Today, a man responded to one of my blog posts saying that he had just received a diagnosis of ALS. He thanked me for the positive message that he found in my post. His sincere comments and the underlying fear I felt from his words brought me back to the day that I learned that I have ALS.
I responded to him personally; I wanted to help him. I wanted to send pages of advice on how to deal with the challenges that were coming his way, but I realize that each person's journey is unique and specifically their own. Advice, especially advice unsolicited, is usually, and rightly so, ignored. Instead, I wished him well, but I could not help but offer one seed of advice — take time now, while you still can, to do the things that you enjoy.
I regret that no one gave me this little bit of advice, or if they did, I regret that I did not listen. Instead of continuing to work, going to doctors, reaching for cures, or spending time trying to understand my disease, and instead of continuing with the mundane tasks presented by daily life, like washing dishes, doing laundry and paying bills, I wish I had dropped the comfortable routine and shaken things up. I wish I had taken that trip to Tuscany with my wife. I wish I had taken my son hiking on the Kalalau Trail in Kauai. I wish I had played more golf with my buddies, gone snorkeling on the North Shore, built a hundred-gallon saltwater aquarium, taken more photographs, gone to more concerts, read more books and ate more gourmet dinners. I wish I had spent more time in the garden and taken longer showers.
I don't like the term "Bucket List," it seems too cliché and simple. A list of things that I want to do before I die, seemed ridiculous to me at the time — defeatist, hopeless, selfish ... It was the last thing I wanted to consider after hearing my doctor say, "You have Lou Gehrig's disease, ALS," but now the idea is appealing.
I was alone in my hospital room, and she explained everything to me with compassion and empathy. She left me with an article to read and assurances that she and her team would do everything they could to help. She was great, but I heard the finality in her voice. I was to be discharged in the morning. I was numb and in shock, but I felt calm and at ease at the same time. I was in denial, but I did not know it. I thought I was just being brave. "At least I had a disease with a famous name attached to it," I thought.
I read the article. I didn't quite get it, the words on the page didn't seem real to me. Stupidly, I called my wife and told her my diagnosis, talking nonchalantly like I had the flu. She was at work. I should have left it alone and allowed her to finish her day. Her reaction was the first indication that things were serious and would never be the same. That was my first regret, I should've told her in person. The physical touch, the shared tears would have been better for both of us.
Over the next year, as my disease progression proceeded rapidly, other regrets began to reveal themselves. When I yelled at my son and used the "I'm dying" card, forcing him to go to a football game with me, I felt immediate sadness and repentance. I felt bad when I turned down an invitation to a friend's barbecue party, because I was "too tired," when in actuality I just didn't feel like socializing. After a visit to the doctor, when I fell up the stairs into the arms of my wife and son, I regretted the fact that we had not moved earlier. When my foot slipped off the brake and I slammed into a truck at a stop light, I felt weak and vulnerable. I should have given up driving sooner. I appreciated MDA helping me to buy a scooter when my legs could no longer carry me, but I felt wasteful and angry when three months later I could no longer balance on the small seat. I gave the scooter to a local man just diagnosed with ALS. When I got stuck on the toilet, and worked myself into a full-fledged panic attack, I lamented the fact that we had not yet hired a caregiver.
Over the last seven years, the mistakes and regrets have faded from my memory. I have forgiven myself for getting lost in the day-to-day act of living, the denial, the anger and selfishness. Now, my "Bucket List" is much shorter and more mundane. I no longer wish for the grand trips or gourmet dinners. I'd like to take a long hot bath. I want to watch the sunset over the ocean with my wife by my side. I want to go to a movie with some friends. I'd like to watch football on Sunday afternoon with my son. I'd like to take a ride to the North Shore or Pali Point. Eating and swallowing without fear of aspirating would be good — soup and a sandwich will be just fine. I'd like to live a few years longer. A chocolate shake would be nice, too.
My advice is still the same: "Take time now, while you still can, to do the things that you enjoy."
The blog originally was posted Sept. 12, 2013.
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.