One step at a time

Young Chang

If it weren’t for the limp that follows Evan Hirsch wherever he goes,

if you were sitting and he was sitting and you swapped words about how

grand life is, you would never know that 16-year-old Evan almost didn’t

have it this good.

He might have fooled you onstage with his lecherous villain laugh for

South Coast Repertory’s production of “Melodrama Madness” last fall.

You might have wondered whether the limp was intentional in Evan’s

portrayal of the Dickensian turkey boy in SCR’s annual production of “A

Christmas Carol” last winter.

And when you watch him onstage next weekend during the company’s run

of “The People vs. B.B. Wolfe,” you’ll notice his long black gown and

“pizza box” head wear and you might -- only might -- notice the limp.

His spirit is what’s distracting.

“He was just so determined just to do it,” said John-David Keller,

director of “Carol.” “And in the course of ‘A Christmas Carol,’ the kids

have to dance and they have to spend a lot of time on the ground and

getting up from the ground, and it never occurred to me that Evan had a

disability.”

The director remembers this from two years ago, when Evan had just

been discharged from three months at St. Jude Medical Center in Fullerton

and could only walk with a walker.

Today he is partially paralyzed on his right side and walks on his

own, but with a pronounced limp.

On a Sunday morning almost three years ago, a rare reaction to a flu

virus caused an inflammation of Evan’s spinal chord and paralyzed him

completely. He remembers getting up from bed and then falling to the

ground. He couldn’t cut his waffles. The paralysis began on his right

side and then spread to his left.

“I guess I was in denial that anything serious was happening,” the

Corona del Mar High School student said. “But I don’t remember being

scared. I was actually really confused.”

He lived on a ventilator at Children’s Hospital of Orange County’s

intensive care unit for three weeks before being moved to St. Jude. The

family learned it was a condition called transverse myelitis.

He was able to throw out his left arm and move one finger. He had a

respirator in his mouth at all times.

The family’s main concern then was whether Evan would even live.

“But Evan was very calm and he kept his sense of humor throughout the

whole process,” said his father, Phil Hirsch.

After about seven weeks at St. Jude, he began to regain mobility.

Another finger, a hand, a leg, and then he walked. He cried as he took

those first steps -- mother Gail Hirsch did too and so did the hospital

staff.

“Every day we just believed he would keep improving,” said Gail

Hirsch, a teacher at Ensign Intermediate School. “Even when he lived in a

wheelchair, we believed in our hearts that he was going to walk again. We

just didn’t think about it any other way.”

Their determination bordered on denial. Doctors told them so, said

they needed to face facts and the very real possibility that Evan would

never walk again. Hirsch remembers agreeing she was in denial and that

was where she planned to stay.

Family members refused to have their house reconstructed to be

wheelchair accessible, refused to even wonder if Evan would eventually

walk.

“Much later, as we became aware of what transverse myelitis is, it

really struck me how incredibly lucky we were,” Gail Hirsch said. “We

didn’t know how poor his chances were. We were just blindly ignorant, and

that turns out to be a good thing.”

But there were ugly days. Days when the blue-eyed teen would notice

that people pretended not to see him because he got around sitting.

“People just treat you different when you’re in a wheelchair,” Evan

remembers. “Maybe they don’t want the person in the wheelchair feeling

like they’re being watched.”

While recovering, he also lost touch with his two former closest

friends. For some reason, they never called to see how he was doing. Evan

never called either. Once Evan returned to school, they passed each other

in the hallway without saying hello. Just last month, they looked

different ways when a random coincidence brought them all to Big Edwards

Newport on the same night.

Then there were good days. Evan remembers when his peers from Corona

del Mar High sold enough blue ribbons to rake in $300 and gave him the

whole chunk.

He bought a television and donated it to St. Jude. The movie buff had

found it frustrating to wait his turn at the hospital’s two screens per

floor. He made good use of it, and then he left it.

Today, Evan proudly says he doesn’t use a single thing that St. Jude

staffers taught him about surviving in a wheelchair.

“They were preparing me to live my life at the level I was living,” he

said. “It was hard for me to understand. I just kept thinking there was

no need for them to teach me how to live this life.”

His life nowadays is consumed by play rehearsals at SCR (his current

role as the Big Bad Wolfe’s defense attorney even requires jumping),

taking driving lessons with his dad and working out with physical

therapist Melissa Matta at Start Physical Therapy near Fashion Island.

He lifts weights, walks on the treadmill, tries balancing exercises on

just his right leg.

In the fall, the sophomore will begin his reign as layout editor of

the school’s yearbook, called Ebb Tide. He will serve as Assistant Chief

Justice on the school’s student court and will continue acting onstage.

Chances of relapses are slim, Evan said. Doctors doubt he needs to

worry.

So he doesn’t -- not even when he gets the same ache in his neck that

preceded the paralysis that one Sunday. They come about once every two

months. He gets scared, but he doesn’t linger on the fear.

“He never feels sorry for himself and he just feels like he can do

whatever he wants,” Gail Hirsch said.

Including driving. Gail Hirsch recently had an adapter installed in

her white sport-utility vehicle -- a brake on the left side. Evan reaches

over with his left hand to start the engine. He manipulates the gearshift

with his left hand too.

But this week, during a drive around the block, he steadily turned off

the engine with his right hand.

“We believe and are confident he’s going to get 100% better,” Gail

Hirsch said. “He even says he’s going to ski again.”