DARK ROOM
I can live without pretty much anything…I think…because as a pALS, I will learn to live without anything I previously thought was necessary for quality life. Like air, exercise, conversation, and being able to wipe my own butt. Now that list of things I can’t live without has changed, and while there likely was a time in my life when I said I couldn’t live without those things and I’d just as soon end it if I didn’t have the ability to get or do them, I know it isn’t true. As I saw in my practice, and as is evident to me now, having met so many pALS, we can and we do live without…a lot!
I often wondered why many of my patients continued to persevere, and live when so much had been taken away from them. I once took care of a wealthy, royal princess. She was blind and, speaking little English, required a translator. The relatively young patient lived permanently in a big, private room in the hospital, and had been there for many years. No lights were on. We rounded on her in the dark because she could sense light and didn’t want us to look upon her unless it was necessary. She had no arms or legs, having lost everything, including her sight, to a bad-assed case of untreated diabetes and sepsis. Yet she never once asked to end it. There was life. She lived. There is life because we can live without…a lot.