Lately, some of my friends have been asking me why I don't write more about my experiences and journey with ALS.
"It's inspirational to read about your struggles and the courage and lessons you have learned," they say. "It helps us to appreciate our lives and all that we have."
Well, I'm glad to hear such lovely encouraging words, and it makes my heart sing to know that I have so many friends who care about me and my daily fight.
First, let me say that I don't feel courageous at all — I'm afraid, sad and anxious the majority of the time. I struggle to stay positive but often lose the battle, and yet, I have hope of winning the war. I vow not to succumb to depression. I don't think this is courage; it's a necessary reaction to keep myself sane and alive.
Then, I also will admit that I have learned some lessons — some from what I have experienced over the last seven years, and other lessons by the fact that I now have time to engage in hindsight and view the successes and mistakes I've made throughout my lifetime. There is a lot we can learn if we can set aside our busy daily lives and reflect on what we already have experienced. I have that luxury. I have plenty of idle time for reflection.
So, what about writing more about these lessons and struggles?
Simply put, I think it's avoidance. I don't want to write about the reality of my life; it's too scary and too ugly to think about. The thought of putting into words how I feel when my wife has to help me on the toilet, or when my son holds my head when I aspirate and spit phlegm and pieces of food into a bucket is terrifying. I don't want to face the reality anymore than I have to.
I'm not sure I fully understand how I feel when I wake my wife up in the middle of the night so she can change my body position — I know I feel helpless and sad. I feel enormously frustrated that I cannot move my own leg, and terribly sad that I have to wake her up from precious moments of sleep that she badly needs. I don't know how I would put those feelings into meaningful words. I don't want to dwell on the sadness and helplessness, at least not now, so I avoid writing about it.
I'm afraid of so many things and cannot face them on a page. I'm not ready to write about my fears about going bankrupt, my 401(k) slowly melting away, and missing my son's wedding or the birth of a grandchild. I don't want to write about my fear of suffocating, or of the power going out and not being able to breathe. I can't write about my fear of being alone or the panic attacks I get when my caregiver does not come immediately after I call. All of these things, I leave for reflection for some other day.
I can understand why some of the best memoirs are written near the end of life, after a change of career or drastic new direction. I think then the person is ready to face those experiences, good and bad, once again. That's why it was easy to write about the first 25 years of my life in A Remarkable Life, Lived by an Ordinary Person. That was a time when I made a drastic change in my life's direction. It was easy to write about those first 25 years — I was young and healthy then.
So, now I only write stories about animals, nature, magic, reincarnation, history, love and drama. These stories allow me to travel to exotic places and meet unique characters. When I write, I become totally absorbed, as if I'm in some kind of Zen-like trance. I get lost in the words, reality fades away, and whatever world I happen to be creating with my story occupies my thoughts and time. When my stories are finished as best as I can get them without professional editing, I publish them using Amazon's self-publishing tools. I put my stories out there, humbly and with vulnerability. Creating the covers with a friend of mine, and then formatting the text and following all of the instructions and clicks are a great challenge for me, but it brings the writing process to a completeness that is very satisfying. I can order the book and look at it, the white pages and and words printed in black. I'm thrilled when friends and family, and even some strangers, tell me that they have read one of my stories and enjoyed it. The process helps me stay productive. I feel like I'm doing something of value.
I use the voice-recognition software, [Dragon] NaturallySpeaking by Nuance, when I write or use my computer. It works quite well, but it takes patience and time to train the software. Sometimes, I will say a phrase or word and it will write something totally different. I'm lying in my hospital bed, at this moment, with my headset on, talking to my computer, watching the words appear on the page. I'm so very lucky to still have a strong voice, after seven years of living with this disease. Someday, I will have to use eyegaze technology to communicate, but I hope by then it will be easier to use and more robust. For now, I feel blessed to be able to do what I can do with just my voice.
Honestly though, I have written some pages about my current ALS journey and life thus far. This little tidbit is one such endeavor, just for those friends who ask for more. You can find other writings, website and blog — they're just not very well-organized or well-written as I tend to jump from topic to topic. Also, I have to admit that there's a little bit of my life and journey in each one of the books and short stories that I have written thus far.
I will write that ALS journey memoir one of these days; in the meantime, however, I do put a little bit of myself and my lessons learned in each of my stories — you just have to look for them.
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, Web page, DVD reviews and Facebook page.