A Daughter's Notebook: Notes from an Unprepared Daughter

I applied for a powered wheelchair today. For my dad.

For my dad.

My dad who used to walk 14,000 steps a day.

That’s not something I know how to wrap my mind around easily. My dad, the guy who used to bike the 6-mile bike loop behind our house is going to need a wheelchair, and I just got done filling out an application to see if someone can help us get one. Because (I’m not sure if you know this) wheelchairs are kind of expensive.

I told my husband I had reached out about this wheelchair, and that we just needed to create a profile in this portal and apply. Easy peasy for someone like me.

“What do you need from me to make this happen?” he asked.

“Nothing,” I thought. “Because I don’t want to do it. Because doing it makes it real. Because I don’t want to do hard things. I want to hide. I want to delay. I want to pretend they don’t exist.”

Instead, I said, “Bring me my computer and have my dad send me the code from his email.”

And so I applied for him, and I became his partner on the application. The second person they could reach out to. His support.

The last time we went to the doctor’s office, one of the care team said, “The doctor was right. It’s always the nice ones. Always the nice guys who get ALS.”

Because that’s my dad. He’s one of the nice ones. We were there, cracking jokes in the room in between meetings with his care team, the many people he will see over the (hopefully) years that we deal with this disease. Funny jokes and dark jokes and simple jokes and dad jokes. All the good ones.

Because, he’s one of the nice ones.

And he doesn’t deserve this.