Reflections: On Grad School a Year Later and Job Days No. 6

Am I the only one who is still too addicted to the Facebook Memories section? I keep saying every year that I will stop looking, because I already hav. But as I’ve noted before, we humans, or at least this human, has a real thing for nostalgia; pondering where this life has come from and to where it is going.

To that end, when I saw the note from Facebook that I had graduated from Queens a year ago (it went official on December 15 but who’s counting) I laughed because I had recently asked some of my former classmates to complete a questionnaire where they could note their thoughts as well. I have included their responses, as well as my own, in a table pasted below. Three of the five persons whose information I still had chose to respond, so while small, it does give a good sample of the various takeaways from this experience. I have anonymized them and numbered them where they appeared alphabetically in my responders, which is why you see Student 1, Student 3, Student 5. Check it out.

Question me Student 1 Student 3 Student 5
Reason for attending grad school (personal statement stuff) Perhaps obtain freelance work that might lead to employment at NPR; broaden skills Potential job promotion, (director or VP) Increase marketability in comm field; become journalist/radio host; understand how people communicate in workplace Passionate about learning,; increase marketability, hadn’t decided on career as was right out of undergrad
Have any of the goals been accomplished a year out? No; better skills, but a need to maintain them; probably NPR goals have changed No, not with company long enough, but hopeful No, though attending program broadened general competencies and helped build portfolio; hopes to create opportunities out of rejection Yes, though hoping to connect current political advocacy with communication in next role
Difference in online versus on-ground learning? If so, how. Went to both, more tenuous friendships/networking because haven’t met, though some ties do exist No significant difference, allows flexibility, requires motivation Appreciated flexibility, but lack of networking and inability to take advantage of on-campus opportunities due to out-of-sate location Went to both, difference was need to schedule out adequate time to learn the material when not attending a class
Is current employment related to the degree? No Not entirely, as primary work is in graphic design. Does help in marketing, though No Yes, but could be an even better fit
Would you recommend the degree to others? How might they enhance opportunities while therein? Yes; take advantage of career center at least in improving resue/persuing internships, connect with profs Yes, a Master’s can separate one from other candidates; find and think about how to apply it directly to job Yes; Take advantage of chances to learn platforms/technology well Yes, but develop clear plan for utilizing it after. Still working on this

So, as you can see many of us feel that while our exact aims have yet to be achieved, both the experience was with it and it will certainly help us going forward. I do know that one can never be too tech savvy these days. As quickly as this stuff changes, it’s probably already a little different even from what we learned. That speaks to the need to keep working on skill sets and mindsets as we learn to fully compete in this new, heck really kind of overwhelming job market. Because whether we like it or not, much of our interaction will be at least partly online, and thus requires a slightly different way of thinking in order to persevere.

In thinking of all this, I realized I hadn’t done my usual Job Days post since returning to LCI (They’re no longer calling it LC Industries because that title makes less sense when offering tech services which they hope to do soon) earlier this year. Truthfully, my current “job” is harder to nail down than ever. Whereas I pretty much lived in light sticks, (See Job Days No. 5), I now do anything from PML’s (I don’t even know what those are except that I stick a pen through them) to packaging flatware, to, most recently, medical kitting. This last features an assembly line where we put together different kinds of bag (IFAK as I always hear her say, I’m guessing that means International First-Aid Kit?) at a relatively high speed. I also have packed tourniquets (who knows if I’m spelling that right), and other small bags containing medical products. I suppose this is the most important thing I’ve done in there, as this stuff is used to save lives in Iraq and other places where US troops are active. We also provide material to refugees in Syria.

< [>If O do remain at LCI over tie, I am looking forward to taking what I learned in graduate school in to training there and perhaps doing some kind of ciustomer services work. But other than that, I might really like to get back onto a college campus and maybe be employed in a disability Services office. Many possible doors are opening as 2018 winds down, so who knows.

In closing, I want to thank those who took the time to participate in my little survey. It certainly helps me think about what I gained from grad school attendance and how it might benefit me going forward. I hope it has done the same for you, and look forward to great things for us all.

Thanksgiving at the Millers: Turkey for Turkeys!

As I have no doubt said before, marriage represents not just a bonding of two individuals, but also an expansion of family. In some cultures, they intentionally arrange such unions for this express purpose, but here we match up for various reasons, and so one is never sure what the enmeshing of family will indeed look like.

If any day is likely to bring out potential family drama, it seems to be Thanksgiving. I’m sure that whole novels have been composed based on the angst that can occur when that turkey and stuffing are placed on crowded table and people smash themselves into small spaces after having driven or flown many miles to a place they may not really want to be. (I had a NaNoWriMo novel based partially on that premise that I should really dig up and revise). Anyhow, that is beside the point of this entry.

Fortunately for us, our two families get along famously, at least the parts that have come into contact with each other. Still, it had not occurred to my wife and me when we began planning to host our first Thanksgiving at the 1800 or so square foot townhome that our assumed 10 people, (her side of the family) would swell to 17 to 20 as some from my side indicated a wish to attend as well. This admittedly caused a minor panic as we pondered how to find the right amount of tables and chairs, and if the space available could even be configured to hold such a gathering. Of course, there was no need for concern.

To solve the tables and chairs issue, she had the ingenious idea to rent them from a nearby place that does such things. Short of that, we were going to just by. bunch of extra furniture that we wouldn’t really need in most cases and would just have to shove into storage downstairs. Lots of unnecessary money and space would have been taken. The tables and chairs did take up her entire car, but the facility had helped in getting them all in and we had one used to offloading trucks and the like to remove them on this end. So that was not a problem. Getting them into the house though required moving the love seat and kitchen table a bit, and when this was done I was actually surprised by how much space we had. I’m definitely not a spatial person, so I leave that kind of stuff to the pros.

My other concern was as a relatively new dad. Ok I’m joking here, but if you want the full reference on that check the previous entry. I feared our “daughter” would have a minor meltdown with so many people chattering and moving around in this place, as she’s not a big fan of noise. She came through with flying colors though, being unusually willing to chill with people she hadn’t met previously and only yapping a couple of times, more when neighbors did something than when it happened here.

And we certainly did plenty of chattering as we always do in this situation. I knew it would be the first significant test since I had the new aids adjusted, as happened in an appointment a couple weeks ago. I needed a little more bass to the sound, and to have some of the distortion removed from it (which I had been told was purposeful as it could help make voices clearer). Now I’m contemplating whether I should have left it. Today’s experience was.. ok? Well as usual I could hear near nothing on my right side. This ear is used almost exclusively for balance purposes though. On my left side, well let’s just say I hung in there. But constant, overflowing conversation will probably just always be a challenge for me. I accept this and hopefully those closest to me are ok with it as well.

When I did talk, it was of course mostly about sports and food. On the former, we watched a bit of the traditional Detroit Lions game (and their traditional loss) until dinner began, at which time they turned on a gospel playlist. And the latter is of course the core of this holiday. I mostly try not to overeat, so I simply enjoyed a piece of chicken, stuffing, green beans with a couple of potatoes, Mac and cheese (gotta have that!) and rice. I also had a delicious cup of koolade, which takes me back to my childhood. This was grape and pineapple flavored, and I could definitely taste the pineapple influence. Good stuff. Dessert will be consumed shortly after I compose this article, and I’m just enjoying dragging out the moment of pleasure until I sink my teeth into something, the likes of which I still haven’t chosen. We have two kinds of sweet potato pie, chocolate cake, strawberry cake, I think some pound cake and maybe some pecan pie. MMM!

So the day was a wonderful success, with my always hard-working wife doing her best to make it so. My folks especially have few gatherings of this nature, so it would be great if this begins a new tradition for us, although I’m not entirely sure if we will host every iteration of it. That first experience was memory-making though. To all Americans, I hope you had an equally pleasant Thanksgiving with friends and family, and I of course keep in mind those who for whatever reason were not as able to do so. Till next year!

Celebrating My “Daughter”‘s Birthday

This post is about the slow-developing, but now unconditional, love between dog and human. I am fortunate to have so many different animals to whom I have become attached during my life, and think they can teach this fractured (human) world a whole lot about being willing to learn about that which we perceive as different but which might end up changing our lives beyond measure.

I remember our first encounter. On the day my now wife and I made our first real, in-person connection, she brought you over to where I was sitting. You took about 15 seconds to look at me, and decide you did not want a part of that, scampering off to whatever else had been holding your interest.

“It’s ok,” I told myself: “often a new entrant into an already established relationship takes some, shall we say, getting used to.

That initial meeting happened in February of 2015, on Valentine’s, the day of love in fact, and as I came around in March, April, July and August, your curiosity slowly won out and you had to come and see who this person was that always hangs with “mama!” Tentatively at first, then with a building aggression, you pressed up against me, checked out my hands and concluded that you enjoyed them, and, one cold November day, told us both that my presence had been approved by kissing our interlinked hands. I knew in my body that this occurrence was profound, because you, and for that matter most of your kind, have a great ability to pick up on people’s vibes, whether hidden or expressed.

After that great November day, you hardly allow me to sit alone on the couch without “asking for” well “demanding,” physical contact. The longer we have been together, the more you seem to want to be around. You used to at least stay away during times when “mama” and I are chatting or otherwise engaged, but now if you sense that she is on the phone or not talking to me, you’ll make your presence known till I either pet your head from above or, best of all, get onto the floor with you.

I can tell that you enjoy this kind of play, as well as the strange sounds I make, as your entire body expresses the amusement and joy with shaking and pants. As long as the sounds are expected, that is. When we get too silly, you scamper off to your safe place and hunker down until sanity prevails.

Who says that one’s “kids” must be part of the same species. In our opinion, she is our kid because she provides something tangible to love, entertain and, to some extent anyway, protect us. She is a seven-pound Pomeranian we call Boo Boo, and she turns 8 this Halloween. That’s 56 in dog years, so yeah technically older than I am by a few. But as all parents say, “you’re never too old to be my kid”.

So here’s to many more years, we hope, so long as you don’t eat anything strange and enjoy life. And to al others who’s kids have four legs instead of two, I salute you. Woof woof!

A Brief Update: New Aids!

After seven years of my Little Blue Boxes, change was definitely in order. Yes those boxes served me well over their life, and I managed to make them last longer than they might otherwise hav. But what I failed to realize, as I almost always do when used to my hearing situation, is how much I had lost.

All of the paperwork cleared up and aids purchased, I finally, somewhat excitedly, scheduled the appointment to acquire my new aids on Monday. It’s weirdly like a kid on Christmas, having been accompanied by the knowledge that this change might make it easier to function in work, social, and other similar areas.

These aids are still Phonak, what sounded when the audiologist read them like a string of letters and numbers that, she says, means they’re “really good”. We get them in, with my new molds that seem to fit fine, with no issue. They feel as my loaner aid had: skinnier and with a single volume control on the back of each. Like my previous Phonak though, and I would guess most modern aids, they work together to ensure that I have the best hearing profile in any place I night find myself. They also use the same batteries, sized 675, that seem to power my loaner for nearly a month apiece. As she points out though, these aren’t likely to last that long due to their sharing power and the like. I am ok with that, but curious how long they will indeed last.

When turned on, the first thing I said was “the sound is just cleaner”. By this, I think I meant that there was less vocal distortion? I’m not exactly up on all the correct audio terms, but it just seems more natural to me somehow. The other aids had a lot of bass, but they tended to blend everything together far more than what I am currently experiencing. I was happy to have T-Coil back on both, and the ability to listen to the phone and headphones played through both aids, even if held only to one ear.

And then for the fun part, a venture into the larger world. I was kind of bummed that my Uber driver really did not say much, as I wanted to see if theyb would be more effective when cruising on the Interstate. But in going to work today, I found that I could much more easily har conversations on the bus, and even being in this typically loud workshop was not too bad. Finally, watching TV at home and holding another conversation now presents fewer difficulties. I know that the real fun will occur when I go to a restaurant, wherein I can in theory put the aids into Background mode and hopefully be able to hear a lot more. I am anxious to see how that goes.

And that’s about all I have on that front. Everything’s still being evaluated at this point, but I am thus far quite pleased with what I am getting. No aid will ever completely approximate natural sound, but this one is so close that it reminds me of what I have ben missing for so many years.

The Winds of Change: On My Birthday and Florence’s Arrival

O how they blow, the mighty winds of change. Isn’t there some sort of poem that starts that way? I don’t know, but the idea of wind changing physical and personal landscapes goes way back, I’m sure.

Three years ago this time, I stood along the shores at North Carolina’s Wrightsville Beach, listening to the waves’ roar for the first time in 13 years and marveling at how tiny I felt. As you read this, I hope that beautiful beach is avoiding total destruction by what had been one of the largest hurricanes ever to take a shot at us. (NOTE: I’m writing this on Wednesday night and setting it to run at the time of my birth, and thus I am not exactly sure what this mammoth storm has in fact done). While it does seem to be weakening some, its size and hurricane-force winds are increasing. I am sure there will be property damage as a result, but I pray that is all that is lost. Stuff can be replaced, lives can’t. Of course I understand there are myriad reasons why some folks were not able to evacuate, and I just hope the best for them.

When thinking about it, I am actually surprised that, at least according to my fallible memory, I’ve never experienced a hurricane on my birthday. It lies smack dab in the middle of peak season, which our WRAL newscasters say is September 10. Hurricanes have, however, followed my trips to the beach. There was of course the infamous Hugo in 1989, which happened right after my family’s first trip to Myrtle Beach, really the first such family trip that I’m aware of at all. I’ve written about that some in my post about our last most recent hurricane, Matthew.

Floyd struck in 99, right after a trip I and others took to Ocean Isle Beach wherein we were given nice rooms in two condos overlooking the sea. Fortunately though, I was too far inland to feel much of anything from that storm though, other than a nice breeze on an otherwise sunny day.

The combination of potentially life-altering storms and a birthday create a situation rife for reflection. While I would much prefer that the physical winds of change have little to no lasting mark, I do hope my figurative winds are about to change things to something I can barely imagine. The push for new employment is at an all-time high, as I’m working with the DSB counselor I mentioned a couple of entries ago. Ideas simmer and calcify, but as of yet the finished product has not emerged. It’s challenging, as it is for most of us adults these days. As I enter my 40th year (turn 39 years old, because we say that wrong) I find myself pondering what “society” would say I should have accomplished at this point.

  • Get married, Checked, though later than most
  • Have 2.5 children, Unchecked, and not likely to be. I don’t know about the poor child who’d have me as a parent
  • Have that house in a cul-d-sac, with said kids and a cute yapping dog, mostly unchecked, but the little dog is present. Homeownership may or may not happen
  • Have figured out what to do with life!, unchecked, This was easier in previous generations as people took whatever they could find and stay for 35 years. I guess now though it means entering a career path and finding how many ways to play that out.

So happy birthday to me! I guess I’ll enjoy whatever’s left of the sun, then hunker down with a good book or five and hope we manage not to float away. If you are anywhere near Florence, please stay safe and seek shelter if you need it.

Bend But Don’t Break: On the Joys of Navigation

You’re at work. The place is teeming with people, like yourself, who are totally or partially blind. Lunchtime arrives, and the mad dash for the break room begins, so that you and everyone else might take advantage of the narrow 30-minute window for eating that really ends up being like 15 if you do any kine of preparation (hand-washing, bladder relief, a snack machine visit).

As you round the most congested corner, with visions of peanut butter crackers dancing in your head, you hear a frightening sound. The person bounces off and keeps going, with a perfunctory apology, but the more worrying thing is the alarming noise your cane, which admittedly is already over two years of age, makes. *wobble, wobble* it goes as you tentatively step forward and try to continue. “Oh, great” you think.

This was the scenario that confronted me this past fine Friday. Similar have happened in much more challenging places, like at street crossings where motorists moved so slowly that I was unable to pick up the automobile until its tires rolled over the cane (and thankfully not my toe!). But still, I was annoyed.

The first thing that occurred to me is that if someone managed to bend it so easily with only their leg/shoe/whichever met the cane, I could probably at least make it serviceable but levering it against a chair in front of me with it stuck under the caster and pulling as hard as possible. This did work, reducing the bend such that I could safely navigate outside at the end of the day. But it still feels very tenuous, at best.

So my second idea was to bring up the trusty Amazon app and type “Folding Cane” into the search. After sifting through all of the walking sticks, I located one made specifically for blind people. Distributed, I think, by a seller called Visionu, it only cost me $22. And because my wife is a Prime member and I’ve been included in the household, I could get it delivered to me by today, Sunday.

“Great,” I thought. “I could have my new cane before I even need to go back to work.” This all worked as advertised.

And what you might ask, do I make of the new cane? Well, it’s pretty much the right length, if a little long. But where canes are concerned it’s generally better to have longer than shorter anyway. The other small issue with it is that the pieces don’t fit as snuggly as I might like. This means that, especially if I’m tapping it as they want me to do in the workshop, the cane will slide a little apart at each joint. Not a huge deal, but it could be annoying when walking over bumpy areas, though I suppose its rolling tip should mitigate some of this.

While my little experiment maybe didn’t go as well as I would have liked it is still cool to have such technology available that makes it possible to, in a pinch, quickly replace very important hardware. This stuff has of course been great for us blind folk, from easy ride-hailing services to much-expanded grocery delivery, the latter of which I especially wish had existed to a greater extent when I lived alone. They had a local delivery company called Raleigh-Durham Deliveries, but they charged a $15 fee, and the prices for products were significantly higher as well. They were unfortunately not able to scale as well as they might have liked, and so went out of business. This was in 2010, before the smartphone revolution that has really brought everyone onboard with a more delivery-based shopping system really took off.

Ultimately I am still glad I got this cane in that manner, and will make use of it if I find it possible to do so.

#Norrie2018 Part 2: Personal Development

And I finally arrive with the much-delayed second entry covering our Fourth International Norrie Conference. The primary reason for its lateness is a yucky cold I developed that Tuesday for which I blame the airplane, or rather, the passenger who, I have no doubt, said “I paid $200 for this ticket so I’m going even though I’m hacking up a lung!” The consequences for that when one is sealed in a tube are great. But alas, I have recovered. The second reason for my not having written yet will likely be discussed in future posts.

If this works, I think you should be able to hear a YouTube playlist of the conference’s first day by clicking that link. I suppose that should at least take you to the page where the files are housed.

That Friday, ok what I can remember of it, begins at the bright and early time of 6:30 AM. I take the first position in getting ready, and hey it’s always hardest to drag oneself out of bed when the other is still lying there. Cleansed, I slip into my new, presidential! outfit of a button-down shirt and slacks. Then, as my wife makes her way through the morning routine, I make a couple of passes through my prepared remarks once more to try and feel a little more comfortable with them.

This all done, we make our way towards the conference venue, which for the first time is in a different location: the O’Kefe Auditorium in the main Massachusetts General Hospital. This takes some finding and more walking than our usual facility, a room on the 3rd floor of the Simches Building, but after a slightly unnerving walk through revolving doors, (I’m not the only one who gets a bit claustrophobic in there right? I mean what if they get stuck or someth9ing!) and a maze of hallways, we come across familiar faces. They have a continental breakfast available, and I opt for a blueberry muffin and orange juice. Knowing my constitution, I defer coffee until the break after I have spoken.

People slowly, sleepily file in, including two more of my family members: my Aunt and cousin. I think there were about 50 of us in total, a normal-sized audience for our small but growing conferences. At approximately 9 AM, I head to the front of the room and begin. After some fiddling with the microphone, I kind of wonder if I was too close to it after all as it kind of sounds like I’m eating it on the Youtube link (ah well), I start with my silliness.

“Fellow officers, board members, family and friends I hereby welcome you to the State of the NDA. Oh wait, I’m… not that kind of president.”

This gets the anticipated laughs. Yes we will be discussing serious topics but I always believe that starting things off with a little humor helps people feel more at ease, loosened if you will. And that is a good thing. I continue by introducing each board member and giving a remark about them: Kasey, our tireless secretary who was so much more, Allison the treasurer and speaker organizer, Nate the technology potential guy, Mark the magic webmaster, Ramsey the out-of-the-box thinker when out comes to place, Wendy the International outreach person, and Jan, the last original and now former board member. I am happy to have worked with these folks for as long as I have. Then I discussed the good of the Norrie Disease Support Group on Facebook and talked about what I learned from my Capstone, which was a strategic Communication plan for the Norrie Disease Association. And, I was done, and could relax!

Next, we have what I’m starting to find is the most exciting part of the conference, our keynote speaker. We usually find someone with Norrie who is doing great things, and this year Michael Forzano, creator of RS games and worker at Amazon, spoke for nearly an hour on how he got to where he is. Of special note his participation in boyscoutsl My cousin and I did cub scouts at least, and we were fortunate to find that people didn’t really treat us any differently either. I remember three highlighted of my experience as such: riding an old train, attending a Nascar race, and creating paper airplanes. As Forzano points out, it is very important for blind kids to be teased normally and exposed to as much as possible so that we can function in the big, real world. I appreciate that Forzano keeps it real with us noting that there were some pretty significant struggles along that road too independence. I think this lets people know that it’s ok if one experiences these, but that one can keep going and go much farther than thought possible.

Most of the rest of Friday is given to more Norrie-Related talks. We hear about gene therapy advancements in hearing and balance with Dr. Cory, introduction to Ocular Prosthetics by Kurt Jarhling, and behavioral supports for students by Matt Edwards. I know that Dr. florian Eichler spoke as well, but I am unsure of what as I cannot find it on the YouTube link. I believe it was on continuing the research on Norrie that Dr. Katherine Simms had been doing before him. Again, check out the playlist to hear more as it would take me ages to fully delineate each of those talks. They were great, though.

Coffee is had at the first break, nearly 10 AM, then a boxed lunch of a Caesar Chicken Wrap is consumed at 12. After lunch, we get up and stroll around the facilities, with my wife noting in particular the beauty of the hospital’s chapel. I am mostly just glad to be moving.

Once this long day of conferencing concludes around 4, we decide to go ahead and get our Boston stroll in before retiring to the room for the night. At my previous suggestion, we head over to historic Quincy Market to have dinner. At first, I choose to do something else, because the place is absolutely packed and quite hot. But on walking further, she discovers that there are few other good choices in that immediate vicinity so we venture back into the madness. I get a delicious chili cheese burger and fries from what my bank statement says is a place called Aris BBQ, and while I’m sitting at the table awaiting her return from the long line therein, I record this audio snippet that gives some sense of what it sounds like in there. It’s an amazing place.

And that is the substance of day 2. On this day, I am dog-tired after getting aback, and so after trying to read for a bit I clock out shortly after 9:30. More in Saturday’s post, upcoming.

#Norrie2018: Part I, The Good of qSocializing

A task attempted every time I go to these things, I am daring to try and capture at least some of what I felt at my fourth Norrie Conference in Boston. These have, somewhat through happenstance, occurred try-annually (Triennially)? I don’t know, every three years! starting in 2009. The only year I no longer have documented in any way is 2012, because that blog had long since been disassembled. In the 2015 post, probably the most interesting of those was the first that I made.

In the most current iteration of this conference, much was the same, but also much was different. So, let’s take a look.

The “Fun” of Getting There

Because she loved their service and comfort so much, and I had been told that if I notified them via social media we would be given seats in the front of the aircraft again, I chose to book us on JetBlue Airways. This time, I managed to get nonstop roundtrip flights, with the only drawback. being that they were both super early. On the outbound to BOS, we were placed in row 4. Inbound to RDU, we got row two. Nice. Only, the first flight didn’t actually depart as early as it was supposed to. The scheduled time was 5:45, but they ended up needing to swap planes as the AC unit on one of them was not functioning entirely properly and could thus not be deployed on an international journey. They wanted to fly it to their hub in Boston for repairs, and still transport passengers on that flight. This meant towing jets, changing gates, and general head-achiness when one’s brain is barely working. Fortunately the delayed exit (we ended up leaving shortly after 7:10) caused us not much more than some annoyance as we had no early morning conference plans and nothing but time. I do appreciate the folks at JetBlue for their candor there; we as passengers had no real reason to know the reason for the delay, but telling us shows a respect for our time. And as my wife pointed out, it gives me a little more story. Because nothing in my life occurs without some kind of unexpected twist.

Boston, for the Seventh Time

The flight was largely uneventful, with me chatting some with her and reading a log. I acquired a bag of somewhat stale chocolate chip cookies, but I suppose they did what they were supposed to do and gave me a little bit of a sugar rush. Once on the ground at Logan Airport, we opted to summon a Lyft ride. I knew I had a small promotion through them, thus making the nearly 20-minute trip to the Wyndham Boston Beacon Hills a little more affordable. The Lyft app told us where we were to stand, and she identified the correct vehicle after the 7 minutes it took to arrive. The thing I like about these services, of course, is that we can just slide in and be off as the destination is already programmed into the driver’s GPS. I can also watch the time till arrival as it ticks down. I know taxi drivers have issues with ride-hailing, but what they give blind folks in terms of ease of navigation is not matched in any other sector.

After plowing through insanely thick traffic and making friendly conversation with this man who is originally from Haiti but has resided in Boston for 33 years, we pulled up at our hotel. I’ll ignore my bank account and associated cards for the next little while, as it’s so expensive to stay in there! Fortunately though, the Norrie Disease Association did knock off nearly $100 as compared to what I paid for our 2015 visit. Once checked in and having dropped off luggage and complimentary goodie bags in the room, we headed to Au Bon Pain for some sustenance. She wanted a blueberry muffin and a Latte, but I needed only a good, hot cup of coffee. This did its job in helping me to stay alert during our first gathering of the day.

The River Picnic

Then came my favorite innovation of this whole conference; a picnic of boxed lunches by the Charles River. Located fairly close to the Perkins School for the Blind, this walk also has a Braille Trail that would allow for independent navigation by blind folks if they wish, and, I assume, plaques that describe what one can feel. Unfortunately, well sort of just as we were about to set off on this trail the ice cream truck showed up. I mean, of course I was happy for that treat, but it meant we did not have time to take advantage of that walk. Ah well. I’d done something like that before in the North Carolina mountains, walked a Braille Trail following a long rope that showed us many of the plants and such that grew on that level.

But this all occurred after we had eaten. I believe the food, rather large sandwiches of varying kinds, had come from a place called Luna Cafe. I think I had a turkey sandwich of some kind, oh yes with little apple flecks and vegetables in it. It was good, but I could barely eat it all! They also gave a big chocolate chip cookie and some chips. We enjoyed sitting on the blankets which we were then able to keep as they too had been provided by the NDA, and chattering with so many different parents and family members. We were also breathing a sigh of relief that the rains had decided to hold off long enough for us to enjoy our gathering.

Tokens had been distributed to allow us to get one free offering from the ice cream truck and I settled on lemon Italian ice. That was my first of that, but I liked it It was mostly like a snow cone, but better flavored. I also managed to consume it with very little mess.

There were morning and afternoon tours of the Perkins school as well, but given that we had done this in 2015, I opted to just partake of the picnic. So when the return shuttle bus came at about 1:35, we barely made it onboard and back to the hotel before crashing for the next three hours. These conferences are always exhausting for me, though also quite enjoyable.

More Networking Under the Lights

The next social began at approximately 6:30. Held in a room in the Simches building at Massachusetts General Hospital, this experience was generally better for those of us with limited hearing than the previous one had been. The room was large enough to allow us to spread out, and my cousin, a board member with Norrie and I stood at a standing table wolfing down finger food and Sam Adams (because you should drink Sam Adams if you’re in Boston) and discussing any and everything for nearly two hours. The funniest part of the evening though was that my wife and I, as well as my cousin and his wife, were the only ones other than those who were organizing things, to show up at exactly 6:30. Hey, we don’t play when food is being offered!

And with that, a fun day wrapped up. Because of the nap we had already taken, I was not at that point totally wiped. Even so, I read a little more of a book called The Parking Lot Attendant by Nafkote Tamirat, which I chose because it is partially set in Boston, and called it a night.

Not Your Grandma’s Hearing Test

the day is fast rushing toward me now where I must get my current hearing aids replaced, given preparations for my new employment that might demand the ability to function in a team setting, or on the phone. These aids have served me well for seven years, but there is no question that the technology therein is beginning its inexorable decline, and the technology without has just gotten much better. I want to try and take advantage of these improvements, especially as they relate to background noise.

To that end, I scheduled what my audiologists call a “functional communication assessment,” at the core of which is another, shall we say slightly stressful, hearing test. You can check out my post on the previous most recent hearing test experience from November of 2016, for a bit of comparison, because this iteration was different from any I’ve had before. I suppose it will also be more useful in the end.

Ah, well some things were the same. There’s entry into the soundproof booth, wherein my heart rate increased and stomach dropped, and I immediately muted my cell for fear that some random, badly timed notification might throw me off. Then the audiologist’s assistant, a grad student whom I had met a few weeks ago when last I was there, placed the inserts into my ears in lieu of the aids, adjusted the volume until I could hear her voice, and the fun began.

Playground. Baseball. Airplane. Oatmeal. That familiar list of words was read off, first by her and then by a recording, I suppose the latter having been done to standardize the process a bit. I’ve always thought that some of the variance in how well I hear has to do with a person’s particular voice. The recording they used almost sounded synthetic though, and there were a couple of times where, though I felt I could hear? it, I was not able to process it. I know there is an element of processing difficulty present in my sound interpretation challenges as well.

Then the second part, also relatively familiar, where you have to hear and distinguish when the little beeps occur. First she just played these through the inserts, but then she placed a bigger headset on my head. The thing is, and I think I mentioned this last time, that set vibrates if a particularly loud, low-frequency beep is played. I was to say “yes” whenever I “heard” it, and sometimes I responded just because I had felt the vibration, a small smile of relief tickling my lips. But she was not so easily convinced!

On that last, did you hear that, or just feel it?” I confessed, because if you ask I will tell you. This did provide me with a bit of amusement when I could use it, though.

I was slightly less amused when the third and final portion of testing began. This was the new part. I was to repeat a sentence that had been read aloud to me, or at least as many words as I could recall. With each sentence, the background noise, which sounded like a bunch of people talking at the same time but not quite in the same way that one might hear in a restaurant, was turned up a notch. I spoke the first couple of sentences ok, but by the time we got to the full background noise I pretty much just sat there. I know that this is the biggest challenge I face in my hearing loss journey, and really always has been. I like to believe that I am making strides in this area though, because it is mandatory in order to fully fit in with my new set of marital relatives. One of their hallmarks is eating out in restaurants, and so I adapt as best I can.

And after some fine-tuning, in which she had me rank the comfort level of beeps she played in each ear from 1 to 7 to establish parameters for my future aids, we discussed possible options. First, she said my results were relatively stable in comparison to November of 2016. It is a good thing to hear that the loss is not currently progressing in significant fashion. This, I believe, means that I can indeed put off the cochlear implants for a little longer. My two main aid choices are to go with ones that work especially well with the iPhone, having some bluetooth capacity; or to get a pair that should do a better job handling background noise. The former are made by a company called ReSound, while the latter are Phonak, my current brand. If I stick with my current brand, not only do I get those potential improvements, but the quality of sound should also be mostly the same. This would mean less adjustment when I put the new ones in for the first time. While I did kind of want to get my hands on the bluetooth model, I am fairly tempted to just get the new Phonak and handle phone calls and streaming audio from my iPhone as I always have.

I won’t be handling anything for a while though, as those things are expensive and not covered at all by my insurance. This means I will attempt to reinitiate my case with the North Carolina Division of Services for the Blind, and hope that they will be willing to help me with this important acquisition. The mid-level are around $4,000, while top of the line come in at about $5,500. The latter would be most preferred, but I think I could function with the mid-range ones if necessary. She said the lowest end would kind of work, but I would see little in the way of noise reduction with them.

So that’s what I’m up against. I will get the wheels churning immediately and see what can be drawn up. But as always, I appreciate the fine audiologists I have at the UNC Hearing and Communication Center, and feel that I benefit from being under this university’s umbrella. Next entry? Probably from Boston as we get ready to head to the Fourth International Norrie Conference on August 9! Look for those posts soon. Till then.

Two Miles Per Hour: On Book Writing and Other Summer Pursuits

My title comes from and old Will Smith, (Fresh Prince?) song called Summer Time, and it referred to the desire to move at a snail’s pace in order to show off your newly cleaned car. I’m primarily using it in reference to the idea that I am writing a book! Well ok it’s only at 6 pages so far but! but! I am starting to see where it might be going. Here’s the premise, as it occurred to me while doing the day job, because that’s when I have ages to sit and think.

Two brothers, from a large family consisting mostly of girls, both have Norrie Disease and that, among other things, means that they are very close. One brother decides he wishes to head off to college in the hopes of changing his life, while the other remains at the sheltered workshop that has employed them for years. A sense of resentment emerges between them, resulting in a series of actions that permanently change both of their lives.

Yeah yeah, it of course has pieces of my own story. But it’s also a work of fiction, so the occurrences will be a lot more dramatic than anything I’ve ever experienced. I suppose that most “real” writers would not divulge their idea until they are a lot farther into the project, but no one ever said I was disciplined. Can I even make this works? That remains to be seen, but I hope to keep pumping out a page a day for close to a year. The launch date was July 4th.

Speaking of things that I hope will launch soon, we are coming down the stretch to what will be my big summer event, attendance of the fourth International Conference of the Norrie Disease Association. This is my second as president, which basically means I was supposed to have a basic idea of what has gone into planning, and am to give a speech once there. I can’t say that I’ve done a stellar job at the former, but I am trying to rectify this to some degree as we come down the stretch. And on the speech, one thing I learned from grad school is that it will be better for me to write the entire script than to try and use an outline. Then I only have to think about “how to say it” and not “what to say”. So we’ll see if I can cobble together something decent by August 10, or in reality a whole lot sooner. Like this weekend?

And to get back to my writing for a second, I often her it told that a good writer should also be a prolific reader. To that end, I am aiming for sixty books completed this year. I only made 29 by the halfway mark, sadly, but I have three in progress now and if I can wrap them all up by the 14th I may have a shot at 35 by the end of the month. More important than quantity though is to learn from the structure of people’s stories. I definitely think I’m getting that part down.

And that’s abut the meat of my excitement. Even the day job may be getting interesting soon, with possibilities of training for new and better positions, but I will write about that if it actually happens.