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Behind the shades

Weirton man has new lease on life after lengthy struggle with undiagnosed condition

December 30, 2012
By SUMMER WALLACE-MINGER - Weirton Daily Times community editor , The Herald-Star

WEIRTON - For almost a decade, James Keller lived in the shadow of an "invisible bully," an undiagnosed medical condition that left him so dizzy and disoriented he stumbled into walls. Other times, he would experience seizures and blackouts that left doctors mystified. He worried about losing control during a seizure or falling and injuring himself or others.

"I was 22 when I started getting numbness in my hands and face," said Keller. "Everyone thought maybe I had vertigo. After about six months (of symptoms), I passed out for the first time."

Before it was all said and done, seizures, followed by blackouts or extreme fatigue, would plague Keller as many as four times a day. The grogginess following the seizures was so extreme, Keller had difficulty sitting upright.

"My head felt like it weighed a thousand pounds," he said. "And it was happening more and more."

Initially diagnosed with vertigo, the medications meant to treat him exacerbated his condition. He was referred to a psychologist, receiving a new and different diagnosis: an unspecified mental illness. Along with the new diagnosis, he received another set of medications that were supposed to treat his illness, but made him feel even dizzier and off-balance.

Keller began using a cane in an attempt to help his balance, because his dizziness was so extreme it was difficult to walk. The cane would be his constant companion for four years. Although he used a cane, Keller appeared outwardly healthy, and acquaintances began to speculate he was a hypochondriac or faking illness for attention.

"Everyone thought I was playing," he said. "They called me a faker. I had the cane, and, at family functions, at work, everyone would smile at you, but they would whisper behind your back. People just couldn't see that I had a problem. I called it the invisible bully - you just didn't know when it was going to come up and punch you in the face. I had to fight so hard just to be normal. I knew what they thought. People would look me in the face and smile, but I knew, when I walked away, they were calling me a liar and a faker. No one believed me, and my fear and anger just grew."

Keller even found understanding hard to find in his own family. He described a grocery shopping trip with his sister during which he had a seizure.

"It was snowing," he remembered. "We were getting along great, and I was helping her put groceries in the trunk. Then I woke up in an ambulance. I had had a seizure. That's when she realized what was going on with me, the severity of it."

Keller began withdrawing, suffering from depression and self-imposed isolation, wondering if he would ever discover what was wrong with him. He struggled to get through each day and continue working, although he frequently experienced dizzy spells and seizures at work. Worried about Keller's safety, his father encouraged him to apply for Social Security disability benefits, but he clung to the normality of work.

"My boss would let me go back into another room, and they would let me lie down and rest for a while, sleep it off," he said, noting he would would sometimes be at work for 80 hours or more, trying to get a 40-hour week in. "I had to fake it to make it."

As his condition worsened, his ability to work a full week eroded. Then, he had a seizure and fell into a co-worker, injuring him.

"The company couldn't keep me around anymore - I was a liability," he said. "It was one of the saddest days of my life. I had always said I wouldn't let this stop me, and then it cost me my job. I looked at my father and said, 'I guess I'm going to have to sign up now.' That was the end of my employment. It was a very difficult day, a low day."

He relied on the emotional support of his father and stepmother, Larry Keller and Tawney Keller.

"I had my father. He was one person who understood and cared. He took me to doctor's appointments, and he told me I had to be prepared for people - he said, 'you don't look like you're sick, and people are talking, so you have to have a thick skin,'" said Keller. "We were at an appointment, and the doctor told me this condition was going to end my life, and I just sat there. I was at the point where I didn't care. As far as I was concerned, I just wanted it over with."

At that point, Keller said his fear, frustration, anger and depression made him "miserable to be around. I didn't understand myself. I was scared. Every day, I got up, 'am I going to fall into traffic today?'"

He turned to self-medicating through alcohol.

"I was drinking heavily," he said. "I felt it didn't change the way I saw the world, because it was 24 hours a day of the same dizziness, same imbalance. It was never worse than what I had already."

His marriage dissolved under the pressures of his condition and alcohol abuse, and Keller turned to music to express what he was going through.

"I knew I couldn't continue to lash out at people," he said. "I couldn't put myself and my family in that situation because I was upset because I couldn't get people to understand."

A long-time music lover, Keller began writing songs about his frustration, depression and fear. He began performing as a singer, and his involvement in music has evolved into the band Descendsion.

"It was about dealing with this, about answering questions and making people see the real me," said Keller. "When I'm singing on stage, they have to listen to me. It was something to grab a hold of - it was a lifeline."

After another warning by his doctors his condition could be fatal, a conversation with his father about how he might be remembered made him realize he wanted to be remembered as someone who helped others.

"I thought, 'if this takes me today, what will other people remember?' It wasn't just a piece of advice, it became a way of life," he said. "I did a lot of waking up that day. I searched for God in a way I never had before. I realized everything happens for a reason. I had to go through the things I did so I could stand on the stage I am on. I had to learn to reject hate and to open my heart, learn how to love others regardless of what they did. There was a moment where I had to ask the question, 'where will you go? Heaven or hell?' And the road I was on, I was going to hell. Asking where God had been during this whole business and realizing he had been with me the entire time - if he hadn't been with me, I wouldn't be here."

He began to believe he could make a difference through music, and started working with those suffering from drug addiction and local drug abuse awareness and support groups with Dare to Prevent.

"A lot of people have it worse, and there are things I can do to stand together and help them deal with it," he said.

Almost as if his spiritual epiphany triggered a medical one, Keller was diagnosed with epilepsy after a brain-imaging test, eight years after his first seizure. Although he was still experiencing seizures and dizziness, Keller finally had the diagnosis for which he had been searching. However, he hesitated to speak about it openly. During performances, he frequently wore shades - not because it was part of his "look," but because flashing lights could trigger a seizure.

His neurologist recommended a pacemaker-like device for the brain, Vagus Nerve Stimulation Therapy, which would help decrease the frequency and intensity of his seizures. When Keller first learned of VNS, he was on the fence - the device required major surgery, but his father and his girlfriend, Litizia Pulice, encouraged him to go through with it.

"She came into my life a few years ago, and she gives me a lot of good advice," he said. "I asked her - one day we were just watching a movie - and I asked her about it, said I didn't know. She said 'I think you should do it,' and started crying. She didn't want anything to happen to me. I was risking everything, but I said, 'I'm doing this and we will deal with the consequences.'"

Nine years after first experiencing a seizure, Keller went through the surgery on March 8, 2011. During the surgery, a 1-ounce device was implanted in the left side of his chest, and a small wire runs under his skin and is attached to a nerve in his neck. The device delivers intermittently-pulsed signals to the vagus nerve, which then activates various areas of the brain. Using an external adjustment system, his doctors program the stimulation duration, frequency and intensity. Treatment is automatically delivered at regular intervals all day, every day.

The frequency of his seizures have decreased to approximately three times a week, and, when he feels a seizure coming on, he can use a magnet device to give himself an immediate extra dose of stimulation, stopping a seizure or reducing its intensity. Instead of hours of dehabilitating disorientation, he now can think clearly after only 10 or 15 minutes.

Despite an expected lengthy recovery, within three weeks, Keller was opening for the Bullet Boys at Hard Rock Cafe in Pittsburgh. He experiences hoarseness following stimulation, which concerns him as a performer, but he said the benefits outweigh the side effects.

Keller has discarded his cane.

"I feel like a new person," he said. "It has been a blessing."

He now wants to reach out to those with epilepsy and share his story in the hopes that others dealing with similar symptoms will recognize themselves and possibly be diagnosed quickly.

"If you're dealing with epilepsy - that invisible bully, the seizures - get to a neurologist and talk about VNS therapy, because it will change your life, and can even save it," he said.

"I'm taking a chance doing this. People have used my health against me. They've called me 'seizure boy' or 'brain damaged.' It hurts, but I'm stronger than those people who think I'm weak. I'm strong enough to reach to those people who are like me, but maybe feel like they aren't strong enough. I realized there are people who might be going through what I went through, and it's about finding those people.

"For the first time, I'm coming out and talking about how bad it was and how good it can be. It has changed my life. People need to know there are things they can do. You can live life and love life. Right now, I have the quality of life I've always wanted.

"If you're dealing with seizures, and you don't feel like anyone will believe you, look me up. I care. I will believe you."

He continues to reach out to the community, and since his surgery, he has a renewed commitment to volunteer service.

"Before, someone would give an idea, and I would run with it, but I didn't do the leg work," he said. "Now I can do it myself."

He recently became involved with Buddy Walk and said he plans to attend and participate in the Oct. 5 event.

"Those people are awesome," he said.

Keller and Descendsion will be the headline act at the "Heroes and Angels" benefit concert he is planning to fund raise for those affected by the Sandy Hook Elementary School shootings. The concert will be held at 7 p.m. Jan. 12 at Krazy 'Bout Sportz on Weir Avenue. It will include several local acts and a prize drawing.

"We have to make as much money as possible to send to these families," he said. "They've got a long road ahead of them. One hundred percent - every penny raised - is going to Connecticut."

No longer worried about being struck low by a seizure, Keller said the sky is the limit for his ambitions, which include continued volunteer service and performing all over the world.

"I see myself performing all over the world," he said. "I see myself using the gifts God gave me to help other people. My pipe dream is to tour the world. It might be a pipe dream, but where I'm standing now - there was a time when everyone said this was a pipe dream, and now it is my reality."

(Wallace-Minger can be contacted at swallace@pafocus.com.)

 
 

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