Imagine – my ALS story

Imagine

 

I sat comfortably in my wheelchair looking out my favorite window towards the Koolau Mountains. I marveled at the Technicolor rainbows created by the natural synergy between the mountains, Tradewinds, clouds and setting sun. I followed the shadows of clouds and condominiums as they drew complex puzzle pieces across the face of the Nuuanu Hills. I watched flocks of iridescent green wild parrots leave the valley and make for their nighttime roosts in the forest. I imagined myself flying with them. I was suddenly free to explore the natural wonders of this beautiful island. I was the reincarnation of Namaka, the legendary Birdman of Nuuanu Valley.

The story came to me at that moment. I smiled and laughed through the silicon mask covering most of my face. I breathed deeply, thankful that I was securely attached to my Trilogy portable ventilator.

"This is a great seventh anniversary present," I said to no one in particular.

I had found another therapeutic inspiration, another story to write. I was anxious to get back to my hospital bed and workstation so that I could begin the process that would keep me busy for weeks during the long and often boring hours of the day.

"How can you say such a thing?" you may ask.

"Each day is a blessing and our lives are usually so full of activity. You live in paradise!"

Let me explain...

Yes, I live in paradise! I have had a long and busy life. I have lived here in Honolulu, Hawaii with my wife and son for twenty-seven years. I grew up on Guam, Okinawa and in South Carolina. I worked in Japan for several years before moving here. All of the places I have lived left permanent imprints on my character and soul, but I love island life. The sea breezes, clear blue ocean waters, fascinating marine life, mountains and lush tropical forests have a way of sustaining me. The inspiration gained from just looking out my window, affirm that undeniable bond.

I was diagnosed with ALS, Lou Gehrig's disease, in 2006. Prior to that, I did have busy and fulfilling days supporting a family and working as an English as a Second Language teacher and then later as a computer trainer for a major healthcare organization. However, very soon after my diagnosis and a quick disease progression, I found myself paralyzed and bedridden, relying on a ventilator to breathe. I could no longer work. From my hospital bed, it was difficult to participate in family activities and the busy lives of my wife and son. I spent most of my time reading, napping, and watching TV and movies.

Sadly, this terrible disease prevented me from enjoying my beautiful surroundings as often and as fully as I would have liked. I got bored quickly and depression started to rear its ugly head, but I struggled to remain positive. I still felt lucky to be living in Hawaii and even more grateful to be alive and still spending my final days with loving family, friends and caregivers.

Days passed slowly. I became weaker. My breathing became more labored and difficult. Nothing moved anymore except for the faculties from my neck up. I fully expected to the one of the 80% of ALS victims that died within three to five years after diagnosis. I was resigned to my death. I was already planning a final goodbye party. I had decided that I would not pursue any further invasive surgery or treatment for my disease. My wife and son knew that I loved them more than anything in the world. My mother and father knew how grateful I was for the support and unconditional love they had given me throughout my life. My friends and caregivers understood that I appreciated their constant generosity and encouragement. I had life insurance and my house was in order. Dying would be more difficult for the people that I would leave behind, than it would be for me. I fully expected to just one day switch off my ventilator and fall asleep, and never wake up.

However, four years into my journey, something changed. I realized that my eyes, ears, mouth, voice and brain remained strong. I was maintaining, physically and emotionally. Death seemed far away and not as appealing as it had been at the beginning of my physical decline, but I still needed something. That's when I discovered the joy of storytelling.

First, I struggled through a memoir about the first twenty-five years of my life, outlining the events leading up to my decision to move from South Carolina to Japan. I wanted to leave a portion of my life story behind for my son, family and friends. It felt good to write—to tell stories. It helped pass the time. After a while, I realized that I had found a new creative outlet that I believe I would have never discovered without the experience of ALS.

I had never dreamed of writing a memoir, novel or short story. In fact, I remember distinctly my college professor telling me in no uncertain terms that my writing was awful and unintelligible. However, I found that what I wrote was decent, and a few of my friends and family who read my chapters encouraged me to continue.

Somehow, somewhere in my brain, the grammar, punctuation and natural flow of the language had surfaced. I had found a new talent, a new joyful pursuit. It reminded me of the tragic and inspiring stories I had heard of others who had suffered life-altering injuries. The examples are numerous: some lost their eyes, but gained an acute sense of hearing or musicality. Others lost their legs, but remained living with complete dignity and a renewed compassion for others. The deaf became wonderful artists. I wondered if that give-and-take, that loss and renewal, had happened to me. Was I blessed after all?

After finishing the memoir, I realized that I had a few more stories that I needed to tell. In fact, I found that I needed to write every day—putting words on to the page somehow helps me define my place in the universe. And now, on the verge of my seventh anniversary since my diagnosis of ALS, I realize that I love writing. It has in some way saved me from myself, depression, and the horrible reality of my disease.

I write using my laptop computer and voice recognition software. I'm blessed to still have a strong voice during most of the day. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It gives me a much-needed purpose in life. While I engage in the act of writing, I forget that I am confined to a hospital bed and a breathing machine. Through the stories I tell, I'm able to travel through time and space. I'm able to visit exotic places and share adventures with wonderful friends and characters. Writing has taught me that while my physical world may be restricted, my imagination is limitless.

My story is not action-packed or deeply moving, at least I don't think it is. My progression from a depressed terminally ill patient, to a hopeful author looking forward to his next story has been natural and unremarkable. It is however, a story about the resilience of human nature and the complexity of the human body. Mine is not a unique tale, but it is, I believe, worth being told again and again in a variety of versions. It's the story of one door closing and another unexpected door opening. It is about our ability to make lemonade from lemons—to turn tragedy into joy, to overcome obstacles and reach equilibrium with our physical limitations while accepting the unlimited paths before us. My story is about the power of imagination.

 

RK Raker, May 2013

The youngest visitor

An 11 month-old baby visited the today, bringing joy and happiness into my apartment. It was so much fun to see my wife play with the little baby. He sat on my bed and laughed at my face mask and the noise from my ventilator. I wanted to grab him and hug him, tickle him and smother him with blow kisses. It was so wonderful to see such innocence, wonder, and blossoming intelligence. Thank you my friend for bringing your precious child to visit.

Hard at work!

This is what it looks like when I am hard at work writing. Not a very impressive site. . Nothing moves except for my mouth and my eyes as they scan the computer screen .. I use voice recognition software , , Dragon NaturallySpeaking by Nuance 11.5 .. Usually works quite well, except as you can see here sometimes the software doesn't want to cooperate with the webpage or other tools that I might be using – then I end up with sp spelling errors, punctuation problems . I have an excellent  headset and microphone that uses Bluetooth , no wires. I easily spend for five hours a day, in this position, telling my stories and urging my imagination to create words on the page .. Technically what I'm doing is probably not really writing, . There's no pen to paper or fingers to keyboard , but perhaps it's just a way of storytelling . . I'm grateful that I have this outlet , this therapeutic endeavor

that gives me a chance to do something productive every day . ..

Excerpt from "Not too late for Paradise." – I apologize for the poor formatting.

"I know much, about many things, Richard. Whether I will share my knowing is another question altogether," he said. "Sit down. Enjoy the freshness of the air after last night's heavy rain."
That sounded like an invitation and a challenge. Being the know-it-all adolescent that I was, I gladly accepted both.
The first thing that I noticed about the old man, besides his very dark skin, was his frizzy black hair. It stood up and out around his head, springing uncontrolled in all directions. It reminded me of a black man's Afro, but supercharged with electricity as if he had stuck his finger in an electrical socket. I doubted if a hair on his head had ever seen a razor or scissor. "You know my name, what's yours?"
"Ri'iki."
"Are you a relative of Mariko or her husband?"
"Yes." I was expecting a little more detail, especially after he had gone on and on about fruit. My eyes adjusted to the darkness, and I saw that he really was quite old. At least the wrinkles on his face, arms and torso, told the tale of many years of tropical sunshine and island toil. He wore several necklaces made of Cowrie shells, shark's teeth, and other bones I could not identify. A longer, looser, leather necklace with a small brown banana leaf pouch at the end, hung below his belly. His teeth were black, and I could see that he was chewing a Betel leaf concoction—popular in the islands. Red juice dripped from the sides of his mouth. His eyes were darker than his skin, but piercing and alive. On the table next to him were a couple of animal skulls, and a beautiful conch trumpet shell. I decided I needed to ask a more open-ended question in order to get more of a response. "Can you tell me anything about the storyboard in the boys' room? I thought it was quite well crafted and would like to know more about the story."
"I see you have some intelligence and taste," he said, looking me over. "That is a fine storyboard. It is carved mahogany brought to the island of Kosrae from New Zealand nearly six hundred years ago. A master carver and storyteller made it for me in payment for a wild boar and enough Yellowfin tuna to feed his family for a month.
A good trade, I thought." "Yes," I quickly agreed. "Did you say six hundred years ago?"
"Do you want to know what happened?"
"Yes, please," I said, he had my attention.
"Okay then, listen." He shifted in the wicker chair. The aged bamboo adjusted to his weight without making a sound. "The huge mahogany log traveled over three thousand miles on a canoe a lot like the one hanging over there." He pointed a gnarled finger at a beautifully made wooden canoe near the front entrance of the porch. I had a similar one at home that had been given to me on my seventh birthday. Mine was much smaller. It didn't have a variety of fruit—fresh and rotten—arranged along the hull, rigging and sails. This one also had a variety of colorful silk ribbons tied to it in strategic places.
"Bigger and more seaworthy, I imagine," I said with confidence.
"Bananas, bananas, bananas," he said, his eyes looking straight through me. "I don't talk that often, no need too. Interruptions irritate me. Listen quietly, or I'll lose my patience and be gone."
I wanted to laugh, but I didn't. Who was this cranky old man? I decided my best plan of action was to refrain from asking too many questions and let the old fellow tell his story. He seemed to want to talk. I imagined that he was probably left alone most of the day—he was undoubtedly lonely. I nodded for him to continue.
"When the mahogany log reached Kosrae, it was blessed by the King's highest priest and then turned over to the master carver. The log was straight, fat, and round. About half as tall as a mature coconut tree. The King took most of the mahogany and had it carved and fashioned into a center beam for his favorite meetinghouse. The rest he gave to the master carver in payment for his labors. That's how I was able to obtain such a fine piece of work."
A million questions flashed through my brain, but I stayed silent.
"The Saudeleur King of Pohnpei, Saudemwohl he was named, had been treating his people cruelly for many years. They were sad, hungry and tired of his tyranny. Saudemwohl's administrators taxed the people relentlessly, and beat them severely when they could not pay. Firstborn sons were sacrificed to the gods, and Saudemwohl routinely had the most beautiful women kidnapped and turned into sex slaves for himself and his priests."
He continued as if he had told the story many times before. "The King's wife was fat and ugly, and required human livers for dinner most nights. Over time, the King demanded more and more from the people of the Pohnpei. They were desperate to be free of their horrible ruler. Finally, they sent word to the King of Kosrae, Isokelekel, and asked him to lead the battle to save Pohnpei from the Saudeleur dynasty."
The old man looked me straight in the eyes, as if trying to impress upon me the horror in which the Pohnpei people had lived. His fermented breath, smelling of tobacco and lime, pushed me back in my chair. I took his stare with all the gumption I could muster. This was my kind of story—warriors, battles, evil kings and queens, sex, slaves and sacrifice. Go on, I nodded.
"The Kosraean King was a good man and preferred peace over war, so he sent a delegation to Saudemwohl to see if he could reason with the King and get him to care for his people with more compassion and humanity. Saudemwohl welcomed the delegation and gladly accepted their treasures and tributes. Secretly, however, Saudemwohl was enraged that the King of the smaller island would dare to tell him how to rule his people. After three days of festivities, the King had the members of the delegation beheaded and their livers cooked for his hungry wife. Only one warrior was spared, he was sent home on a dilapidated raft with a message for King Isokelekel."
He glanced at me to make sure I was listening. I was. "Do you want to know what the message was?" "Yes," I nodded. "Mind your own business!" The old man laughed loud and boisterously. His black teeth flashed in the dim light of the shaded porch. I thought I saw blue shards of electricity running through his frizzy hair. His eyes, once jet-black, seemed to glow a slight shade of red. His laugh was infectious, and soon I was laughing so hard that my belly ached and tears begin to roll down my eyes. "You really had me going," I said, still laughing.
"What do you mean?" "I mean, that's really a great story, and I love the punchline." "Punchline? Story?" He said with a hint of anger. "What I tell you is true. I may be ancient and forgetful. And, some call me cantankerous and grouchy, but there's one thing I can tell you for sure, and that is... I always tell the truth."
"I'm sorry, please forgive me," I said with all honesty. "Tell me more." "What's my name?" My mind went blank. He had just told me, but it was nowhere near my tongue. "Speak my name, and I will tell you more," he said.
Just then, Tolenna called from inside the house. "Richard, it's time to go!" I turned towards the inner part of the house and hollered through the thin walls. "Okay, I'll be there in a minute!"
When I turned back to face the old man, he was gone. A chill flashed down my spine. The hair on the back of my neck tried to make a run for it. Goosebumps, the size of mosquito bites, rose all up and down my arms and thighs. I felt the blood rush from my confused brain and my cheeks go white. Where did he go? He was sitting just three feet away from me a few seconds ago. I touched the cushion on the wicker chair. It was cold. The animal skulls on the table next to the chair looked at me accusingly.

Newest novel, now available!

"Not too late for Paradise" is now available on Amazon.com in paperback and Kindle versions. It's my longest novel to date, 300+ pages! Please check it out. I think you will enjoy it.

Not too late for Paradise available on Amazon

It is loosely based on my travels through Micronesia in the 1960s and 70s. It is a coming of age story, which centers around Richard, yep me, and Daniel a cabin boy to the notorious Captain Henry "Bully" Hayes that roamed the Pacific in the mid-1800s. The adventure includes Pirates, buried treasure, Blackbirding, ghosts, a magic diary and beautiful Polynesian girls.

Please help me spread the word, your support and encouragement are always appreciated.

Rick

Trying my hand at a crime novel

With "Not Too Late for Paradise"completed and available on Amazon by the end of this week, and "Narragansett" bogged down in final edits and changes, I decided to start my first effort at a crime saga. I got a couple of great characters, of course, one is based on me – a bedridden victim of ALS who is able to control his world with advanced technology. Kind of like Denzel Washington in "The Bone Collector" and his partner is similar to Angelina Jolie. They solve crimes out of a sense of justice and altruism. I've written the first five chapters – the characters are good and the technology is fun. But now I'm struggling with the back story and the main plot. I want the plot and story and characters to be engaging, but I also don't want the story to be too dark. I'm thinking the main bad guys might be a very successful thief – perhaps even a woman. Crime novels are much more difficult to write than I thought! Brings out great respect for other terrific crime and suspense writers that I have read.