There are times when those near me believe I’m being rude or inconsiderate. Believe me when I say you will know if I am. What is actually happening is that I am most likely concentrating or focused.

Doing this takes on new meaning when living with ALS. How, you ask?

I’m so glad you asked!

Allow me to elucidate.

To a neurotypical person, that’s you, it takes but an instant to actuate your movements. For us pALS, even if completely immobile, because we will stubbornly try, it takes much longer, if at all. We are in fact attempting to accomplish the impossible, movement.

Every bit of focus and concentration is being exerted to move my feet and legs as I attempt to walk with my walker

I am screaming in my head trying to will my body to turn in bed. Or to pull the covers because I’m cold. Eventually breaking down and asking for help.

I am hyper focussed on my cell phone, texting with the only finger still under my command. Trying to finish my prophetic Facebook post before my finger relents and turns against me; typing indescernible text as it takes on a life of its own.

The majority of the times that it takes me a moment to engage it’s because I am grappling with my own body. Having a colorful, expletives filled exchange with my muscles.

You see, I’m not ignoring you, I’m not being rude. I am in fact heavily engaged in negotiations with me, myself and I. If you haven’t noticed “they” are stubborn!

TJ&O