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?"
"Would you like the window opened?"
"OK then, let's turn on the fan ... "
"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 days, 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."
The blog was posted originally on Nov. 1, 2014.
About the Author
My name is Richard K. Raker, and I am 54 years old. I have lived in Honolulu, Hawaii, with my wife and son for 26 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was totally bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of writing.
First, I struggled through a memoir about the first 25 years of my life, telling the story of the events leading up to my decision to move to Japan. It felt good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew I had. The memoir, A Remarkable Life, Lived by an Ordinary Person, has been self-published using Createspace.com and is available on Amazon.com. After that, I realized that I had a few more stories that I needed to write. I enjoy writing. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It is fun and gives me a much-needed purpose in life, but I do hope that you will enjoy reading what I have written. Thank you all for your love and support. Be sure to visit my blog called A View from Rick's Window, Web page, DVD reviews and Facebook page.