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.
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