Monthly Archives: November 2015

Just North of the Tongue, the Nose

Well, my Brainport is not working right now, and I’m pretty bummed. Sometimes I wonder if I have some sort of special technological curse, but I’m probably not really that special. I have absolutely no idea what is going on with my device. I used it on Tuesday night, and when I went to use it on Wednesday, it wouldn’t start up. I still keep trying it from time to time, just in case, but the miracle has yet to occur. I suspect I’m going to have to send it back to Wisconsin on Monday, which will put me out of commission for a while. It’s hard to have it taken away… which does make me think of what happens at the end of the year… but it doesn’t help to dwell.


Since I can’t do anything with the device for the time being and I’m going to miss the Nutcracker (just want to point out real quick here that the Boulder Philharmonic is set on their no refund policy, even in exceptional circumstances, so I’ll aim either for a performance either in January or early April if anyone wants to get in on that) I thought I’d take a minute to tell you about something else I’ve been trying to do, inspired by the Brainport, although not directly related.


Although most people would have no reason to know it, the car accident actually affected all of my senses. Losing my vision has the most obvious impact to others, but I’m aware of the other ones. In the accident, I completely lost my sense of smell. I’m not sure why exactly. I had absolutely no feeling in my face for a while, and maybe those nerves were messed up too. I had a surgery where they separated much of my flesh and tissue from the bones and the nerves had to recover from that. I don’t know. Anyway, for whatever reason, I had absolutely no sense of smell. A couple times during physical therapy, they pulled out a set of jars with various smells and they would ask me to identify them, but I just kept telling them I had no idea. I’m not sure they fully believed me, because they kept trying different ones. It definitely impacted my sense of taste. I could still sort of taste things, but most things did not taste good and it was a depleted flavor. Savory things tasted better than sweet ones, but I still had to work hard to find a taste. But what surprised me most about the loss of smell was the uncertainty it left behind. Humans probably identify vision and hearing as the senses they use the most, followed closely by touch. But other than perfumiers and chefs, people probably generally regard smell and taste as nice, but not really necessary. I think, however, that smell is constantly detecting, processing, and delivering information in the background that we then integrate usually without fully noticing it. After my accident, I was struggling to figure out information about the world, and I felt the loss of smell acutely.


Over the years, I’ve regained my sense of smell. I think it’s back to normal, but I might have just adjusted to what I got back… I don’t know. And that’s where the uncertainty remains. I do not trust my nose. I know I rely on it for information, but I don’t do so willingly. It’s the poor kid in the back of the room, raising his hand, shouting out the answer, while I look everywhere else for information. I have a hard time identifying smells or even being certain if they are there.


But when I first learned about the Brainport almost a year ago, it got me thinking about ways to more fully experience the environment, and I started to think that maybe I should work on developing my sense of smell. More recently, a project at work inspired me to reorganize my spices, so this seemed like a perfect opportunity. Up to now, I put the spices I use more frequently in the front and then buried everything else in the back. As a result, I only use the same four spices. But I could also put the jars into larger tubs, organized according to the kind of spices that often go together. In this system, every time I go for the cayenne, I also grab the cumin and turmeric and vindaloo mixture; maybe I’ll use more of those neglected spices if I’ve already pulled them out. I was thinking about how to label them… but then I started to wonder if I could identify them by smell. I don’t trust my sense of smell, so I was skeptical, but I started sticking my nose in there.


I can’t figure them all out immediately. The mangled basil plant that somehow keeps holding on in my window doesn’t smell like the dried basil in my cabinet. The rosemary that I brought in before the latest freezes smells more like the dried rosemary from the grocery store, but it’s still not quite the same. I have a tarragon plant that never got big enough for me to pull anything off, and since I’m determined to put it on some pasta eventually, I’ve got it sitting next to the basil, but every time I smell it, I worry that it’s not going to be strong enough to notice anything. The lemon verbena I dried smells absolutely like lemon. Most recently, in something I never would have dared to do in the past– because it seems like something a smell/taste confident person would do- I threw together rosemary, mustard, and cherries. Next, I want to stick a beet in my carrot soup and put a dollop of goat cheese on top. I get nervous about cooking for others, because I don’t trust my sense of taste either. But I like finding a little bit of confidence to take some risks. So who knows? Maybe I’m making some progress… or else the people around me are going to have to learn to be honest that they weren’t a big fan of my culinary contributions. I suppose the lack of a Brainport for the next however long will leave me more time for the herbs and spices.


A Walk in the Park… or Around the Track

Over the past couple weeks, , I had a chance to spend some time on the track and then walk home. I want to get comfortable enough following the lines to maybe even be able to run some day. It probably seems pretty easy to follow a single line in circles, but I have to admit that it hasn’t felt quite so easy to me. Or I don’t know, maybe it doesn’t seem easy to you. Maybe I’m projecting some of my own surprise at how hard it can be to learn to obtain information from the device onto you. I have to admit that part of me expected to have it be a little closer to being able to see again, a little easier. I know how to use and process information from my eyes. I have to learn how to do it with my tongue. Anyway, all I mean to say is that I’m trying to get better at walking around the track, but I’m not quite there yet. Here are some videos of my experience.

As is fall in Colorado, these days were a rush of sensations. I’m excited to add electrical stimulus on my tongue to all the smells and sounds and movement on my skin. As for the videos, I make no claims to having any skill with a camera. (This is what happens when you give any old person a camera on their phone– they’ll use it and then make everyone look at their amateur efforts.) I do try and narrate the videos for everyone to give you some idea of what I’m trying to do and what’s going on inside my head, but it also shouldn’t be totally useless to the “less visually able” amongst us.

This first video is of my shadow. I was able to see my shadow. Sorry, a video doesn’t really convey what it’s like for me to get to see my shadow and to be able to see it moving and all… but I guess you’ll just have to come hang out with me in person. On the video, I realize that my describing what the shadow is doing doesn’t really show you that I can see it, because it’s my arm, so I obviously know I have it up, but whatever.

I can try to explain it to you a little… hopefully without sounding too self-absorbed. I confess that I am curious what I look like. The last time I saw myself, I was 14 and it was in the reflective metal that passes for a mirror in a poorly lit forest service campground bathroom. I sometimes hate that other people can look at me and pass judgment, but I can’t look either at myself or them and pass judgment as well. In the long run, I’m sure that I’m better off for not being able to judge based on appearance… but I still wish I could have access to that information. The other day, I tried looking at myself in the mirror. I could see a form that I’m pretty sure was the outline of my head and shoulders. (It’s a little hard to tell, because normally I would move something and if I can see the movement, then I know I’m looking at what I think I’m looking at, but if I’m trying to look at my head and then I move my head, which is where the camera is… well, it obviously doesn’t work so well). I can’t really tell what I look like from that, but it is something I’ll try again, because I’m curious and why not? Back to the shadow though, it’s just one more thing to look at, and it winds up being full of meaning to me. No, it doesn’t really tell me what I look like, but I like looking at it. As a kid, I remember watching my shadow as I walked along. It’s an abstraction– one step removed- from my own form. It lacks all the details, it smooths out the bumps and cracks that are imperfections. I would watch my shadow as this version of myself I could aspire to be—she was the better version of me. I realize this was sort of a child’s magical thinking, but I still love the idea of getting to see my shadow now.

This second video is probably way too long, but it’s me walking around the track. People watch other people run around a track. Just pretend it’s one of those very exciting races… really slowly…

This third video is of me trying to figure out what information I could take from the environment, and then deciding how to interpret it. I am looking for the bleachers where I tied up Albert. There are horizontal lines and sometimes vertical lines, but I’m not sure what they are. I need to detect the lines and then go up and touch them to know what they actually “look” like. It’s a matter of making connections between the patterns on my tongue and other kinds of information, mostly what it feels like to my hands. I eventually want my brain to know what something would feel like to my hands, when I just look at it from a distance.

This fourth video is me walking home with Albert. I’m not walking entirely alone like on the track, but I’m just holding onto his leash. He’s not guiding. Yes, I’m definitely getting info from him, because we communicate through tiny gestures, but I’m doing a lot more of the work than normal. I walked all the way home this way. There was one spot in the very beginning when I was trying to find the sidewalk where I grabbed Albert’s harness and he took me straight there, but that’s the only time he was actually working/guiding. One great thing about just walking along and observing what I happen to notice, instead of looking for something specific, was that I saw patterns that might have been harder to find if I were looking for them. The biggest one was street crossings. I was surprised by the first couple when the sidewalk sort of fell away beneath my feet. But by the 3rd, I could see it coming. I still didn’t quite always get it coordinated so I’d know it before my feet found it, but I got closer.

And this last video was my favorite part. Yes, I do go wandering off the sidewalk, but it’s because I was loving the feel of the leaves on my tongue. The texture is enjoyable. Textures are something I’m starting to notice. A friend took me to look at some great Halloween decorations, and it was interesting to feel the tree bark on the trunk and then the branches with leaves. Another friend gave me a bunch of lilies and it’s fun to look at them with these curved lines and spots that are crinkled or ruffled. Walking home today, I got to just experience the texture of shadows and bushes and grass. It’s funny what I couldn’t see though—people or cars. So, if you are walking around the sidewalks of South Boulder… beware of me, I’m liable to run you over… only with the best of intentions of course.

I’m not ready to run a race on the track or to run 105 consecutive laps for a marathon (yes, a friend did that), but if I take the time to appreciate what I encounter as I move toward my end goal, there is a lot. One of the things I miss most about vision is as basic as having that constant stimulus, a stream of interesting input. Of course, if you pay attention, there is a lot to observe that goes beyond vision, but all efforts to be positive about blindness aside, I just miss looking at things. The Brainport is simply giving me some of that.

What Is Vision Anyway?

One of the first questions people ask me about the Brainport is how stimulus on your tongue can create “vision.” In order to answer that question, you have to look at exactly what vision is. Vision is a collaboration between the brain and the eyes to create a series of images that are an impression on the world. We claim that we know exactly how things are, because “I saw them with my own eyes…” But our eyes are not a direct connection with the outside world. Really, what we see starts with some information from the eyes, but the brain then fills in information from previous experiences and what makes sense to create a complete image.

My friend was recently listening to a song called Heirlooms by Pale White Moon and she gave me an ear bud to listen for a minute. As I listened to the combination of plucked and bowed strings, I had this strong rush of sensations and memories connected with the south of France. The strangest part of this experience is that I’ve never been to France. Other people have described their trips to France to me, I’ve read some books and watched some movies, I know I’m supposed to associate southern France with things like lavender and cheese and wine, so I have imagined whole pictures that come out of the small pieces I have actually experienced. This simple melody at a playful tempo created connections between bits and pieces I’ve been told about France to create a sense of experience that feels like reality. It shows me how much the mind does to bring together disparate pieces of information from the senses to build a cohesive version of reality.

In my own experience, the sensory organs and the brain do not always communicate very well with one another, sometimes one is planning for a trip to Mexico, while the other is planning to build a dog house. When I first started to gain some level of consciousness after the car accident where I went blind, it was hard for me to understand that I was blind. I had absolutely no memory of the accident, so I didn’t really know something had changed. My eyes physically could no longer receive information, but my brain didn’t know that. As a result, I continued to see. Some of what I saw made sense, if someone was standing beside my hospital bed, I saw a figure there. With other details, my mind took a couple of facts and went wild with the rest of it. Over the days it took for me to figure out I was in a hospital, I kept thinking I was laying in a hospital bed in a field of sunflowers. Without any other stimulus, my brain just decided to tell me I was seeing sunflowers all around me. That works for me, I’d rather be there than in a hospital. It was then when I started to regain some sight, even though it was just bright lights at first, that the vivid images disappeared; I had some input from the eyes, so my brain had to start integrating that again. In the years since I got some sight back, I’ve lost my sight again in increments. It was always a little hard to know exactly how much I could see, because my brain would take what information it received from the eyes and then fill in around it. I regularly get it in my head that something is one color, only later to learn I’m entirely wrong. I went running one cold day last winter with Albert, watching the contrast between the dark of the sidewalk and the light of the snow on my right, and Albert running just ahead and to my left. It was also really cold and windy, and because I like my nose and didn’t want to freeze it off entirely, I pulled my buff down over my face. After running for a few minutes, I realized that I saw all the exact same things with my whole face and eyes covered as I did with them uncovered. It was shocking to have such a vivid example of how little of what I see every day has anything at all to do with my eyes.

If what we see is only partially a product of what the eyes tell us, then that leaves a lot of opportunity to find additional ways to create vision. With the Brainport, the goal is to create a new conduit for information that you would normally obtain through your eyes. Eventually, your brain will hopefully create a connection between certain patterns on the tongue and the information you have collected about an object or setting or experience. It’s like when an image accumulates tags—man… sitting… drinking… coffee mug… stool… diner… 1950’s style… jean jacket… baseball cap… night… Nebraska- with every detail, the image becomes a bit more refined and the images in the minds of two different people reading this came to more closely resemble one another. What we regard as a fully factual representation of exactly how the world is, winds up being a compilation of impressions accumulated from a wide variety of life experiences. The goal is for the Brainport to be one more conduit for information.