Search for paradise- my adventurous journey with Artificial Vision Experiment
I wrote a book, 579 pages long. It really happened, every word of it. I wrote it because if I didn’t, I felt something very important would be forgotten.
Search for Paradise, so the title reads. What is this paradise after all?
The paradise I relished
My life as a young boy was full of happiness. I grew up as an immigrant to Canada; learned English in grade 1 while dreaming of things most boys dream about. I wanted to be a fireman, and then a truck driver, then an airline pilot, play with Meccano and hike in the woods with my father on weekends. School finished, and I started a job, enjoyed my freedom of living away from my parents and owning a car. Life was just perfect.
When darkness strikes
But then something happened. I lost my left eye as a piece of steel struck into it during work. I re-adjusted to one eye, not too difficult but the world looked a bit smaller; worst of all, I only had one chance left.
Three years passed, I got married, and began to enjoy family life with my first child; I found my paradise.
Then the worst happened. I lost my other eye; another accident took it away. My world was gone as I knew it, the darkness forever pressing, my career gone. I wanted to keep my family happy and didn’t let depression take its toll, but it was so hard. I retrained as piano technician, trying to learn to appreciate the dark, colourless world. But all the while I dreamt of seeing again. Every single day, I wished I could return to the paradise I left behind.
When my first (left) eye was injured, the foreign object was smaller than a shirt button and made a mess of my eye, detaching the retina as a whole, and the eye went dark. Now that my right eye was totally destroyed, as it succumbed to a much larger penetrating object, I noticed my left eye starting to come back with a hint of sight. After 3 months I could count faint-looking fingers at arm’s length.
It was suggested I go to a retinal surgeon, which I did at the St. Michael’s Hospital in Toronto, but rather than repairing the detached retina as it was hoped, the surgery failed and inadvertently destroyed what was left of my remaining sight. One surgeon told me that blindness was now a part of my life and it wouldn’t change. I just hoped he was wrong.
I worked on new skills, learning to play the piano, fix auto-mobiles, even run a farm from my self-invented method of driving a tractor. All the while I heard reports from media that maybe some day researchers, whoever they are, will perfect the idea of hooking a computer to the brain of a blind person so that he can see. If it did happen, I wondered, would I ever get in before my life is over?
A ray of hope
Seventeen years later, one of my friends phoned me and told me of a website where a New York doctor was looking for patients to try a prototype artificial vision system where a computer is hooked to the brain. I checked it out and sure enough, it was real. I applied, crossing my fingers, hoping I’ll get noticed. I was the first patient to come into the program.
Fighting with the fate
I paid the fee which could have bought us a new house, and met Dr. William H. Dobelle for the first time, in Portugal where the operation would be conducted. His office seemed impressive, as did his team of neuro-surgeons. I had the operation on April 8, 2002, a very painful one where I didn’t know I’d survive at first. My scalp had been all pulled off the back of my head, a hole the size of a playing card opened in my head, 140 cortical surface electrodes inserted on my primary visual cortex; and all closed back up, with two electrical connectors on top of my head. The connectors were 72-pin cable connectors housed in titanium flanges which were in turn screwed to the skull using 6 bone screws each. It hurt very badly.
Then a few weeks later I came to New York to be connected to the computer. The next part of the set-up process was that I had to tell the engineers where exactly I see the light sensation. This procedure was difficult and the mapping took some time, a couple of days, and was very tiring. The program ultimately gave me a violent seizure which I didn’t want to repeat. Finally the initial setup was completed, at least for the time being.
Then Dobelle instructed the camera to be attached to the computer box. The display was binary-black on white, no grey area representation, so without edge detection, the system wouldn’t have a hope to make a sensible picture of the reality before the camera.
The first brick on the bridge to my paradise
At first nothing worked, then slowly I began to see a bit of light, flashes, not as much as I wanted, that is for sure. Dobelle had promised being able to recognize faces; I found this impossible with 140 electrodes, but trusted his judgement based on his experience. When the system was first started, however, it was hardly anything that could make a picture.
Even though when we did the system setup, it just did not do more than make an irritating flash of light in my visual field. I was getting discouraged, but Dobelle said it is normal for the cortex to not function right after 20 years of blindness, as was my case. So I practiced for 3 days in the office, waving my arms before my face, etc, trying to make sense of the flashes.
I could just walk a bit around the office avoiding chairs in my way when Dr. Dobelle told me to drive a car he had parked behind the large building housing the office. Really, I thought he had lost it, but I wanted to cooperate as he was my only hope to see again; and besides, I had already decided to fight with my fate, and there was no turning back. So I did drive the car reluctantly, and with some real innovative guessing as to what the little dots of light meant, I pulled it off without wrecking the car. CNN News caught this and posted it on the ASAIO June 13 2002 meeting in Manhattan.
Dobelle hired me as Patient Rep, so I worked with the fifteen other patients to help develop the system further. Training was important, as was the system setup where each patient needed to tell engineers everything they saw. There were patients from all aspects of sight loss, such as one man who was 79 and had lost his sight at age 19, was very successful in gaining independence with his system, able to walk familiar places without a cane for the first time in 60 years. A younger man aged 30 years, blind only 2 years, was able to see images and walk unassisted without a white cane immediately after setup.
It took almost six months for Dobelle to get the system to work independently; there were many problems with hardware and software, and we diligently worked them out.
A view of my paradise again
I took my system home to Canada for Christmas 2002, and it was wonderful. I could see all the Christmas lights on houses, the outlines of my kids, the town where I lived for the first time in the scattered dot-matrix image of the system. We noticed some interesting deviations from our expectations, and their interesting effects on system performance. The light sensations proved, for me for sure, to re-establish a regular sleep patterns, and a “brighter” feel to the day- a pleasant side effect as one would expect when feeling cheery due to a nice sunny day. I was confident the system would only improve as time progressed.
But fate had another plan
Dr. Dobelle was getting sick with each passing day. I noticed he couldn’t work much at the office. The system had some problems we wanted to fix on the next design, such as zoom features, standby and others to make it more user friendly. Dobelle wanted me to have a larger implant, but it would take longer healing and set-up time. I was not sure if I have the stamina, following years of blindness, to undergo such a long and painful setup.
And then came the final shock. Dr. Dobelle passed away on October 5 2004. Dobelle did not write medical journals on his project, so the scientific community did not recognize the merits of his work. I contacted Dr Richard Normann from John Hopkins University of Maryland, as Normann was a long-time colleague of Dobelle until they went their separate ways prior to my involvement with the project.
Normann did not, however, want to continue working on what was in my head from Dobelle; he wanted to remove everything and experiment on using penetrating electrodes, then 3 weeks later take the electrodes back out of my head and send me home. I had no intention of working with him from that point as the idea of penetrating my brain was not comforting at best.
Losing hope for the 2nd time
Then I was back in the dark. No more artificial vision project from the Dobelle side, as FDA refused to allow anyone else to work on it; they saw it as a problem experiment. In 2010, I spoke with an FDA agent, who explained that penetrating electrode arrays haven’t been proven to be safe.
I realized that when I had dreamed of seeing again, I never thought to attach permanence to the dream. My dream came true, but then I awoke. The paradise was gone once again; maybe this time forever.
I looked for something to see me through this very tough time, hoping to get a job not in self employment, but with a team, like I had working with Dobelle. But in my country the blind must stay blind, or so it seemed to me; and I could not get into the workforce, no matter how I tried.
In search of a new paradise
I found a small International Development school in the USA looking for workers in Mozambique, they claimed they’d take anyone fit to travel. I put their policy to the test and wrote of my loss and my accomplishments, and I was accepted with open arms.
Six months of training and learning a new language, I was in Lamego, Mozambique, teaching English, French, Music and computers to classes of young adults, some of whom were blind. For the next three years I was in and out of Mozambique, its culture and society so accommodating to people with disabilities, I even forgot about my blindness.
This is the story of my life so far, and I wrote a book named Search For Paradise in 2012 which tells of everything about artificial vision, as well as how to live without it. I hope you will get a chance to live my adventure by reading it.
Image credit: totheunknown