Monthly Archives: September 2016

The End

It’s over. A year has passed since those first 3 days I spent in Chicago in order to get training on the Brainport. On September 15, I did the final round of testing and handed over the Brainport with all its pieces. There were joking plots for how to get away with not giving the device back, and I had this secret little hope that maybe, when I went to give back the Brainport, Meesa would tell me they just thought I was special and they wanted to give it to me to keep. But that did not happen, and I came back with my backpack lighter than when I went out. I feel the absence.

I have mixed feelings about being at the end. My life was not easier with the Brainport, nor could I access some of the things I miss from when I could see. In other words, I hoped the Brainport might make blindness into less of a pain; it didn’t. I couldn’t read signs, walk down sidewalks without getting overgrown shrubbery in my face, or run freely on my own. I still have only memories of colors and faces and skylines. I never got coordinated enough to make shapes with pancake batter. There were also times when the Brainport was a bit of a pain. I sent it back for repairs 3 or 4 times. In addition, I felt an obligation to perform well in the tasks that were being evaluated. I dedicated many hours in the long winter nights to trying to decipher shapes on flashcards and signs that were almost, but not quite, familiar. I’m glad I tried all these tasks, it’s just that I didn’t have the outcome I hoped.

But even more than judging by the success or failure of the tasks, when I have exceptional opportunities, I have exceptional expectations for myself. I always felt a certain weight on my shoulders because of my awareness that I better do and try everything possible in this one year. I truly appreciate the way knowing I only had one year pushed me to try things I wouldn’t have otherwise, but there’s still some relief that comes from being back in normal life. It’s probably my own fault for placing so much pressure on myself, not just letting it be what it is. It is hard though, to know that you have only a limited amount of time to experience the world through a new sense. What if you could smell the world like a dog does? It might or might not be useful, but it would be fascinating. I would not want to get to the end of my year and regret the places and experiences I missed. Despite the regrets that come with it being over though, there is some freedom in knowing that I have done what I can do, I can’t do anything about everything I missed doing, so I can stop worrying about it.

On the other hand, I am truly grateful for the opportunity to use the Brainport and the ways that added another layer to my life, made it more vivid. I loved getting to perceive the things I can no longer sense, such as figures on paper, light in the distance, and the contours that make up the world. I also went places and did things I wouldn’t have otherwise, such as going to the museum and planetarium and out to look at Christmas lights. Even when the Brainport didn’t work, I was better for those experiences. I remind myself now to go ahead and try the things that initially do not seem interesting to me.

As part of the testing half way through and then at the end, I completed a questionnaire meant to determine how much social impact the Brainport had. It asked if my “fill in the blank” increased or decreased during the past year, and then how much—1, 2, or 3. “Fill in the blank” included measurements like willingness to try new things, comfort traveling, confidence with new tasks, satisfaction with my own accomplishments, and general sociability. The Brainport could help with all of these. I rated an improvement of at least a 1 on most of them. The twist was that the improvement was less a result of using the device itself, but instead was more a result of the experience surrounding the device. I’m proud of myself for learning about the Brainport, reaching out to find out if there were a chance for me to use it, pestering the researchers to let me participate even though I don’t live in Chicago or New York, and following all the way through. Traveling causes me anxiety. I like to know where everything is and to have control, and I lose a lot of that when I go to new places. There were a lot of times when I just wanted to work on usual, non-Brainport-related, tasks like catch up on email, but I had to force myself to get up and go out into the world where I’d encounter unpredictable things like streets that curve and cross or bits and pieces of an environment that I can’t quite put together or people that I still can’t see. I chose to start writing about the whole experience, even though I was very afraid it would become just one more thing I didn’t follow through on. The Brainport involved so much that puts me anywhere on a scale from mild discomfort to fear strong enough to make me quit. But I decided the opportunity to interact with the world in an entirely new way was compelling enough to push through my anxiety. I am proud of myself, and that has translated to how I am in other parts of my life. So, yes, the Brainport has changed my life, just not in the way I hoped last summer when I received the call that they were accepting me into the study.

In the week following when I handed over the Brainport, I find myself walking through moments when I wonder what the patterns of light would look like through the device. I’ve also gone for several walks in the evening. I miss following the lines on the sidewalk, but I also feel freedom to go whenever it works for me, not racing the setting sun. Perhaps the Brainport is a bit like the long-time lover after you separate—you miss about 70% of what it meant to be with them, but somehow the 30% is still what keeps you away.

I think most of the significant moments in my life come with mixed feelings. I did not get what I hoped from the Brainport, but I did get experiences that expanded my world. I wanted the Brainport to help me with practical tasks, but it didn’t really. However, I recognize I’ve probably wasted a lot of time in my life, doing very practical things. I am grateful for an excuse to spend more time doing impractical things. Maybe the biggest legacy of the Brainport will be a reminder to seek the impractical.

(And just as a side note, this blog is not over. I’ve appreciated the opportunity to write and connect, so that is one thing I will take with me from the time with the Brainport).

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The Things I See

I have described the Brainport as providing a way to “see.” The sensations on my tongue do translate into fuzzy lines and dots and movements in the part of my brain that processes visual stimulus. But I don’t think it’s quite accurate to tell you it is a crude version of “sight.” If it were “vision,” I would expect a 1 to 1 translation, I would expect the patterns of light and shadow on my tongue to correlate to what a sighted person sees. And sometimes I do get that. When I’m reading letters and words, they “look” on my tongue just like they look when a sighted person sees them. The same is true for signs or searching for doorways and windows in a hallway. Even when I’m trying to identify objects, I’m still looking for one characteristic I can identify, whether it be the overall shape or size or a gap between two parts. In all of this, I’m trying to identify something that I recognize that helps me connect to what I remember seeing.

In this last bit of time with the Brainport though, I’ve spent less time looking for recognizable shapes in exchange for just experiencing whatever comes. I’ve found that the patterns that show up do connect to memories, just not ones related to what something looks like, not ones you might expect.

Sensations sometimes connect to parts of the brain that are attached to a thousand other memories and sensations. There is a plant, I don’t know what it is, but its smell takes me directly to the space out in front of my grandmother’s house. There are three places in Boulder I’ve come across it now. I would have guessed it couldn’t grow in Boulder, too far north, too high, too dry, but each time I smell it, I am transported. I stop, I sniff. I even hope to be able to locate the source of the smell, take a picture, get someone else to tell me what it is. Every time I get a whiff of the smell, I see a place that no longer exists. A sidewalk, broken away in layers where puddles form. A screen door snapped shut when a kid ran down the stairs. The straw bale covered in a torn black cover where they said my grandfather always used to sit. A clay turtle that sat at the top of the stairs to the cellar, next to a trowel. I could take you around the porch, into the house, back out and around the farm, down the county roads with the memories that one little plant triggers.

It is more obvious why that one plant and its slightly rotten smell from my grandmother’s garden would flood my brain with memories of my grandmother’s house and all the people and places I associate with it. But some of what I have experienced through the Brainport has the same impact, even if the connections aren’t so direct. I enjoy walking around and letting it happen, seeing where the connections take me.

IMG_20160818_192728oatmealThis shadow outline of a tree makes me think of a bowl of oatmeal, while this one makes me think of the plaid shirt my best friend in sixth grade was wearing around her waist on the day I realized we weren’t going to be friends any longer.IMG_20160820_122541plaid

Looking at the growth around the creek makes me think of an oriental rug.IMG_20160818_190542orientalrug

IMG_20160818_190756polkadotLooking at this grassy area makes me think of polka dots. It’s not that it looks like polka dots, it’s just that the patterns of stimulus make me think of polka dots.

This sidewalk with grass on either side makes me think of a picture of a boy in a red and white striped rugby shirt and jeans I used to see every time I went into a certain store as a kid.IMG_20160901_191850stripe

IMG_20160820_123800riverWalking along this sidewalk makes me think of walking up a river, of fly fishing with my dad as a child.

IMG_20160820_124245lakepowellOn the same sidewalk, just a little further along, the angles of the lines I see here make me think of a book I read as a child of a boy working in the canyons that became Lake Powell. It felt like a significant moment when I was young to learned that there are people alive now who were around before Lake Powell became a lake. Some of them knew the animals and people who were displaced, and it shifted my own orientation towards the world to learn there were realities different from my own. This intersection takes me back to that developmental milestone.

Still on the same sidewalk, I think of pictures of bucolic New England scenes that accompany Robert Frost poems. I wonder if I think less of Robert Frost because of the pictures others choose to put with his poems.IMG_20160820_130454robertfrost

The Brainport can show me literal components of my world, a street corner, a doorway, a sign. I desperately wanted to use the Brainport, because I wanted access to more of the concrete pieces of what people can see. But I also find that the unexpected triggers that take me to different times and places are another way to travel through the world. I can see the lines around a window here and now, and I can see the frames of dozens of windows I’ve looked through. I can see a car window as we drove at night down roads surrounded by nothing but the slice of shadowy figures illuminated in the headlights. I can see the window of my freshman Spanish class where the white wall and black frame surrounded a few limbs of a pine tree in a scene I thought I’d want to be able to paint. It’s not a bad way to walk through the world.