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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fri, August 14

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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