General Discussion

I posted this on Twitter about a month ago.

This is a very short story 📘, not a thread 🧵 , it’s about human kindness and adapting.

#ALS is not for the faint of heart. Constipation and diarrhea are two hazards to be avoided. Sometimes despite our best efforts we find ourselves in the danger zone, a place we don’t want to go.

The other night after dinner, despite best management practices I could not help it, I soiled myself. Since being diagnosed with ALS, this has happened 3 times. The first time I was able to take care of the problem myself. The second was minor in nature. This time was epic.

I was so embarrassed. I was sitting in my power wheelchair and fortunately had a chuck underneath to contain everything. I told my caregiver, through tears, I’m so sorry and so ashamed. Before I even could finish my speech. This wonderful woman with a big smile looked me in the eyes and asked, “Glen why are you apologizing for being human”? I had no real answer. I told her I just didn’t want the rest of my normal caregivers to know. She said I will take care of you, trust me. 

She leaned me back in my chair and with wipes and gloved hands proceeded to remove 99.9% of the mess, and cleaned me up. Shortly after I went to bed, but not before finishing part of the nightly routine, pooping in the garbage can while suspended in the hoyer.

I know, I could not imagine it either before ALS.

I have such a love and appreciation for my caregivers. ALS sucks, but as a good friend with ALS told me after hearing what happened, “I hate that situations like yesterday happen. We have enough to deal with.  But they are going to happen. We just have to let go of feeling mortified somehow.”

She’s Absolutely right!