The first two years after being diagnosed with ALS, or Lou Gehrig’s disease, in 2006, Rick Raker was determined to continue his work as an electronic medical record trainer and programmer with Kaiser Permanente.
"My supervisors and managers were supportive. I was allowed to work from home," he said. He also worked as an educator teaching English as a second language. But ALS is a condition that affects nerve cells in the brain and spinal cord that control voluntary muscle movement, and willpower could not stop the physical onslaught. "I continued to drive as much as possible, but within a year I could no longer stand or walk without assistance," he said.
Although his activities have been limited, he’s determined to stay positive, maintain normalcy in his life and continue to do things he enjoys for as long as he can. Those things include the simplicity of watching nature and science documentaries and sports on television, surfing the Internet, reading and keeping up with friends on Facebook.
"I enjoy going out in my wheelchair every Wednesday afternoon. I try to use the Handi-Van at least once every few months to go to the beach, park, Aloha Tower or someplace like that. I have a nice garden and lots of orchids growing on my porch."
During the first two years after his diagnosis, Raker, a 54-year-old Honolulu resident, says, his disease progressed rapidly. "Being diagnosed with a terminal illness with no cure and no treatment was devastating. I lost functionality quickly," he said.
During the third year he hit a plateau, and even though he lost many physical capabilities, he was grateful for the respite.
To pass the time at home, Raker began writing on a regular basis. That exercise turned into a memoir of the first 25 years of his life for his wife and son, his primary caregivers.
"I found that when I was writing, time passed quickly because I was so focused on the words and ideas appearing on my screen. It’s a peaceful and comfortable place where ALS doesn’t exist," he explained.
Raker begins his tale, "Dolphin’s Dance," witha Honolulu man who has lived with ALS for 12 years and decides to leave this world, his spirit reborn as a bottlenose dolphin. "It was fun because it was fictional and allowed me to pretend I was a dolphin."
He’s currently working on another book, "Sealand 1001," a more complex science-fiction semisequel.
"Writing is a therapeutic endeavor for me. It gives me something to work on every day … a project to think about, to look forward to. Writing a story and seeing it through to the final publishing stage has been very exciting and satisfying for me," he said.
Raker spends about three or four hours on his writing projects daily. Dictation software on his computer speeds up the task. "If I don’t write I get grumpy," he said.
Along with writing, Raker is thankful to be surrounded by family, friends and volunteers who help him. "They keep me alive with their love, encouragement and care. They never treat me like I’m dying. It’s like our friendship has remained the same," he said. "I find that if I am positive, the people around me are positive. The most important thing I have done to stay normal is to try to stay positive and grateful for everything I can do."
Raker stays in contact with friends and sees visitors a couple of times each week. He’s learned that in order to live with ALS, he needed to give up the idea of privacy. "I had always been a very private person and very independent. With this disease, I’ve had to accept visitors, nurses, doctors, volunteers, friends entering my life on a daily basis. I have had to accept that I am totally dependent on others," Raker said. "This has been difficult, but with that difficulty has also come the realization that there are so many wonderful people in the world. I’m grateful to all of them. When things change drastically, we have to adjust and adapt. … Looking at the change in a positive way has allowed me to reinvent myself. Thus, my new identity as an author."
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“Be Well” features inspiring stories of people dealing with health challenges. Reach Nancy Arcayna at narcayna@staradvertiser.com or call 529-4808.
