The Way It Got Worse
Our Saturday morning routine was to meet up with my best friend and her dad to box. “Stella, my shoulder hurts this morning. I need to skip out today.” That sentence started years of tumult for us.
It went from arm pain to stiffness that always persisted. ALS took so much away. His speech slurred as he spoke words becoming longer as he awoke. There was no denying that he was getting sick. We started to talk about the fact that he was dying. We used to pretend it was just stiffness. For the first time, we admitted he had something fatal. Patient ears, that's what you needed. Time and effort to listen, even when communicating took longer than it was supposed to. He spoke with all the power left in his body until he got too tired to communicate. He would leave the room and lie down. I knew that the more tired he got, the more unresponsive his body would become.
My dad kept a persistent smile and laughter with all that happened. I was silenced at dinner and told not to talk so my dad would eat. His body would burn more calories with each breathing moment. He was getting too skinny. His body was slowly shutting down. We would laugh together. We would laugh at each other when I couldn't solve a basic math problem, or when he would spill his drinks all over the table. We would laugh at the way our dachshund, Klaus, would vibrate for no reason. Those laughs were medicine and muse to him.
In order to walk, my dad used a crutch, or simply leaned against me. He fumbled as he walked, his weight off-balance. He no longer had control of his body. Watching him walk and struggle as we strolled through Southampton town upset me. I could feel other people’s embarrassment for me, but I was never embarrassed. I just wanted my dad to survive. I wanted to scream “he’s sick you asshole!” and “stop looking at him!” but I kept walking, watching his feet shuffle along the pavement.
Sebastian's 18th birthday was spent skiing. We were in peak lockdown and the only way to get out was to ski. This birthday, my dad didn't make it up the mountain. He stayed behind and watched, and that was the moment I realized this disease was taking away, not only boxing, but all his favorite things. I also realized they wouldn’t be my favorite things anymore, either, without him.