Switched On

by John Elder Robison

  They would be together for quite a while. Hospitals have always made me very uncomfortable, and I could not bring myself to stay there. My son seemed to share my reluctance, but Maripat was strong and present. Little Bear depended on her most of all.

  She was surrounded by technology—hooked up to three computer-controlled IV lines, monitored on two TV screens, and talking to the world on Facebook. Day one included a spinal tap and chemo into the spine, because this kind of leukaemia likes to linger in the central nervous system. When it’s aggressive like hers they want to nuke it immediately. This first round would be the longest—about three weeks—and the toughest, with the highest doses. Once she got through that, she was scheduled for seven more rounds—each lasting a week, at one-month intervals.

  That was when the real demon reared its head. “I’ve had this stupid little cough for about ten months. They took a spit sample on the second day and found Aspergillus fungus. It’s time to start nuking it before I get into trouble being immunocompromised. Better a dead fungus than live mould eating my alveoli.”

  She sounded enthusiastically pugnacious, though every complication worried me more. But I couldn’t show my fear. “You can’t know what will happen,” Maripat told me. So I kept quiet as best I could. I reflected on our lives, together and apart. Little Bear and I had first met forty-three years before, in seventh grade at Amherst Junior High School.

  Both of us are so lucky Maripat came into our lives, I realized. I couldn’t imagine what we’d have done without her. Cubby and I get terrified, and we have to run away. Even with all my TMS and personal growth I still can’t handle hours in the hospital. I guess Maripat gets scared too, but she has the inner courage and strength to stay when we can’t.

  That night, Little Bear had her first weird dream. She had to get to school but the interstate was a bit backed up, which was why riding her tricycle in the middle lane was no problem. None of us knew what the dream meant, but I listened to every word she said now. The next day Maripat called me at four o’clock, while I was still at work. “They have to do an emergency operation. You should come out here right now.”

  Earlier that day, the doctors had discovered that the mould had spread to both lungs, and they said the outcome when that happened was “usually not good.” Now they wanted to cut through the roof of her mouth, remove the palate, and cut the infected tissue out of her sinuses. It sounded horrible. I asked to talk to Mary.

  She got on the phone and told me in a clear voice that she’d decided to do the surgery. “It’s the only chance,” she said.

  I told her I loved her and we would all pray for her safety. I told her I’d drive out and be there when she woke up. While I was on my way, I got another call. More doctors had come in, and they’d reconsidered the operation. They decided to monitor her progress with the medicine and wait a few days. She was too weak for surgery.

  When I got to the hospital she looked terribly weak. Maripat was petting her shaved head, and I walked over and petted her too. The moment I touched her, she purred and smiled. I knew it soothed her. Maripat sat down, and I petted Mary softly till she fell asleep.

  Before I arrived Mary had told Maripat that she finally realized I’d never meant to hurt her, that she knew I’d always loved her, and that she now realized I’d never been her enemy, even when we were getting divorced. It came as a shock to hear that she was still thinking all those things. It had been fifteen years since our separation.

  I felt so sad. She was visibly weaker and I knew I was witnessing the last days of her life, just like when my dad died. I resolved not to let her see me cry. Maripat said that we needed her to keep up hope, because there was a chance she could beat the infection. The odds are long, but it’s possible.

  Maripat was worried because Mary hadn’t eaten all day. When people are dying they often stop eating. The nurses told me that when my dad was sick.

  Days passed, and family came and went. What seemed like a hundred friends came to say goodbye. Maripat, Mary’s sister Karen, and Cubby had spent every night of the past weeks beside her. My stepson Julian went above and beyond too, keeping our home together while Maripat was in Boston, cleaning up and caring for Mary’s house, and spending time with her in the hospital. Now they were all home getting some much needed rest. Finally it was just the two of us, alone for one more night. I’d visited her a number of times during this sickness but this was the first night I’d stayed.

  She was very weak and barely able to sit up in bed. She couldn’t say more than a few words, and you had to listen closely to catch what she said. We both knew the end was near, and she was scared. Being alone terrified her, as did falling asleep. She desperately needed to relax, but the idea that she might never wake up kept her in a state of near panic.

  People talk about dignity in death, but there is no such thing. Grave illness knocks you down and narrows your vision. When it’s a strain to draw a deep enough breath to remain conscious you can’t think of anything else.

  It’s comforting to have someone beside you, holding your hand. My own scary experiences in the hospital had shown me that, when I’d had a combination of asthma, flu, and pneumonia, and I saw that with Little Bear. Holding her hand or gently stroking her head had an immediate calming effect. It may not have cured the disease, but it dissipated the fear for a little while and brought some healing relaxation.

  She couldn’t say much, so I told her about my day and the classes I was scheduled to teach ten days later at William & Mary. “I’ll go to the Jamestown historic site,” I told her, “and send you pictures of what those Virginia archaeologists are up to.” She smiled and nodded her head, remembering her own grad school days doing archaeology at Historic Deerfield, Massachusetts.

  Eventually I ran out of things to say, and we settled in for the night. She was in her hospital bed, and I had a cot beside her in the room. It was hard to fall asleep, and I woke up every time she coughed or moaned. “My neck hurts,” she said, and I padded over and rearranged pillows. She was in a soft bed with lots of pillows, but there just didn’t seem to be any position in which she was comfortable. When I fell asleep she started coughing and choking. “Aaaaaah,” she moaned. I said, “Woof,” and she settled down, comforted that I was still there. We passed the night that way, in a sort of companionable sleeplessness.

  I had to leave the following morning, but Cubby and Maripat were at the hospital to take care of Mary. The first thing I did when I got to Virginia was drive straight to Jamestown and text pictures of everything I could see to Cubby. He showed them to his mom, one by one, and she smiled. Things were stable for another five days, but then they took a turn for the worse. Cubby called me at nine-thirty on Monday morning, his voice shaking as he tried to stay calm. He sounded very logical—as he always does—but I knew how much he was hurting inside. Seeing his mother struggling and in pain these past weeks was surely the hardest thing any of us had gone through. “It’s pretty much over,” he sobbed. “She kind of stopped breathing, then she twitched, and then opened her eyes and rolled them up. And now she’s not responsive at all.” He had stayed at her side as her breathing got shallower and shallower. At least he is there beside her, I thought. I cannot imagine any greater gift he could bring her as she left this world. “I think she knows I’m here,” he continued. Then he started to cry again. Four hundred miles south, in my hotel room in Virginia, I cried too. Writing this today, a year later, tears run down my face again.

  At twelve minutes past two, Cubby called again, still sobbing. “She’s gone. . . . It was peaceful. . . . I was reading, holding her hand. . . . She just stopped breathing. No choking or anything. I closed her eyes and waited ten minutes to see if she would come back. Then I called you. The nurse was there, and she listened for her heart. I guess I have to go back and cover her up.”

  Three days later, she was buried beside her brothers at Granby Cemetery. She was fifty-six years old.

  Back in the Groove

  SPRING CAME, brin
ging a measure of light after a dark and sad time. The summer gave us a few months to recover, and then it was fall—the season for harvest festivals and fairs. Six and a half years had passed since the night TMS transported me out of my car and backstage to a Boston soul concert. Vivid as that memory was, it was just a hallucination. Now September was here, and I found myself waiting for another show to begin, one that was real and happening all around me.

  The lights had already dimmed, and the audience was stirring in their seats. Across the yard in the concession area, bartenders were pouring beer as fast as they could; they knew they were on borrowed time. Up on the elevated stage, twenty feet back in the dark, Gary Rossington and Rickey Medlocke of Lynyrd Skynyrd tuned their guitars. Maripat was settling into her seat out in the audience, beside my buddy John Juliano and his wife. John produces the concerts and events for the Eastern States Exposition—otherwise known as the Big E—and I come to West Springfield every year to photograph the shows and the spectacles. It’s always good to have friends in management!

  As public as my car business and writing are, photography sometimes feels like an activity I do in secret. I’ve been photographing performers at rock concerts, circuses, and fairs for fifteen years, and artists and venues license my images, but few viewers know they are mine. That’s the funny thing about photography. You pick up a book and see the author’s name on the cover, but hardly anyone knows who takes the photos on billboards or in magazines, even if millions see them.

  In the time I’d been taking photographs, I’d developed what I thought was a recognizable style. If you look at images I shot in 2007, you will see similarities to pictures I took in 2005, or 2002. I thought of my photographic style the way I viewed the grille on a car—it might change and evolve over the years, but if you recognized a brand of car by its grille in 1968, you’d know the same grille in 2008.

  That was true for me until the summer of the TMS study, when my style changed suddenly and radically. The colours in my photos suddenly got brighter, and the compositions got simpler. And viewers liked them better.

  It took a while for me to connect the alteration to TMS. I didn’t actually notice that a change had occurred until the following fall, when I switched my photo catalogue software, and a scan through my new image library in chronological order showed an explosion of colour after the summer of 2008, right after the TMS experiences.

  At first I wondered if I’d changed cameras, or processes. But I quickly realized that wasn’t the case. Cameras are usually used to render colour the way we see it, which is not bright and oversaturated. But my images had become coloured to the point of looking artistic because I set the camera that way. It must have been a conscious decision, though I can’t remember thinking about it at the time. Like the musicians in Spinal Tap, I’d started turning up all the dials on my camera as far as they’d go. Suddenly, I remembered something my son had said after a TMS session that summer. “Dad, the colours around me are all brighter, and I can see more shades.” I hadn’t known what he meant at the time, but now I realized the same thing must have happened to me. And it hasn’t faded away. Instead, it’s become an ingrained part of my style.

  My pictures used to be like the soup containers on the grocery store shelves—accurately coloured, properly composed, and boring. Now they are like Warhol soup cans—brighter and further from reality but more real to the viewers. They garner far more positive comments, from both performers and the public. At the same time I started moving in closer and framing my shots tighter. The result is a picture with one central element and fewer distractions. It’s less realistic than real life, which is full of distractions, but people see it as more real.

  Before TMS, I would shoot properly focused and framed head-to-waist torsos of musicians playing guitar onstage. And those pictures were okay; the musicians praised them and the public seemed to like them too. But as a comparison, in 2008 I shot Barry Goudreau, guitarist of the band Boston, and in one frame all you see is his hand, the face of the guitar, and the strings. Abstract as that is, it’s ringing with life and colour. The close-cropped image is so much more powerful, even though you can’t see who’s playing. I’d never done work like that before TMS. Now, it’s all I do.

  So there I was, right up front with camera in hand. It was unseasonably warm for late September in Massachusetts, and the fairgrounds were so crowded you could barely move. Over a million and a half people make the pilgrimage to West Springfield for the Exposition over its seventeen-day run, and I was there every moment I could break free from the garage and my other responsibilities, walking around, seeing the sights, and taking pictures. There’s no knowing when the stars will align and I’ll shoot a winner.

  Taking a moment, I reflected on how my life had changed. Sometimes I felt as if I had been turned upside down and shaken, even though any direct effects of TMS had long since dissipated. In some ways it seems like I’m back to being oblivious, but I still feel significantly changed when compared to my pre-TMS self, and the response from my friends confirms it. They’ve sure said that on the fairgrounds.

  Today I’m a lot more ready to accept that other people may have abilities very different from my own. Now I realize that most of the people around me can look in another person’s eyes and see his feelings. Even if I can no longer do that myself, the knowledge that I did it once—and that others are doing it all around me—is enough to step up my ability to interact with others. And it’s a change for the better. I see that every day, but it’s most visible when I have to have lots of quick encounters with strangers. That’s exactly what happens on nights like this, when I’m in a crowded arena shooting images of rock stars, circus acrobats, carnival operators, and their fans. My night at the fairgrounds might include a hundred quick hellos and dozens of conversations with the people in my photos, fair workers, and managers of all stripes. Now that I’ve been magnetized, those things just go smoother and better.

  As we waited for the show to start I talked to Mark Murray and Don Treeger, two other photographers who’d been hired to capture this spectacle. Mark and Don are long-time newspapermen, masters at the art of rendering today’s scenes for tomorrow’s front page. Years before, I’d tried and failed to engage people like them in conversation. Now I do it easily.

  Guys like Mark or Don used to make me feel uneasy; they were intimidating. After all, they are pro photographers and I am just an enthusiast. Sometimes I felt like they were adults and I was still a teenager, even though that’s decades in the past now. Today I realize they are just guys like me, there to do a job. It’s hard to put my finger on exactly what’s changed. All I know is, I can now be around them without feeling anxious, inferior, or threatened. If you’ve never felt that way it may be hard to imagine, but for me it’s a big deal.

  My fair-time acquaintances had picked up on the TMS-induced changes right away when they first appeared. They form memories of me but then they don’t see me for another twelve months, so it was a surprise for them when I seemed different and better, with no apparent cause. You expect kids to grow up and be more socially skilled but you don’t expect those changes in middle-aged adults.

  One person who commented on my development was Charley Van Buskirk. He’s been the Big E’s master of ceremonies for as long as I’ve been alive. Well, maybe not that long, but it feels that way. He knows everyone, and he’s well loved and respected. He’s also been around me enough to see how I was, and what I became. “You were always a very talented photographer,” he told me recently. “But you were also difficult, abrasive, and socially inept. I actually avoided you. Then, a few years ago, you changed, and it was dramatic, to say the least. Now you’re a sociable and likeable person that I seek out.”

  Gerard Kiernan said something even more surprising when I ran into him. Gerard is in charge of all the buildings and fairgrounds, and he’s the guy I turn to to get things moved or rearranged for a photo. Busy as he is, I figured I’d be the last person he’d want to see. “Not so,” he
told me. “You’ve become one of the most insightful people I know and I look forward to talking with you.” The idea that he’d say that about me—a middle-aged autistic guy formerly known for his social oblivion—was remarkable.

  Embarrassing as it was to hear how I used to be before TMS, it’s also kind of hopeful or inspiring to imagine that I could become so different thanks to a little change in emotional processing. And the change made me friends all over the fairgrounds. I was respected before, but now people liked me. What a cool thing to experience, especially for an autistic guy who grew up alone! Ten years ago, people just ignored me as I took my pictures. Now I sometimes feel I hardly get a chance to use my camera with all the folks who walk up and talk to me.

  I waited excitedly with the rest of the massive crowd for Lynyrd Skynyrd to start their set. I’d come of age hearing songs like “Sweet Home Alabama,” “Gimme Three Steps,” and “Saturday Night Special,” and it was a thrill to hear them play again, live. Live shows are the best, because they are music at its most raw and real. It was actually kind of a freak thing that they were here at all. ZZ Top had been scheduled to play this show, but they’d cancelled with two weeks’ notice when their bass player broke his hip. Like most people, I figured the Big E stage would be dark tonight, and I was happy to hear Skynyrd would be here in their place. Now they were onstage, and we were almost ready to start.