If I was going to become a better kayaker, we needed to push it further and attempt some more technical rivers. In kayaking, technical refers to rapids with more rocks and holes to avoid, and a more complicated series of moves to navigate through, all with serious consequences if you didn’t hit the line. Fortunately for us, the upper Colorado River was a short drive away, and a section called Shoshone was a perfect training ground.
Because Shoshone had more complex maneuvering, it was going to be really hard for Rob to guide me, while also trying to pick the best line through all the rocks and holes. So we decided to add another kayaker to the group. We’d enlist different friends to be our “line picker,” to paddle out in front and choose the ideal way through. That would enable Rob to concentrate on guiding me, while he simply followed the lead boater. In case I had problems and swam, another kayaker could also be there to retrieve my boat, while Rob towed me back to shore.
The rapids in Shoshone were accurately named and spoke straight to my fears: Pinball Alley, Tombstone, and Man-Eater, to name a few. Listening to the full-throated roar of water pounding relentlessly over rocks, my muscles felt weak and mushy. I forced myself to breathe oxygen into my body, but I still felt like I could suffocate.
As we carried our boats down to the river, I had to consciously will my muscles to fire. Climbing mountains was supposed to prepare me in some way for all kinds of challenges, but I didn’t feel prepared for this. At forty-one years old, I felt as vulnerable as a child, like I was starting over. My teeth chattered. My hands shook, and I was a little dizzy. My mouth was so dry I could hardly swallow. Rob patted me on the shoulder, assuring me that it was going to be okay.
Pinball Alley was a series of waves between a scattering of exposed rocks you had to zigzag through, with openings only a little wider than the width of a kayak. Despite Rob doing his best to call commands, my kayak would often bounce off one of those rocks, my knuckles scraping and paddle clacking. That would send me careening and ricocheting downriver, desperately bracing to stay upright. In that crazy spin, it was hard to tell which way I was facing, and I’d get totally disoriented. On one run, I slammed into a rock sideways that shook me up and flipped me. I swam out of my boat, and as Rob hauled me to the bank, he shouted, “You blind guys are sure unpredictable! You don’t always go in the direction I’m expecting you to!”
Rob was joking, but the underlying point was accurate. Every run, even down the same rapid, felt totally different. If I entered angled ten degrees too far left, or Rob was a second late on a command, or I slightly over-turned, it would begin a cascading chain of circumstances that would make the run go from bad to worse. The river had its own energy that surged and ebbed unpredictably, so sometimes Rob would yell, “Small left!” I’d make what I thought was the turn, without knowing the river was actually pulling me farther right. “Left! Hard left!” Rob would shout with increasing urgency as I swept toward one of the many hazards.
Tombstone was another rapid that made me sweat, especially under all my layers of clothing. It featured a sharp, pointed rock in the middle of the river, with a large hole and a bunch of rocks just to its right. The line through there was narrow, requiring you to squeak to the left of the rocks, drop down into the meat of the rapid, and just before smacking into the Tombstone, make a hard right to whoosh by.
The flow down a wild river didn’t move at one consistent pace; so with Rob right behind me, trying to kayak in symmetry with me, it was tricky to begin with. But at Tombstone, I hit the line a little to the right, bounced over a rock, and hit the hole sideways. It stopped me flat and flipped me instantly. I rolled up with just enough time to miss the Tombstone, brushing it with my elbow, but at the next eddy, Rob told me he’d almost T-boned me—or, to put it less colloquially, almost hammered me with the pointed bow of his boat! That could easily break ribs, or worse. So to avoid me, Rob had purposely flipped his own boat, which stopped him in the very same hole. I envisioned the famous dolphin Flipper ramming a shark with his bottlenose, and Flipper had always killed the shark.
“No T-boning,” I said.
Floating in an eddy above the last rapid, Man-Eater, Rob said, “Don’t be intimidated by the name. As long as we stay center or right, it’s pretty straightforward.”
“What if I don’t?” I asked tentatively.
Rob looked downriver and said, “That’s where the name ‘Man-Eater’ comes in. So just make sure to angle right and you won’t have to worry about it.”
As we entered the rapid, however, I got pulled too far left and into a circulating eddy. Rob shot by and, within a few seconds, was somewhere downriver. I was stuck, spinning around, totally disoriented. A moment later, I felt myself dropping backward out of the bottom of the eddy and directly into the Man-Eater. Fortunately for me, the river flow was lower than normal, and the Man-Eater turned out to be a jumble of boulders, some just under the surface and others protruding. I scraped and bounced through them, somehow managing to stay upright. My adrenaline surged, and I was hyperventilating as I finally slammed into a boulder that flipped me instantly. I’d had enough. I pulled my skirt and swam.
As Rob towed me to the shore, he said, “That was impressive, Big E. You managed to ride it through … until that very last rock.” And later, sitting on the beach together, he said, “This speaks loudly to the fact that we need radios. As the rapids get bigger, it’s going to be impossible for me to stay next to you. It’s going to get harder to hear. We may be separated by a wall of white water, or, you might get pulled into an eddy.”
He was right. I was trying to ride an avalanche of water that roared in my ears and blocked out everything else. In the midst of all that, Rob was trying to stay right behind me, yelling at the top of his lungs, and I could only barely hear him. Those commands had to be dead-on, delivered with perfect timing and accuracy, and the other part of the equation: I had to execute his commands flawlessly. Being a foot too far left or right meant the difference between getting hammered or squeaking through, and it would only be getting bigger and louder. So with the memory of Man-Eater lingering in my restless dreams, the search for a radio communication system began.
After a lot of online research, the array of radio choices was dizzying: VHF versus digital, walkie-talkies versus ham radios, simplex versus duplex, push-to-talk versus voice activation. The different headsets were just as confusing. Surprisingly, few of the systems were actually waterproof; the radios, cables, microphones, and earpieces needed to be completely submersible. We tried all kinds of ideas like simply putting our cell phones in waterproof cases, but a lot of canyons had no cell reception. We spoke to companies that made systems for motorcycle racing, skiing, and sailing to see if they could be modified. We tested microphone systems that conducted sound through the bone behind your ear. We talked to the leading provider of military combat radios, who insisted we’d have to settle for a push-to-talk system, but Rob was pretty busy holding his paddle and trying not to get knocked over, so the system had to be hands-free.
We finally found some that were advertised as marine radios, but the first time we tested them, it turned out that although the headsets and microphones were waterproof, the radios themselves were not. Water was entering the battery compartment, which was disastrous for electronics. We tried to put them inside waterproof bags but we had to cut small holes for the cable to run through. The holes had to be sealed again, and despite our best efforts, the seals kept leaking and the units stopped transmitting. Testing them on Shoshone, I bounced and dipped through a rapid, straining to comprehend Rob’s directions. Halfway down, they began sending unintelligible gobbledygook, like Charlie Brown’s teacher talking in my ear. I could hear that Rob was yelling a direction, but had no idea whether it was a left or a right. I had a fifty-fifty shot. I turned left and slammed hard into a rock, flipping and swimming. I was under for ten seconds, and when my head popped out of the water, sputtering and gasping for air, I expected to hear Rob’s voice, but instead was met with a cacophony of voices. “Woohoo!” they cried. “What a show!” And then clapping. It was then I realized I’d emerged right in front of a raft full of tourists. As they cheered, I cursed angrily under my breath.
* * *
The next spring, I organized another family trip, this one down Desolation and Gray Canyons on the Green River, an eighty-four-mile section below the Gates of Lodore in Utah. This would give us a chance to test a new radio setup. The river was normally a Class III section, but when we arrived, we found the water was flowing at flood stage—forty-two thousand cubic feet per second (cfs). It was a thirty-five-year high, and Rob said, “Get ready for a wild ride.”
At the put-in, I pulled the new radio setup from the rigid Pelican Cases and slid the walkie-talkie box into a pocket in my PFD. I attached the cables that trailed up to my headset, which wrapped around my forehead with Velcro straps. I adjusted the dangling mike against my mouth and finally pulled my helmet over it all.
As I began paddling, I noticed that this new technology added another layer on top of a sport that, with a tight spray skirt, dry top, and PFD, already felt cumbersome and claustrophobic. Now, I had a bulky box jammed into my chest pocket and a series of cables protruding from my PFD, wrapping around my shoulder straps, and connected to an earbud plugging my ear. With my left ear no longer hearing the ambient sound around me, I was now listening to the world in mono, no longer in stereo. Being reduced to one ear made it harder to assess space and distance and respond to the sound cues I was so used to. I felt less connected to the river. But with Rob’s voice immediately in my ear, I was now more connected to him, my lifeline, and it gave me confidence.
Rob began his commands as we entered our first rapid. Crammed into my tiny craft, layered in protective gear, and with the new earpiece and microphone covering my face, I felt kind of like an astronaut blasting off into space, with Rob as my mission control: “Okay, Big E. You’re now entering the green tongue. At the bottom, there are some laterals we need to break through … now hard left. Fight the spin. Hold that line.” His voice was now fast and adrenalized through the earpiece. “Hard right … charge, charge, charge!”
Rob could now hang back farther from my boat, without as high a threat of T-boning me. Once I got stuck in an eddy, and Rob shot past me, but unlike Shoshone, he pulled over in an eddy a hundred feet down and talked me through. “Small left, small left … Now paddle hard … You’re through the eddy line. Hard left and hold that line.”
Despite the advantages, with technology came a higher chance of catastrophic failure. Water could seep into the control panel; a cable could disconnect; a microphone could be clogged with water, and a battery could die. I had to trust that the radio would work reliably. The pre-radio days had been more black and white; I could either hear Rob or I couldn’t. But with radios, the worst scenario would be for me to be hurtling down a rapid thinking everything was fine, when, in actuality, Rob was yelling desperate commands that I wasn’t following. So using the radios presented a trust issue; they had to work well all the time.
To build that trust, on the flat water, I practiced my roll a lot. Radio waves don’t work underwater, so I couldn’t hear Rob when I was upside down, but as I rolled up, Rob would begin to speak. Most of the time, I’d hear him, but now and then, with no explanation we could determine, I wouldn’t hear a thing. When we checked, we’d find the radio had mysteriously shut itself off.
Our new system was a waterproof, voice-activated system, but we continued discovering some problems. First, the wind gusts and water splashes constantly triggered the voice activation. Since it was often activated, I couldn’t talk back to Rob. The big waves also knocked our mics out of place, so Rob’s commands became a distant whisper. But worse than that, Rob’s first word would kick on the voice activation, and, because of that, it would often miss his first syllable. “Small left,” became “—ll left” and “hard right” became “—rd right.”
I was always second-guessing his commands, and it began throwing off my rhythm and filling me with anxiety. We also noticed the voice activation had a half-second delay from the time Rob said something to the time it was received in my ear. Half a second seemed minuscule, but in a rapid, when the timing of Rob’s directions was everything, it felt like an eternity. A few times I was late on a call and found myself bouncing over a submerged rock and flipping in the circulating hole beneath it. My roll was still shaky, and I was still getting panicky underwater. I really wanted to take Rob’s advice to keep trying two, three, even four times. But when I was under, I’d try once, maybe twice, and pull my skirt. I was finding it almost impossible to break my brain’s fight-or-flight mechanism, built up over thousands years of human evolution. Instinct took over, and I was no longer consciously making decisions.
The one rapid we were concerned about was called Joe Hutch Canyon Rapid, which came at mile fifty-five. When we arrived a couple of hundred yards above, we pulled over river right and went ashore to scout. With the river running this high, it was the loudest white water I’d ever stood next to, and Rob and I had to yell pretty loud to hear each other over the roar. Rob grabbed my hand and pointed my finger at the river. “Definitely big water. Gotta be Class IV. There’s a strainer river right, a big hole river center, and a huge wave train river left. We’ll want to enter the center tongue, then make a hard right as soon as we pass the big hole to miss the giant wave train. After the wave train there’s a large rock wall river left we’ll want to stay well clear of…”
My ears heard the words, but my brain was shutting off. All of a sudden, this didn’t seem like a very good idea. I imagined flipping and getting slammed into the rock wall at the bottom.
I half mumbled to Rob that I might want to skip this one, that this was a family trip, and Ellie probably wouldn’t want me to try it, but Rob was already off discussing the safety plan with the raft guides.
A little while later, a hollow pit lodged in my stomach as we floated down toward the overwhelming noise. “Are you ready for this, Big E?” Rob asked over the radio.
“I guess so,” I replied, fighting down nausea.
“Okay,” his voice crackled, “here we go.”
Then I heard silence—utter and complete radio silence. For a moment, I worried something had happened to Rob. My boat started bobbing and rolling in massive entry waves, and I heard Rob’s voice from at least a hundred feet behind me, completely unintelligible, but unmistakably back there somewhere. As I rode the back of a slippery liquid serpent, I tried to rotate my body and raised my paddle over my head in the sign of distress. “Rob, no radios!” I yelled, and it came out guttural like an animal’s dying scream. “No radios!”
There was nothing to do but try to point into the massive waves that were crashing over my head. I braced and tried to stay upright, lifting skyward and riding down the other sides. Water exploded all around me, and the pulse of the river drew me forward. I wondered if I were about to crash into the canyon wall or be pulled into a hole.
After what felt like a lifetime, but was probably only a minute, I finally heard his call behind me, and I was relieved. The radio was dead, and Rob had figured it out and hurried down to me, now hollering, “Plan B!”
In kayaking, your first plan often doesn’t happen, so Rob always insisted on a plan B. In this instance, it was to shout at the top of his lungs, like the old days.
“Left, hard left! Charge! Charge!” A huge wave pummeled me from the side, and I went over, but I kept it together and popped back up on my second try.
As the waves diminished and the roaring subsided, Rob yelled, “Nice combat roll! You nailed it, Big E!”
I panted hard and collapsed over the front of my boat. Finally, I said, “I’m done with those fucking radios.”
* * *
I hadn’t been home long and was still thinking about kayaking and how to solve our radio problem when I got a call from Richard Hogle of Wicab, Inc., the head of product development of a company I’d been working with for a few years. They’d loaned me the newest version of their BrainPort device, and Hogle wanted to know how my testing was going. Although it wouldn’t help me with my radio search, the BrainPort was a remarkable piece of technology that had far-reaching implications well beyond kayaking. In fact, it seemed more like science fiction than reality. The device, comprised of a digital camera, microprocessor, and tongue display, was allowing me, and other blind people, to “see,”—but not with our eyes … with our tongues.
I’d been testing the BrainPort for a number of years and even had the privilege of meeting Dr. Bach-y-Rita, the pioneer responsible for this groundbreaking concept. In 2003, my dad had read an article in a science magazine about Dr. Bach-y-Rita’s work, and he reached out to see whether I might be a good candidate to help test the device. A few months later, I met Dr. Bach-y-Rita at the Tactile Communication and Neurorehabilitation Laboratory at the University of Wisconsin–Madison.
Dr. Bach-y-Rita seemed younger than his sixty-nine years, with a firm yet friendly handshake and a voice that rose and danced with a kind of perpetual optimism. As we toured his lab, he and one of the researchers began setting up the BrainPort while Dr. Bach-y-Rita told me about his journey to the current work he was doing.
“The brain has the capacity to change,” he started. “If one part, or a number of parts, fail, then other parts can adapt and take over. This is called neuroplasticity. I discovered this in a rather unconventional but very personal way, though the theory had been around for over a hundred years.”
In 1959, his father, Pedro, a poet and a scholar, suffered a stroke that left him mostly paralyzed and unable to speak. “At that time,” he went on, “stroke rehabilitation programs were quite limited, essentially because of the widely held scientific belief that the brain lacked the ability to truly recover. Conventional thinking viewed the brain as a compartmentalized group of highly specialized processing modules. It was believed that these modules had been genetically hardwired to do very specific tasks, and only those. If one of the modules became damaged, that was it; it could not be repaired or replaced.
“My brother, George, refused to give up on our father, despite being told he would never recover and should be institutionalized. George had no ingrained preconceptions about rehabilitation technique, so he created his own. Instead of trying to go straight to walking, he first taught our father to crawl. After months of crawling, he began walking on his knees, then standing, and finally he was walking.
“George also got our father to do simple household chores as motor training exercises. He’d scrub kitchen pots for fifteen minutes at a time, repeating circular motions over and over, then doing another fifteen minutes in the opposite direction. After only a year, our father had regained his speech, learned how to walk again, and eventually returned to teaching. Until his death from a heart attack hiking at nine thousand feet at the age of seventy-two, he lived a full and vigorous life.”
After his father’s death, Dr. Bach-y-Rita had a neuropathologist at Stanford University examine his father’s brain, and what he found was shocking: His brain was visibly severely devastated, and yet he’d experienced a full recovery. His conclusion was that the exercises his brother had done with his father had somehow reorganized the brain. If the damaged parts had no longer controlled language and motor function, what had? Bach-y-Rita landed on a hunch: The brain was an organ of remarkable plasticity; if one part of it became damaged, another part could serve the same function. In other words, the parts were interchangeable. The idea was revolutionary and eventually changed the way people fundamentally thought about the human brain.
To test his theory, he quit the job he’d taken right out of medical school and enrolled in a residency at Stanford’s Santa Clara Valley Medical Center. He wanted to study more people like his father, to work with stroke victims, and to potentially re-create that miraculous recovery. By the late 1960s, he was testing his theories of neuroplasticity with blind subjects.
“It’s the brain that sees, not the eyes,” he said. “If one sense, such as vision, is damaged, we wondered if another sense could take over. Our theory was that we could find another portal to send input to the brain. We called this ‘sensory substitution.’”
Bach-y-Rita rigged a dentist’s chair with panels holding four hundred small touch sensors that were connected to a camera. What the camera was seeing was translated to electrical signals that vibrated the chair’s sensors. When blind subjects sat in the chair, they were able to translate the vibrating patterns they were feeling on their backs into triangles and squares, letters, and then words.
“When you were a child,” the doctor asked excitedly, “did anyone draw on your back? Well, that’s what was happening. These subjects were reading with their skin.”
Eventually, they were able to detect furniture, telephones, even faces. The visual cortex in the brain was designed to receive information through the eyes, but he’d discovered that another sense, the sense of touch, could substitute. He had created a new connection, one that was thought to be broken permanently, showing that the brain could change and adapt to new sensory input.
“The BrainPort device you’ll be testing today has come a long way from a dentist’s chair, but the concept is essentially the same, except now, you’ll feel the vibrations on your tongue. We discovered the tongue is excellent for sensory stimulation. Its many receptors make it very sensitive, and because it’s coated with saliva, it takes well to electrical contact. In normal vision, light hitting the retina provokes electric impulses that the brain translates into images. What the BrainPort does is convert light into electrical impulses that stimulate the tongue instead of the retina.”
The researcher handed me a “tongue display unit,” a square grid of four hundred tiny electrodes, the whole unit only slightly larger than a postage stamp. The tongue display was connected to a computer monitor on a rolling cart, which in turn was connected to a camera. The assistant attached the camera to my forehead with an elastic headband, similar to a headlamp. I put the tongue display in my mouth and directed the camera on the table in front of me. Instantly, little electric shocks tickled my tongue, like when I had touched my tongue to a battery as a kid.
“Investigate the table,” the researcher urged.
At first the sensations felt random, but then something began to emerge. It vibrated in a round shape. I reached out and felt a tennis ball sitting on the table.
“This time,” she continued, “I’m going to roll you the ball. See if you can feel it moving.”
A moment later, I felt a little circular vibration starting at the back of my tongue and moving toward the front. As it moved, the circle got progressively larger. I reached out my hand and actually stopped the ball that was rolling toward the edge of the table. Saying I was blown away would have been an understatement. As a blind person, it had been twenty-five years since I had experienced hand-to-eye coordination. There were ways of compensating, but nothing was as beautiful and fluid as reaching out and plucking an object out of space. In five minutes, the BrainPort had just reestablished that connection, although I guess this was tongue-to-hand coordination.
* * *
The BrainPort I was now testing at home after the Desolation Canyon river trip was much smaller and more portable. I put on the sport sunglasses that housed a small video camera on the nose bridge, acting as the “eyes” to gather visual information. The images got transmitted to a small handheld computer about the size of a cell phone, which translated those visual signals to the tongue display. I sat on my couch, moving my hand around in front of my face, holding one finger up, then two, then all my fingers, and finally moving my hand close up against my face and farther away. When Emma was a baby, Ellie described her doing the same: wiggling her fingers and toes and using those familiar appendages as a starting place from which to branch out into the world. I felt like a child as I walked around the house, trying to interpret all the images I was feeling.
“What’s that, Dad?” Emma asked as I fiddled with the controller and zoomed the camera out wide. The sensations on my tongue were only in two dimensions, like a line drawing on a piece of paper. As I concentrated, I thought I felt a body and some protruding sticks that might be legs. “Is that Willa?” I asked, popping out the tongue display and kneeling down to touch the furry coat of my guide dog. Emma and Arjun brought me around the house in a game of “Stump Blind Daddy.”
One of the objects really confused me. It started with a stick pointing straight up. On top was a tiny blob with a sharp point that danced around in a crazy way. I was reaching out to investigate further when Emma yelled, “Stop! That’s the flame of a candle.”
“I remember those days when I used to tell you not to reach out toward the hot stove,” I said. “Guess now it’s my turn.”
I next moved into the kitchen and looked down at the counter. The tingling on my tongue became a small circle connected to a rectangular peg. The circle was more defined around the edges.
“Coffee cup?” I asked.
“That’s too easy,” Emma said. “Now try to grab it.” It was hard enough to interpret my surroundings, but it was even harder for my brain to translate the tactile information on my tongue into perspective and dimension. It all took time and practice, like learning a new language, and it was mentally exhausting as I stretched to put the pieces together.
Using the hand controller, I zoomed in and out on the mug, and matched how big it was on my tongue versus where it was in space. I put my hand out until it enveloped the cup. Then I eased my hand down. It landed lightly on top of the handle. I lifted it up and, with a smile, took a drink of Ellie’s coffee.
I had taken the BrainPort to the climbing gym to see if I could find holds on the wall. It was a fun exercise, and afterward, I started getting a bunch of media inquiries asking me to use the device to test it in skiing, kayaking, or rock climbing. But I thought they were missing the point. I didn’t need the BrainPort for extreme pursuits. The ways it lent meaning in my life were subtler. When I became blind, two barriers had arisen. Not being able to see anymore had been difficult, but the true deficit was that I’d lost a vital connection to those I loved. I couldn’t play a game of rock-paper-scissors with the kids or praise a beautiful picture they’d drawn in school. I couldn’t tell Ellie how beautiful she looked in her new outfit or catch a knowing glance from her across the room. Without those connections, my life could sometimes feel lonely and isolating.
So it felt like magic when I could use the BrainPort to share a moment or play a game. One day, Emma challenged me to tic-tac-toe. She’d drawn the crisscrossing lines on a large drawing easel, and I could clearly recognize the nine boxes. It was tricky watching the tip of my pen in hand, as I shakily drew my circles. The first few missed closing the loop, and wound up looking more like apples with stems. Emma was sitting on my lap, laughing at my apples, as we traded turns.
“I think I beat you,” I said.
“Nuh-uh,” she replied happily. “I won!”
It would have been easy for me to miss something, so I strained again at each box, one at a time: “Don’t I have one on top, one in the middle, and one at the bottom?” I asked, moving my Sharpie down the paper.
“Nope!” she emphatically denied. “I won! I won!” she squealed, bouncing on my lap. Out of the corner of my tongue, I think I caught some surging movement, and I was pretty sure it was her hands lifting up in a victory arm pump. I turned and studied the boxes—trying to see what I’d missed.
“Emma, are you sure?”
“Oh yeah,” she reexamined, sounding a little deflated. “Maybe we both won.”
I studied the easel one last time and said, “You little stinker!” and tickled her until she squealed. “I bet you’ve been cheating me for years.”
I also used the BrainPort to teach Arjun how to read. I could decipher letters on Arjun’s cue cards, and we’d sound out the words together. When he got tired, we’d go downstairs to the wrestling mat to play games. One day, I used the device to look down and noticed a ball rolling across my tongue, like the first time at the laboratory, but this time, it was Arjun kicking me his soccer ball. I knelt on the wrestling matt like a goalie, and I’d stop the ball and throw it back. In Nepal, when we were trying to bring Arjun home, I’d held a deep fear that I’d never be able to play catch with my son, yet here I was, throwing him the soccer ball.
Later, it was back to reading, but as usual, Arjun started horsing around, telling me jokes the other boys had told him at school. “Knock, knock,” he said.
“Who’s there?”
“Banana.”
“Banana who?”
“Knock, knock.”
“Who’s there?”
“Banana.”
“Banana who?”
“Knock, knock.”
“Who’s there?”
“Orange.”
“Orange who?”
“Orange you glad I didn’t say banana?”
Arjun cracked up, and his laugh was contagious. I pointed the camera at his head and zoomed in as he told another joke, and then another. His face filled the frame of the camera, and I studied his lips moving, shimmering in wavy pulses. I lost track of what he was saying, transfixed by the electrical impulses that were my son’s eyes squinting and twinkling, his round cheeks lifting, what I thought were his teeth, and, most remarkable, his curling smile. With each new joke, his head would tilt back. His mouth would spread out, and his entire face would transform. I had forgotten the details of how a laugh seemed to engulf the face as it erupted with joy. I couldn’t help but smile too, and the tongue display flopped out of my mouth. Spit flew everywhere and trailed out in long tendrils of drool. Soon we were both bursting with laughter until tears were rolling down my face.
* * *
That summer, Rob Raker and I were taking frequent trips to our local creek to paddle and test different radio systems. As we sat on our boats gearing up, I gave him an update on the BrainPort and how excited I was with the prospects. I also told him how intrigued I’d become by the concept of brain plasticity, by the brain’s ability to rewire itself and create new neural pathways.
“But I have to admit,” I said, “it’s pretty exhausting.”
“I totally agree,” Rob said. “And I probably wouldn’t be here guiding you right now, if the brain weren’t so adaptable.”
I wasn’t sure what to say to that, so I blurted out, “What the heck are you talking about?”
“I never told you about my accident, Big E?” he asked.
“I think I’d remember that,” I replied.
“It was about fifteen years ago, just a couple of years before I met you, I was skiing with Annette and a friend of mine. He was a really good skier, and I was kind of … well, testosterone got the best of me, and I was showing off.”
“You?” I said, “Showing off? I can’t imagine it!”
“The guy was ripping really fast, and I wanted to keep up with him. Annette was in front of me. I went to pass her, but she turned, and sort of cut me off. I swerved and lost control and went flying off into the trees.”
“Tell me you were wearing a helmet.”
“Ah, no. This was before everyone had the good sense to wear one. I was pretty busted up. I can’t remember much, but my elbow and knee really hurt; I could hardly use them. Apparently, I skied down on one ski. Annette later told me I kept saying, ‘Where am I? What’s going on?’ And they would tell me, and a couple of minutes later I’d ask again, ‘Where am I? What’s going on?’ I didn’t know who anyone was. Turned out, I’d broken my elbow and torn the top of my tibia off where the ACL connects to it. Oh, and I’d suffered a traumatic brain injury, although back then, they didn’t call it that.”
“What did they call it?”
“They usually just said something like, ‘You got your bell rung!’ But they actually called them ‘closed head injuries.’”
As I slid into my boat, it was shocking to think that Rob’s brain was damaged. He was one of the smartest people I knew. He had an engineering mind and was known as a problem solver, but if someone were to look at his brain, it might look very similar to Dr. Bach-y-Rita’s father’s. Rob had been in rehab for nearly a year and on disability for nine months. He tried all kinds of progressive brain treatments, one using biofeedback in which he was connected to an electroencephalograph (EEG) through electrodes placed on his scalp.
“There are four primary kinds of brain waves,” Rob explained. “Alpha, beta, theta, and delta. They’re all based on the brain’s electrical activity, and each is associated with different cognitive functions. Some are more prevalent when you’re deep in sleep, others when you’re daydreaming, and others when you’re alert and concentrating. With TBIs, those waves fall out of balance, or get scrambled. So they’d put me in a quiet, darkened room with my eyes closed. The technician would look at a computer monitor that displayed my brain activity and set the system up to produce an audible tone when I was able to achieve the proper balance: more alpha and beta waves, which are associated with conscious thought. It was all about refocusing and reshaping the waves and creating new neural pathways, a similar process as a toddler learning to walk, or Arjun learning to ride a bike.”
“Or a blind guy learning to kayak,” I added.
“That’s right,” he affirmed. “It was really hard, but with practice, I could sustain that state of mind for short periods of time.”
However, ten months later, he was still suffering problems characteristic of TBIs: excessive sleeping, memory loss, and challenges with decision-making, analyzing ideas, and multitasking. “I was working as an environmental scientist, managing projects in hazardous-waste and air-quality compliance, but after the accident,” he said, “I wasn’t really able to do the job anymore, not at the same level at least. During all that time, through three knee surgeries and rehab, I was laid up, and I did a lot of reflecting. I’d always burned the candle at both ends: working sixty-hour weeks, climbing, training. Until the accident, there was never really time to think about my life, but lying on my back, I thought about how lucky I was to be alive, and I asked myself, ‘On my deathbed, will I be psyched to be the guy who completed 653 environmental impact statements?’ It was like I woke up. The brain injury had caused a lot of pain and confusion, but in a way, it also gave me clarity, because I knew I wasn’t satisfied.”
“That’s a scary place to be,” I said. “You’re derailed, and you know you can’t go back, but you have no idea how to go forward. You’re kind of paralyzed.”
“Yeah. It was a little scary,” he admitted.
“So what got you to move forward?” I asked.
There was a pause as Rob put one of the radios together and handed me the headset.
“It was a peacock flounder,” he answered.
I smiled and said the only thing I could: “Of course it was.”
“A friend invited me to go to the Cayman Islands to do some rock climbing. I was just off crutches and couldn’t climb much, but I went along to do some diving, a passion of mine. I’d been shooting still photography for a while, but a guy had sold me an underwater housing for a video camera, and I wanted to experiment with it. One day, diving off Cayman Brac, I was cruising along the bottom, filming. I looked down and spotted these two tiny nodules protruding from the sand. Then the nodules moved just slightly, and I realized they were eyeballs looking up at me. As I came closer, it lifted up out of the sand, and I could tell it was a flounder. They’re really cool creatures, flat bodies that undulate when they swim, like an underwater magic carpet. The crazy part is that they’re born with eyes on both sides of their bodies, but as they mature, one eye migrates so that both eyes wind up on the same side. That’s much better for hiding in the sand and spotting prey. As I followed behind, the flounder was a drab brownish color that matched the bottom, but it reached a colorful reef, and I watched through the camera as its body began to change. It became purple, and paisley shapes formed all over its sides and fins. It wasn’t just any flounder. It was a peacock flounder, a marine master of disguise. I watched it come to rest on the reef, close its eyes, and disappear. It was perfectly camouflaged again. You see, a still photo only captures a tiny slice of time, but with video, the entire story of animal behavior could be revealed, the story that nature often hides unless you are paying careful attention.
“That week,” Rob went on, “I shot eight hours of video: sea turtles waving their flippers like wings and soaring through the water, octopus, squid, and cuttlefish. Each night, I showed my friends the footage and narrated why the animals were behaving in certain ways. That experience solidified the two things I love—”
“Let me guess,” I interjected. “Breakfast and dinner.”
“Actually,” he clarified, “the two I was referring to were the natural world and sharing those discoveries with others, to open their eyes to all that wonder.”
It was hard to picture Rob lying broken and derailed, unable to see ahead or behind. That was a perilous point that many didn’t recover from, but that moment underwater had become the energy to shift his lens just enough to envision a future and nudge him in a new direction. Thousands of years of evolution and millions of mutations had enabled the peacock flounder to camouflage itself. It was hard work. Nothing came easily. Rob had feared his brain was broken, but watching the flounder go from brown to purple in an instant, he knew his brain could change and adapt to new possibilities.
“After that, it was easy,” he went on. “It’s all curiosity from there. I had a dozen questions. How to edit? How to get the best sound? How to frame shots? Turns out, I didn’t have to go back to the office. That spring, I signed up for film classes at a community college, and in the fall, I’d landed my first job as an adventure filmmaker.”
“And two years later,” I added, “we met in Antarctica when you were doing that Nova show. So if you didn’t crack your noggin, we would have never met.”
“Exactly!” he said. “Let’s call it a happy accident.”
“I’ve been experiencing a lot of those lately,” I said.
“And now, here we are on this creek,” he said, “trying to figure out how a blind guy can whitewater kayak,” and he slid his boat into the water.
* * *
That July, it was time for another No Barriers Summit, this one just an hour from my home, in Winter Park, Colorado. It was our fifth No Barriers Summit, and we featured all kinds of new technologies: a vehicle with tanklike tracks for paraplegics to access the deep backcountry; a kayak that enabled quadriplegics to paddle; and a power-controlled wheelchair that a person with severely limited mobility could operate with his or her tongue. I showed the newest version of BrainPort, and Hugh Herr updated us with a new feature that enabled him to control the resistance of his prosthetic joints with his iPhone.
There were plenty of new people joining our community, showing up from all walks of life. On the first day, I was introduced to a twenty-five-year-old guy in a wheelchair, Kyle Maynard. I reached out to shake his hand and felt a callused stump at the end of a short, powerful arm that was as hard as a baseball bat. Kyle told me he was born with a rare condition called amniotic band syndrome (ABS). He was a quadruple amputee, his legs ending above the knees and his arms ending above the elbows. Kyle had recently heard about me and No Barriers and wanted to push himself and test his boundaries. “I’d especially like to join your hike in the morning,” he said.
For a moment, I was speechless. The hike was up a nearby twelve thousand–foot peak. We had all kinds of folks signed up—blind people using trekking poles and amputees using high-tech hiking crutches—but I wondered bluntly how a guy without arms and legs was going to hike a mountain. Countless times, people had asked a similar question of me, so I pushed that doubt away.
“That sounds great,” I finally replied.
Besides, we are No Barriers, I thought. If this idea was real, we had to find a way, and we didn’t have much time. That evening, I assembled a team to figure out how we were going to help him pull this off. Kyle seemed incredibly strong. His buddy Dan told me he was a champion weight lifter, pulling off twenty-three repetitions of 240 pounds to win the GNC’s World’s Strongest Teen competition. But climbing mountains required moving up steep, jumbled trails, through mud and snow, over giant piles of boulders, and across loose scree slopes. Kyle would essentially have to crawl, moving over the landscape like a crab. We scratched our heads, brainstormed, and schemed. Finally, we went to our hotel rooms and snagged a bunch of bath towels of different sizes. I knew it was dicey and improper to be jacking bath towels from a hotel, but we figured they lived boring daily lives, and we wanted to give them some real adventure. We went to the front desk and sweet-talked the clerk into letting us have a few rolls of clear packing tape used for mailing Lost & Found items. Last, we found a number of plastic grocery store bags. It wasn’t Hugh Herr’s $60 million prosthetics, but at least it was a start, and we hoped it would work.
The next morning, we took turns pushing Kyle up the steep dirt road in his wheelchair. When the road ended, we wrapped all four of his stumps with bath towels to provide a thick padding. Knowing it was going to be wet and muddy, we covered the bath towels with the plastic grocery bags and then taped everything down tightly, wrap after wrap, until it created a strong armor around his stumps. He hopped down and started crawling. Kyle had been moving through the world for twenty-five years on his arm and leg stumps, and he was surprisingly fast.
For the next eight hours, I hiked right behind Kyle as he scurried upward. Sometimes, he had to drag himself through deep snow with his jeans and shirt getting drenched and cold. When he got to a wall of boulders, he performed a cool acrobatic cartwheel over the jumble, landing on the other side. At rest stops, I peppered him with questions, and the more I asked, the more I was intrigued by his life.
From the outset, his parents decided to treat Kyle, their firstborn, as a typical child. Instead of carrying him around, they put him on the ground and encouraged him to crawl.
His father, Scott, was worried Kyle would need to be hand-fed the rest of his life, so he determined that he would need to learn to eat on his own. Kyle learned to clamp his short arms together like pincers and hold food like fruit or drumsticks. He also learned to drink from a cup and pour a pitcher of juice. His parents got Kyle a special prosthetic spoon that cupped onto his stump, but as he got older, he gave up the prosthetic spoon and replaced it with regular silverware, inventing an ingenious way to feed himself with an innovative move. He would tightly pinch the very end of the spoon between his stumps, then reach down to the bowl and snag the food. Then, raising his arms upward, he’d use one stump as a lever to press down on the end of the handle resting on his other stump and swivel the silverware so the food landed precisely in his mouth.
Kyle got strong support from his parents and his three sisters, even though one day in the sandbox, he discovered how to squeeze the plastic shovel between his stumps, dig into the pit, and come up with a shovelful of sand to dump over his sisters’ heads. In school, he was mainstreamed. His freshman year, he joined the football and wrestling teams, despite only weighing seventy-five pounds. Kyle went on to receive a scholarship to wrestle at the Division I level for the University of Georgia, his home state. Beyond his sporting exploits, I was impressed to learn that he had also figured out how to drive a car and could type fifty words per minute.
I related pretty strongly to Kyle’s story. My family had also encouraged me to reach. My brother Eddi had pushed me to join the wrestling team, and just like Kyle, I lost a whole season’s worth of matches before I finally experienced victory. My family had taken me camping, and my dad had been my primary guide through a half dozen family trekking adventures around the world. At first we had no idea what we were doing. He’d hike behind me, grabbing the elastic waistband of my shorts and steering me through the chaos. We had some pretty big spills together, and he never let go, even when we found ourselves bouncing and tumbling off the side of the trail. That technique had eventually progressed to me holding the straps of a guide’s backpack, then navigating with two long white canes, and finally using sturdy trekking poles and a bear bell ringing in front of me.
About an hour from the summit, Kyle asked me more about No Barriers, and I shared my goal to grow this idea into a powerful movement. “So many people get shoved to the sidelines and never recover, but imagine,” I said, “thousands, maybe millions of people, all coming together to break through their barriers, to get stronger as a community, and contribute to the world.”
“I know you’ll do it,” Kyle said. After a long pause, he said, “I have a No Barriers goal too.”
“Tell me,” I urged.
“Well, maybe I should wait until the summit. I don’t want to jinx it.” With that, Kyle started crawling upward again, and I took his cue and strode out.
About an hour later we were standing together on the high, broad expanse that marked the top. Kyle said his jeans were wet and caked with mud and grass. “But it was worth it,” he said, his voice beaming. The shopping bags were now ripped, the packing tape shredded. I knelt down and put my arm over his shoulders for a few summit photos. Then we both sat silently, catching our breaths. For Kyle, the view was visual, but for me, I could hear and feel the ground giving way to air and space that seemed to swallow me, spreading out into a massive expanse of sky. It seemed limitless.
Kyle began, “The goal I wanted to share with you, well, it needs a little explanation. My dad was in the military, and I always felt guilty I couldn’t serve my country. I was feeling kind of depressed sitting in the airport on a layover when these two servicemen came over and introduced themselves to me. They were MPs who’d both suffered severe burns in Iraq. They told me that as they lay in their hospital beds after being ambushed, they made a suicide pact with each other. But on the day they made that decision, they happened to see me on a TV show. After watching, they decided not to go through with it. I managed to keep it together while I was talking to them, but when I got to my hotel that night, I broke down and cried for hours. I think about those guys almost every day. So the reason I came to No Barriers was to see if my dream was crazy, or whether it might actually be possible.”
I waited for him to continue.
“I want to climb Kilimanjaro, the tallest peak in Africa,” he said. “I want to send a message to those guys in the airport, to all our vets, and to kids with disabilities, that regardless of our challenges, no obstacle is too great.”
I’d climbed Kilimanjaro twice. It was a long ascent, over many miles and tough terrain, and seven thousand feet higher than where we now stood.
“We’d want to get a solid team around you,” I said, “and you’ll want to replace those bath towels with something a little better … but I know you’ll do it.”
I remembered Rob Raker’s experience underwater. In a strange way, I thought, those soldiers had become Kyle’s peacock flounder—a chance meeting that created the energy to propel him toward this moment. And No Barriers, I hoped, had taken his dream and begun to make it real.
* * *
After the summit, I connected Kyle to an old friend of mine, Kevin Cherilla, who’d been my base camp manager on Mount Everest. Kevin now ran a guide company, K2 Adventures, regularly leading Kilimanjaro climbs. With Kevin’s support, Kyle’s plans took shape and his hiking technology began evolving. Through dozens of iterations and hundreds of hours of testing, bath towels and packing tape had become oven mitts and potholders, and then welder’s sleeves. Those had eventually given way to mountain bike tire treads, secured to his body with black gaffer tape. Finally, Kyle had connected with a Phoenix-based orthotics designer who developed the technology that transformed him into Robo-Kyle. His denim jeans became abrasion- and water-resistant nylon pants. Welder’s sleeves and tire treads became carbon fiber arm and leg sockets, held in place by a modified climbing harness. At the tips of the prosthetics, he attached flanged feet, shaped like elephant’s hooves and made from sticky Vibram rubber. To power up steep snow and ice, the Vibram soles could be replaced by steel-pointed crampons when needed.
Similarly, Dr. Bach-y-Rita’s idea of neuroplasticity had given birth to a dentist chair and eventually to a tiny camera on a pair of sunglasses and a microprocessor that enabled a blind person to see the world through his tongue.
Ideas like these were born in a burst of mental energy, but they usually languished and died as “impractical.” However, on rare occasions, people like Kyle struggled forward, painfully, awkwardly, to explore their world and push the parameters. There was a lot of flailing, even bleeding, along the way. Yet with enough time, they stumbled upon the tools that gave the idea substance. And that, in turn, fed the light of the human spirit and caused it to blaze. It was nothing but bath towels and packing tape, but combine it with that light, and you could go to amazing places.
Everything that lived and breathed had a life cycle, and dreams were not so different, starting unformed and indistinct and eventually taking on shape and clarity. I could hear Harlan Taney’s voice in my head, inviting me to paddle the Grand Canyon—277 miles and some of the biggest rapids in North America. Those rapids dwarfed anything I had ever experienced so far. I could remember vividly all the rocks I’d slammed into, the desperate swimming, the inaudible radios. I thought about the panic of being upside down, the fear that seemed to melt my will like wax, and the feeling of being massively overwhelmed by forces more powerful than me.
There was a moment when I had made a silent commitment to climb Mount Everest. At first I didn’t tell anyone. I was too scared to say it out loud. Now a new dream seemed to be beginning again and spinning me off in a new direction. Just as Kyle’s dream must have begun, my secret still hid tenuously in the deepest recesses of my mind. I could easily kill it and tamp down the feelings of regret and disappointment. But Kyle had reached the summit above Winter Park and decided to let his dream live and grow. I had to do the same. As daunting as it sounded, despite my many questions without answers, I would commit and then find a way. My dream to kayak the Grand Canyon was now real.