It was a warm, humid, no wind
October afternoon in Honolulu, Hawaii.
"Do you want the window open
or the air conditioner on?" She asked.
"Yes," I answered.
"You want the air
conditioner?"
"No."
"Would you like the window
opened?"
"No."
"Okay then, let's turn on
the fan..."
"No."
"What DO you want?" She
was quite perturbed by now.
"Both." I managed.
"You want the fan, the air
conditioner, and the window?"
"Yes," I answered,
trying to smile, even though I could care less about the fan.
"Great, is that everything?"
She said, visibly relieved, a little bit confused.
"Yes," I responded,
even though there were 10 other things that I wanted—
She opened the window, turned on
the air conditioner and the fan, and then she gave me the hug that I was hoping
for... So goes my life living in a yes/no world.
The horrible reality of ALS is
that you get to watch (live through) the progression of the disease. For some,
the negative progression is faster. For me, it has been relatively slow and
steady the last eight years. My brain stopped communicating with my muscles,
first the legs, the arms, and then the fingers until I reached my current
frozen state. I started with shortness of breath, moved to using a BiPAP
machine several hours a day, to finally complete dependence on my Trilogy
ventilator. I progressed from delicious plate lunches, to soft foods, to find
myself now receiving all of my nutrition through a stomach tube. Through all of
this, I was blessed to have my voice stay strong, but now, that is also
beginning to succumb to the relentless downward progression.
Over the years, while everything else
became weaker, my breath has worked well with my vocal cords allowing me to
have meaningful conversations with my family, friends and caregivers. Those of
you who know me personally remember my LOUD voice. It stayed with me for a long
time. I was able to control my computer with speech recognition software,
Dragon, and continued to stay connected through the Internet. I spent four or
five hours each day surfing cyberspace, listening to music, and writing. The
words, phrases, sentences, paragraphs, pages, chapters, and stories appeared on
the blank screen with ease. Unfortunately, that ability has started to fade.
These day
s, I struggle to get even the simplest
phrase on to the page. Short blog posts like this take several days to compose.
Speaking on the Telephone is impossible. Face to face conversation is difficult—I can just manage short phrase answers or
responses. I have had to request the people that are closest to me to refrain
from using multiple-choice or open-ended questions. To be patient with my slow,
soft responses. I am still here with
you. I am interested, and I still
want to communicate, to converse... The loss of my ability to have free flow
speech is very difficult to accept, but even though it's against my nature, I am doing my best to live within this
"yes/no short answer world."