It’s no secret that I’m in awe of every one of my patients who have Lou Gehrig’s disease, aka ALS. Personally, I’m pain and lack-of-control averse,. Witnessing my ALS patients is as though I’m watching someone do something that seems impossible; like jumping out of a perfectly good airplane, or voluntarily walking into a venomous snake pit, or… You get it. Having ALS must be really frightening.
ALS has no predictable pattern like, for instance, as most cancers have. As the plastic-wrap-looking coating around the conductor nerves in the brain begin degrading for an unknown reason, the body is without a leader so body systems break down, and muscles go haywire. Think of a train running off the tracks, or your steering wheel popping out while you’re driving. No control.
Eric’s father had died from ALS, so all he his recollections were of his dad’s experience. And that sucked big time.
Eric’s wife was, um, really good with animals but terrible with people. Here’s a conversation I witnessed between them:
“Eric just open your mouth—get your teeth apart—so I can get the spoon in! C’mon, try harder! You’re making it so hard for me to feed you!” The spoon clinking against his teeth made me cringe.
I cleared my throat so she would hear me coming behind her. Eric had seen me arrive earlier. I gently said, “How can I make this easier for you? You seem very frustrated. I know you’re doing your best.”
In tears, June said, “My best?! Eric won’t try. I keep telling him to try harder and to believe he can do it. If he would believe more strongly, he wouldn’t be in the condition he’s in!”
Yes, I’m a nurse. Yes, I’m a professional. But the human in me made me want to reach over and poke her eyes out.
Rude. It’s rude and insensitive to tell someone that they don’t believe strongly enough so that’s why they’re sick. Yes, there are certain lifestyle choices that will most likely make you terribly sick—for example smoking, obesity, drug abuse (btw alcohol is a drug)—but keep this belief to yourself. If the person didn’t know this before they got sick, then leave him or her alone when they ARE sick. Concentrate on the good they’ve done in their life, even if it’s hard to remember. Tell them these things.
And it’ll make you feel good about yourself.