Search for Paradise
A Patient's Account of the Artificial Vision Experiment
Perfect Bound Softcover
Jens Naumann, a typical energetic young man of 17 had just moved out of his parent’s home in Northern British Columbia, moving into a railway camp as an employee with the British Columbia Railway. All goes well as Jens enjoys his new found freedom, treasuring his driver’s license and its associated freedom of travel. Then on a wintry day in 1981, fate rears its ugly head and strikes him blind in his left eye.
Jens quickly rearranges his life to accommodate his new found fear - that of losing his remaining eye now that the true vulnerability of his eyesight is revealed. As his life continues onwards despite the initial readjustment, he finds ultimate happiness in his new marriage to his young wife Lorri, and just when life stands at its threshold of paradise exploring fatherhood along with the beauty of travel and thrill, his worst nightmare becomes reality not once, but twice in the most bizarre series of unforeseen incidents of bad luck; as Jens is totally blinded with no foreseeable chance of seeing again according to the best medical experts.
Jens tries his best to adjust to this unwanted situation, exploring conventional methods of rehabilitation to live with blindness, as well as using imaginative, totally unheard - of activities in order to pass his time in a hope of someday being able to see again despite all the odds stacked against him.
Close to the turn of the century, Jens unexpectedly receives news of an American Medical Device Engineer, Dr. William H. Dobelle, inviting blind adults as patients for his newly developed artificial vision system designed to provide limited vision via visual cortex stimulation. Dr. Dobelle claims that his system has a good chance in functioning based on previous experimenting with volunteers, at the same time classifying the surgical procedure as minor. The system and its related components is complicated; consisting of not only the implants, but a series of “electrical sockets” protruding from the patients head to which an array of computer boxes and stimulator hardware is connected and worn by the patient.
Jens is determined to be one of the patients, regardless of the remoteness of the chance of being one out of literally millions of blind people in the World possibly lining up to have this procedure in hopes of ending their blindness for once and for all.
To his absolute surprise, Jens is accepted as the first patient for this procedure and slowly builds a relationship with Dr. Dobelle as Jens overcomes obvious barriers of raising enough money for the very expensive procedure, as well as fighting the challenges of relentless forces working against him for his involvement in the Dobelle vision project.
Armed with preconceived ideas of how a research institute should be run, Jens travels overseas for the various stages of the procedure, only to find the most astonishing facts of what goes on in the heart of a renowned medical research institute. Not only is Jens looking at the workings of the Dobelle Institute from the view of a patient, but in short time Jens is hired by the firm as Patient Representative, providing further exploration yet on the inner most details concerning a research company and its treatment of the 15 additional implanted patients.
Throughout the book, Jens describes the devastation, exhilaration, disappointment, elation, and confusion that attempts at sight recovery, medical intervention, media propaganda, and ethical boundaries conjure in the most illustrative intensity.
The manner in which the book ends is most indescribable; one could view it as the final straw, the beginning of a new era, the curse of the unforgiven, the sadness of a crushing reality, the beginning of a good job left unfinished; or that of the birth of a new expert compelled to unleash the new found knowledge for the whole World to thrive.
Just as many questions are answered, many more yet are opened and left so far undiscovered. Search for Paradise is ce
The rental company could get ugly about it. I'll just pull them off and startagain."
A screwdriver was retrieved by one of the engineers, and the plates werepulled. I walked to the car, its shape now more familiar as it was portrayed bythe crude vision system. I got in and started all over again.
"Squeal the tires!" Marty begged. I did. The phosphenes were not asbadly out of adjustment today as they had been yesterday, so I did not haveany residual phosphenes after the first fifteen minutes of driving. All wentsmoothly until the system quit suddenly a half hour into the second run offilming as predicted.
"It stopped working," I announced as I stopped the car. Enrico was notsatisfied yet. "Just follow the sound of my assistant for one more run, OK?"he said. I did as I was told as it was easy to hear the assistant calling me fromthe other side of the lot as there was no roof on the car, allowing me to havedirectional hearing. "Don't worry," Enrico said as he continued to roll thefilm, "I'll let you know if you're about to hit something." I cooperated despitethe darkness closing in on me, obediently directing the car toward the yellingassistant who was strategically positioned out of the view of the camera. Myonly concern now was to get these photographers satisfied so they wouldleave us alone to continue working on the vision system, perfecting thephosphene adjustments, the map, and most of all, allowing Jim to install thenecessary software so the system will start on its own rather than having tobe booted up with a laptop. It was vital that this was done before any of uspatients would be able to take the vision system home.
After the last pass across the parking lot, I followed the voices to thecorner of the building, brandishing, once again, my white cane. My heart sankas I approached within earshot.
"No, we can't have that in there," Enrico agreed, still holding the licenseplates of the Chrysler. "I wonder where we could go."
"What's the problem now?" I asked curtly. If these guys were professionals,I thought, they sure weren't acting like that today.
"The garbage dumpsters are in the film," Kyle informed me, having heardthe entire conversation. "They figure that won't look good."
"Who owns that over there?" It was Charlie speaking, gesturing to theother side of the concrete curb that separated Dobelle's lot from the neighbors.
"Think they'd mind?"
"There's a lot more room there," Enrico agreed, "and considering it'sSunday, I doubt there'd be any notice of us."
Bill vaulted himself forward somewhat with his one foot to see past thebuilding of the Dobelle Institute. "That'll do, if you make sure none of thebuildings are in the picture. No one will ever know that lot was used."
"Well, I hope you're going to restart my system first," I protested, "asright now it's right off." I did not like the idea of there being much more roomas I had limited range with this vision system. If the building and the curbweren't as close as they were, I wouldn't be able to orient myself. I'd have towait and see, I thought. Then again, I mused, perhaps they really didn't careif the device worked or not, as long as I was wearing it and sitting behind thewheel of a moving car.
"Yeah, we'll get it restarted. We'll also get Dennis going with the othersystem, and you both will take turns with the filming. Let's first have somelunch," Bill spoke as Charlie pushed him back toward the front entrance.Dennis was fitted with his equipment, being subject to the same level ofinterest by the photography team as I was. Once accomplished, he was ledout to the car. I had no idea what he saw with the system, but it couldn't havebeen very much as he made no reference to anything he passed by as he wasled out the door of the building. With the camera crew, and Bill outside, theoffice was once again peaceful. I took my place at the conference room table,and Jim hooked the system back up to the laptop, and since I had not turnedit off yet, he hoped he'd be able to find the bug in the software that keptshutting it off. But he had no luck, and a half hour later, he gave up.
"We'd better get you going with this thing so you can go out thereagain," he said as he prepared the system for another hour and a half ofservice. I had nothing to say in return as Jim, an employee of Bill, had noreal right to comment negatively on the proceedings. I hooked up the cablesto my savers, adjusted the belt, and Jim started the stimulator. The lightreappeared, cheering me up as the world was visible once again. I followedKyle out the door, marveling at the fact I could see the doorframes as I passedthrough them. I followed Kyle across the parking lot, stepping over the barrierseparating the two lots when I saw it approaching. My cane was still folded upin my hands. Had the ground been rougher, I would have used it as the systemwould never show drop-offs very reliably, but knowing this lot was flat, I coulddo away with it. It felt strange, but so, so good not to use the cane.
Several yards into the neighboring lot, I heard the voices of Enrico, Charlie,and the assistants shouting at Dennis as he drove.
"This way . . . this way . . . this way . . . -now turn right, keep going . . .OK . . . turn left and reverse . . . yeah, that's far enough . . . now this way . . .this way . . ." I approached the blob of phosphenes that indicated Bill, parkedout of the way of the cameras in his chair. "You're next," he said.
I approached the car as Dennis had left it. I'd have to turn it around beforedriving it the other direction. There was a line of grass beside the lot that Icould use as a guide, but in areas it was too dried up, and the color of thepavement blended in with the color of the sand, giving no phosphene image.
The concrete curb and the side of the building at the other lot had been muchclearer to see with this system. I would be able to see the grass well enoughon my left side, but when turning around the car to go the other direction,I'd have nothing to look at to guide me. This wasn't going to work very wellat all.
"There's nothing to guide me on the way back," I told Enrico, interruptinghis list of instructions he wanted me to follow, "as there's nothing on that sideto look at. I had the building for one way and the curb for the return at theold place."
Enrico shrugged it off. "No problem, we'll help you get back."
I turned the car around, using part of the grass. Once the grass line was onmy left, I started to go forward as they filmed. Occasionally, I looked out thewindshield to make sure no one was standing in front of me. About a hundredyards later, I reached the assistant who was stationed, out of the view of thecamera, to guide me into a turning-around procedure. He gave me directionsjust like they had done with Dennis. I could not use the system on the wayback as the grass line, being on the passenger side of the car, was too faraway for the vision system to react. I prayed this film would not be used onany media channel as blind people would line up by the thousands for thisoperation just to find out the truth afterward. Or maybe, I hoped, we'd getthe software refined so we'd have accessible magnification and other goodiesby that time so this can be pulled off with confidence the next time around,justifying this show of success.
"Now let's have a picture of both of you in the car," Enrico suggested,meaning Dennis and I as we wore our vision systems. He positioned himself atthe side of the car so he'd get film of both of us looking at the camera. "Nowwhen I say 'go,' just go ahead about twenty feet and stop. Don't worry, it's allclear for at least a hundred feet in front of you."
Dennis got at the wheel of the Chrysler and I in the passenger seat. Enricowas changing a battery for his camera when I asked, "Dennis, do you see thegrass line we have to follow?"
Dennis turned to me and stated in a voice bordering on anger, "I can't seenothing! Nothing at all."
"Not even the outline of the windshield?"
Enrico was ready and started the film. "In five seconds, just say somethinglike 'good-bye' and go, all right?" Dennis did as he was asked, gunning theChrysler as it lurched forward out of the view of the camera, giving an excellentimpression that we were really going somewhere. I felt kind of dirty inside asif I had committed a crime that could hurt someone.
But then again, I did see that grass, even if Dennis didn't—with only thirtyor so electrodes working at that time—Dennis just needed more rehab andadjustment with his system to do the same. There was so much potential withthis system, and my impatience got the better part of me more often thannot.
We were done filming, all of us now standing around in the parking lot,about a hundred or so yards from the institute building. I heard the trees onthe right, and looked to see them. With the afternoon sun shining behindme as I stood there in the middle of the lot, the entire world behind me lit upwith astonishing clarity. The institute building's roof and walls were outlinedagainst the sky, the trees with their chaotic phosphene patterns on my left,the divider of the two lots as clear as can be. I must really be getting usedto the system now, I thought as I looked at the world unfolding before me.Normally I'd have no idea where I was when stranded in the middle of anasphalt field, as there was no sound clue coming from the building. I waslearning to move my head in such a manner to make a better picture out ofthe unevenly dispersed phosphene map I had. Even though the entire picturewas not visible at first glance, a couple of seconds of moving my head around,scanning the landscape, and the picture materialized itself in what seemedlike absolute clarity in my visual field. I stood there like a prisoner just releasedafter decades of incarceration—I couldn't move—I was just awed by the sizeof the world before me. I didn't have to stand here now; I was free. Free togo wherever I wanted, and right now I wanted to go inside the building. Ibegan to walk, first with uncertainty, then with absolute certainty, toward thebuilding.
I paid close attention to the sounds coming from behind me as I steppedover the curb dividing the lots. Good. No one noticed I was going away. Ifelt like a dog, kept on a short leash forever, but this time, the master hadneglected to fasten the clip. How far would I get before someone wouldnotice and intervene? I approached the building until I saw the intersectingline between its walls and the pavement and proceeded to walk around it,heading to the front door. I saw the electrical box and at this point used mycane for reassurance as I knew there was a staircase coming up which wasrecessed for entering the basement. Then I heard the shouts and the runningfootsteps toward me. I cursed.
"Careful! There's stairs coming up!" He grabbed my arm as I strained tocontrol myself from pushing the man right out of my path. What right did hehave to destroy that magic moment of freedom? This man had no business inNew York, let alone the United States, which supported a culture of personalrights and freedom. I turned on him in anger.
Emigrating from W. Germany in 1967, Jens Naumann settled as a young boy in British Columbia, Canada along with his parents and two siblings. Growing up to appreciate the outdoors, motor biking and flying small airplanes, Jens turned to the career of land surveyor following his first eye loss while working on the railway. Married young his luck for saving his other eye ran out at age 20; forcing an abrupt change in lifestyle as seemingly insurmountable challenges continued to bombard him through the process of raising nine children. Jens has played an important role in many daunting endeavors, including delivering 6 of his children, running a farm, serving in Mozambique as Teacher-Training college instructor, and operating his own solar energy systems installation company. Jens presently resides with his family in Napanee, Ontario, is an avid pianist and recently graduated as a registered social services worker from Loyalist College.
This book is a must-read for anyone involved or interested in the development of artificial vision for the blind. An absolutely fascinating, most intense and sometimes shocking personal account by Jens Naumann, one of the 16 recipients of the Dobelle brain implant. He dealt with some 19 years of total blindness without accepting his situation, always waiting and looking for new opportunities to undo the darkness, when finally the Dobelle brain implant project came along. Still, the high hopes and ideals later turned out not to match the harsh reality. Unethical practices with serious health risks and raising of false hopes went right along with brave and ground-breaking first attempts at getting brain implant technology finally out of the lab and into the hands of blind people around the world. It is a complex story where good and bad go intertwined. At one moment Jens is so close to achieving crude but usable sight, enjoying his phosphene vision and learning how to best make use of it, but then his implants started to fail, leaving only a few phosphenes and the threat of seizures. The book remains open-ended, looking for ways to create follow-up to an unfinished project that effectively ended with the death of William Dobelle in 2004.
An excellent read for science enthusiast. The author skillfully recounts the incredible events of his past going in depth with his involvement in what was possibly the most successful artificial vision project to date. This book gets a well deserved 5 stars.
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