A Special Kind Of Hero’s Fight
Wednesday - May 18, 2011
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Del.icio.usWe Americans have recently experienced an action movie come to life. In the annihilation of Osama bin Laden, World Enemy No. 1, real-life action heroes - U.S. Navy Seals - did stealth, skill, and danger much as Harrison Ford did Jack Ryan in a Tom Clancy plot.
But exchange the wide angle lens of the world stage and tele-photo into homes and hospital rooms, and you’ll discover thousands of unscripted plots in which acts of heroism abound as people, young and old, face a daunting enemy: debilitating disease. Only family and care-givers can bear witness to heroes who never make headlines and rarely rate high fives or football “spikes.”
One such hero is Mark Rylander, my cousin-in-law.
Mark’s always been a man who knows what he wants and how to get it. An athlete, sailing champ, computer whiz, artist, and man of many endeavors, he also relishes sharing his expertise. Carving out quality, instructive time for his two teenagers, Ford and Paige, and wife Carol (my first cousin), on ski slopes, bike trails and Hawaii’s surf, he has made expert athletes of them all. (He even tried to make cautious, half-scared me a better skier).
In the fall of 2008, Mark, 50, met his “Navy Seal” challenge. First came the job layoff from a computer company he helped start. Carol’s job disappeared a few months earlier.
The next week, the diagnosis. Weakness in his left arm had troubled him for months so he self-prescribed more strength training. I must not be working hard enough, he thought. Finally, after several tests came the unspeakable answer: ALS, Lou Gehrig’s disease. The doctor pulled no punches: You have two to five years. Get your affairs in order.
Amyotrophic lateral sclerosis is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Nerve cells (neurons) waste away or die, no longer sending messages to muscles, which leads to weakening, twitching, and an inability to move the arms, legs and body. When the muscles in the chest stop working, it becomes hard or impossible to breathe. Beloved Hawaii artist, Peggy Chun, had hereditary ALS. Mark’s is not genetic, its cause unknown.
With that kind of news comes shock, sadness, anger and eventually a decision: to fight. Hope and faith are the lifeblood of the human spirit. There are some ALS patients whose disease went dormant. Some live without complete debilitation. And there are promising clinical trials and homeopathic routes. As a family, Mark and Carol set a course of action: a healthy diet free of gluten, special supplements, yoga, removal of mold from their home, and prayer.
“I’m the healthiest guy you’ll ever meet who is dying,” Mark would joke in his typically ironic way. Always brutally honest about his situation, this athlete knew that with every painful spasm, a muscle was failing.
Despite valiant efforts, the disease progressed.
“Maybe I’ve been fighting the disease too hard and now I need to just work on living with it,” he told me at a one-on-one lunch at Lake Tahoe a year ago. He also shared the blessings from so much pain and loss: “I can’t believe how much love people have shown me. I never knew how many people cared. I don’t think I deserve it.”
Many friends, family, and even strangers have stepped up to help the family sort out financial and caregiving needs. His old company even hired Carol so the family would have health insurance and a steady paycheck.
His disease, though torturous and totally debilitating (almost every muscle useless except his eyes), hasn’t diminished his brilliant mind. Thanks to eye-recognition computing technology that allows him to communicate, he remains in charge of his life and domain. But, a “Type A” like Mark sees greater possibilities.
He wanted the computer system integrated with his cell phone, home phone and email so he could be more independent and do projects - always to help others! Understandably, company policy wouldn’t allow Mark to have the software, so one day a few months ago, Mark decided to experiment using their demo. After eight hours in his wheelchair, using only eye movement, he reconfigured (nice word for “hacked into”) and adapted it to his high expectations and own top-of-the-line computer. When Mark shared his “accomplishment” with the company heads, they generously agreed to install the complete software into his personal computer. Perhaps in the future, that software Mark “configured” may improve life for others with ALS.
At this writing, Mark is ready for his battle to end. He says the angels are calling. For Mark and many others with debilitating disease, and their loved ones, the term “hero” isn’t big enough and headlines are too small.
Post-script: Mark passed away last Thursday before we could get to see him. But my son Kyle was there and read this column to him and Carol just before he passed. A big thunderstorm was going on outside, but at the moment of death a ray of sunshine found him and bathed him in light, there in the room full of windows he had built for his last months.
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