Now the man in this story has a physical difference because unfortunately he acquired it--he suffered a horrible injury. But he is different, as are we, and we can learn from him. As he put it--what happened to him doesn't define him. See what he means:
"It's something most of us take for granted, but for him, it's a big deal.
"Three years ago, I could
only stand 20 minutes at a time," said Clark, 34, who injured his spine
10 years ago. "Now it's an hour and a half every day."
In 2002, Clark was 24 and
had landed a dream job at a major magazine when he took a trip to a
summer house just outside New York.
It was a perfect summer evening, and the pool was dimly lit.
Clark recalls the moment: It was as if the pool was begging him to dive in. Without hesitation, he listened.
His chin hit the floor of the pool.
"How can you describe
knowing what (being) paralyzed feels like?" he said. "I lay underwater
completely awake and completely conscious."
"The first thing I thought was, 'You're an idiot!'"
Approximately 1.3
million people in the United States are living with a spinal cord injury
(SCI), according to the Christopher and Dana Reeve Foundation. Most of
these injuries affect people between the ages of 15 and 35, the majority
of them men.
Clark describes spending
three years after his injury wallowing in guilt and self-pity. His
desire to become who he used to be, he says, helped him find the will to
not only move again -- but to move on.
Clark's recovery is documented in his book "Walking Papers."
In the intensive care
unit, his prognosis was hopeless. Doctors told his parents that their
son would live the rest of his life on a ventilator and never speak.
There was no chance of him ever moving anything below his neck.
"The man next door to me
was screaming for morphine because he was in the final stages of
cancer," says Clark. "The thing that really scared me was that when I
got in my room, he had a higher chance of living. It really made me
fight."
He attributes this perseverance to his family and their unconditional support.
Clark's sister,
Charlotte, had just graduated from college when he was paralyzed. She
and the rest of his family have helped Clark battle his injury from the
start.
"We've come to
appreciate early on the small improvements that he makes because they
become actually quite big," said Charlotte Clark.
"He'll be walking, I know he will be. When it's time, I know his body is going to be ready."
In the months after the
accident, Clark pushed his health insurance provider to double his
physical therapy sessions and cover more of his therapy equipment.
When doctors urged him
to just accept that he would never move again, Clark defied the
prognosis. Less than a year after his injury, he could feel his
shoulders.
"I never wanted to
believe that there would never be a cure for SCI. I was showing people
how I already defied what my diagnosis meant. So why couldn't I push for
more?"
Clark completes five
hours of physical therapy a week. While standing, he does cardio for an
hour and a half. He lifts weights in his garage.
He practices kicking his
legs while playing a dance game with his niece. He undergoes electrical
stimulation on his hands, legs and abs. On the weekends, he practices
lifting his body off his bed. He describes his therapy like training for
the Olympics.
He was tenacious,
pursuing conventional therapies alongside less-proven ones. From stem
cell surgery in Beijing to different clinical trials, Clark was fiercely
determined to move again.
Dr. Manuel Avedissian, a research fellow involved with one of these clinical trials, refers to Clark as his "star pupil."
"If there's a door shut
for him, he'll check elsewhere," said Avedissian. "He's constantly
looking for other things. He wants to make more of a difference than
anyone I know."
Clark attributes his progress to intense physical therapy and clinical studies, as well as to the stem cell therapy.
He describes his motor
movement as more fluid and refined; he can now move his toes, stretch
his calves and feel hot and cold on his legs.
Clark also lost the
ability to sweat, which led to flaky skin and chronic acne. So he
started experimenting with botanical extracts in his kitchen and
developed the Clark's Botanicals skin-care line.
"The power of something
as seemingly innocuous as beauty -- the power it has to make you feel
strong and empowered -- there's something to be said about that,"
explains Clark.
He recalls being afraid of asking what he could do to walk, worrying that people would laugh at him.
"Now I'm not afraid of
that, and it's evolving, because I'm feeling more and doing more," he
says. "The people who I thought would laugh at me now look at me and
say, 'Oh, my gosh, this recovery is incredible.'"
Clark hopes to empower other patients to take control of their recovery.
"Your injury doesn't
define you. You will get better," he says when asked what he would say
to those newly diagnosed with paralysis. "... You should want more and
you should ask the questions that you really want to ask and then find
the answers, and don't take anybody's word as truth. Use your curiosity
and imagination to benefit your recovery."
Clark is seeking more
cutting-edge SCI studies and continues to spread the word as a national
ambassador for the Christopher and Dana Reeve Foundation.
He believes he is
"definitely going to be walking" in the next five years and hopes to
finally take a vacation. Most recently, he says, his feet began
sweating, another sign of success.
But after his near-death experience, his priority is to just be happy.
Hearing that something
is impossible "doesn't make sense to me anymore," he says. "I was three
breaths away from dying ... It's about prioritizing what's important to
you. My priority is being happy and feeling fulfilled. It's more about
giving back to a bigger community with the experience that I have."
For
what it’s worth: it’s never too late or, in my case, too early to be
whoever you want to be. There’s no time limit, stop whenever you want.
You can change or stay the same, there are no rules to this thing. We
can make the best or the worst of it. I hope you make the best of it.
And I hope you see things that startle you. I hope you feel things you
never felt before. I hope you meet people with a different point of
view. I hope you live a life you’re proud of. If you find that you’re
not, I hope you have the courage to start all over again.”
F. Scott Fitzgerald (1896-1940)
Kevin, great story! When we were living in Oregon I would visit the VA hospital in downtown Portland on a scheduled weekend each month. One of my re-occuring calls was a young man who had got sprayed with jet fuel and burned during the Vietnam War - he was undergoing a series of skin grafts and plastic surgury. To my discredit, I don't remember his name any more, although I often think of him. His face was one large scar and had lots of other burn remnants as well. We had long talks about not being defined by his burns and my Moebius afflictions. He always told me he would consider himself a failure if people knew him more because of his war injuries than they did because of his successes in life. He was in constant pain, but had managed to get his BS in Mathmatics and Microbiology, and was in the process of a MS/PhD at the time we visited. Often think about the lesson there for all of us who have handicaps of one form or another.
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