My whole world sat inside my silver Nissan Pathfinder as I made my way down a busy Huntington Beach street in California. My brand new baby girl was tucked away safely in the back seat, my wife sat by my side, and everyone else was on the outside. As I passed over the dry Santa Ana River bed I received a call from my sister telling me my father was in his final days of dying from ALS and I should call him.
He was the third of three siblings to die from ALS. None of that mattered to me. I didn’t know any of them. Their legacies were families broken by disease and divorce.
When I was twelve, he carried my mother and me halfway across the country and away from the rest of our family to start a new life. A little over a year later he went out the front door of our house for the last time. He showed up three more times over the following year and that was it. When any family member became sick or died after that, it was like my father’s relationship with me and death itself, just a cold and distant thing.
The Closing Gap
My brother was eleven years older than I, but that gap began to close when I married, moved near him, started a family, and our wives became friends. Our years apart had given us stories to tell each other and life was beginning to right itself, when he was diagnosed with ALS at the age of fifty-eight. I wanted to comfort him, but I’m the guy who was dropped off at the hospital at the age of eight to have open heart surgery by himself and lessons in comforting from others were sorely lacking.
I did the one thing I could do and simply showed up at his house as often as I could. There were lots of smiles every time I landed on his front porch but I could feel the anguish in his wife’s hugs. There were lots of laughs around the dinner table but I could hear the hope in his voice break when talking about his only granddaughter growing up.
Over his last year and a half I watched him humbly accept his weakness and our help. We would steady him as he walked with a cane, push him when he was in a wheel chair, and finally, care for the body that had trapped him when he could no longer move.
During the eight hours driving home after each visit my mind would wander about but would always end up at the same point: considering my hour of death. I could share the same fate as him (there’s 50/50 chance I carry the same gene).
I was breaking watching him break down. I could see my wife when I saw his wife climb into his bed just to lay next to him to feel his touch once more and cry. I could see my girls when I saw his kids trying to be strong when they visited him. When I watched him gasp for breath, I could feel the panic and wonder how I might handle the fear. Would I take my last breath burdened with anger or love?
The Cold February Evening
When my phone rang this time, I was daydreaming in a little Colorado mountain town hardware store and all my girls were running rampant up and down the aisles. My little tucked-in safe world had come untucked and my world was expanding. I swiped right and said hello, expecting bad news. (With ALS it’s always bad news.) My sister-in-law was in tears and asking me to come and say my last goodbye.
The cold February evening when I arrived at his house I spoke very little to her as she held his hand while he mumbled and moaned through an uneasy sleep. Neither one of them needed to hear me ask questions and ramble on, so I said good night and went to bed.
The scene in their living room the next morning looked and sounded the same as it had the night before. My brother’s hospital bed stretched across the floor, his oxygen machine softly pulsing in the background, my sister-in-law leaning over the armrest of her chair so she could hold his hand, and the wood stove in the corner of the room still burning.
When his wife told him I was there, his glassy red eyes beamed a bit more and I could tell he was happy once more to have me just stand by his side. I still didn’t have anything special to say and he couldn’t say much at this point either. I leaned over his bed, wrapped my hands around his big square wrists and said “I love you.” He lifted his head from his pillow as far as he could and whispered his reply, “Uv u.”
His weak voice gave the warmest goodbye I could’ve asked for. Simply showing up had given me the family I’d lost so long ago, the one I needed, the one beyond my little tucked-in and safe world.
Travis Jones is a blue collar dad filling up his journal for his girls. He wrote about his cancer in They Should Have Noticed My Hairless, Silky-Smooth Head and A 50/50 Chance of Life Turning Ugly Way Too Soon.