He learned that caregiving brought out his best qualities and the potential he always had.
- Posted on Jun 26, 2018
I first met Jesse at a student fellowship group I attended at Penn State. Every Friday night a bunch of us gathered in the basement of a building on campus to sing, discuss Scripture and talk about our faith. It was a very casual gathering—we usually just sat on the floor. Everyone but Jesse. He had cerebral palsy and stayed in his wheelchair.
I was a couple of years older than most of the kids. I had already graduated from college and was working as an industrial engineer for a government contractor nearby while deciding on graduate school. The job was interesting and I was learning a lot, but I was glad for those Friday nights when I could take out my guitar, kick back with some buddies and remember what it was like to be a student.
Jesse was majoring in horticulture. He had people who helped care for him in his apartment, and he’d zip around the campus from class to class in a motorized wheelchair. Everybody at the Friday fellowship group greeted him warmly, but it never occurred to us to ask him to tell his story or lead the prayers. With his unruly dark hair and beard stubble, he always looked unkempt, and his speech was hard to understand. At meetings he waved his arms involuntarily or lolled his head from side to side. I hated to admit it, but I found his presence off-putting.
I tried to get past my discomfort once and asked him how he was doing. But when I didn’t understand his answer I just smiled, embarrassed. “Great!” I said and went back to tuning my guitar.
Then, as the spring term was ending, my friend Jeff announced he had made plans for me. “Dave,” he said, “we need to help Jesse this summer. His usual caregivers can’t be with him on weekends. I’ve signed you up to wake him on Saturday and get him ready for the day.”
“Okay,” I said hesitantly. Honestly, I felt roped into it, but I convinced myself it was all in the name of fellowship.
That Saturday morning I found the key above Jesse’s door and let myself in. “Jesse!” I called. “It’s Dave.” His apartment was spartan, just a few textbooks and lecture tapes sitting on a desk. I found him in the bedroom without any clothing on, grinning up at me from the bed. I strained to understand what he was saying: “I have to go to the bathroom.”
As I lifted him from the bed—a dead weight in my arms—and lugged him to the john, I began to wonder what I’d gotten myself into. I’d figured all I would have to do would be help Jesse into his wheelchair and maybe open a cereal box. Now it was obvious Jesse needed me for everything. After he’d finished at the toilet, I had to carry him back to the bedroom and get him dressed.
He lay flat on the bed and I slid on his underwear, his jeans and a T-shirt. I felt completely ridiculous, as though I were dressing an adult-sized two-year-old. His arms flailed when I tried to put on the T-shirt, so I started talking to him—“Okay, Jesse, left arm…right arm”—and then I realized he was trying to help me. Waving his arms was just the way his body participated, like at our Friday gatherings. “Shoes?” I asked.
He glanced at the floor to where a pair of black Converse high-tops lay. I found some clean socks in a drawer and slipped them on him. His feet kicked as I tied his shoe and we both started laughing. It was like dressing a kid.
“I need a shave,” he said (I was getting better at deciphering his speech). I lifted him from the bed, settled him in the wheelchair and pushed him back into the bathroom. I was relieved to see he had an electric razor, but as I ran it across his face, trying to reach under his mouth and chin, I thought of my earlier reactions to his appearance. He’s completely at the mercy of whoever helps him.
“Teeth,” he said. This was going to be a challenge. I squeezed a dab of toothpaste on Jesse’s brush, then aimed for his mouth, bumping against his teeth. “Sorry, Jesse,” I said.
“That’s all right.”
I tried again and got better at it. Gives a new meaning to fellowship, I thought. There wasn’t much Jesse could do without the help of his fellow man! I wheeled him into the kitchen, poured some cereal in a bowl with milk and then aimed for his mouth with a spoon. Milk dribbled down his chin. “I’ll get better,” I promised. Jesse grinned broadly, threw back his head and laughed.
Every weekend that summer I spent some time with Jesse, either in the morning or at the end of the day. As the weeks went by I got to know him better. When I learned to listen to him closely, taking the time to wait for him to complete his sentences, I discovered how smart he was. He was clever and had a quick sense of humor. He always had some funny story about navigating his wheelchair across campus, dodging traffic or getting stranded when his batteries died.
So, one day at fellowship, I squirmed when someone went up to him and said, “How are you?” I saw Jesse’s face light up and heard a garbled word come out —the beginning of a sentence.
“That’s great!” the other guy interrupted and walked on.
That’s exactly what I used to do, I thought. Never really paid attention. Didn’t take the time to discover that an interesting person was there. I’d still be like that if my friend Jeff hadn’t strong-armed me into this. As I learned how smart Jesse was, I forgot how dependent he was on others.
Late that summer I dropped by Jesse’s apartment and found several bonsai trees. “Where’d these come from?” I asked.
“I made them,” he replied. He must have seen the look of disbelief on my face. No way could he have cut and trimmed a plant.
“I tell you what, Dave,” Jesse continued. “Why don’t you take me to the nursery and I’ll make some more bonsai?”
“Okay,” I agreed.
I helped Jesse into his second wheelchair, a portable one, pushed him outside and lifted him into my Toyota Celica. When we arrived at the nursery he directed me to a row of small potted junipers. Seven bucks a piece. Nothing fancy about them. Jesse picked out several and gave me the money to pay for them. I put them in the backseat.
Back at his apartment, Jesse had me line up the junipers on his kitchen floor. Then I heated some soup for lunch. Feeding him was less of a struggle than it had been; the chicken-noodle soup only dribbled down his chin occasionally. After I wiped his mouth one last time, he announced, “Bring me one of the plants.”
I picked out a juniper and set it on the kitchen table. “Now what?” I asked.
“I turn it into a bonsai.”
I had to be frank. “Jesse,” I said, “you can’t even hold a pair of scissors. How are you going to cut the branches?”
A sly grin crept over his face. “I’m not. You are.”
“Me? I don’t know anything about bonsai trees. I don’t know much about trees, period.”
“I’m going to teach you,” he replied. “First, take the tree out of the pot and cut off the roots.”
Finding some scissors in a kitchen drawer, I did as I was told. After I’d trimmed the roots, Jesse pointed to a cupboard where he had collected some small, shallow dishes. “You can replant the tree in there.” When I had finished, it didn’t look like a bonsai at all, just a pathetic uprooted shrub.
“Now the real work begins,” Jesse said. “You see that bottom branch? Cut it off.”
Soon I was lifting one branch at a time and waiting to be told how much to cut it. Sometimes Jesse told me to cut off the whole branch, right at the trunk. Other times I’d only trim the tip. Finally Jesse told me to put down the scissors, then place a smooth, shiny stone in the dish and lay some moss around the roots.
“There,” he said with great satisfaction. “A bonsai.” It was beautiful. The scrubby juniper had been transformed.
“It looks great,” I said.
“Just how I wanted it,” Jesse said.
“How do you do it?” I asked.
“I can see what the tree looks like in my mind before I start cutting it. Then I bring it out.”
I almost corrected him: before I started cutting it. But it hit me that, in a way, Jesse had done the real work. He had a vision in his head. Our roles had switched. He guided and I followed.
We made several more bonsai that afternoon and the next weekend I drove Jesse back to the nursery, where he resold those seven-dollar junipers for 45 dollars apiece. But by then they weren’t really the same trees. Their real beauty had been unlocked, the way Jesse had been transformed in my view. His personality had shown through. At times he didn’t seem handicapped at all.
Then I’d remind myself: He needed my help. He needed the help of our weekend team of volunteers. He needed the help of all his paid, professional caregivers. He was amazing at motivating us, getting us to do what he wanted and making us enjoy it. But at the same time he was absolutely dependent.
That August I started business school in Virginia. I was grateful to the fellowship group but mostly to Jesse, who taught me something important about being a caregiver. It’s a way to bring out the best in someone while they bring out the best qualities in you: patience, understanding, compassion and the ability to work as part of a team. After all, in God’s world, we are all dependent on one another.
The last time I saw Jesse at his apartment I looked at one of the bonsai that was still there. Such beauty from an unpretentious shrub. “How do you do it again?” I asked him.
“Just look for the potential that’s there,” he said.
“I will, Jesse,” I said. “I promise.”
This story first appeared in the September 2000 issue of Guideposts magazine.