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Baba's Shyest Moment

(March 2018) Back in Sudan for Spring Break - My favorite moment with my dad.

Around Baba’s 2nd year with ALS, he wasn’t able to prop himself up in the bathroom. This is completely normal for ALS patients, however it is the daunting milestone family members try to postpone. During the first year of ALS, when my dad still had some autonomy, my mom only needed to help him stand or sit on the toilet. But as the disease progressed, so did his dependence on us. We would carry my dad to the bathroom to help him relieve himself.

Carrying a 6’1’’, 230 pound man was no easy feat. The process was simple: get him into the wheelchair, race to the bathroom before he pees his pants (which is called code yellow, I’ll let you guess what the other code entails). Then pick him up from the wheelchair, adjust his body to stand straight but with a slight angle that allows his pee to reach the toilet, and finally let the fellow pee his brains out. But it would get so tiring when we had to carry him to the bathroom every couple hours because Baba had the bladder of a baby. The Eldawi family needed a more efficient way. We needed something to help us more than Baba. There was only one solution: this guy.

The urine bottle. Roughly the size of a normal water bottle or half a gallon of milk. This magical friend encapsulates my father’s urine by placing "it" at a 45 degree angle at the bottle’s opening. This was a friend who you seriously wanted to have a half-empty cup perspective on life.

My older brother, Husam, was the urine extraction expert. He knew how to execute efficiently and with finesse. He taught me his ways in roughly 2 rigorous bathroom run circuits. After initiation passed, I stepped up for my turn on the court.

Once it was my turn to help my dad, he was a little shy at first. This would be the first time I would see him naked naked. I was a little nervous myself. When I actually did it, I had a 5-second window before things got stream-y. My task was to do a suicide run to the bathroom to fetch the urine bottle before all hell broke out. Mainly because Baba never knew when he was going to go to the bathroom. And when he does know, the house will need to respond immediately.

Of course, I nailed my first shot within 4.2 seconds. My dad was successfully in the bathroom zone and I couldn’t be prouder. There was total silence. Almost.

Then my dad glanced at himself peeing multiple times.

I nodded my head “shinu?” (what)

My dad blinks and opens his mouth to breathe some air to fuel his mouth.

“Ya Hatim… it’s small because of the disease.”

I laughed with tears in my eyes. I could not believe my father just said that to me.

I replied to him, “I’m visiting my hometown” as I pointed down.

A man can lose all of his autonomy to the point he cannot go to the bathroom by himself, yet his pride still lies in the size of his...

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