Every other week for the last two months or so, I had had a Life Coaching session. During these, we spoke of many different things, small and large, that I could do to gain some direction as I bumble along. Not surprisingly, one of the most salient of these is to allow myself to step beyond my comfort zone, that oft-used but rarely played-out cliché we all purport to strive for.

“Start small,” she said “and don’t worry so much about looking stupid!”

“Well I often do that anyway without trying,” I pointed out.

“Yeah, but that’s coming from a place of accident, maybe even some fear. I think you should aim to take an intentional act toward just stepping out there, so that you learn that these feelings are mostly in your head”.

So as I have a vested interest in ensuring that all that work and dough were not for naught I humbly accepted the challenge. Then, of course, life takes it from there and I am so instructed on what my task is to be.

I have decided that it is time for me to become more active in my local community, Durham, North Carolina. I will potentially do this by attending City Council Meetings and the like, and just putting my feelers out to understand how the whole political process works. If I am to work with advocacy/nonprofit groups after all, as is becoming increasingly more likely given my seven years with the Norrie Disease Association as of Friday, then it would benefit me tremendously to know how the wheels are greased, so to speak. Social media and even this blog have their place and probably reach a wider variety of individuals than I am even aware, but there is still greater value in showing my face, and in so doing helping some understand that persons with disability are good for more than just being shut away in sheltered settings or worse, inside of their homes or institutions.

So I had the thought that one of the best ways of learning how I might begin this engagement is to read the small town paper, the Durham Herald Sun. This publication aided me in my initial adjustment to the city, because the articles talked about favorite restaurants, highlighted interesting personalities, and quickly gave me a sense of place and home in this fast growing area.

However, they somewhat recently, well maybe a couple years ago or so, decided to implement a registration system in order to access their content online at a subscription fee. I wholeheartedly support this, as I know it takes dollars to get the reporters who do the good work of disseminating information to the community. I have found it quite challenging to sign up though, as they have a visual-only captcha that one must fill in to complete the sign-up (you know the hard-to-read characters meant to keep spammers out?) I also get why this exists, but man does it ever present a pain to those who are blind. Even most audio versions aren’t all that useful to me, given my hearing problems.

Anyhow, I tweeted my difficulty with sign-up to the paper, and one of the reporters who knows me well through this medium replied first asking me to what I referred then suggesting that I scamper down to the paper’s facilities and have someone assist me there. I looked forward to this actually, knowing that it would require me to ask a random person for help once I entered the building.

In many respects, today was a good one on which to do this sort of thing. It was definitely too cold and gllomy for my usual sit-down outside, and so I needed some other kind of post-work stimulation.

And not too surprisingly, the encounter was largely uneventful. Maybe I did look kind of “stupid” as I worked out which doors to enter and how to navigate the halls. I mostly had to keep reminding myself that if someone did speak to me, I should remember to use my indoor voice. This seems easier now that the aids have been adjusted though, and I again have the right perspective on how loud is loud. It amazes me how far that had drifted below normal, as I’ve realized with continued public interaction.

Anyhow, a door popped open and someone told me that I should enter that room and he could help me. In about ten minutes, I was all done and on my way. I had hoped to perhaps meet a reporter there, but no such luck there. After pressing the button below 2 on the elevator and inadvertently setting off the alarm (why are all panels not set up alike!) I stepped back into the frigidity and got ready to head home.

So another challenge two weeks from now? Maybe sooner, who knows. I hope to step them un in intensity over time too, as I continue the hard work of making myself into the person I really want to become. And, how was your Monday?

NDA QUARTERLY
The Newsletter of the Norrie Disease Association
John Miller, President
Contents
**1 Message from The President
**2 Summary of Board Activity
**3 A Call for Membership
**4 Miracle Flight Info
**5 Member Spotlight
**6 Feedback
7 Tributes
**1 Message from The President:
Hello, and welcome to the first edition of what is planned to be a quarterly newsletter, created for and shaped by you. I am your President, having neglected to introduce myself as such. I have served in this capacity for approximately a year and a half, and have been a part of the board as a member since November of 2009, after having been inspired by the first wonderful conference.
I have and continue to work with Rikki Chaplin (Vice President) Mark and Kasey Guzman (webmaster and Secretary respectively), Allison Marchalonis (Treasurer), and a bevy of others who attempt to generate ideas to make this organization more effective. We aim to do this by augmenting in-person conferences with webinars as well as other material that will also enhance our website, social media presence, and mailing list.
As a bit of a personal bio, I am a man with Norrie, from Charlotte, North Carolina. I have total blindness, significant hearing loss and other minor challenges. We have three other individuals with Norrie who serve on the board, as well as some parents of Norrie children, siblings, and those interested in researching the disorder. There could soon be room for you too!
I look forward to continuing as your president, as well as contributing through writing and responding to queries from parents as I have had the pleasure of doing over the years. Thank you, and let us know how we can do better.
–John Miller
**2 Summary of Board Activity
This section is intended to give you a brief overview of some of our most recent decisions and occurrences. I believe that members should have an idea of what is happening, so that they might help shape our positive outcomes.
1. Website:
The NDA is delighted to have the services of Mark Guzman, who is working to update the look and feel of our web portal, obviously one of the most important parts of our public-facing element. Many of the processes should soon be automated, making your life as a member easier, and freeing up our hard-working personnel to be more innovative.
2. Social Media:
We are contemplating how best to represent ourselves in this space. The Yahoo mailing list has existed for the longest time, and certainly remains useful. On Facebook, in addition to the NDA’s official page where announcements are made, we have a page created by an enterprising individual called the Norrie Support Group wherein persons, especially parents it seems, can ask questions, post pictures, even rant when needed. We are a little less certain about the utility of Twitter for the organization, and so are exploring other options that might allow for more accessible chat.
3. Research:
We are happy to have some exciting developments occurring both in hearing loss research and with other Norrie symptoms. It may soon even be possible for others to opt into research studies.
4. Financial:
The Norrie Disease Association is financially stable, though we continue to welcome any support individuals can manage. Our biggest monetary needs arise when we are preparing for conferences, but some of the other endeavors that are in the pipeline will require funding as well.
–John Miller
**3 A Call for Membership
We as an organization exist for and are powered by our members. Member benefits are currently being enhanced, but they will include inside information that we hope will be of significant value to the Norrie community. The first edition of this newsletter is public, but future versions will be made available primarily to NDA members.
To join the organization, please visit our website: http://norriedisease.org/ and click “Join Us.” The fee is currently $15, and your presence will help us to expand the services we offer. The subsequent section is a good example of the linkages we hope to provide to the Norrie community.
–John Miller
4 Miracle Flight Information
Here at the NDA we’ve been in touch with Miracle Flights, a non-profit organization. This group offers flights, both domestic and international, to individuals in need of financial assistance to visit doctors and specialists for out of town procedures. Companions of the patient may also qualify for roundtrip tickets as well. There are restrictions based on annual income, however these restrictions can sometimes be overlooked if financial hardship can be proven.
We know that a few of our Norrie families travel to see certain specialists out of town and this organization may be able to help ease the financial hardship of travel. Miracle Flights also provides flights for service dogs and their owners to receive training or simply to retrieve the service dog. If you have any questions about all that this group has to offer you can contact Miracle Flights at www.miracleflights.org or call them directly at 702-261-0494 or toll free at 1-800-359-1711.
–Kasey Guzman
**5 Member Spotlight
In this section a different individual (be they a person with Norrie, family member, friend, or one with interest in the disorder) will be highlighted. I thought it appropriate to have our first spotlight introduce the current NDA Vice President: Rikki Chaplin. His words follow.
I was born totally blind and acquired hearing loss beginning in my mid 20’s. I now have a moderate to severe hearing impairment. My ability to speak and write has become more important to me as I have come to accept my hearing loss. I have worked as a professional musician, and I hold a Bachelor of Social Work from the university of Queensland, Australia. I still greatly enjoy music and hope to be able to work professionally again soon.
I am currently employed by Blind Citizens Australia as an Advocacy and Policy Officer. It is through this work that I have come to understand more about my purpose as a person with Norrie disease. My partner has two brothers with Norrie disease. they have the added challenges of intellectual impairment and autism, and cannot freely articulate what their wants or needs are, or when they feel uncomfortable, frustrated or are in pain. Through being involved in advocacy, and through coming to know my partner’s brothers, I have realized why it is that I was given the ability to speak and write as a person with norrie disease. My responsibility is to help people who cannot articulate what they experience to be understood by others who are in a position to ensure that their quality of life is the best it can possibly be. I feel privileged to have been given the gift of writing and speaking, so that my peers who cannot express themselves, are given a voice. We must never assume that because a person cannot communicate, and may not score well on a traditional IQ test, they have nothing of importance to say. I feel that as a person with the words, both written and aural, it is my responsibility to provide the voice that others are missing, so that they are heard, understood, and respected as people with equal rights and valuable perspectives to bring us.
**6 Feedback
In this section, we will solicit, display, and respond to feedback from our members. This is the first edition, so no feedback is forthcoming yet. Please submit your ideas and/or questions to joinnda@gmail.com for consideration.
7 Tributes
We of the Norrie Disease Association are saddened to report the loss of some significant members. Of course everyone is valued, but we especially wanted to pay tribute to these three individuals whose lives touched us all in some way. Other board members have assisted in writing these tributes, and will be credited at the end of each section.

It was with great sadness that we lost one of our former NDA board members. Mary Guevarra passed away in March, 2016. She had joined the yahoo group in 2000 and then joined the NDA Board shortly after its conception. She was an inspiration to our whole community with her words of wisdom, friendship and hard work for the Norrie Community. Mary came from a long line of men with ND: 2 uncles, 2 brothers, 5 cousins, 4 nephews and her dear son Ramon. Mary was born in the Philippines and lived in Las Vegas at the time of her death. She was involved with our community as much as she could up to the time of her passing. Mary helped to plan our 1st International conference in 2009. In the Philippines she taught grade school, high school and college students. When she came to the United States to seek better services for Ramon she taught Junior High School for 8 years. Then she worked with the National Accreditation Commission from 1997-2008. She was also the Program Director for the Visually Impaired Program in Harrisburg, Illinois. Mary also worked closely with the Bureau of the Blind and their grants programs for the elderly who were blind. Mary is dearly missed by the NDA and the many people whose lives she touched.
–Jan Stepanczuk

During the 2009 Conference, I had the distinguished honor and privilege of meeting a humble, yet witty man who possessed such a hysterical sense of humor that it was nearly impossible to resist the temptation of his contagious vibes. From Canada, Jack Markman provided ample advice and input relating to various topics that parents and those affected by the condition sought answers to including seizures, cochlear implants, hearing aids, and many more. Jack was determined to make an impact on society by whatever means necessary, and one of my favorite sayings that I will always cherish that Jack ended every post created was “fight the good fight.” Numerous times in my life I felt discouraged, but just reading that quote inspired me to continue in search of my niche and purpose. Unfortunately, with his death, the list died with him, though his legacy of never giving up serves as a constant reminder of what we as the Norrie Disease Association strive for: to promote and educate those impacted, to investigate potential cures by writing grants which usher in world renowned scientists, and to advocate for those who otherwise cannot speak for themselves.
–Nathan Bullock
Rafi Cohen was sixty, and had resided in Israel. His presence was instrumental during the last two conferences: one in person wherein he contributed useful questions that helped lead discussions regarding Norrie men and childbearing, and the other in which he participated in a cochlear implant panel via Skype. He had been married, with two daughters, and working as an IT specialist in his adopted home of Israel. His birthplace was Turkey, but he relocated as a teen-ager. He and his willingness to help anyone with needed information that he possessed will be missed.
–Rikki Chaplin and John Miller

Have you ever sat on the couch, absorbing media (electronic or written) and suddenly realized you were drifting away? When reflecting on this, you find it nearly impossible to pinpoint exactly when “chill” became “sleep,” but are jarred awake by some unexpected event? Well this is the best analogy I can think of to explain how I felt, really stil feel, whenever adjustments to my hearing aids are made: I don’t need them, I hear just fine OH WOW! I hadn’t known how quiet the sound had become.

Of course there are the normal issues. As I’ve noted many times, the aids tend to slowly clog and drop out of service, such that I find myself returning to my audiologist for emergency intervention. Each time this occurs,I vow to not wait until hearing levels are urgently low, except that I inevitably get too caught up in life to pick up on the subtleties until I’m back at that point again.

So we had an issue with this last week. Thankfully, it hadn’t gotten to the point where I couldn’t hear anything at all and I wanted to ensure that it didn’t! I went in, got the tubes replaced, and put them back in. Turned the aids on, and UGH! still clogged sound. What on earth is going on here.

Other tests were conducted, and the aids were found to be functioning as well as they had usually done. “I think” the audiologist informed me “that we’re long overdue for another hearing test”.

I groaned loud enough for everyone in the building to hear. It’s a torture chamber, because trying to dig the beeps out of the static and to understand “airplane!” “baseball” and at a whisper “oatmeal,” “oatmeal,” makes my head pound and leaves me feeling quite incompetent. Nevertheless, I relent and allow the appointment to be scheduled for today.

First, I should note that, as a huge relief to me, the biggest extent of my problem hearing last week was weather-related. I am usually aware of this, however most times the cloggage, or feeling of fullness as the medical professionals put it, is accompanied by a high-pitched ring. This time it was just as if someone had shoved a wad of cotton deep inside, and no changing of the volume would help me. But by the next day, I could hear “normally” whatever that means.

I slunked through the week, a sense of dread building as I approached the DAY OF DOOM. Work today was to be only a halfday, and it probably amounted to the longest half day in the whole history of me. I spend most of the morning kind of cold, unoccupied as the product was a bit backed up, and with far too much time to ponder things.

Finally, I make my way to the clinic, a good hour and a half early. I sit in the wait room trying, somewhat unsuccessfully, to read. I also overhear an older woman, whom the receptionist asks the innocuous question of “How are you?” engage her in a nearly ten minute long conversation about travel and jewelry. I’m guessing they both enjoyed it, but in any event I admired the willingness to get in touch with someone at a human level, a virtue in short supply these days.

At the appointed time of 1:30, I hear the executioner, uh doctor, call “Mr. Miller?” I meet her newest graduate student trainee, (they almost always have students involved because they’re university-affiliated), and make my way to the back. I ask if she can attach electrodes to my head and read brainwaves. “We could, but that would involve digging through and making sense of a lot of data”. “Well how about just marking me as Profoundly Deaf and calling it done?” “Well, that wouldn’t help me do anything about the aids”. I puff out and give in, slumping into the chair of the soundproof booth.

I think I did OK on the left side, mostly. I’d sometimes guess, raising my hand randomly and saying something like “o” that maybe they would take for the correct word, whatever it had been. On the right side, well I may as well forget it. I barely know when it has started, let alone really make out any of the words. An odd thing is I can feel a vibration on my head that tells me, at least occasionally, when the right side has beeped. Is that cheating? I don’t know.

“Ok, Mr. Miller” they say as debriefing begins we can definitely reprogram those aids so they’re doing for you what you need. There’s a cost with that though and you’re an adult, so you can decide if you want it”. She says that the aids still fall within a power level that works for me, so I opt at least at this time not to continue acquiring new ones. That still may change, though.

Anyone who has had his or her aids reprogrammed maybe knows about the carrot recording they use for calibration. I can probably remember most of it, hmmm.

“The carrot is a vegetable and a member of the parsley family. It is grown all over the world, in gardens and in the wild in fields.” I think maybe he says something else, but ah well. It always amuses me.

It takes her 30 minutes to complete this calibration, and when I plug them back in I immediately note that it now sounds like they’re brand new again. I have been out and about, and can go into restaurants and other establishments without having to make significant adjustments to listen to the cashier. It was also so easy to talk to my driver as I came back, even though I heard the thwack thwack thwacking of tires against the road again. It reminds me of when this process started nearly 11 years ago, and it’s pretty cool. I am concerned about how work will feel, with the roar of machinery that will probably cause me to turn them nearly off. I will also have to readapt to the feeling of disastrous closeness I get walking down the street as cars whiz by loudly, knowing that much of that feeling is in my mind.

On the whole though, I am happy that I allowed myself to be talked into going through with the test and its subsequent suggestions for improvement. It can be so easy to tell ourselves that we’re our own experts on what is happening to us, and yes for the most part this is true. However, we must acknowledge that our brains are powerful machines and can convince us that things are fine when really they need looking into. Speaking for myself at least, I know that I must continue to be willing to open my mind to the possibilities that these professionals might, sometimes, know what they’re talking about. I thank them for working with me and giving me choice, and of course thank you for your continued support.

Ah, one of my favorite movies! I think this is so because even though it is heavy on action, a blind person can still quite easily follow what’s going on. At least in the first one. I never got as much into 2 or 3.

If one thinks about it, one realizes that time has a great power over our culture, at least that in the U.S, and I would guess in much of the so-called western world. It can fly, and drag. It can be up, and “I need downtime!” You can be just in time or our of it. Time is money and of the essence. Anymore of those time (metaphors? simile? English majors help me here!) you can think of?

In any case, it governs nearly everything we do, and our failure to take it seriously can have big consequences. At my job, for instance, you can be given a quarter point for punching in even ten seconds after the expected start, if you have not called in your excuse prior. In theory at least, buses are supposed to arrive at an exact minute (How often does that happen in your city? Here, not very). And it’s just plain better not to leave people hanging once a meet-up time has been agreed upon.

An interesting Wikipedia article details the history of time-keeping devices, with the most notable bit being that really accurate clocks were invented in the 1960’s, in the form of atomic clocks. I was given an atomic clock five years ago, furnished with two double A batteries, and that thing is still ticking! I think I’ll throw the entire thing away once it dies, since those batteries must be liquified by now.

All that to note, with its accompanying sadness, that we “fall back” to standard time this weekend. At least those of us who use the, admittedly archaic, daylight-saving method here in the U.S. I think Europe and other places have already changed their clocks. Actually, I really wish that we would just adopt daylight-saving time permanently. I know most note with glee that more sleep can be had on the day that we gain that hour. I hadn’t really noticed this until reaching my advanced age (yes, I’m old now) but even so it’s mostly just a one or two-day improvement.

More troubling to me is the subsequent loss of sunshine after work. There will be less as we venture deeper into Winter anyway yes, but with the change, by the time I arrive home at 4:10 what remains is wan at best. Because the orbs in my head don’t work, that orb located a billion miles away and full of smoking dust is of immense import to my mental stability. It’s warmth carries the motivation I need to slog through my graduate school courses. It also lets me know that light still exists, period. Somehow I must readjust until this enforced indoor time concludes in April. Books, music and sports to the rescue! Already starting the countdown till April!

For several years, I have been the beneficiary of an organization called the Community Empowerment Fund. These folks, located in Chapel Hill and Durham, are primarily interested in helping people to either avoid or recover from homelessness, but they tend to do anything that will improve the community at large. As noted several times, I had been exposed to them during my rough transition from grad school at UNC to having to head back home while awaiting my next job position. The advocate (student volunteer) was so giving of her time and very friendly that it left me feeling like I needed to find a way to pay this service forward someday.

Well as it happens, that day has apparently come. I am not sure of the entire background, but at some point another blind individual ended up interacting with this organization because he wished to acquire computer skills so that he could continue searching for employment. The advocates, in attempting to figure out how to address this situation, asked the organization’s director, and she happened to remember my name. Emails and calls were made, and finally I arranged to meet this individual the past weekend to determine if I could render at least basic computer skills.

First, I had to find the energy to power me through such an endeavor. I had on Friday sat in front of my machine to write up a project for graduate school whose results I am still uncertain of. It was challenging, and took nearly 3 hours to complete. It may have been useful though, as I generated a Strategic Communication Plan that could help me in increasing membership in the Norrie Disease Association based on a theory from the text. We shall see how much of that I can actually implement, though, but the learning is ongoing. In any event, I hope to have maintained a good enough grade in the course.

After all that, I did manage to peal myself out of bed by 11 AM on Saturday for our 1 PM appointment. Fortified with breakfast, I “Lyft”ed across town to the apartment, a cozy dig on the second floor of a building in a retirement community. We made a little small talk, and I got down to business.

As far as instruction goes, I found I actually enjoyed it. Our first “lesson” was on how to get into Gmail, make it more accessible by switching it back to the basic interface, delete messages, and download and locate attachments. Because he has only the demo version of the Jaws screen-reader currently, I even installed NVDA, a free program that does much of the same, at least basic, things that the far more expensive Jaws does. The only issue is the ESpeak voices, so I’m pondering a solution to that dilemma.

I found that I was relatively patient, and could usually come up with alternative explanations when my initial wording didn’t make sense to him. I would let him hear me walk through the steps once, then pass the PC over to him so that he could try them as I observed. It was a bit of a task, but he seemed to get it by the time I prepared for departure. He is quite intelligent, I think possessing a Ph.D., but still very much in the process of adjusting to blindness which he acquired a few years ago.

“Can I return in two weeks?” I asked.

A weighted pause told me that he really wants me to come back sooner than that, so I scheduled next Saturday at 1. I am working on designing a cheaper way of getting to his residence, but should be able to bus to Franklin Street and then get a ride hailing service from there for less than being transported all the way from here. Needless to say, it is an honor to have been seen as doing so well to be asked back so soon, and boosts both my confidence and feelings of competence. I am looking forward to seeing just how creative and instructional I can be here, in an area I enjoy and know quite a bit about. It could be the beginnings of a great new idea for me. Who knows?

It was this time a short week ago that I and my state’s many other residents were hunkered down, wondering just how crazy things might get. The thing is, even though North Carolina is one of the most hurricane-prone areas to live in the world, it had actually been something like 17 years since we had a recognizably bad one rumble through. This, along with the fact that our newscasters had initially thought the storm would miss us entirely, led to something of a lack of preparation.

Well I was as prepared as one could expect, I guess. I had food till Monday and even some meals that could be consumed without power, which I’m fortunate never to have lost. Mainly as the rain poured and did saturate the porch area that runs the length of these apartments as is common during such incidents, I sat inside and finally completed my digital presentation. There wasn’t much else to do, after all.

The real damage line occurred starting east and south of me, from the capital of Raleigh southward. And as is common during hurricanes, things actually got a lot worse after the main body had long since passed on but while the waters made their way downstream, inundating communities from Lumberton to Greenville and points in between. Pretty much any riverside town in the eastern portion of the state has had and is still having a tough time. My heart goes out to all of those folks.

The amazing thing is in my neck of the woods, you could hardly tel anything had happened by the following Sunday. The sun was out strong, and every restaurant was filled to capacity with people fleeing cabin fever imposed from the day before.

That weather reminded me of another storm, one that did have a much greater impact on where I resided: hurricane Hugo which slammed into Charlotte in 1989. That time as this one, the newscasters had told us that the storm would miss us. That time, we’d lost power for nine days and were forced to find various ways to get food and even to pass the time, since schools had also closed for a while. Though our home was not significantly damaged, it still gave me a bit of a taste of what some are experiencing as they try to recover from this. We spent hours of backbreaking work removing tree limbs from the yard and helping neighbors do the same. We also had to retrieve our understandably skittish cat, which had soared across the front yard and onto someone else’s window who took him in. I don’t know why we hadn’t had the good sense to bring the poor guy inside.

The idea of suddenly losing everything though largely lies beyond my ability to imagine it. It certainly has me contemplating what kind(s) of evacuation strategies I could use if I really did have to, and I’m not sure I know those answers entirely.

The ironic thing is I had just completed a book called The Weekenders, by Mary Kay Andrews. In it, a family makes its yearly summer sojourn to a beach town (fictional I think) of Bell Isle off the coast of North Carolina. All kinds of drama ensues with the really dirty husband, rebellious teen-aged girl, a man who seeks to reunite with the “wife” and main character, and a number of other side plots. I enjoyed it because of its shouting out nearly every section of our state, with the main character having been an anchor at WRAL in Raleigh, and attending UNC. The most relevant part though was the town being rattled by a hurricane around Labor Day. Andrews shows how this experience would be different now in the smartphone era, with constant emergency alerts and immediate awareness of mandatory evacuation. Matthew was my first experience in this era, and I was indeed launched out of bed by one of those loud! very vibratory alerts. I think they are great though, and they do keep me informed.

I think that should be the last storm for us all year, and definitely hope so for the sake of those who will be mopping up for a good while. Have you ever lived through a hurricane? What do you remember about it?

You, dear reader, have not been forgotten. But my free time sure has. Never have I been as busy as I am these days, with something going on nearly all the time. Such was my wearing out this past Friday night that I slipped under at 12:30 AM and didn’t really surface until 1 PM on Saturday, numb and groggy. Man, I know this amount of umph is going to be required in order to move forward, but it’s taking its toll.

So, I’ll bring you a fairly short post, with something more substantive at the end of 2017, once I emerge from graduate school. On that front, I’ll admit I’m getting a bit more nervous. Made an 86 on week two’s major project in my current class, COM 613: Constructing Messages and Audiences. Man oh man, the requirements are stepping up and I’m kind of slow in catching up. We have a major project due every other week though, and I’ve just submitted the most current, a presentation. Not sure what to expect, but trying to remain calm and rest in the fact that I’m doing the best I know how. Will that be good enough? Who knows.

What was good was my birthday retreat, (Annual? well I don’t know about all that but for the second year in a row at least). This time to Myrtle Beach. The hotel property, the Patricia Grand, was just ok I suppose, but it was difficult to find places at that time as everyone had the same idea of going for and end-of-summer hurrah. And we were due to get yucky weather in the lee of a tropical storm, but it held off till Monday and the sun shone pleasantly nearly the entire time. The main issues were that breakfast was a bit plain, the housekeeper had a big attitude problem and never came back because we weren’t immediately ready for her, and it is built such that the halls are open-air, meaning all the ambient noise comes in as one is atempting to sleep. But, we managed. A bit of amusement occurred in the form of a woman from Indiana who felt the need to approach as we walked along the ocean and proclaim this as “the greatest thing ever!” We’re guessing that was her first ever beach trip.

I went with my girlfriend, just as we had to Wrightsville the prior year, but this time my cousin and his wife also accompanied us. A couple of dinners, college football (for us) and shopping (for them) made for fun minglings. She also got me a nice duffel bag to replace the UNC bag I’d had for only 2 weeks before it acquired a mysterious hole! This thing is on wheels, and is a different shade of blue but one that will allow for easy retrieval from a train or plane compartment. I love travel-related stuff.

And of course these days, I never travel anywhere without my trusty iPhone. That’s right, we’ve just passed the four (4!) year mark of my having this thing, and the amount of stuff I can now do with it continues to increase and impress the heck out of me. Even when on the way to our hotel, her phone suddenly stopped working and I had to quickly pinch hit with GPS directions. Also thanks to apps like TuneIn, I can listen to just about as many sporting events as one who has a satellite radio these days. (Bummed that my darn Panthers lost again, already exceeding last season’s total). Then there’s the usual: books, movies, NPR, and on and on. Finally, I can record my presentations for class on an app like Bossjock and upload them to SoundCloud, as per requirements. This may well be the only accessible way of doing so. So tech continue to lead us onward and upward.

And now my final note: on the Life Coach whom I also found via that phone and its ability to search local ads for my queries. We had our first official session this Monday, after which I lost my debit card, deactivated it, and seconds later had a neighbor knock on my door having retrieved it. That debacle taught me I should have pressed the “Lock” button on my banking app to hold purchases, thus giving myself time to see if the card could be located. Anyhow back to the session: it went well. She concurs with my “long” goal of trying to get into NPR, and we will start to fashion some kind of plan to at least start me down that road. She also worked with me on physical body language: posture, the amount of space I take up, the kinds of things blind folks don’t often ponder but unfortunately to our peril. People do not consciously decide not to hire on the basis of such things, but I imagine the underlying biases formed there are extremely hard to overcome. So the more I can know going in, the merrier right?

And that’s about all I’ve got for now. Busy busy bee, when’s my next I need another vacation now. What’s happenin’ on your end?

In the U.S., we are approaching a horrible anniversary: a day on which 3,000 people were lost in an attack on buildings in New York and Washington D.C. I, as do many I’m sure, have vivid memories of what I was up to that beautiful pre-Fall day.

The night prior, I had been told some things by a person whom I called my ex-girlfriend, but, well, read this entry for hints. Anyway, she made some comments about my sociability or lack of that I perceived as having merit, and so I felt a little sad as I drifted off.

On the day in question, I showered in the communal bathroom at my UNC Charlotte dorm, then headed back into my room where I flicked on the Today Show as usual. When I heard talk of a plane striking the World Trade Center, my initial thought was “how tragic for the pilot. Or perhaps he or she will have managed to survive.” You see, I thought that it was a small plane or some sort. But the seriousness of the shows hosts’ voices, along with the fact that the jovial background music that usually accompanies stories had been turned off caused me to freeze, deodorant in one hand, clothing in the other, as the depth of the situation hit me.

The rest of that day passed in a confusing fog of oddly relevant coursework on building community, dealing with stress after major traumatic events, and the like. I felt bad being even the least bit happy as buildings in those cities burned, taking with them businesses and lives. By nightfall, I was just glad to slip into the relative obscurity of sleep, with the erie silence of the skies seeing me off (I could usually hear airliners passing from that location).

One of my most vivid memories happened on the following day. As I sat in the lobby of an academic building, an individual from Saudi Arabia plopped down in the seat beside me and began near-breathlessly imparting his story of how he had come here to get a degree in Engineering. He talked of likes and dislikes, hobbies, and related vric a vrac. I think his intention was to show that not all Muslims or Arabs harbored desires to act in this way, as well as to counter the isolation and discrimination he may already have been experiencing in the wake of the attack.

Fast-forward about 10 years to 2011. I was at the University of North Carolina, in the graduate program then known as Rehabilitation Counseling and Psychology but now having some other name with the acronyms CRMH. I had been working all day to gather research for my Thesis-style paper (which I never finished, but that’s another story) and so after listening to one of the last Space Shuttle launches, I gathered my things and prepared to exit that academic building.

“Do you need help?” I heard an accented voice ask.

Not really,” I replied, “but I always welcome the company.”

So this woman, who turned out to be from Lebanon, walked with me to the bus stop and gave me her number, indicating that she wanted to meet up for coffee someday. We had many good times together: going to a music festival at Chapel Hill’s University Mall and having beer and burgers with her co-workers, shopping in that mall and tasting wine in Southern Season (I joked that she would have to carry me out if I consumed another drop,) and attending two services at the Greek Orthodox church of which she was a part (once my left-side hearing aid died at the service’s end, a huge disaster!)

SIDENOTE: I know that was a really long sentence, but I hear William Falkner did it, so so can I!

The last time we met, a day before she ventured back to Beirut to take a professorial position after having completed a post-doc at UNC in some pathology-related field, was on September 11, 2012, which has always struck me as ironic. I had attempted to persuade her to stay here, but she wanted more than anything to return to her culture. I suppose I can understand that.

On that day, she gave me some grocery money that I half-heartedly tried to refuse but did really need then, took me to Chick FilA for a sandwich and their delicious waffle fries, and left me on my doorstep with a hug and good-bye. We only talked a couple of times thereafter, having vowed to stay in touch but well one knows how that goes. The last time I spoke to her was August of 2013, and I hope only that whatever became of her that she managed to prosper. I thank her for being willing to interact with someone who is so obviously different.

And there in lies the main point of my post: differences of race/ethnicity, be they sociologic or, to a lesser degree, biologic, do exist and this is fine and should be celebrated. My issue is when people use these differences to needlessly hate, dismissing people simply based on skin color or other attributes, like ability/disability, that are readily apparent. Because at the heard of it, we all want the same things: to love and be loved, live as we want in work and play, and survive. I know these words are often repeated, but will continue to do so until these basic understandings are more widely held, praying that such a thing happens someday.

Welcome to September! The ninth listed month of the year, but with some astrological origins that make it more like the sixth or seventh month in that particular calendar, hence the prefix Sept. Oct, Nov, and Dec indicate eight, nine, and ten respectively. I searched Google, and at least in the relevant Wikipedia article it was difficult to ascertain the entire origin of these designations, yet they are interesting to me nonetheless.

The most important element of September, and of all other things of course, is my date of birth. This makes it the year’s BEST MONTH, and I congratulate any others who have had the good fortune to be born therein. I kid, obviously. But I do love this time of year, for as I spoke of in the previous entry, it is a time of newness and potential.

I find it hard to believe that I am turning thirty-seven (37!), goodness, and am therefore entering my 38th year. God willing, this will be a year of huge change, or at least making a significant effort to get my bow pointed n the right direction and start sailing through the waters toward whatever my destination should actually be.

As such, I’m going to attempt something different. I will look into obtaining the services of a Life Coach, someone who I suppose will provide me with insights and strategies that will help clarify what on earth I want to do and how I will do it. To that, I say good luck to this individual! Because I have found that to be a nearly impossible task throughout my adulthood, even though without question this past year has been the best I’ve experienced since the conclusion of undergraduate study.

To determine if I can afford and will fit with this person, I will meet someone named Beth Livingstone in a free consultation, which she says should be beneficial in and of itself. This meeting will happen on Friday. I am uncertain if I can budget such that I can make the initial rates, though she says we can talk about what the final ones will be. So, I will do that. Nothing to lose, right? In any event, this should be interesting. Not psychotherapy, but hopefully I don’t need anything quite that aggressive. But without question, I have been kind of spinning my wheels for far too long. Time to make some real progress!

Speaking of progress, I have just completed class 4 in my graduate school studies. I was a little disappointed to obtain only an 88 on that major project, but it was my fault as I hadn’t properly evaluated the requirements and thus came up a bit short. It was a wake-up call, anyhow. I still did perfectly fine overall, though it’s getting harder to stay motivated when there is virtually no break from one course to the next. Still hanging in there though, learning a lot and making connections.

Connection and reflection will dominate the next couple of weeks leading up to the birthday, as I will take both of these coming Fridays off and work the actual Tuesday, because it’s in the middle of the week anyway. And taking this Friday off will help with the Panthers opener being played Thursday night (they better win!) Looking forward to that.

We’ll see how all of this goes, and still waiting to get the really exciting stuff to write about again. Till then, enjoy the great outdoors for the period of time when they treat one nicest, at least in this locale.

Book? Car? House? School? You name it, for some reason we have a big thing with the scent that emanates from a product at its initial use. Brings back a bit of nostalgia, right?

My new shoes. Even they smell good initially haha

Like the newscasts, I’m kind of out of material because not much is happening, but I think it a good idea to try and come up with something anyway. So let’s be all about that new life!

Currently, the scent that is wafting over me is that of freshly cut grass. That would be pleasant, except it is accompanied by lawn-mowing equipment that sound just short of jet engines. I keep ducking, in fear of being clocked by the massive tires of a commercial airliner as it wooshes by. Why hasn’t technology made this stuff quieter yet?

The one thing all of this equipment, and the fall in temperatures, does portend is the arrival of yet another season: Autumn. Yeah we still have a month officially until it begins, but already I have disabled my air conditioning probably for the year, cold-natured person that I am. I do enjoy this period of temporary refreshment though, as it always gives me the sense that the possibilities are endless. Something like back to school for adults.

And speaking of school, I’m nowwrapping up class number 4 at Queens University, all about leadership. I’ve groused some about whether I felt I would truly gain anything from this course, but in reality it is probably the most relevant I’ve taken yet as it is giving me the tools both to try and strengthen my contributions to the NDA and to prepare for some other, eventual career change.

And that likely brings me to my final point of this post: aiming to create new opportunities in this year. Thus far, I would have to say I’m disappointed with my outcome, but as the text of my graduate course helpfully points out, I have a tendency to set high, probably unrealistic, goals. But how do I figure out what IS! realistic. That, I would say, is the great struggle of my time.

Other than that, not much. Just watching as another year of my life rolls to an end (my birthday is September 13, don’t forget!) and looking forward to yet one more journey. In the 365 days since the Norie Comference, I’ve stayed in seven different hotels! No overly exotic travel, but some great trips nonetheless. I’m pretty sure that’s a NEW record for this broke man as well, and one that might stand for a while.

So, what’s new with you? Any exciting career changes? I know some of you have taken great vacations. I’d like to hear about it.