In the spring of 2002, Ben was a new dad and struggling artist. If he wasn’t preparing for an audition, or rehearsing for a play, he was writing, locked up in a room for days. I blamed his thinning hair and unhealthy pallor on not enough sleep or too many cigarettes. Clues drifted into our lives disjointed, fragmented. Perhaps he was trying on a new role when his words slurred or his head moved at awkward angles when he ate. His voice roughened because he had to shout in his last play. Diminished muscles in his hands could be the result of too much writing or typing. Weight loss reflected poor eating habits. Nothing more.
I remember caring for Ben’s two year old son John one summer morning while he went to the doctor for a check up. That was the first I knew that he was having difficulty using his laptop or a pen. Auditions were not going well because his voice sounded raspy. Afterwards, we met crowded around a small table at a sandwich shop for lunch. Ben dipped his head from side to side and chewed his food as if he’d had a few beers but it wasn’t noon. The doctor’s examination was inconclusive. Tests were scheduled.
As the weeks wore on without a definite diagnosis, I dissected each symptom. Fatigue or perhaps a blood disease that could be repaired with drugs. Or simple surgery. Nothing serious. After all, Ben had been the model of excellent health, never sick a day in his life, a muscular, physical specimen. He played every sport in high school, climbed more than one mountain in college, swam, ran, hiked. He’d spent summers kayaking, canoeing, camping. He’d recover.
Fourth of July weekend, we lounged on a hill in Mineral Point, Wisconsin and watched fireworks, swam in Cox Hollow Lake, grilled bratwurst on the deck. Time passed. The symptoms grew more pronounced. I hoped for muscular sclerosis or a brain tumor and wondered about my sanity. Ben’s voice grew more ragged. Lifting a glass of water took effort. By the end of the summer, he refused to leave the neurologist’s office without a diagnosis.
The world knows ALS as Lou Gehrig’s disease, as if he’s been the only one to sink into paralysis and struggle to take a breath. He stepped up to the plate in 1939, announced to the world life as he knew it was over, then disappeared from sight. No one saw his frozen ending. We’ve moved from the Industrial Age to the IT age and still this disease confounds brilliant minds. Ask ten people and at least one has intimate knowledge and experience with ALS. A son-in-law’s grandfather, a friend’s aunt, a workshop attendant’s mother. Make no mistake. This virulent disease makes people turn away in horror but it has affected someone you know. They just don’t talk about it.
The final and irrevocable diagnosis shattered any belief I had that we’d escape catastrophe. Instead of celebrating the birth of a new granddaughter, we were plunged into a monstrous nightmare. I pulled on my hiking boots and pounded the hundred acres we lived on while my husband of forty years cleared three acres of brush in two hours. The crash of timber competed with my screams. The tractor chewed up my illusions along with branches and dried grass. The birds scattered through the hills and the sun burned my back. The beauty of that day lives on in the midst of my pain.