Hubie’s Battle

ALS is a bitch, a cruel disease that shuts down your body entirely, to the point where your brain is the only functioning piece left. I found out my dad was going to develop ALS in January of 2021, less than a year before he died. He was showing signs of ALS, and doctors said that he would develop it later in life. We just didn't think it would happen so soon, and that we would lose him so fast. Grasping the fact that my dad was dying, that he was going to get more and more sick each day, was something that my family and I never thought we were going to face. 

I found out on a cold January afternoon. My mom sat me down with my brother and told us. My parents had known since the fall that my dad was dying, and there was nothing to do to stop it. We knew my dad was losing mobility in his arm, but I never thought such a small symptom meant he had a fatal illness. I knew the effects of ALS. I just never knew how bad watching my dad go through it would be. 

Watching a person get sick is hard. I had to watch my dad battle to walk, eat, and breathe every single day. There is nothing you can do to physically take their pain away or make them feel better. All you can do is watch them fade slowly. There’s no cure, and doctors are still trying to figure its etiology out. I remember asking my dad one day in the car before I had learned about his diagnosis, “It's not ALS, right? Your doctors checked for it correctly?” I remember the silence that fell between us and him telling me, no, but now, looking back, it was a no that I should have interpreted differently. 

I still remember one of the last dinners my dad and I had.  We sat at a cozy little Italian restaurant -- just the two of us, a few months after learning about his diagnosis. We ate pasta from enormous bowls, and he told me he was sick, and that he wouldn’t recover. He was saying it for the first time, but he also told me how much our support meant to him. That’s what was giving him the strength to fight ALS.

Even during his last days, he roared with laughter at his own inability to eat which would cause a chain reaction. He never lost that smile, even when he lay in his hospital bed fighting for his life. 

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The Girl Who Cried Grief

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Hubie’s Diaries