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).