Look Me in the Eye: My Life with Asperger's (36 page)

I had never heard of a brown recluse until then so I went home and researched them. They are only the size of a quarter, and most people don’t even notice when they’re bitten. Still, the bite of the brown recluse can be worse than the bite of a rattlesnake. The skin around my father’s bite turned black and a hole appeared, right down to the bone.

Brown recluse bites are rare in New England. Of the four hundred bites logged in one database, only nine were in Massachusetts. Most were in the South. It was my father’s bad luck to be one of those nine in his weakened state.

His finger looked awful where he’d been bitten, and you could smell the sweet odor of gangrene. I thought they should cut his finger off right away to save him, but the doctor insisted the finger was still alive, so they held off. My father seemed to hold his own with the IV antibiotics, but he remained in a lot of pain. I wondered how long he’d be in the hospital.

When he wasn’t in the hospital, my father and Judy lived in a 1970s contemporary house that they’d added on to and made their own over the twenty years they had lived there. The main room had a cathedral ceiling and a woodstove in the corner. The stove burned wood my father and Judy cut together on the property. Bears and raccoons came up onto the deck, and the snow drifted higher than my head in a cold winter.

They’d moved there after getting married, each for the second time. My father had never been especially sociable—he may have even had a bit of Asperger’s himself—so a home in the woods suited him. He spent his days outdoors, puttering around the property. He had grown up on a farm in Georgia and he’d always wanted a tractor of his own. That summer, he had taken delivery of a brand-new John Deere 4510 with a cab and a front-end loader. Now, he was too sick to drive it, but he’d be able to look at it through the window while he waited to get stronger.

I lived about an hour away, but my father seldom called me. The only days I could count on his calling were my birthday and Christmas. And after my son was born, I’d hear from my father on Cubby’s birthday, too. Any other time I wanted to talk to him, I had to make the call. And even then he only came to the phone about half the time. Yet he always enjoyed seeing us whenever we went there. I never figured it out. Why didn’t he call?

By November, my father was back home, still weak but hoping to get better. Although he was pretty much bedridden, my stepmother got him into the car and brought him to our house for Thanksgiving dinner. We were all together—me, my mate, Cubby, my father and Judy, and my brother and his partner, Dennis. We even had Martha’s sister, Unit Three, and her mate, Three-B. Everyone looks happy in the photos I took that day.

At nine o’clock on New Year’s Eve, I got another call. “Your father was wandering around and he fell down the stairs to the garage. The ambulance is coming for him now,” Judy said. This time she sounded scared.

It turned out to be a pretty bad fall. He’d broken his back and his hip. He was lucky he hadn’t been paralyzed. He survived an operation to repair the break and was put in a cast to keep him still. Once again he was in a lot of pain. After a couple of weeks in the hospital, he went to a nursing home to recover. They told him he had to be able to climb two flights of stairs and walk two hundred feet before they would let him out. He was determined to succeed. But it was hard. We went to see him in late January and he looked as if he had a basketball in his stomach. Judy said he was retaining fluids because of trouble with his liver. Martha felt sick, because her mother had died of cancer the year before and that’s how her stomach had looked. It was not right, not right at all.

They let him go home on February 25. He was able to walk up the stairs and get around with the help of his walker. It was going to be a long road, but it seemed as if he was going to get better.

A week later, we went to see him. He could barely sit up. His stomach was swollen up like a beach ball, and his scrotum was like a grapefruit. He did not belong at home. While I was there, he had to go to the bathroom. Judy and I helped him stand, and he moved the five feet in his walker at a glacial pace. He said, “John Elder, don’t let me fall. I’m so scared of falling.” At that moment, he was once again a small terrified child. My confidence in his recovery was shaken to the core.

A few days passed. The swelling in his stomach worsened. His liver had been damaged by years of drinking, then by all the medicine he’d taken for his psoriasis and his arthritis.

On Monday evening, Judy called and said my father was being taken to the hospital again. Somehow, I knew this was going to be different from all the other trips to the hospital. I realized he was dying. I rounded up Martha and Cubby and headed for the hospital. On the way there, I was angry because I could not remember a single good time we had shared when I was young.

When we arrived, he was very weak but lucid. He seemed glad to see us. I sat there for quite a while thinking that asking him for better memories would be an admission of his impending death. Finally, I did it.

“Can you tell me about any fun times we had when I was small?” I asked.

I waited for the answer, terrified by the prospect that there might not have been any fun times. What would I do then?

But he began to speak. “When you were five,” he said, “I’d take you to the museum in Philadelphia. They had a big model train layout, and you loved to watch it.” And he turned to my son and said, “One day your dad asked the man in the booth if he could drive the train. And the man said yes. Your dad climbed into the booth with him and he drove those trains all over the board with a big smile on his face.”

I had forgotten about those trains, but when my father told Cubby, I remembered it like it was yesterday. I said, “After I drove the model trains, your grandpa took me to another part of the museum where they had two real locomotives.”

“Baldwins,” my father piped up. “The locomotives were made by Baldwin Locomotive Works in Philadelphia.” I was shocked that he remembered. A few years before, I had read a history of the Baldwin Works but I had no idea my father knew about it.

As he told his stories, things I had forgotten for almost fifty years suddenly came into focus, clear as day. I remembered the spring I learned to ride a two-wheel bike on the paved walkways outside the Cathedral of Learning in Pittsburgh. I never used training wheels. I went straight from a toy fire engine and a trike to a big kid’s two-wheeler, and I didn’t crash or fall off. I was really proud of myself.

My father said, “I got you a Rollfast bike, just like I had as a kid. Yours was a Space Racer, with a red gas tank and a coaster brake.” My father had a black Raleigh, an English Racer, with three speeds. We rode them together. When I outgrew the Rollfast, he gave me the Raleigh. He’d sort of given up riding bicycles by then.

I could not help sobbing as he talked.

“Do you remember Valley Forge?” he said.

I remembered running across the fields of Valley Forge national park, chasing the kite he made me. I remembered both of us running in the sun, my mother watching from the shade, until I fell and tangled the string around my ankle. To this day, I have a scar there.

There had been fun times, after all. When we left that day, he could see I was sad. He smiled and patted me on the head and said not to worry about him. He said he would be okay, but inside I knew he wouldn’t. I wished I were small again.

From that time until the end, I visited him almost every day. He got weaker and weaker, until one day he said, “John Elder, I’m dying.”

“I know. It’s sad,” I said. “Where do you think you’re going to go?”

“It’s a mystery,” he said. “No one knows.”

“Are you scared?”

“No, not really.”

Judy made plans to move him back to Buckland the following Tuesday so he could die at home.

My father said, “Will you be okay?” I said I’d be sad but I’d be okay. He said, “Will you look after Judy? She’s been really good to me.” I said I would. He asked if I’d help Judy with the house. I said I would. He asked about his tractor. I asked if he’d like me to get his tractor out for him to see one last time. He said he’d like that.

Then I sat for a couple hours and talked with him, my mother, and Judy. He became tired and I left for home, promising to return that night. I was very sad. I stopped at my brother’s and told him the end was near.

Afterward, I cried, and I wondered why dying people asked me to look after what was left. My great-grandfather Dandy had asked me to take care of the farm. My grandfather Jack had asked me to take care of Carolyn and to take care of the fields and the trees his father, Dandy, had planted. Well, it’s been more than twenty years, and those things are all gone now. Carolyn died, and the house burned, and the trees and fields are all gone. But I guess I did what I could. I returned just about every month to Lawrenceville, from the time my grandfather died until my grandmother moved away. Judy said it’s hard, being the oldest child. She’s an oldest child, too.

Monday, I went to work. A few hours later, Judy called. “They’re going to bring your dad home today. He’s getting weaker. We can’t wait till Tuesday.”

It was time to move the tractor. I gathered up my tools, my shovels, and my winch cables. There was no telling how deep it would be buried after the winter snows. I went by the school and picked up Cubby. We would move the tractor together.

It was spring in Amherst, but it was still winter in Buckland. The snow was waist deep in the field, and the tractor was sitting a hundred feet up the hill next to the shed. The bucket on the front of it was not even visible. Neither were the front tires. Still, the sun was shining and the tractor started right up. I put it in gear, and it shook but didn’t move. I tried to lift the bucket but it was frozen to the ground. I rocked it and twisted it, and all of a sudden it came off the ground with a bang, filled with a foot of ice.

“Let’s dig it out, Dad!”

Cubby and I dug around the wheels until the tractor emerged from the snow. We dug the snow away from the front and the back to give it room to move. I rocked the gears but it didn’t move.

We dug some more. We were sweating even though it was thirty-five degrees outside. As we shoveled around the back, the drawbars emerged from the snow. The arms were frozen right into the ground. Kicking them didn’t do anything, but a pull on the hydraulic lever in the tractor broke them free. Now the tractor moved. A whole foot!

“Dad, look! The front tire is flat!” Cubby was right.

“Damn, Cubby, how are we going to get a three-wheel tractor over a seven-foot snowbank and into the driveway?”

Cubby said, “Let’s winch it.”

Our Land Rover had a good winch on the front. Cubby waded through the snow to get to the Rover. He angled it in the driveway so it was pointing out into the field.

“Here’s the cable, Dad.” Cubby had dragged the line through the snow so I could hook it to the tractor.

Cubby waded back to the Land Rover and started the winch. I got in the tractor, put it in four-wheel drive, and locked the differential. That tractor rolled right through the enormous snowbank and into the driveway.

When the tractor came out of the snow, Cubbie saw it first. “Dad, look! The front tire is gone!” There was nothing but a bare steel rim. The struggle to get out had torn the tire right off the rim.

We fished the tire out of the snow and levered it back onto the rim with two big bars. We installed a tube and got that tractor back on all four feet within thirty minutes. Then we set to work moving the snow to make room for all the cars and the ambulance. That tractor could really dig, and I was sorry my father would never get the chance to see it run.

The sound of the diesel engine, the smell, and the activity were a good distraction for us. I showed Cubby how to run the loader and he shared the snow moving with me. A picture I took that day shows him with a big grin, lifting a huge bucket of snow and dropping it down the hillside. We got the snow moved, and when we were done we parked the tractor right by the stairs and sat down to wait.

The ambulance arrived and the two attendants pulled my father out the back. He smiled when he saw me, and he looked at the tractor. He couldn’t talk much. I asked if he wanted to go over to it and he said no, he was cold. But he smiled again. Cubby and I helped carry my father into the house and then onto the bed. Finally, he was home. I stood for a while and held his hand.

My brother came up and he got some old photo albums and showed them to my father. But my father couldn’t concentrate. He said he’d have to look at them later.

I gave him a hug, and I said I loved him. Very faintly, he said, “I love you, too.” And that was the last time I saw him. He died quietly at 2:30 in the afternoon the next day, while I was at work. It was a sunny late winter day. I got up and went home. It was over. The tire went flat on the tractor the next day.

In place of my father, I have my memories. For so many years, I could not recall anything about him except the bad and the ugly. Now stories and memories that were lost to me for thirty years have taken on life. I hope they stay.

Other memories began to stir, too. Today, at fifty, I can feel my bare feet sting on the sharp white pebbles in the dirt driveway of my grandparents’ house, and I can hear the crickets. I can smell that Georgia clay and my great-grandfather’s pipe. I can hear the
twang
as I reach up to open the screen door on the front of the house, and I can feel the cold floor as I step onto the black-and-white checkered tiles.