I’m going to take on the no doubt monumental challenge of capturing some of what I experienced in my attendance of the Third International Norrie Conference. The Norrie Disease Association, a group over which I currently preside, has put on these conferences every three years starting in 2009, and thus far I have had the pleasure of going to all of them. Each time, I actually leave feeling like a big change has occurred in me, I guess because I see people with Norrie and those who work with us going places and working to understand better ways of managing this disorder with its varying modes of presentation. This year was no different.

Thu, 8/13

It is a rare privilege to be present for another’s “first”. Even cooler when that thing is something I love, and know a little about, or at least enough to hopefully reassure.

The plane pulls slowly out of its gate, and her grip on my hand increases incrementally as we crawl toward the runway. I feel the pulse of anticipation that passes through me like the kid I still am. She sits quietly beside me.

“What are you thinking?” I ask.

“I’m praying, actually!”

Fingers drum on the armrest as we make that final turn and throttle up to full power, then the amazingly smooth ascent into the 7 AM skies over Raleigh-Durham International Airport (RDU).

“Ah, that wasn’t too bad,” she says as the incredible view unfolds below. While I tell her of stuff that happens with the plane, she describes how that view from the left-side window seat appears. I enjoy asking all of my seatmates to do this, because everyone brings his or her unique take to it based on what they tend to notice.

The most interesting thing I learn is that the feeling of near motionlessness we get is mirrored in the visual sense as well.

“It looks like we could get out and walk faster than this,” she tells me as the buildings shrink to sticks, then only land and fairly large bodies of water can be made out. Well that, folks, is an experiment I don’t think I’ll be trying, at least not without the right equipment, whatever that is. I suppose that perception of slowness is a trick of the brain, so that it doesn’t drive us, and by extension itself, crazy.

According to the seatback screens, it takes us no time to drift over DC, Maryland, Delaware, New Jersey, and New York City. At some point, we make a quick jaunt out over the Atlantic.

Whoa! It looks kinda like we’re gonna crash into the ocean,” she says. I guess we have begun our initial descent at this point.

I don’t feel the landing gear engage, and neither do I note the bumpiness that usually accompanies final approach. I only know that we are about to touch down because she says so. This is my first flight with JetBlue Airways, and I wonder if the aircraft they use, Embraer 190’s, just tend to fly better than almost everything else. We only have about a minute of turbulence during the entire journey, definitely a deceptively smooth first-time flight.

Into the hustle and bustle of Boston Logan Airport, where we grab seats and try to ascertain the time at which my cousin and his wife will arrive. I can think of no good way to do this though, so eventually we just settle in and I listen to her people-watch. Families with four and five children in tow, infants strapped to bodies; carts piled with so much luggage that someone seems to be moving in. Fascinating stuff.

Finally the rest of our expected party arrives, and we schlep over to the US Airways Terminal to meet them. By this point, it is about 10:15. A minivan cab is summoned for the quick trip to the hotel.

This is my 3rd stay at our current location, known previously as the Holiday Inn but now converted to the Wyndham Boston Beacon Hill. The price hurts!, but relative to everything else I guess it isn’t too bad. I’m just opting not to check my bank account again till next year.

We deposit our stuff in our room, yay for early check-in, which I had called about a couple days before but was told I could not be guaranteed, and make our way over to the Whole Foods. She thinks she has seen a refrigerator in our room, and so opts to buy a few little groceries. Unfortunately on further inspection it actually turns out not to be one. I sit at a tiny table and scarf down a blueberry muffin, my first meal of the day.

Back downstairs we go for the Perkins tour, which is due to depart at 12:15. I’ve spent months nearly tearing my hair out trying to organize this, and so it is a relief to have finally come. We pile into a van that seats 12, boisterous conversation bouncing all around, and hit the bumpy road for the short journey to Watertown.

RELATED:
He Talks About Something He Loves
A Perkins blog article about their tour guide, in which I think we are featured in the photo.

The tour is great. We enter the Howe Building, named for the school’s original director whom I’ve talked about in reference to the fictional book on Laura Bridgman entitled What Is Visible. We learn that even the acoustics are thought out in such a way that they can help blind people use echolocation to determine information about their location. The floor slants down on entering, and also features lines and texture changes that can be used for wayfinding.

We are told of the school’s history, much of which I repeat as he states it, again having gotten it from the book. Some ask what the school is doing to assist deafblind individuals, and they state that their emphasis is more on children, but they can help people connect to places where assistance for adults can be had. The National Deafblind Equipment Distribution Program, (NDBEDP) the fine folks who helped me obtain my Braille Display, was mentioned.

Perkins also provides a wide array of service for mainstreamed blind children, including Orientation and Mobility, reading material, and instruction from Teachers of the Visually Impaired (TVI’s).

All of that is well and good, but without question my favorite part of the tour is the tactile museum. Here, they have animals that I’ve always wanted to feel such as bears, foxes, and a couple different kinds of avian species. I also explore a model Space Shuttle with attached rockets, another thing I’ve had a hard time imagining, and a few other gadgets. Once my girlfriend looked up from showing me some of these materials, we amusingly discover that we have been left! We quickly make our way through doors, up stairs, and find our group just as folks start to trickle back out to the van.

Next comes the social, back over at the hotel on its oddly numbered 15th floor. (I guess for superstitious reasons, they have no 13th floor.) The social is absolutely buzzing. It still amazes me how quickly our attendance numbers near doubled, a very good thing but one that had us pulling out all of the stops to get things together at the last minute.

The food offerings from the hotel were… interesting. A shrimp mango shooter, or at least I think that’s what they said it was. I just pluck the shrimp out and eat it. Some pretty god flaky pastries and bread with cheese, too.

We stay in this room for a couple hours, as first my cousin, who has hurt his finger with some weights such that he must have it constantly re-bandaged and take drowsy-inducing pain medications, shows up to the party from a quick nap. Then I speak with one of the next day’s speakers, Dr. Colburn, about the apt topic of trying to hear in such a noisy environment.

“Yeah, we talk about this all the time,” he says. “We call it the ‘Cocktail effect’, and I don’t mean the alcohol!”

He feels reasonably certain that technology can be improved in coming years that will make it much easier for us to cope in such circumstances. That would be a huge relief, I can tell you. As it is, I and my head are relieved when we depart. I enjoy mingling, of course, but it is very stressful.

We accompany my cousin and his wife to the same Mexican restaurant, Anna’s Taqueria, where things got a little crazy when they wouldn’t assist my cousin’s wife in helping the two of us in 2012. She figures it will be better this time now that I have my own guide, and of course it is.

And this pretty much constitutes day 1. I already find myself to be quite exhausted, calling it an unusually early night after I try to read some at 9 and most of it isn’t computing. It is, on the whole though, a satisfying day.