Will & I (5 page)

All the lifting and positioning of my body for the tests was done to a mannequin. Gradually I let go of any illusions about control. My frustration over not being able to move or communicate turned to apathy. When the doctors' voices starting turning to noise, I didn't fight it. A numbness took over. Though somehow I was still afraid.

One of the few coherent thoughts I recall having during those first hours was a memory of visiting my brother at college a week earlier. It was a just-in-case visit, before the surgery, though of course we didn't say that. We watched the movie
Glengarry Glen Ross
. I can't remember a single scene—that's how nervous I was. I wouldn't let myself break down my fear into anything specific, so a broad sense of impending doom overshadowed everything. And now the worst was coming to pass, and that's what we'd done with our last hours together, watch a horribly depressing movie that I couldn't even remember.

The MRI results came back. The mystery over what had happened had finally been solved. I'd suffered a massive brain-stem stroke. It turned out that during the New Orleans surgery seven days prior, when the vertebral artery running through my shoulder had been “nicked” and then partially closed, it had thrown off a blood clot to the base of my brain. My father, who'd reached the hospital before the ambulance, had been urging the doctors to check the vertebral artery, but they concentrated initially on my carotid as the most likely culprit—it's the artery that leads most directly to the brain, and I had, right after the wreck, undergone a risky but necessary surgery on it, to close the fistula. Their assumption wasn't unreasonable, but we ended up losing valuable time by their refusal to listen to my father.

I was lying on my gurney in a small room beside the bulky machine I'd just been lying in. The father of a girl I'd gone to high school with was there—as a doctor, not as a friend—busying himself with something I couldn't see. I heard my father walk up from behind me and put his hand on my shoulder.

“There it is,” he said.

He held up an image with some dark squiggles in a glowing field. “This is your brain,” he said, “and these are the blood vessels.” Along one of the squiggles there was a bulge, about the size of a nickel, but an irregular shape. It looked like a snake had swallowed a cat. “And that's the clot,” he said.

He squeezed my good shoulder.

“We'll get past this,” he said.

Everything he said after that is fuzzy. I was too afraid to listen, or to hear. I remember thinking, “I don't have time for this right now. Eleanor is coming back in a few weeks.” In hindsight, it seems like I must have been crazy, to have been capable of such a mundane thought at a moment like that, but it was another way of keeping control. A person thinking such thoughts couldn't possibly be about to enter a new, nightmarish reality, or be about to die.

Will came in. He wore a sarcastic smile not unlike my father's, trying with his face to downplay the situation. I could tell instantly that he knew more than I did about what was going on and that the prognosis was bleak. I also knew that he wanted to leave, the second he saw me. He knew that I was conscious and trapped. And unless he could somehow get me out of it, I wanted him to leave, too. He said nothing and walked out.

I can't know for sure what he felt, seeing me, but because our thoughts run in the same channels, I know better than other people might about their brothers or sisters, by asking myself what I would have felt in his shoes. It's the frustration of the helplessness that would have been unbearable. In another family, with two other people, it would have seemed strange or even cold, his reaction, the way he'd almost spun on his heels. But he'd done it to preserve his sanity. The feeling was: at least one of us can get out. What I could never explain to a non–identical twin is that we both felt it. I watched him leave without judgment.

My condition deteriorated. The area around the clot that was being deprived of oxygen was spreading. There wasn't much the doctors could do. I didn't feel any effects—I was already paralyzed. I didn't know it at the time, or couldn't have put a word to it, but I had what's called locked-in syndrome. My brain was completely alive, but my brain stem wasn't, so my body and brain had come to have nothing actively to do with each other. Only my eyes were still under my control. I tried to bug them forward, to communicate an exaggerated expression of what I was feeling—I am here—but it must just have looked strange. They gave me painkillers, even though I wasn't relaxed enough to be in much physical pain. I could still feel my body, but I would have leapt at being in any amount of pain, if it would have let me resume conscious control of it. By that I could gauge the intensity of the fear. The injections at least let me sleep. The dreams I had then have stayed with me. They offered no mental release, no escape. In them I was also trapped. In the most vivid, I was stuck at the bottom of an abandoned well. It had no opening at the top. The only light that came in was from a window high up. To wake from those nightmares not into the usual ecstasy of realizing you'd been dreaming but instead into an entrapment every bit as real as the dream, or more so … If I could have had, in those moments, a switch and I had been able to move my hands, I would have turned myself off.

When Will returned to the hospital the next day, my mother and father took him off to a private room. They told him what the doctors had told them, that I was “more than likely” not going to survive the week. When my blood pressure began to drop as predicted, my father went to Elmwood Cemetery, near the old football stadium, to look at headstones.

 

7

There used to be an ironworks near my house in Shelby that converted ore for the Confederacy during the Civil War, but it closed down a century ago. There's an abandoned hotel there. According to Google Maps there's a beauty salon somewhere, but I've never seen it. It's probably just a trailer. People do that a lot, put a sign in the front yard and declare their home a place of business. Pet grooming. There's a deer-processing place down the road called Swamp Nannies.

My house sits at swamp level. In the summer there are spiderwebs all through the woods, and mosquitoes and deerflies everywhere. I have to douse any exposed part of my body in bug spray before I go on walks, even the crown of my head. I go out the front door and to a trailhead on the corner of my land, just out of sight, a trail that goes about a half mile into the woods and curves around by a railroad bed. I have to be careful about tripping on the trails, because of the way one of my feet has a tendency to drag when I step. Especially on the railroad bed, the roots are raised up so that your foot can actually pass under them. I fell there once and split open my chin. I've also broken my collarbone walking those trails. Mainly, though, I fall without incident. I find a tree to pull myself up on and keep walking. One time I was back there with my dog Jay—she was eight or nine at the time—and I fell. There were no trees around. We were in a clearing. Jay stood still and let me push up on her back.

When I bought the house eight years ago, it seemed too big at first. A lot of rooms, seven or eight, depending on how you count. It felt like it ought to be a communal space, or for more than one person and two dogs, but it was all under my ownership, and so were the woods. The owners prior to the people I bought it from kept horses. There were two old wooden stables at the end of a field behind my house.

When I moved in, the son of the previous owner leased two acres at the top of the property, near my mailbox. He lived in a converted trailer there. He was extremely neat and respectful to the point where I sometimes wondered what he was hiding. If he wasn't working at his father's pawnshop he was always home. He never turned on the lights when it got dark, and there was always the blue glow of a television or computer screen in the windows. I never saw another car up there. Finally he moved on and found somewhere closer to work, as he'd been saying he wanted to do from day one.

After he moved his trailer off, the little deck he'd built around the outside remained. Bubba showed up asking about the scrap wood. That was the day we met. He wanted to build a shed for his four-wheelers, plural. I said he was more than welcome to the wood, that I would have had to pay someone to take it down otherwise. (His shed never ended up getting built.)

I like being able to do things I'm not supposed to be able to do. A neurologist I used to see—an egomaniacal Latin American who was also very hardworking and good at his job—once told me he wanted to do a demonstration for his colleagues, to show them an MRI of my brain, and then to show them me. Point being, you couldn't always trust the MRI. According to my MRI, I should have been more or less a vegetable, and I was out hiking alone in the woods, even if I did fall some. I was a poster child for what they call “brain plasticity,” the phenomenal capacity of the organ (our understanding of which is still in its infancy) to evolve new pathways and strategies for communicating with the body, adapting itself around a traumatic event. Every time I did something like, for instance, spend a year perfecting a lightbulb-changing system—involving a long Appalachian-style walking stick with a wrist strap, a table, and my good arm—I felt satisfaction, because I was flouting science.

But the longer I lived with my new condition, the sillier it seemed to spend vast amounts of time on basic tasks just to be able to say I'd done them myself. Also, I was learning to enjoy trusting people. I'd been forced to find out a curious thing about human beings, that although most of us don't like asking for help, as social animals we do like helping others. I've been burned more than once by having my trust taken advantage of, but not enough to make me quit giving it. The experience can be pleasurable for both parties. Except, of course, when the needier party becomes too demanding, or when the one doing the helping is pushy and presumptuous.

Bubba was too lazy to be pushy, which put me at ease, too. For all his shiftlessness, he was personable, he got people, he had good instincts about when I could use his help and when I could use my space. Also he needed money. He and his stepson soon began changing clocks and lightbulbs, things I couldn't reach despite any amount of time and ingenuity. He once cut down a dead tree in my yard. His wife, Penny, started clipping the bushes out front. She was a dark-haired, demure woman from New Jersey, about forty. I met her before I met Bubba. She and her son were riding four-wheelers, cutting through my property. I was out walking on the trails and ran into them, or they almost ran into me. They wore no helmets. She introduced herself in a voice as soft as Bubba's was loud.

I wake up early out here, before six o'clock. My brother and I have always been early risers. Our friends used to hate having us spend the night, because we would get up so early, and they all wanted to sleep. One family Will went on beach trips with started packing extra games for him to play before they woke up.

Because my movements since the stroke tend to be much more conscious and deliberate than they used to be, my decisions are, too, starting with which side of the bed to sleep on. Instead of always sleeping on one side or the other, or just dropping down wherever I prefer, I always sleep now on whatever side is closest to the bathroom. It's easier for me to get out of bed to my left—the muscles being stronger on the right side of my torso—but if the right side of the bed is closer to the bathroom, I'll sleep there. By now these decisions occur at such a speed as to make them appear unconscious from the outside, but they're not. I'm always making them. Actions as simple as brushing my teeth, shaving, and showering all begin with the question “How am I going to do this?” If there are options, the easiest and most efficient win out. After years of shaving with my spastic left hand, I realized time and energy would be saved if I picked up my good hand (the right, which is attached to a limp arm) with my good arm (my left, which is attached to a spastic hand) and did it that way. No one was grading me on style. The same goes for brushing my teeth: I use the left arm to get the right hand up to my face, the right hand for finer motions. I've also learned to help out by moving my head back and forth. With showering I had to be a little more creative, applying the shampoo to my head with my left hand, then picking up my right hand to lather it into my hair. Drying off and getting dressed I won't even get into.

Just the other day, when I was in Birmingham, I received an e-mail message saying the new cable box I'd ordered was to be delivered to Shelby, so I packed up and returned. When the box hadn't arrived by 1:00, I went into town for an hour. Of course the delivery guy had come and gone by the time I got back, leaving the replacement by the door. (In the past, he has set up the new box and taken the old one himself.) Knowing I shouldn't, I decided to try to change it out myself. This involves moving the armoire in which the ancient, tanklike television sits out from the wall and unplugging the old box's power cord. Initially, I was surprised at how easily I could make the at-least-thousand-pound piece of furniture slide on carpet, when I hadn't thought I could make it budge, but I quickly realized it was not only moving on its own, it was also leaning. The front right leg had broken off and the piece was being held up on only three legs, with the fourth bent at a sixty-degree angle. It could've given way at any second. Luckily, the fattest book I own,
The Anatomy of Melancholy
by Robert Burton, fit perfectly under the corner so that even if the leg was removed the piece would still be held up, secure until someone could come help me with it.

A lot of my time goes to maintaining my body. Another person might slack off for six months, gain some weight, then work out to lose it again. For me the same lapse would lead to a reduction in mobility that could be hard to recover from. Three times a week I drive ten miles to the twenty-four-hour gym in a nearby town, where I work out on the machines I can use myself. Most of the other members are retirees. It's the only gym I've ever frequented where I've seen cigarette butts in the parking lot. Every night I ride an elliptical machine at home. I eat the same protein-rich, high-fiber lunch straight from the pot it's cooked in—quinoa with black beans, a spoonful of sour cream, splash of pepper sauce. I cook eggs or pasta for dinner. Because I wake up early, I have to take a nap at some point during the day, especially now that my body doesn't operate at the level it used to.