My current thoughts on Communication: The ability to
communicate easily, quickly and accurately is often taken for granted,
especially now during this age of smartphones.
I am not one of these people. For me every communication, no matter how
mundane or how complex, is a struggle. And every successfully communicated
thought is a triumph. It is glorious when I am understood, but It is terrifying
(frustrating, depressing) not being able to communicate my needs, opinion or
comments. I am locked inside… my mind continues to push thoughts forward, but
there is no effective mechanism for the words to get out. I have no voice, no
ability to gesture… no easy to use technology (I use Tobi communication devices,
PC-Eye Go is used for writing), so my caregivers and I resort to lip reading.
Try it…very difficult, especially if the context is not clear.
This lack of the ability to communicate is the largest
boulder ALS has thrown at me. It is the reason I have become anti-social.
Attempts at conversation are exhausting…I apologize to my friends for all the
canceled visits. And without a voice the quality of my life has diminished, but
I try to remain positive. Thankful for the ability to watch and listen.
