When I was a kid, I relished my stepdad’s freakish stature. He had thick lips and an abnormally wide face, and when people asked me why he looked like that, I would say proudly, “He has gigantism,” like Andre the Giant or Lurch from The Addams Family.
My stepfather was diagnosed with a tumor on his pituitary gland as a young man in the Army. The first procedure they tried left a white scar around the perimeter of his face. I used to move his wiry gray hair around looking at it, wondering about this man who once had his skull sliced open like that. Sometimes when I touched his scar he’d say “bra-ha-ha-ha” like Dracula to make fun.
Famous giants are typically tall, like Sandy Allen, the world’s tallest woman, who died in August, but my stepdad grew out rather than up. If you weren’t familiar with Acromegaly, you’d just notice he looked carnivalesque, out of proportion. Even at the end of his life, when he weighed less than 150 pounds, he looked large because his rib cage protruded over his sunken belly, hiding how thin he’d become. He wore special custom-made glasses and shoes. The mattress he and my mother slept on wore out more quickly than it should have, leaving a deep indention on his side of the bed.
It’s difficult living in a giant body like that. I used to watch him crawl up stairs, grunting, in the two-story house he shared with my mother. My mother would dress him because most days his arms couldn’t move well enough to put on his shirts. But he was living way past his doctor’s predictions. In an anthropology class several years ago I saw a skeleton of an acromegaliac. Giants don’t grow big evenly. The bones I saw had grown wildly, sprouting several spurs all over the connecting heads. It was no wonder he hurt so badly. My stepfather’s bones scraped against one another, causing debilitating pain.
Fluid accumulated in his legs so that his feet carried over 20 pounds of water, making a trip from the car to the magazine section of Barnes & Noble a 45-minute expedition.Outside of a brief stint at the Unitarian church, we didn’t practice religion when I was growing up. We had two stuffed mice instead of an angel on top of our Christmas tree. The nativity scene displayed atop our piano was an igloo as the manger with three wise penguins overlooking a cocker spaniel figurine. My stepfather was adamantly agnostic, favoring scientific principles and a love of animals over theism. He used to say that after he died he wanted to be stuffed and placed on the front steps of our Unitarian Church with a mechanized arm greeting the congregation. After a health scare, his friend signed a card for him saying, “we couldn’t find a taxidermist, so you can’t go yet.”
At age 17, I had a religious experience straight out of the Pentecostal rule book. Like many of the newly converted, I took it to the extreme. I spent some time with the fundamentalists, trying to convert anyone in my path. This did not go over well in my family. In fact, my mother warned me that if I tried to save her she would slash my tires. I knew better than to approach my stepdad. He believed that religion was a fantasy for the weak and too often used to control people.
My stepfather worked until he was 62, just shy of his target date for retirement. He had a desk job developing software. He wasn’t able to walk from his office to the cafeteria for lunch so he ate at his desk. By the winter before he died, he couldn’t make it from the parking lot to his office anymore, so he left on medical disability. He walked around the house hunched over. If he dropped something on the floor he’d circle it, lowering himself to the ground inch by inch until he could pick it up. It was excruciating to watch, though he kept up his verbal peculiarities, moaning and exaggerating the situation for laughs. I’d stand behind him and offer to help. “I’m almost there,” he’d say as he circled down.
After retiring, he spent most of the day in an expensive and oversized recliner watching Perry Mason reruns. If he had to get up he’d rock back and forth, grunting, to propel himself from the chair. He couldn’t stand up straight because of deteriorating spinal stenosis. The spurs I’d seen on the skeleton were now all over his vertebrae. Later, when he saw a neurosurgeon, the doctor said that his cervical deterioration was “quite impressive.” It was too late to do anything about it.
His health declined rapidly. Because of his acrobatic acts of dislodging himself from his chair, he injured his shoulders. Then he couldn’t move his arms to point the remote. Then fluid accumulated in his legs so that his feet carried over 20 pounds of water, making a trip from the car to the magazine section of Barnes & Noble a 45-minute expedition.
In the midst of constant physical suffering he moved closer to a God he’d always made fun of. I think God meets us where we are.Joyce, a smiley ex-prison guard, was hired to sit with him and watch television while my mom and I worked. During commercials she talked openly to him about God. My mother rolled her eyes. Since my initial conversion, when I wanted to speak in tongues, I’d been quiet about my belief; I didn’t want to disappoint my parents with religious rantings. But I admired Joyce’s outward display of faith.
Christmas night, two weeks before he died, my stepdad and I talked about God. I sat with him and told him it was okay to pray if he wanted to. He shook his head, but he told me he appreciated the prayers Joyce said for him. We sat next to the hospital bed we’d installed in the living room, surrounded by vestiges of his illness: his urinal, a box of latex gloves, a shiny hydraulic lift. His recliner had been moved directly into the middle of the room to make transferring easier. By then he couldn’t support any weight and his heavy unbending body took at least two grown women to move. He’d sit in his recliner and go into spasm, his arms reaching out to the sides and his voice deepening as his muscles tensed. Touching him made it worse. In 10 months he’d gone from propelling himself out of his chair to being totally dependent on a team of caregivers. It was awful.
We took care of his giant body piece by piece. In the midst of constant physical suffering he moved closer to a God he’d always made fun of. I think God meets us where we are and doesn’t make terms with us that we can’t meet. I couldn’t bring myself to pray with him or over him. A few times I’d tried praying aloud at the dinner table or during a crisis, and it came out sounding awkward and strange. Sitting with him as he suffered, I tried to offer to pray for him but couldn’t get the words out of my mouth. Instead I prayed silently and listened to him, trying to do as I believe God does, being with him right where he was.
Parents can seem larger in life to their children, but some truly are giants. Recounting the death of her stepfather, for whom nothing was easier by being freakishly big.
