of growing up as a blind person in New Zealand, and having to overcome some pretty significant odds to achieve all that he has. We appreciate his willingness to contribute in this way.

Next, after a small break during which some ate fruits provided by the association, we listened to presentations on visual perception from Dr. Xin Ye and hearing loss research by Dr. Nathan Edge. Both of these were packed with information, much of it above my head unfortunately. I do know that Ye talked some about the origin of Norrie, in the NDP gene, how the retina works, which receptors facilitate connections that can lead to cell death, and a very detailed description of proteins that either enhance or inhibit gene expression. I think one of her group’s most important findings is that vascular and visual problems result largely from the disruption of a certain signal, and in some cases if that signal is restored during a small window of time, some functioning can be maintained. I do note that my interpretation of what she said could be very wrong, so if you are really interested, I’d recommend listening to her talk (Conference recordings to be posted soon, will link up).

Edge talks about much the same things, but as they are related to hearing loss. He notes that things such as antibiotics, aging, epigenetic factors, and other diseases lead to hearing loss. Along with the vascular issues caused by Norrie, the hearing cells in the cochlea can also be damaged by processes that are not yet entirely understood. He notes that possibly within four years, treatments could begin to be tested that may re-create the lost hair cells and thus restore natural hearing. Probably good reason for me to hold off on a cochlear implant if I can. How I long for natural hearing!

At this point, we are released for much-needed sustenance. I grab a boxed lunch of ham and cheese sandwich, a pear, chips, cookie, and sprite (because I want to try and wake back up), and she and I decide to hike over to the hotel room for a bit. I always need a bit of time to de-compress, so very much appreciate this. We scarf it down, and head back over for the next round.

At 12:30, we hear from Dr. Colburn on more hearing loss issues. He is the one with whom I spoke on Thursday, and so he leads off his talk by talking about the “social cocktail effect” we addressed at the party. His talk focused on how the two ears work together, especially based on how sounds travel different paths when going into either ear. Also, everyone’s ear shape is specific to the individual, which also effects how things are picked up in an environment. He continues with a detailed discussion about how neurons fire and respond to specific frequencies. He wraps back around to talk about the challenge of sorting through a conversation that is bouncing around everywhere, my number 1 social difficulty, and how it may be corrected by synchronizing the neurons again, an ability that we lose with increased hearing impairment.

The day’s final presentation was a panel consisting of myself, Rikki Chaplin, and Jonathan Mosen. The recording is such that it is difficult to make out what was said, but we mainly just answer questions from parents and other audience members regarding when we first became aware of blindness, socialization, sleep challenges, and issues involving dating and romance. If you would like me to go into further detail on any of these, let me know in comments. I think the panel was well received though, as it usually seems to be.

Then we break into our little groups, mine being men with Norrie. Along were the affore-mentioned panelists, my cousin Calvin, Jean, and a sixteen-year-old. The mother of an individual with intellectual disability, Maryann and Jamie, also chose to join us. We pretty much spend the entire time talking about living with hearing loss, not surprisingly. It is always nice to get in this real networking time.

And with that, the first full day of the conference concludes. My girlfriend and I make our way out of the building and into the pleasant warmth of Boston, stretching our muscles for the first time in eight hours. She has decided to have dinner at a small pizzeria called Felcaro, from which we will get pizzas at conference lunch the next day. The room has only about four tables for sitting, and only another couple is present as we eat. It is also sweltering inside, as is common for such establishments. We bother order cheeseburger subs, but only get a single order of fries to split. Given the size of the sandwiches, a foot long and packed with stuff, we could probably have split that as well. We enjoy consuming though as we chatter about our thoughts on the first day.

Back in the room, I stretch out on the bed and listen to sports as she makes phone calls. We stay this way until about 10 PM, at which time we finally call it a night.