I have ALS, you do not, so why are you so awkward around me? I’m the one enduring the jail cell that is my body, as I lose every bit of my independence. I wouldn’t behave this way if it were you…or would I?
As a person living with ALS I am very aware that I am in a minority with slow progression. If one can ascribe “lucky” to ALS, I and my family are lucky. However I too experience the distancing of friends and family, I have siblings that simply can’t see me in my current state. And I’m still mobile and active.
Many families experience extreme isolation due to the immense focus required to care for us. No time to entertain guests, regardless of the good intentions of those guests. Yes it’s painful to see us bed ridden, emaciated, gaunt and sustained by technology; beep, hiss, click…
Think of it this way; if we can endure living with ALS, you can endure a fly-by. Better yet! Stay and learn to care for me. This way my spouse/child/parent/friend (AKA caregiver) can comfortably go to the bathroom or have a bite to eat.
“ But I’m squeamish, and I can’t stand to see you like this. It breaks my heart, I just can’t.”
Okay, honestly, if I may be blunt, that’s a “you problem”. I don’t have a problem with you seeing me in such a vulnerable state, I would love a visit. [Some with ALS do want to quietly and privately live their life, respect this.]
So if you as a person living with ALS receive company or run into acquaintances while out, don’t hold it against them if they say…
…how are you?
…you look good.
…hope you feel better.
…I’ll pray for you.
There’s absolutely nothing wrong with these statements. Yes we know full well that at this point in time nothing will help us. So don’t alienate others by chastising them for their awkward greetings or goodbyes. They just can’t help themselves.