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!