A moment for which I had been waiting nearly since I completed her fantastic book, The Good Goodbye. Very rarely have I read something whose characters stick with me long after the last page is turned, or word is played in my case as I consumed the Audible version. The two mothers, and two cousins have such complicated, entwined issues as the kids prepare to start university in a less-than-expected situation that I find myself unable to stop pondering them. Then you throw in a female professor taking advantage of the shakiness of things and a male who becomes involved with both of them, and the story becomes filled with intrigue. All of this literally goes up in smoke, creating the major event that separates before from after. If you’ve not read it, I shall spoil no more. But go check it out!

That’s right, I had the pleasure of meeting Carla Buckley, after having inquired about when such an opportunity might be available via Twitter and being told to drop in on her speaking engagement at the Chapel Hill Public Library. As I strode in, tired from a long workday, Buckley immediately came to shake my hand and even had a picture of us taken seated together. Then I graciously consumed the cookies and coffee that were offered me, giving a needed energy boost.

There were an appreciable amount of people in the room by the time 4 PM, its start, had approached. I think she wanted to go ahead and start so that things wouldn’t get too loud for the library atmosphere. A brief introduction was given, wherein Buckley’s birthplace of Washington DC, the four published novels she has out as well as her forthcoming work were noted. And then she began to speak. They had already moved me to the front of the room, as I’d informed them of my hearing issues, and she also repeated information received from the back of the area.I really appreciated that, as I thus missed little.

Her speech wasn’t too long at all, focusing on the art of writing and what helps her do it well. “I write when the kids are at school,” she says “whether I entirely feel like it or not”. I think initially out of necessity she had begun writing while in the library, and now she finds it to be the most productive way to engage in this craft. “I don’t like writing sometimes as much as I like having written,” she says. Now that’s an interesting thought. I know sometimes I don’t quite feel like writing either, but letting those words out then feels good when I have managed to produce something no matter what.

The audience posed some excellent questions as well. “How do you structure a book?” She’s a Plotter, not a Seat-of-your-pants writer (or pantser). She laughed about the friction that can exist when individuals from both camps are attempting to work together.

“How do you come up with your stuff?” “Not everyone writes this way of course,” she replied, “but for me I write about things that deeply emanate with me”. Those are most often family issues, how they are formed and thought of by the individuals who comprise them. This could also be seen in The Deepest Secret, another of her books which I have read and enjoyed about a boy who has a rare disease that makes it dangerous for him to be out in sunlight. In this story, she wanted to explore the relationship between mother and son, which may have differences from that between mother and daughter. Incidentally, she notes that this novel also has her favorite opening line, a “great question!” that someone asked but had not been previously considered.

Not long before closing, she discussed how research involved in one of her four unpublished books regarding watching a building being taken down with dynamite had informed a scene in her later work. “I love conducting research with people who are passionate about what they do,” she says. “It is amazing and gives so much insight.”

I enjoyed the presentation, and the chance to encounter someone whom I had only known through the pages and social media contacts. I also met a kind volunteer who has worked in the library for a number of years, I think public libraries actually get much of their service from such, in many cases older, individuals. I thank them for the work they do as well in bolstering our communities.

So that was the first major event of 2017. What you got next, year? Assuming I can surface from these projects that roll like waves, breaking from them even in ways that I probably shouldn’t but must in order to maintain my sanity. Now to hit submit and get back to work on this discussion board! More soon.

And counting? Oh Old Man Winter, I’ll grant that I did hope you would grace us with your presence and in so doing grant me another short vacation. The only thing, dear sir, is that it causes me to be locked behind this door and hardly able to remain upright for more than five hours at a time. I am slipping further and further into hibernation mode already, wherein all I really feel like doing is burrowing deep under the blankets and venturing out only to obtain necessary sustenance.

That’s right, we got brushed with just enough of the good stuff to ground us, but what would be laughable to those in colder climes. The biggest problem at the moment is that the sidewalk is a solid sheet of ice from my door outward. Actually there probably is a different way that I could exit more safely, but because the temperatures were barely out of single digits when I went to check, I didn’t bother going to survey that avenue. Should work open tomorrow, I might MIGHT take a look at going out that way. Truth be told though, if it’s delayed I probably won’t bother both because it then costs me unnecessary amounts of money that detract from the point of going in anyway and, well, I am storing up all this sleep for later. Not to mention there is a college football National Championship game on tonight that I could then watch in near entirety without worry of grogginess in the AM.

I’ve been ok in here for the most part. I do have the requisite food, though I just ran out of bread because I hadn’t properly anticipated how much I would consume. Still plenty of other stuff to eat though, so I won’t starve anytime soon.

I have also stocked up on books, grabbing four in my most recent go. I just started one called The Woman In Cabin 10, by Ruth Ware, in which a British travel writer, after suffering a break-in, embarks on a luxury cruise aboard a boutique ship and, I think, hears the voice of a woman about to be thrown overboard? I’m not exactly sure, I’ll admit, but it has a “The Girl on the Train” kind of feel. Might be good.

The “reading” I really need to be doing of course is that for my Master’s program, which just restarted officially today. This course is one on Organizational Identity and Brand, which I’ll admit doesn’t sound like the most stimulating topic ever? But, it is good to know for one who wishes to help an organization set its course. I’m going to be more interested in the nonprofit angle, to which one of the texts does allude so I hope it will be addressed. Given that most of my other major projects have focused in some way on the Norrie Disease Association, I will continue in that vain if I am able to do so. This should help in my efforts to become a more effective leader. There are two projects in this class of note: we have to write a paper on why identity and brand are important, a seven-page lit review and blog post; and we’ve to do a podcast interviewing three “employees” about how they see their place in their brand. I admit I don’t entirely understand the premise of the second project (any employees or those of a specific organization) but it should be the more interesting one. I’ll just need to have a teleconference with the professor, whom I’m having for the second time, in order to clear up my issues.

And that’s about it. Just over here now looking forward to thawing out and the 70 degrees we’re to experience by Friday. Here’s to wild weather swings! More later as this crazy 2017 really gets going. Hope yours is off to as interesting a start.

This year, as we marked our second New Year together with wine she could hardly finish, I had the honor of asking for this beautiful woman’s hand in marriage. In my clunky way yes, but I managed to do it. And with that comes, as she puts it and I agree, a mix of excitement and some trepidation. Not because we don’t actually want to do it, but because we are aware of the awesome responsibility that comes with melding two distinct lives in such a way that we both benefit and enjoy each other. It will be an ongoing process, that’s for sure.

While we are aware that most of what needs to happen will be after that ceremony of course, we are also hoping to have a different experience for a wedding. At the moment at least, this would happen aboard a Carnival cruise ship before setting sail to the Bahamian ports of Nassau, Freeport, and some Cay that I’ve forgotten at the moment. The price is actually lower than that of most traditional weddings, and we have the added benefit of not having to do too much planning. I think it’s a really cool idea, and am surprised that more people don’t do it. We are hoping to do this close enough to my birthday to celebrate that at sea as well.

So having expected that the proposal would occur around New Year’s Day, I’d spent much of my holiday pondering it. Mixed in of course with lots of relaxation, especially as the weather was fantastic from Monday the 26th until Friday the 30th. During that period, I managed to complete two great books while living outside and absorbing the rays that I will need as we finally plunge into the gloomy heart of Winter. This marks the first year in four that I’d not taken an actual vacation somewhere, but truthfully I welcomed the stillness.

Other than the already documented momentous event, I spent Christmas and New Year’s Day with her folks. On the former, we ate at a Lumberton NC area Chinese restaurant. I think more Chinese restaurants tend to be open on Christmas anyhow; then there was a quick gift exchange at her family’s home. And to begin 2017, I had the requisite dinner of I think something like blackeyed peas but not those exactly, collards, fried chicken, potato salad, white rice with gravy, and dressing. I admit I may have eaten too much, but I enjoyed every morsel.

And that pretty much makes up my break. I am a bit bummed that it is ending and I must return to work, but have a whole lot to look forward to as we move deeper into this new year. I do have many hopes and dreams for how everything will turn out, but suppose the more interesting part is not knowing exactly how things will go in the end. I continue to hope that it all goes well for us, and wish you a happy new year!

I wanted to be fancier with this than I feel like doing, but can’t bring myself to create the nice table to go along with it. So I’ll just slap a rating on each book, and you can give them a look or ask me for more info if so desired. It should go without saying that these ratings reflect only my personal opinion, and yours may vary widely. I think, assuming I can count, I’ve completed 44 for the year. Still working on a couple, but they won’t be finished before 12 so I guess I won’t count them. Enjoy.
Books of 2016
Fever, Megan Abbot 3.5/5
Magnificent Desolation, Buzz Aldrin 5/5
The Weekenders, Mary Kay Andrews 4/5
The Now Revolution, Jay Baer 3/5
The Guilty, David Baldacci 4/5
Memory Man, David Baldacci 3.5/5
The Good Goodbye, Carla Buckley 5/5
72 Hour Hold, Bebe Moore Campbell 5/5
Death Match, Lincoln Child 4/5
As Time Passes, by Mary Higgins Clark 3/5
Fool Me Once, Harlan Coben 4.5/5
Prince of Tides, Pat Conroy 5/5
Host, Robin Cook 3/5
Sonic Wind, Ryan Craig 3.5/5
Dark Matter, Blake Crouch 5/5
The Faithful, S.M. Freedman 5/5
Find Her, Lisa Gardner 4.5/5
Maid To Match, DeeAnne Gist 4/5
Homegoing, Yaa Gyasi 5/5
The Art of Forgetting:Nomad, Joanne Hall 4.5/5
When the Moon is Low, Nadia Hashimi 5/5
Saved!, William Hoffer 5/5
Between, Georgia, Joshilyn Jackson 5/5
The Opposite of Everyone, Joshilyn Jackson 5/5
Charleston, John Jakes 5/5
Storm Cycle, Iris Johansen 4/5
Running the Amazon, Joe Kane 4.5/5
You, Caroline Kepnes 4/5
The Moor’s Account, Laila Lalami 5/5
Ancillary Justice, Ann Leckie 4.5/5
The Stranger in my Recliner, Doreen McGettigan 4/5
Born With Teeth, Kate Mulgrew 5/5
Crash Detectives, Christine Negroni 4/5
Sleeping Giants, Sylvain Neuvel 5/5
Mercy, Michael Palmer 4.5/5
Small Great Things, Jodi Picoult 5/5
Crimson Shores, Douglas Preston and Lincoln Child 4/5
Obsidian Chamber, Douglas Preston and Lincoln Child 4/5
Most Wanted, Lisa Scottoline 4/5
I’ve Got Sand in All The Wrong Places, Lisa Scottoline; Francesca Serritella 4/5
The Dolls, Taylor Stevens 4/5
Seveneves, Neil Stevenson 4.5/5
Sophie’s Choice, William Styron 5/5
Back to Blood, Tom Wolfe 3.5/5

You probably don’t know how happy I am to type the words preceding the colon, a successful completion of a year in grad school! With near as I can tell no final grade less than an A. This last class, by which time I admit I was rather tired and found it hard to ride out projects as strongly as I could/should have, I squeaked out a 92.5. That, my friends, is a far cry from where I stood at the conclusion of, well my first semester at UNC during which I’d taken almost as many classes as I did this time in a year’s period. That kind of load was probably a mistake for me anyway, but the good thing about this life is you can get knocked down but still not be all the way out! So many, including my wonderful partner whom I have been dating for nearly two years now have helped me in this rally. Thank you each and every one.

I wish I had written in here more often, but by the end of that semester, as I said I was just trying to slog it out and survive. So once it was over, I happily went down to Lumberton for my friend’s annual Christmas party. Therein, we experienced temperatures near 70 after they had hoovered around 16 the night before. Welcome to crazy north Carolina weather. The mainstays of these gatherings are meeting people we don’t get to see very often, eating foods, such as sausage balls, that I only really get there, and the gift exchange. This year, we had Secret Santa’s. Knowing the person I’d drawn as I do, I figured she would want something “weird”. So we managed to find a puppy that vibrates and massages you in so doing. I couldn’t have that thing myself, as it would glue me to the ceiling. But happily, she enjoyed it. I got two Carolina Tar Heels glasses, to the consternation of my partner who is a Duke fan, as discussed in my initial post about her. I’m thinking of compromising by buying her a set of those rival glasses, but not sure if I should allow myself to be tainted to even that extent. Ha, ha. What I need to happen is that she drinks water from the magic glass and is finally made to see the light!

The laughs that accompany people’s receipt of these gifts are what really make them worthwhile. Other than that though, the party was mostly laid back as one can tell we are all aging and not exactly “party animals” as we once were. They did have fun shouting random songs for Alexa, the voice of the Amazon Echo to hear. After a while, they got into a rhythm and generated some fun 90’s tracks. Many, including my cousin and his wife, got out there and took a spin on the dance floor. And no, I did not do this. My bones would have cracked!

So that took place on Saturday. Her parents also reside in Lumberton, so we usually try to swing by and meet them as well, as we did on Sunday. We enjoyed a lively breakfast, then discussed some very big changes that she and I will soon be making, the details of which I will divulge later. But suffice it to say this has been one of the most important and shaping years I have experienced as an adult, and I might finally be getting close to actually becoming the full person I hope to be. Still much to do though, without question.

One of those things I must continue doing, as written in my last post some four weeks ago or so, is to expand my comfort zone. As such, I always keep my eyes pealed (it’s a metaphor! who cares if my real orifices do not work?) for new opportunities to do things I normally do not. So when WUNC, our local NPR affiliate, extended a chance for select listeners to attend a holiday listening party, I filled out the form. They were planning to air a radio drama called Occasional Shivers at the historic Motorco Music Hall in Durham. This, along with a couple of landmarks, was a place I had long wanted to visit during my stay in the Bull City, however long it lasts, so I jumped at the opportunity.

And what do ya know? I won! I was told to arrive and state my name, as it would be on the guest list. So I showed up at 6:30 for the 7 PM show, not entirely sure what to expect. The venue had a small club feel, but there were also quite a few folks packed into it. The chairs were so tightly put together that in attempting to situate my backpack under mine, I knocked over the neighboring chair. Mild embarrassment and amusement accompanied that clatter. While awaiting the start of the show, I consumed a big, cool glass of ginger ale. They had quite a selection of alcoholic beverages, but I was not particularly in the mood for that.

I hadn’t really known how a “listening party” worked, but basically we were able to hear the airing of this play prior to its premier on the radio station, along with short interviews with cast members between the major scenes. It’s a holiday love story set in the early 1960s New York City, when jazz was still king and, as noted on the site, was still “trying to find itself” just prior to the rock & Roll era that no one really saw coming. It was a musical with some dialogue, and because you couldn’t actually see people’s faces, their emotional reactions and such had to be more strongly conveyed. This of course made it more ideal for blind folks like me. You can learn more about it and listen to an Occasional Shivers trailer here. I really enjoyed the music, and especially the song that deliberately used just four chords. There is something the brain finds so beautiful about that, which is why studies consistently show that most hit songs are based on that very premise. Complicated simplicity?

Anyhow, I appreciate the opportunity to have attended such an event, and thank Regina Yeager, WUNC Development Director whom I got to meet (cool!) for helping to ensure that I connected with my Uber ride amidst the hubbub. She definitely helped me to feel more comfortable about having attended this event.

“ah, you’re the name I always see,” I said once I finally realized what she had said her name was.

“Yes, I’m sure you’ve seen my many emails,” she replied. We had a laugh at this.

And so we begin to wind down from 2016. I suppose I will provide a more thorough year-end review as it closes out. But on the whole I have been very happy with my new and varied experiences, and all the friends I’ve made and maintained throughout. And mostly to surviving grad school! If you’ve closed an academic semester, I do hope it went well also. More soon.

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?