No Treatment, No Cure

My home care worker came today; I have a worker every Monday, Wednesday, and Friday to help me with my shower and exercises. Today, when helping me in the shower, the care worker noticed the commode chair that is stored in there while Chris and Dianne visit and use the guest bedroom, where the chair normally resides.

The care worker is from India, the Punjab to be precise. She speaks in broken English although she has been in Canada for a decade. In that broken English, she said "New chair?" I replied,"It's for what's coming next." She understood immediately. Her face fell and I could see the sadness creep into her eyes. I said "We know what is coming. We might as well prepare for it."

She helped me transfer from the shower bench to the wheelchair, and wheeled me into my bedroom. Along the way she noticed once again all the pills on my dresser and asked "Medication doesn't help?" I said "No. Medicines are for other things. For this, there is no treatment; no cure." I could see the look of confusion on her face, the difficulty in grappling with an illness for which nothing can be done. Her expression gave her away; there were more questions coming so I decided to forestall them right away.

I said to her, "With this disease, you die, slowly. First your legs die. Then your arms die. Then your breath dies. Then you die." She asked "How do you get it?" I replied, "Nobody knows."

While the explanation is simplified, it certainly crossed the language gap. She understood. Yet I could still see the confusion in her mind. I could almost hear her asking why it is, in a first world country, with the finest medical systems on the planet, where we can beat cancer, treat so many, prolong so many lives, that we have an illness where nobody knows its origin, there is no treatment, there is no cure.

It's easy for me to understand; I have ALS. For others, no matter what their language or culture or nation of origin, it's hard to understand. I get tired of explaining it sometimes, especially to people in the health care business. It's just what happens, just another thing I have to get used to, just another thing in my life... explaining in plain English that I am dying, one day at a time.