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.

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.