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A lifetime of darkness

Seizures, as many as 40 a day, were a decades-old fact of life for James Huffman. Then doctors told him they might have a cure, if he would let them cut into his brain.

CAMILLE C. SPENCER
Published September 24, 2006

In two days, doctors planned to cut out part of James Huffman's brain. So his wife threw him a party.

On July 15, everyone gathered at their home in Port Richey. Friends and family milled around outside. James, 43, sat on the hood of a car, talking with his mother, Dana.

Then a feeling came over him, an "aura." He put his left hand over his eyes. His right arm shot out, as if for balance. He leaned back on the car.

Dana Huffman knew what to do: Try to make sure he doesn't hit his head. Shade him from the sun.

A minute later, it was over. James sat up.

The pending surgery might eliminate moments like this, which have inflicted him with 33 years worth of embarrassment and uncertainty.

"I don't want to have to worry about leaving work early or hurting my kids," James said. "I don't want to worry about scaring people away from me. People get nervous when I have a seizure around them."

On the day of his party alone, James had six. A video camera captured one. James, standing in his yard, put his left hand over his eyes. He sank to the ground, rolled to his right four times, ending up on his elbows.

For James, the bottom line never changes: "I always have this feeling that something bad will happen today."

* * *

November 1973, Union Lake, Michigan. Jimmy Huffman, 11 years old, was in gym class. At the end, the teacher told him to put away the basketballs. One boy wouldn't return his ball, so Jimmy took it from him. After school, the boy and some of his friends went after Jimmy as he walked home. They kicked and punched him.

"He came in the house and said he was fine," Dana said. "We never even took him in for X-rays or anything. He had some scrapes on him."

* * *

That January, the Huffmans returned from a Florida vacation. An ice storm interrupted the drive home from the airport, and they ended up spending the night at the home of Dana's sister.

The next morning, James wandered into the kitchen. Three cousins sat at the kitchen table, eating cereal.

James: I heard my cousins having breakfast. That's all I remember.

He remembers nothing of this seizure, or any of the multitude he has endured. Others fill in the blanks.

Dana: He had a strange look on his face. He put his arms out like an airplane ... I remember him going into a spin. You know how boys are, so I said, 'Stop that, you're scaring me.' But his eyes rolled into his head and he convulsed on the floor. I thought he died.

Doctors couldn't figure out what was wrong. "They put him on medication," Dana said. "In the beginning, his first neurologist treated him like I was exaggerating, like I was a hysterical, overprotective mother."

James' life changed. School kids said he stuck his fingers up his nose when he had seizures and nicknamed him "Double Barrel Nose Picker."

* * *

Eventually, doctors said James had epilepsy, the diagnosis they give someone who has at least two seizures not caused by a known medical condition.

Back then, no one could tell the Huffmans why James had epilepsy. The family figured there must be a connection to the beating James endured just before his first seizure.

Epilepsy affects about 2.8-million Americans and 160,000 Floridians. The disease is incurable, but medications help most epileptics lead fairly normal lives. But roughly one in seven have cases so severe that even medication does not control the seizures.

James is one of them.

As a child, James would thrash in his bed at night, sometimes falling on the floor. His family grew accustomed to gathering in his bedroom.

James would wake to the sound of his mother's voice.

His sister Tammy recalls: My mom would say, 'Where do you live? What's your name? What's your address?' " She would try to get his mind back to working. He would be lying on the floor, trying to get his senses. Sometimes, it would be an all-nighter - four or five times a night.

* * *

When he was 18, James wanted to join the Air Force.

"I tried dancing around my medical history, but I couldn't," he said. "They said, 'Any epilepsy in your family?' I said, 'Yeah, me.' I was aggravated."

James moved to Florida and worked odd jobs. He met future wife Jennifer in 1993 at the Palm Harbor Wal-Mart where they worked. At the time, James had a broken foot.

A joker, James tried to impress her. Though injured, he would run up and down the stairs to get packages. At first, she thought he was annoying.

But James grew on her. Jennifer had worked in a nursing home, and was used to caring for people. Soon, the fun-loving James and nurturing Jennifer were inseparable.

"He told me from the start, when we started going out," Jennifer said. "He explained that he is an epileptic, and how his seizures were bad when he was little. It wasn't like he was worried what I would think. It was, 'It's something you have to think about if we are going to be together.'"

* * *

That fall, Jennifer was at James' house. He was sitting on the couch when he suddenly grabbed his head with his left hand - the precursor, she knew, to a seizure.

"It was just us, and he did the same hand over the eye thing and then rolled on the carpet," she said. "I kind of knew from talking to his neurologist not to hold him down. I was thinking, 'It wasn't as bad as I thought it would be.' I guess you assume it's like people foaming at the mouth."

Sometimes, James had seizures at work, and Jennifer would have to take him home.

James: I was in an aisle between food and apparel. I fell on the floor and people were gathering around. I remember putting my hand on my head and trying to protect my head. About 10 people gathered. I said, 'I'm okay.' And then I went to the back of the building and sat down.

They married in 1994 and have two sons. Nathan is 23 months old. Matthew is 7. James is now an assistant manager at the Palm Harbor store.

Jennifer stopped working last year when James' seizures became more frequent. The boys have learned to adjust.

"Nathan knows to stay away," Jennifer said. "Even in the hospital, Matthew says to the nurses, 'It's okay. My daddy is having a seizure. Don't hold him. It's okay."'

James hopes nothing happens when the boys turn 11, the age when he had his first seizure.

* * *

For James, each seizure has a Groundhog Day-like feeling.

"It goes over and over again. It feels like you've done this before."

Once, Jennifer left the shower and found James lying on the floor in Matthew's room where the boys had been playing. He was drooling.

The room was dark. James was alone.

James: She slapped me, and I woke up. I said, 'I'm playing with Nathan.'

Jennifer: I said, No, you're not.

* * *

At 8:05 a.m. on March 24, 2005, James was driving north in the outside lane on U.S. 19, headed home from the night shift at Wal-Mart.

He lost control of his electric blue 2002 Mitsubishi Eclipse. The car spun counterclockwise, crossed the remaining three northbound lanes, the median and all four southbound lanes. It ended up in a retention pond. No one was injured.

James remembers only the before and after: I recall feeling the seizure coming on. I thought I was pulling to the right side of the road, but I guess I was pulling to the left.

John Manna, community service officer with the Florida Highway Patrol, who interviewed James at the scene: He had no recollection at all of having the seizure directly after the crash ... everybody was amazed that he crossed all four lanes and nobody hit him.

* * *

Despite that incident, James drove for nine more months. But on the way to work last November, he felt the aura.

He pulled into a Hess station in Palm Harbor and called Jennifer to come get him. While he waited, James got bored. He counted seizures on a note pad.

The count reached 40.

At Regional Medical Center at Bayonet Point, doctors said he had a stroke. They gave him medication and sent him home.

A month later, James' neurologist performed an MRI. There had been no stroke.

Instead, doctors found an abnormality on the left side of his brain. James was referred to Bayfront Medical Center's comprehensive epilepsy program in St. Petersburg.

The abnormality was a cluster of nerve cells. In normal people, those cells disperse to the outer cortex of the brain. In James, they remained a clump. No one knows why. Doctors said these cells caused James' seizures.

It was not the childhood fight.

* * *

The discovery gave James something he had gone without for decades: hope.

Doctors said they could cut out the aberrant cells after precisely locating them using a process called brain mapping. Bayfront is one of five hospitals in the state that perform the surgery, which costs between $50,000 and $200,000.

Doctors there perform the procedure about 10 times a year. They say it had about a 50-50 chance of a cure and an 80 percent chance of reducing the rate of James' seizures.

The surgery is risky. The clump of bad cells was near part of his brain controlling memory and motor function, so James considered living with gaps in his memory or weakness in his right hand.

James wondered what kind of man he'd be if things worked in his favor.

"It took 33 years," he said, "to find the light at the end of the tunnel."

* * *

Before surgery, James prepared his sons for the worst.

If I lose movement in my right hand, he told them, grab my left one. Three squeezes means I love you.

* * *

James began a 12-day stay at Bayfront on July 17, a Monday.

Around 10:30 a.m., Dr. Kirk Jobe began, under the glow of 10 fluorescent lights. Doctors used a drill the size of an electric toothbrush to cut into James' head. They pulled out a 4- by 3-inch patch of skull and put it into a plastic container with saline and antibiotics.

Doctors placed a grid numbered 1 through 64 on his brain and sutured it in place. Each grid is tiny: five of them would cover maybe a square inch of brain surface. Electrodes connected the grid to an EEG machine, which measures electrical activity in the brain.

* * *

On Wednesday and Friday, in sessions lasting about four hours each, doctors precisely mapped the location of the clump of bad cells.

James sat up in his bed. A white bandage covered his head. Dr. Erasmo Passaro, a neurologist, sat in a chair next to James.

A simulator, a machine the size of a boom box, sat on a table next to his bed. The simulator connected to the EEG machine, which connected to electrodes on James' brain.

Passaro turned the simulator's black knobs to send an electrical current to each of the 64 boxes in the grid, one at a time.

It's like a high-tech game of battleship, where doctors tried to precisely locate the clump of bad cells. Just as critical, they identified areas that should not be removed.

James, awake for the procedure, was the other player.

"Stick your tongue out really fast," Passaro instructed. The medical team closely watched James' reactions to the stimulus. At one point, James' tongue retracted.

"I didn't do that," he told Passaro.

"That means we're in the tongue area, don't touch that," Passaro said. "If we touch that, he won't be able to talk."

* * *

The surgery to remove the damaged part of James' brain was July 26. Again, James was awake.

Before surgery, doctors performed a last round of checks to insure the accuracy of the map they had made of James' brain.

Two doctors ducked beneath a baby blue cloth hung like a hood above James' head. As Passaro stimulated the numbered grids, they asked James if he felt anything.

James' right eye twitched. Later, he said, "I felt my finger move."

Four hours later, surgery is over. Doctors say things went well. James went home on July 28, the top of his head marked by a semicircle of staples that look like baseball stitching.

* * *

It's been eight weeks since the surgery - and no seizures. Doctors won't consider him cured until he's gone a year without one.

Then, with a doctor's consent, he'll be able to do something he hasn't in almost a year: drive.

"I have always tried to keep my life as normal as possible," he said last week. "I try not to worry about having seizures. I tell myself I won't have any. But I didn't feel limited before. The only thing I can't do is drive. I want to drive to Michigan to see my mom. She gave up (two months) of her life to be here."

* * *

James turned 44 on Aug. 8. He returned to work on Labor Day. He's cautiously hopeful as he begins living the life of a normal man. And he is grateful for the chance.

"I didn't want," he said, "to be the little engine that could who didn't try."

Camille C. Spencer can be reached at (727) 869-6229 or cspencer@sptimes.com.

What is epilepsy?

Epilepsy is a neurological condition, which affects the nervous system. Epilepsy is also known as a seizure disorder. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.

What are seizures?

A seizure is a sudden surge of electrical activity in the brain that usually affects how a person feels or acts for a short time. Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

Source: www.epilepsy.com

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