Monthly Archives: April 2016

Visions of Sugar Plum Fairies Dancing… Why Not?

I finally went to a dance performance. My goal was to see if I could follow the movement, appreciate a relationship about some aspect of what was happening visually and auditorily.

When I was in Chicago last time, I watched Swan Lake with Franklin and Debra, the people who have been hosting me when I’m in Chicago. The original plan was to watch the Nutcracker back when I was there in December, but then the weather got in the way. I didn’t think I could tolerate the music from the Nutcracker outside of the holiday season, so we opted for Swan Lake this time, since I had some vague idea of the plot. I wasn’t sure if I’d be able to see anything at all on a TV screen, although another study participant once said something in our private blog about seeing some movement while watching a sitcom.

Anyway, I was able to see some movement on the screen, although I can’t explain what made me able to see one dancer and not another. I’m also not sure how meaningful the motion I was able to see was. Toward the beginning, I focused in on one dancer where the movement in my head/on my tongue reminded me of one of those lamps with the band of light that bends and folds and twists inside out in an endless combination of movements. I doubt that I was actually capturing any of the dancer’s arm and leg movements although it was entertaining to observe whatever it was. I also couldn’t see enough to decide “That seemed like a festive movement,” or, “That seemed like a fearful movement,” as the figure went across the stage, although that was my best hope. I guess my biggest disappointment was that I was unable to see anything from this one scene that is supposed to be entrancing. The bad guy, Knight Rothbart, has captured all of these pretty maidens under a curse where they are swans during the day and maidens at night. In this particular scene, all of the swan minions are dancing together, captive to Rothbart. I think the point is that they’ve lost their identity and autonomy. Of course, I wasn’t going to be able to see them all looking as anonymous as possible, but I at least wanted to grasp the impact of the rows of swans simultaneously moving to the music. Unfortunately, I wasn’t able to capture any of that. It was exciting to see anything at all, but that’s about as far as it went.

The performance I went to in person was called Cirque de la Symphonie. First of all, this was probably not the best one for me to go to. Back in January, Boulder Ballet and the Boulder Philharmonic Orchestra performed Rodeo. At the time, I was a little hesitant, worried about how the device had given out on me before the Nutcracker, so I just didn’t want to commit to getting a ticket. In the end though, it probably would have been the perfect ballet for seeing as much as possible. Because they put the orchestra up on top of the stage with the dancers, the dancers have a very limited space to move around in. Apparently in Rodeo, they stayed within a 10’ piece of the stage. That would be perfect for the Brainport, because then I could zoom in and not worry about having to follow movements around the stage.

All that being said, I went to Cirque de la Synphonie, which is basically like Cirque du Soleil, but with a symphony accompanying them. Again, I could sometimes catch the movements of a person around the stage, but any of the specifics of what was going on were lost to me. So… I’m going to go ahead and tell you that this one guy was juggling live chickens and the chickens laid eggs while he was juggling them and then he was juggling the eggs while still juggling the chickens… and this woman had flames shooting out of her toes and she did backflips while roasting marshmallows… or at least that’s what I saw, and I’m sticking to it, damn it.

Shortly after going to this performance, I had to send the Brainport back to Wisconsin for its 3rd round of repairs. Apparently I’m hard on things? Although Meesa assures me I’m not, and it’s just that I got one of the first ones they made, so apparently they hadn’t quite worked out all the bugs. The problem this time was sort of interesting though. I went on a couple of walks, trying to work on my mobility, since I didn’t do such a great job on that at my last assessment. On these walks, things just didn’t quite look right, although I couldn’t figure out what the problem was. I was getting frustrated, but I just told myself that I had to stop trying to get this version of things to look like the visual world did, and instead learn to interact with this version of the world. That meant just observing a walk, waiting for patterns to show up, instead of trying to “see” with my tongue. But one morning, I decided to work on cooking an egg in a frying pan, now that I have spatulas that are light enough for me to detect them with the device. As I moved the spatula into my field of detection though… even though I was holding it with my right hand and it was coming in from the right… I could swear it was moving from left to right across my tongue. I kept playing around with this, and there was no question, the movement was backwards, upside down as well. I spent more time, trying to see if objects were flipped as well, and although it was never indisputably clear, it sure did look that way. (Don’t worry, I did take care of the egg and remove it from the heat in the meantime, no burned egg). I was wondering if the reversal was in my brain or with the device. Sheepishly, I wrote Meesa one more email, who reassured me that I finally had a problem that had shown up with other people as well. On the positive side though, I should get the Brainport back by late Monday afternoon.

So, a couple of disappointments since my last blog, but I wouldn’t change any of it. I’m curious what things will look like through the recently gutted and rebuilt Brainport. All of that aside though, viewing the world through the prism of wanting to experience as much as possible through the Brainport has challenged me to try things I wouldn’t have otherwise. I wouldn’t have tried watching Swan Lake or Cirque de la Symphonie, and next week I plan to go to the Chocolate exhibit at the Denver Museum of Nature and Science, pausing to experience the escalators in Union Station, because I hear rumors that’s an interesting sensation. I will let you know what it’s like to lick a moving escalator, without acquiring about 46 different infections.

6 Month Check In

I went back to Chicago for my 6 month assessment. Scary. It’s hard to believe that 6 months have already passed.

This time the hiccup in going to Chicago came from the Brainport dying a few days before I was supposed to leave. It had problems pretty much from the time it was repaired last time, but I just learned how to work around its quirks and it functioned well enough. We thought it would make it through the assessment, but no such luck. As a result, we had to bump back the testing 2 weeks, while I sent it back for repairs. I got the device back 5 days before leaving for Chicago, which was really important to me. I confess to feeling some anxiety about needing to perform well. I was afraid that being without the device for 10 or 11 days would lead to me losing everything I’ve learned so far. Okay, my anxiety is probably a little extreme, but I’m also going to say that it wasn’t completely unfounded.

I can’t explain exactly how, but things feel/look different with the most recent repairs. I think maybe the stimulus feels more vibrant, not necessarily stronger, but it’s just sharper. Before I left, I didn’t have time to go outside and look around, I focused on looking at words and signs, but I’m curious what it will be like now. The words, what I was most excited about were also probably the most different. On the first day that I tried to look at them, I could not make sense of what I was seeing. I could see lines, but it was just an abstract jumble of letter parts. I was frustrated and worried that Meesa, the assistant director of low vision research, and the person I report to on everything, would think I’d been lying. At some point though, you’ve just got to put everything down and move onto something else. I did that and came back to the words the next day. The lines made a little more sense this time, so I adjusted and found different combinations of settings until I was able to identify part of a letter and then a whole letter and then where it fit into a word. It gave me a little bit of confidence to know that I could read letters again, but it was still harder than before I sent it back for repairs. By the time I went through the deck of flashcards, I was back up to a speed comparable to before the Brainport died, but the words still don’t quite look the same. It’s okay, because I’ve been able to catch up, but I still think I liked the sharpness I got before. I used the edge enhancement setting previously, and it creates this clear, thin line. It’s like running your tongue carefully over the blade on a butter knife versus detecting the ridges and indentations on a sand painting; it’s possible to do the later, but easier to do the former. However, I suspect that I will adjust to a new norm over time and like the new version just as much in the end. One thing I wanted to do right before I had to send back the Brainport was get a very simple line drawing and see if I could make sense of what is going on. I guess the bathroom, stairs, and caution signs are sort of like that, but not exactly. The first one I’m going to try is a drawing of Snoopy.

The testing this time was similar to last time, but not identical. When I was doing the object identification, Meesa also asked me to reach for the objects. This is not something I’ve really focused on very much, so I was pretty bad at it to start. I was reaching for the right object, it’s just that I completely missed it, falling too short each time. I had 20 tries to work on it though, and I did improve. By the end, I got it pretty much every time, just still erring a bit to the left for some reason. I also have to say that I got 2/4 of the black place setting items. I’m not supposed to be able to see them, because it’s black on black, but a bright sun was coming in through the window, leaving enough reflection for me to do some educated guessing. I need to go back to doing more to work on my hand eye/tongue coordination so I can get better at the reaching.

I did great with reading words. I got 9/10. I missed “now,” reading it as, “how.” Last time, Meesa gave me all the time in the world to pick apart a word and figure it out, but this time she gave me 2 minutes for each word. It never took me 2 minutes. Now I’m working on reading sentences on my own, even though I don’t think the testing will ever ask for that.

I then didn’t do quite so great with the obstacle course. I had a slightly harder time finding and following the line of white tape. It’s like what I experienced trying to read the words, the lines just aren’t as clear and sharp as I’d like them to be. I have some thoughts on that, but I’m saving it for another blog. While walking down the tape line, I needed to avoid an obstacle and look for doors and windows and a sign. I found the doors and windows, but I hit the obstacle. (On the other hand, I did work hard to avoid a reflected spot of light. Whatever). I also missed the sign. I was able to identify the signs though, so there you go. It’s both overwhelming and exciting to be able to perceive all of this input, but to not necessarily be able to process all of it.

Then, as the little perk at the end, they showed me a new app they are developing for the tablet. The app currently has a very small vocabulary of 3 signs—the men’s and women’s restroom and exit signs. You go into the app and select the kind of sign you want to find. Then, as you are scanning the walls, looking for that sign, the tablet will vibrate when the sign comes into your range of view. I’m excited to test this out in some hallways that I know must have a restroom somewhere, but where I haven’t bothered to look. I’m also curious to see how much variation it can tolerate. I know the man and woman figures on those signs are supposed to be pretty universal, but there has to be some variation. Also, I wonder how different combinations of color might impact the results. This is all about exploration anyway.

I’m grateful for the chance to have this experience. When the Brainport was gone, I was aware of missing the ability to access the kind of information that I can truly only access through the Brainport, and when I got it back, I was giddy with once again being able to detect ink on paper. Over the last 3 months, I’d say that I’ve focused on completing tasks related to reading and drawing, and I wonder if this is because I have absolutely no other way of accessing something written or drawn on paper than through the Brainport, whereas I do have other ways to access information about a sidewalk or an object in front of me or a doorway. After the initial training and my 6 month assessment Meesa completed a couple of questionnaires that ask questions about things like how competent, confident, and socially integrated I feel. She will also ask these questions at the end of the year. They are hard questions for me to answer. I want to tell them that the Brainport has changed my life in all these different ways. As much as it tears at my heart to say it, I actually can’t say that it really has changed my life after using it for 6 months. Meesa asked me to think of daily tasks that might be improved by the Brainport, but I guess that I feel comfortable completing my daily tasks in the ways I do, so it’s hard for me to think of using this device that still feels fairly foreign to me to actually make them easier. I guess she did ask me to try sorting my laundry with it, and I was able to do that, but the fact is that I don’t sort my clothes, so that’s sort of irrelevant to me. But what I would say most of all at this point in time is that I’m incredibly grateful for the opportunity to explore the world in this way. It’s like I’ve been given a new sense to try out. In the end, I might decide that I don’t get enough information to make it worth it, but I love getting to see what it’s like and decide that for myself. And since I have to, I’ll just suck it up and answer questions honestly, because that’s what you do when you are exploring.