OWNING HIS WORLD

Leo Pluhacek wanted a ‘normal’ life, an independent life like his older brother’s. But with epilepsy, he is learning to deal with what comes in his quest for independence.
BY ERIN GRACE | WORLD-HERALD COLUMNIST | PHOTOS BY SARAH HOFFMAN

By Erin Grace / World-Herald staff writer

Saturday, September 10, 2016


Leo Pluhacek needed to get to his counseling appointment at the top of a steep hill.

But his battery-powered Razor scooter, which already had gotten him up one hill and across a busy street, suddenly quit.
The Razor was out cold. Dead as dead can be.
Another letdown for a young Omahan with epilepsy whose quest for independence seemed stymied at every turn.
Leo wanted to have a “normal” young adult life with his own place, a social life, a love life and the freedom to be on his own. Instead, health and bad luck kept blocking his way. He’d get excited about every step forward only to be crushed when fate would seem to push him back two steps more.
In Leo versus The Universe, the universe was winning, and now, on this winter day, at the bottom of this steep hill, the stalled-out scooter was proof of his stalled-out life.
See! the Razor seemed to say. Leo, you are stuck, stuck, stuck.

NOVEMBER 14, 2014: Leo Pluhacek hangs out in his bedroom. Pluhacek suffers from epilepsy and has overcome many roadblocks in order to become independent.

There are a zillion clichés to instruct what human beings, when faced with struggle, are supposed to do:

Play the cards you’re dealt. Make lemonade with all those lemons. Find the silver lining, etc.
It’s a tidy, boot-strappy ethos that glosses over the hard work involved in keeping on. It leaves out human nature’s strong instinct to want to fold or chuck the lemons out the window or cry all through the clouds. Persevering isn’t the triumph at the finish line. It’s that inch-by-inch slog — something Leo knows all too well.
He’s had to manage having unpredictable, debilitating seizures. And he’s had to manage his own expectations about the degree to which he can have control. He has learned you can’t grasp onto every possible solution like it will fix everything. He has do something paradoxical — stay hopeful, but temper his hopes so he isn’t so rattled when things don’t work out. As Leo zigzags into adulthood, his much-desired independence often seems so elusive.

NOVEMBER 19, 2014: Leo gets checked over at the Nebraska Medical Center after surgery to install a chest implant to deal with seizures.

“You know how some people have some days they can bottle it up really well, but inside want to throw a table across the room?” he said once, when he kept applying for jobs he didn’t get. “I’m on one of those days. It seems like ... they’re playing the ‘you-have-a-disability-we’re-not-sure-about-you’ card.”
He’d just hung up the phone with a past employer who he felt was talking down to him.
“I may be slow,” Leo said, “but I’m not dumb. He was talking to me like I’m dumb.”
Leo’s struggles started at birth, 24 years ago.
He was born with a bigger-than-usual head and hydrocephalus, which can cause brain damage. He suffered some developmental delays in early childhood and then was in a freak accident.
The summer before seventh grade, Leo had been shooting hoops one day at Gifford Park when one of those portable steel-pole-with-backboard contraptions fell and hit him square on the head. He got seven stitches. A month later, he had his first major seizure.
His mom, Kristin, had been driving him to the dentist when he suddenly stopped talking. Leo gasped for breath. He turned blue. His body stiffened and one arm shot straight up. He jerked around violently for a minute.
By the time they got to their house at 36th and California Streets, Leo had been unresponsive for 20 minutes. He came out of a trance-like state very tired and with a terrible headache.
What had just happened?
A neurologist had the answer:
Epilepsy.

DECEMBER 22, 2014: Leo and his father Mark Pluhacek leave the house to buy Christmas presents for Kristin Pluhacek.

Epilepsy is a fairly common, though incurable, seizure disease.

The brain misfires, shooting bursts of electricity that upend a person’s sensory system. The result is a wide range of seizure types, from a fleeting, barely noticeable loss of consciousness to major convulsions. The seizures are recurrent, often triggered by stress.
Epilepsy can be caused by a genetic defect or an event like a stroke or traumatic brain injury. Often, the cause is unknown.
Medication and surgery, when possible, can help manage the seizures. In some cases people can grow out of the seizures, but there is no guarantee they won’t return.
Leo had experienced seizures in infancy, too, but those were different and, according to his parents and neurologist, unrelated. The seizure he had in his mother’s car and the subsequent ones have been way more intense, longer-lasting and with aftereffects. After a typical seizure, lasting several minutes, Leo falls into a deep 20-minute sleep. After he wakes, he is emotional, has a bad headache and sometimes vomits.

DECEMBER 22, 2014: Leo and coworker Shelby Burton work security at the ConAgra ice rink.
JANUARY 7, 2015: Leo and Mark work on renovations in their attic. The refinished space gave Leo more space and more independence than he had in his childhood bedroom.

“It’s pretty nasty,” his mother said.
At first, anti-seizure medication offered some relief. Seizures came less frequently, but they were still intense, still unsettling. And when they came in places like the cafeteria at Lewis and Clark Middle School, well, they were embarrassing.
Leo finished junior high, graduated from Omaha Benson and was a bit at a loss for what to do next.
He knew this: He wanted a “normal” life, an independent life.
He looked to big brother Zach, who had a place of his own in Lincoln, a reporting job for the Lincoln Journal Star and a girlfriend.
Leo wanted his own life to march forward like Zach’s. As much as he loved his folks — Mark, who owns a Dundee restaurant by that name, and Kristin, an artist — Leo wanted to be on his own.
And because of Mark and Kristin, Leo believed he could.
They taught him to drive, to problem-solve and to advocate for himself. If Leo wanted a job, he needed to go get it. If he felt he was unfairly treated, he needed to speak out. If he wanted to date, there was Match.com, which Leo tried a couple of times.
Leo’s folks also made sure that as their son spread his wings, he’d always have a place to land.
So they refinished their attic, giving Leo more space and more independence than he had in his childhood bedroom. Eventually, the goal is for Leo to have his own apartment.
About two years ago, Leo thought that day was near.
He’d gotten a special device called a Vagus Nerve Stimulator, or VNS for short, implanted in his chest, with wires that snake up his neck to his brain to regulate the activity going to the brain. That, along with a special wristband magnet, was supposed to alleviate the worst symptoms of his seizures and maybe stop them altogether.
He’d gotten Tony, an adorable goldendoodle service dog trained to help him if he did have a seizure.
He’d gotten a job working security at a downtown Omaha building, and he had a newly earned associate degree in general studies.
Things were really looking up.

MAY 12, 2015: Leo looks online for job postings shortly after he had been laid off from a seasonal position at a local gardening store.

The seizure came a couple of weeks after surgery.

Leo, then 22, was in the tiny bathroom of his folks’ home.
He didn’t have on his magnet, so he couldn’t activate his VNS implant. Tony squeezed into the bathroom but couldn’t lie beside Leo as he was supposed to, so he scrunched up to Leo, standing awkwardly until help arrived. Leo’s parents awoke to the sound of Leo’s feet kicking the wall. Kristin found Leo lying on the floor, kicking and throwing his arms.
Leo wound up with a bruise on the side of his head, a golf-ball-size blister on his foot and a rattled confidence.

MAY 19, 2015: Leo is congratulated by his mother and father at his graduation from Metropolitan Community College. Armed with an associate’s degree in general studies and a job working security at a downtown Omaha building, Leo seemed closer to his goal of independent living — especially after surgery that held the hope of alleviating the worst symptoms of his seizures.

Other dominoes fell. His boss at the security job didn’t love that Leo was now bringing a dog. Leo lost the job. And despite his applications and phone calls elsewhere, he couldn’t get a bite.
But the worst was the car accident last October. While driving his pal Andrew and Tony the dog around, Leo’s car crossed busy 90th Street against the light at Maplewood Boulevard and was T-boned. There was no indication that Leo had a seizure; instead, Leo said he had tried to press the brake pedal but the car wouldn’t stop.
Leo remembered Andrew screaming but nothing else until he woke up covered in glass.
The dog was so badly injured, he had to be put down. The car was totaled. His friend was hurt but escaped permanent injury. Leo was OK. He had a concussion and whiplash. More damage was done to his psyche.
Leo became fearful. He didn’t want to drive. He was heartbroken about Tony. Plus that independence he’d worked so hard for seemed really shaky. His neurologist said: No full-time work.
Once again, the universe was telling Leo: “No.”

AUGUST 15, 2015: Leo goes on a hayride during an outing with Young Adults with Epilepsy, a group he founded.

For a while after the accident, Leo wondered if the universe was right.

He mourned Tony. He felt bad about his fruitless job search.
But slowly and over time, his perspective changed.
Counseling helped. Leo went to see a therapist after the accident. An epilepsy support group helped. Leo has friends whose struggles are similar — and sometimes worse. They help him keep his problems in perspective.
What really boosted him was landing a new job. He started working for the City of Omaha’s parks and recreation department in March. The work was part time and paid just $10 an hour. Plus, it was seasonal, which meant it ended about two weeks ago. Still, having somewhere to go and something to do for six months has given Leo confidence.

NOVEMBER 17, 2015: Mark, left, Leo , center, and Kristin, right, hang artwork in Leo's new attic apartment.
MARCH 7, 2016: Leo goes to his first day of work as a Park Maintenance Worker with the City of Omaha Parks and Recreation department at Hansom Park.

At his doctor’s suggestion he has applied for federal disability that, combined with the part-time work that would be allowed, could be just enough income for Leo to afford to move out.
For now he’s living at home, in his folks’ renovated attic. He’s got a new dog, too, a Doberman-English coonhound mix named Jake. A former Nebraska Humane Society castoff, Jake is not specially trained as Tony was. But he gives Leo company and is a good excuse to get out of the house. Leo likes to take him for walks and play fetch.
Recently, Leo was in good spirits.
“Lowering my expectations helped,” he explained.
That sounded so defeatist to me.
Leo shook his head.
He meant that he accepts where he’s at. He will try to greet things that come with a kind of leveled understanding that this is life. Good things are good things and not silver bullets. Bad things are bad things but not lightning bolts from the sky.
Speaking of which, Leo has totally blocked out the universe.
If it’s winning, he’s not keeping score.
On that day when his scooter died, Leo did something seemingly small yet significant.
He got out of the saddle. He grabbed the handlebars.
And Leo pushed that 50-pound machine from the bottom of Underwood Avenue, where it meets Saddle Creek Road, to the top of the hill.
It’s what you do in life. It’s how you become truly independent.
402-444-1136, erin.grace@owh.com, twitter.com/ErinGraceOWH

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