It’s 108 degrees outside, and not much cooler in the dusty red cargo van. The air conditioner doesn’t work. The windows are rolled down as far as they’ll go. The breeze generated from the van’s speed doesn’t really help, just stirs the air around a bit, like soup. We’re embarking on a 40-mile expanse of highway in central California called the Grapevine—an unforgiving stretch that has no exits and no cell reception as it corkscrews through the mountains.
It’s dawning on me that I may have made a terrible mistake. Getting into a van with a stranger you met on the Internet is never a good idea, but in this case, there are unique risks. The man behind the wheel, Peter, is a quadriplegic.
I’m not scared of Peter. I’m scared of what he may be unable to do, which is to continue driving. It’s possible he will pass out, lose control of the van, and kill us both. I have to keep stopping myself from offering to take over. I haven’t the slightest clue as to how to drive this thing.
“You need to stay hydrated,” I tell him, feeling for the bottle of Poland Spring I’d put at my feet when we began our journey hours before, in the foggy deep blue of the early morning. The bottle is hot now, the plastic soft and crinkly. I hold it up in offering. Peter doesn’t see my gesture. “Water?” I say.
“Yes, please,” he says. “Thank you.” That he is still being so polite makes me feel worse. This dear man is going to drop dead at any minute and his last words will have been ones of sincere gratitude to me, the person who got him into this mess.
I hold the bottle between my knees and fumble to peel the paper off one of the straws lying around the glove compartment. My hands are shaking and I’m mad at them and then I’m mad at myself for being mad at my hands. “It’s really warm,” I warn, leaning over to him.
“It will have to do for now, can you hold it for me, please?”
“Yes, yes,” I say, fanning away the ‘please.’ I know the drill. It had been the same with the coffee that morning. The bottle is trickier because it’s so long and narrow. The straw just barely peeks out at the top. I have to get very close to Peter’s mouth, stretching the seatbelt all the way. Some of the water spills over, splashing his cheeks and chin, dripping down his neck. He takes big, get-it-while-you-can gulps, wincing at the unnatural taste from the plastic. He nods when finished and I put the bottle in the cup holder.
“I’m so sorry,” I say. “I didn’t know it would get so hot.”
“It’s okay,” Peter says.
He doesn’t look at me while he’s driving, not even the briefest of side-glances when we’re on a deserted patch of road. It’s something he warned me about when I first got into the car, but I still keep forgetting, interpreting it as an expression of anger or a sign that he isn’t interested in what I’m saying, especially now that things aren’t going so well. When I remember he can’t move his neck, that he can’t move most of his body, I feel bad for having forgotten.
More than 20 years ago, when Peter was 19, he dove headfirst into a too-shallow lake. His spinal cord snapped between his fifth and sixth vertebrae. Peter has no ability to move or feel his legs, and has extremely limited mobility in both arms. What mobility he does have took years of practice to acquire.
Because the break was worse on the lower left side of his spine, the effects of the damage are more pronounced throughout Peter’s right. He can move his left bicep, triceps, and wrist. His left shoulder has the broad, squared off look befitting the 6’2” man that he is, while his right shoulder dips down lifelessly. Though he has some mobility in his right shoulder, the rest of the arm attached to it is incapable of motion. Aside from the left wrist—which he describes as a lifesaver—Peter has no mobility in either hand. His fingers are folded, pads to palm, as though he’s loosely cupping a handful of crumbs, forever on the verge of releasing them.
Though I’d only met Peter in person that morning, I’d known him for a few months. We’d been chatting on Facebook after having been introduced online by a mutual friend. I was visiting L.A. for an indeterminate length of time, writing and living on savings while I cared for my mother who was recovering from a liver transplant. As often as possible I was making weekend trips up 170 miles north to see my father in Corcoran State Prison. A year or so prior, he’d been convicted of murder and sentenced to 19 years to life.
I had never mentioned this part of my life to Peter, until the night before a planned visit when my ride to the prison bailed (I don’t drive). I was running out of options, and suddenly I recalled Peter’s past offers to pick me up, how he’d added that he was perfectly able to drive. It was worth asking about. I thought Peter could be refreshing company. So often I dreaded the long somber drives to the prison, the struggle to be exceedingly polite to whomever was driving when I just wanted to be silent and alone, or talk about something that had nothing to do with the melancholy mission at hand. Peter and I would probably chat about books and movies, like we did online.
Hey Peter, are you free tomorrow? Wanna go on an adventure?
Sure, why not?
Here’s why not: I was essentially proposing the suckiest Saturday ever for Peter, who would have to pick me up at 6AM, drive me for three and a half hours to a desolate location, drop me off, then wait for another four hours while I visited with my dad, then drive me all the way back to L.A. I explained all this to him, and said I’d pay for gas and meals and give him $100, which was more than I could really afford. After a phony squabble, we settled on my just paying for gas and meals. He said he was looking forward to it and that despite the depressing circumstances we would find a way to have fun.
I didn’t have a mental image of the van I expected a quadriplegic to drive, but I assumed it would be interesting to experience. I assumed it would be like no other van I’d ever been in.
Peter drives a Ford E-200 Econoline cargo van. It’s an industrial, no-frills vehicle that looks like something a rock band on a malnourished budget would use for touring. Back when he bought it in 1999, it had cost him an additional $25,000 to have it customized to accommodate his manual wheelchair (a style he prefers to the recommended automatic because it requires him to challenge and thus strengthen whatever use he has in his arms). The van features a motorized lift, a lock-down function so the chair doesn’t roll away from the steering wheel and a lever system that substitutes for the gas and brake pedals. To steer, Peter places his hands onto joystick-like placeholders, and by rotating his shoulder can spin the wheel effortlessly—a system called “zero effort steering.”
But sometimes the van has a devilish mind of its own. There have been times when the lock-down function has given out, and Peter has simply rolled away from the steering wheel while in traffic unable to stop until crashing into something. Or when it has refused to unlock and Peter has been trapped inside, calling on friends and sometimes even random passersby to help free him. The motorized lift can be a pain. You just have to keep trying.
It wasn’t until getting into the van that I learned that like any vehicle, the van has blind spots, but Peter can’t turn his neck to see around them. It’s the passenger's duty to check for oncoming traffic during a lane switch. Without one, Peter changes lanes blind. I scoped the road at every lane change. Even then there were some close calls and I wondered how Peter had driven the 45 minutes from Sherman Oaks to my mother’s place in Alhambra without a collision.
It seems to be a combination of unfathomable optimism and sheer stubbornness that gets Peter behind the wheel everyday. Before his accident, he was hooked on cars. At 14 he bought a junky 70s Dodge Challenger and spent the next two years before getting his driver’s license fixing it up. When that conked out he acquired a 1975 Plymouth Valiant, a car he loved so much it inspired the name of his first rock band, Valiant Blue. That too died and he got a 1975 Dodge Dart. Days later he took the dive that broke him. He’s only had two vans in all these years since. He says he hasn’t formed much of an emotional bond with either. They’re just transportation now, ways of getting from one place to another. What kind of intimacy can you have with a car that you can’t get inside of to assess and repair? he asks.
As we’re on our way home from the prison there is trouble. It’s not with the technology of the van; it’s with the technology of the body. Peter is pale and frowning. I can’t tell what’s going on, but it seems he feel sick, licking his lips and swallowing like he’s about to vomit. It’s hot in the car but he doesn’t look like he’s overheating. He’s not turning red. He’s not sweating.
“Your spinal cord acts like a thermostat,” Peter explains. “And mine is broken. So when it gets really hot, my nerves don’t know to tell my body to sweat. So my body doesn’t naturally cool off. It just heats up like an oven. It’s pretty dangerous. I can just have a heatstroke.”
“So that’s what is happening now?” I ask. Yet again I’m stupidly waiting for him to look at me, lend just a glance of reassurance, but of course there is none.
“Just keep your eyes out for the next exit,” he says.
At his request, I pour the rest of the water on his head and down his shirt. It is a two-fold feeling to tend so intimately to a stranger’s body, to view it as mere machinery in need of repair. I’m reluctant to look as I pluck his shirt and expose the white of his back, not wanting to see anything I shouldn’t see, but at the same time I am comforted by the blunt honesty of the interaction. It feels expressive of some truth between us. Ours is no normal road trip no matter how you play it. A quadriplegic man that probably shouldn’t drive for more than 20 minutes at a time because of the strain it puts on his surgically wired neck, is taking a woman he met on the Internet to visit her father in prison.
“This is helping,” Peter says as I empty out the bottle. The water trickles down his spine and I wonder where its sentience begins and where it ends.
Soon Peter is dripping with warm Poland Spring. His eyes look more alert, his face relieved. We pass the rest of the miles until the next exit in the companionable silence of old friends.
“Okay,” he says when we near the off ramp. “Could you please check?”
“Yup,” I say. I stick my head out the window, craning my neck to look back. Cars zip past us. The traffic is thick and greedy and there’s no sign of a clearing. I am nervous and getting more so as my thoughts chime in loud and demanding: What if you don’t make the next exit? What if Peter starts to overheat again? What if he never stopped overheating and his body temperature is slowly rising, about to burst?
I don’t know! That is all I can think in response to the interrogation in my mind. I want to give up but I don’t know how to do that.
“What if no one lets us over?” I ask Peter. More questions unload and then I remember an exchange Peter and I shared that morning when I’d knocked over my purse on the floor of the van and its contents had spilled. As I crouched down feeling blindly around I wondered what he would do in such a situation, and asked him as much.
“Well, unfortunately,” he said with a sigh, “I’ll have to ask someone to help me out”
“And what if there’s no one to help?” I challenged.
“I wait,” he said. “I wait for someone to help.”
He appeared thoughtful, as though pondering a hypothetical universe where there’s no one to help out, no love or compassion or goodness at all, a universe I felt I lived in since my dad was taken away.
“What if you’re all alone and there’s nothing you can do and there’s really no one to help you? There’s no one in the world. It’s just you.”
I expected Peter to chuckle at this bleak world I was insisting upon but he took me seriously. “Well,” he says. “Then that’s it. Then I just let it be. I just leave it as it is. But that never happens. There’s always someone to help eventually, and hopefully I can help them somehow, too.”
We still have a little stretch of road remaining. Desperate, I stick my arm out and wave it around, indicating an urgency to change lanes. The driver approaching on our right immediately slows down, letting us in without hesitation. I wonder why I didn’t do that before. It was so easy. A little pathetic looking maybe, but who cares?
Within seconds we’re gliding down the off ramp. I see the giant McDonalds “M” in the near distance, a promise of icy chemical beverages.
“Thank god,” I say, “I didn’t think we’d make it.”
“Yeah,” Peter says, his laid-back tone restored. “It can get intense out here.”
Peter and I have kept in touch regularly since that day. Recently, for the first time, we chatted over Skype. I’m always disoriented when Skyping with someone for the first time. Here we are thousands of miles apart from each other and we’re looking into one another’s bedrooms, our respective realities pushed up against one another by virtue of a computer screen. I am distracted by the books in the background, the crumpled tissue on the nightstand, the bed so tidy except for the sheet hanging low on one side, inches past the comforter. It takes me a few moments to stop leering at Peter’s surroundings and just talk.
It is on Skype that Peter shows me how he brushes his teeth — with a device that clamps onto his wrist. It’s no more sophisticated than a plastic cup holder. He shows me how he signs a check with his teeth. His signature exactly the same as it was when he was able to write manually, “which goes to show you it’s all in your brain,” he says.
Aside from the van, there’s little technology in Peter’s life that isn’t in mine: the Internet, GPS, auto-dictation. And the van isn’t exactly cutting edge technology either. Though it sports incredible customization that let’s a quadriplegic drive it, it’s essentially a stripped down cargo van with a series of locks and straps—and a defective substitute for the traditional car, the kind Peter was able to work on and form a bond with and name a band after.
When asked what technology would really help benefit his life as a disabled person, Peter is quick to answer: a stem cell injection. Stem cell therapy is a new field of research, but early studies suggest that injecting stem cells into patients with spinal cord injuries could help them regain some function. Unfortunately, Peter explains, it’s not easy to come by, particularly not when you’ve been living so long with an injury.
“Most of the stem cell research is geared toward people who are newly injured,” Peter says. “The more time you have, the less chance it has at being effective.”
But there are always new clinical trials popping up that Peter is hopeful to participate in. Recently he heard about one testing robotic gloves. “Now that is something I would want to be a part of,” he says. “That is technology.”
This article was originally published at http://www.theatlantic.com/technology/archive/2014/10/driving-with-peter/381090/
