ENDURING WITH LOVE

Taylor holds his beloved "Angel"




Taylor Martin is one of the most incredible young men.
Few have endured the day-to-day struggles of this beloved
young man. Taylor is my friend. His is a story of endurance
and a rare, gentle spirit.

Taylor was a big baby, over ten pounds. His mother Cyndi, said,
“Taylor never went through the terrible two’s. He never did
anything wrong.” Go back 13 years. Taylor was a typical kid.
At 5 years-old it came - the diagnosis - NF2, a rare genetic
disease which causes tumors throughout the central nervous
system. At 10 years-old, Taylor had his first brain surgery.

Cyndi had a video made for Taylor, it shows how poignantly his
life has changed. Taylor stands next to two football players,
friends since childhood. Everyone is beaming. They love Taylor.
They are tall and strong. Taylor is now under 80 pounds. The
song “Hero” played over photos of his first surgery. Taylor lay
recovering, clutching a baseball. In his indomitable style, the
next photo showed Taylor smiling, thumbs up. Taylor showed
me his scar from his surgery, “It looks like a hook.”


Taylor at 10 years after his first surgery

Taylor wears three plastic bracelets, a gift from his mother.
They say, “Pride, Unity, Thoughtfulness, Commitment, Live Strong,
and Solve the Puzzle (of NF2). Someone can do it. Somewhere
there’s a way. Polio was once incurable too.

I brought paper to the interview, not to write answers, but to
write questions. Taylor is deaf – one of the results of NF2.

The Day the World Went Silent

Two days after Halloween 2001, around 11:00AM, Taylor’s world
went silent. Taylor never heard a sound again. The school district
had never seen anyone go deaf so quickly. “Most deaf people are
born deaf,” Taylor said. “I went deaf in the middle of my life.”
He was 12 1/2. The family had to learn to another way to
communicate. “After dinner every night, we’d do 10 flash
cards and learn together.”

With his friends gone off to college, Taylor’s life is quieter. “My
energy and strength are really going down. It’s harder for me to
do activities, like sports.” Cyndi said, “Sometimes we’ll go to a movie.
We’re just sitting the whole time. He’s exhausted because of
reading and concentrating.”

Transitions are hard. Taylor’s had many. “The hardest thing to do
after I went deaf was communicating with my friends. I want to
be involved - just to have a life as a teenager.”
Taylor uses myspace to stay in touch with friends.

Taylor likes math, and Sudoku. He still does stats for basketball,
but this may be his last year. His friends on the team are now seniors. “
I missed last year because of my back surgery but I was at all the games,
cheering them on. Without me doing stats,” Taylor kids,
“it was their best year!”

In spite of 6 brain surgeries, 4 spine surgeries, and several stomach
surgeries. Taylor graduated on time - with honors. “Tay didn’t want
shortcuts or to be treated special,” said Cyndi. Taylor said, “A couple
of weeks before surgery I’m usually pretty cool because I just go
about my life,” said Taylor. “As it gets closer, I get a little nervous.
It’s gotten easier with experience. I have confidence in my doctors too.”

The Letter of Faith

Taylor’s heroes? “Jesus Christ. I really like Lance Armstrong
and my Papa. I loved him a lot. He’s in heaven now.”
Taylor’s grandfather had a brain tumor with similar
symptoms to Taylor. Taylor wrote his grandpa.” I told
him how he’d grown and become a better person. I was so
thankful he heard my letter right before he passed away.”

What is a normal day for Taylor?
He takes medication to help with his strength. “ My pills are
my food,” Taylor says. ‘I read the sport page every morning.
I love to watch a sports trivia show. Then I have lunch.
Sometimes I do stuff with my friends or mom. I started
a weightlifting class at Saddleback to help with my strength.
I like Saddleback. It makes me feel like I’m really going to college.”

I asked Taylor a few questions.

If you could change one thing what would it be?

“I’ve always thought that maybe my hearing would come back, but I
know it really won’t. But I’d like to have my hearing and go to college.
A brain tumor has been pushing on nerves that control my short-term
memory. It’s stressful how hard it’s become to retain information.
I had a memory test done with the school psychologist. She concluded
that I only have a 30-second retention. I’m constantly trying to replay
things back in my mind so I can try to remember them. I write notes to
myself. That is a strong reason why academics in college isn't really a
reality for me anymore.”

If you could change one thing in the world what would it be?

“All the violence. Sometimes I watch the news, it makes me really sad.
There’s all that tragic stuff happening around the world. Sometimes
how people treat each other too.”

Your favorite color?

“Black.” I never had anyone say black before and I asked him why.
Taylor said, “Because it’s a pure. color”

If you had a million dollars what would you do?

“I’d love to visit all my relatives across the country.” Taylor said he’d
love to play golf at Pebble Beach, his favorite course. In a beautiful
attempt to get Taylor that trip, friends rallied to make it a reality.
On April 4-8. Taylor got to go to Pebble Beach. “Sunday I got to
do something that was the best. It was saved for last. Hubert Allen,
General Manager of the Pro Shop, took us around the whole golf
course in a cart..”

When they got to the 7th tee, Taylor favorite on the course, one of
the guys was a lefty like Taylor, let him hit one shot. “It was a good
shot too, but it obviously came up short. With my balance I couldn’t
follow through very well. I might have fallen over if I tried harder. It
was awesome though.” Taylor told his parents that the trip was “the
dream of a lifetime. It was hard on my body physically but worth every
second.” He’s always loved sports, especially golf. Taylor was named
2006 “Sportsman of the Year” in the Sun Post.

“My mom and I have talked about life. I know the future. It’ll probably
get harder. I try to go just one day at a time.” Taylor told Cyndi,
“Sometimes I feel like I’m 90 years old.” When I wrote to Taylor
“You are amazing!” he gently patted my hand and signed, “Thank you.”
Part of the word gentleman is gentle. That is Taylor. When I left, Taylor
didn’t just give me one hug but pulled me back for a second one.
He gets it - the incredible and precious value of life.

Taylor would like a speaking career. “I really like public speaking .
I like to make them smile. I tell my story to inspire people to not give
up having hope in their lives.”

Living his story, Taylor is more of a hero than ever. In spite of his
difficulties, Taylor finds joy, love and humor in life. Being around
Taylor is a gift. Taylor is majoring in one of the hardest classes in
the University called “Life” and doing it brilliantly. Taylor chose
post-graduate work in “Life” since he was 5. No one could have
done the job he’s being asked to do better than Taylor. The two
last words on Taylor’s video are “Well Done.”

Taylor will be going into CHOC hospital on April 18th. to look at
options to help him gain back some weight.
Let us keep him always in our prayers.

Live like a hero!

Terri Marie
Award-winning author of Be the Hero of Your Own Game.

Taylor’s Life Lessons

• Humor Gets You Through
“I have a good sense of humor. I love to have fun and laugh
and make people laugh.”

• Focus on What You Have
“Right now I feel good and strong in my body. I have to take
advantage of days like this. The way I look doesn’t matter.
It’s how I feel. That’s much more important.”

• Put Your Passions Into Your Life
One entire wall in Taylor’s room is full of golf balls, some
from Scotland, where the sport was thought to originate.
The other wall is a big mural of his beloved Pebble Beach.

• Develop An Inner Sense of Right and Wrong
Everybody who knows Taylor says he has a really good heart.
They like how he thinks and how he treats people; “I have a
conscience in my head that is like God telling me to be a good
person. I want to be caring. I don’t really understand the bad about people.”

• Put Joy In
Taylor loves playing with Angel his dog. “Several years ago when
I was down about my hard life, we talked about getting a dog.
Whenever things are difficult, Angel brings joy to our lives.”

• Age Doesn’t Matter, Heartyears Do.
Taylor’s favorite quote is: “Don’t let anyone look down on your youth
but set an example for the dreamer in speech, in life, in love,
in faith and in purity.”
1 Timothy 4.12

• What Would It Take to Be a Friend of Taylor’s?
“I like a caring person and a good person with a good sense of humor,
like me I guess. Strong beliefs, outgoing.”

• Look Up to Heroes – Be Inspiring
“I'm really inspired by a guy named Kyle Maynard. He wrote a book called,
No Excuses. Kyle was born with no legs or arms. He became a champion in
wrestling. I look up to Jesus. It took a lot of courage the way he died for us.”

• What Would He Tell Anyone Going Through Tough Times?
“I like what I told my Papa. ‘Just be tough and fight,’ I always talk
about a positive attitude. Try to do whatever you can to feel better.
Be strong and fight through it.”

• Find Ways to Communicate
Taylor uses myspace to communicate with his friends in college.
“It’s a better way to communicate with friends. Ever since I’ve
graduated, we’ve been trying to find ways to keep me involved.”