Against the odds
August 28,2006
ROSELEE PAPANDREA
DAILY NEWS STAFF


Sticking it out: Rebecca Kern, her mother Frances Locklear, and her 17-year-old son Chris Mortenson spend time together at the Kern home in the Southwest area

Rebecca Locklear Kern lived 40 years in almost perfect health.

She never had the flu or any broken bones. It was rare for even a headache to slow her down. A wife of a New River Air Station Marine, a working mother of two and an avid jogger, Kern was in excellent physical condition.

The first signs of a problem arrived Sept. 11, 2001.

At the time, Kern was working at a physician’s office in Jacksonville. She watched on TV as a plane hit the World Trade Center in New York — one of several terrorist attacks that memorable day — and ran down the hallway in her office to alert others.

While she was preoccupied with what was happening in New York, Kern noticed that one of her legs seemed sluggish as she ran. After a few visits to the doctor, she received shocking news in January 2002.

A neurologist diagnosed her with amyotrophic lateral sclerosis or Lou Gehrig’s disease. His advice: take any trips she wanted and do it quick. There was a wheelchair in her future. His prognosis: two years to live.

“I was devastated, which is truly an understatement,” Kern, 45, recently wrote in an e-mail because she can no longer speak due to the progression of the neurodegenerative disease that typically strikes people between the ages of 40 and 70.

Full of spit and vinegar, she outlived the doctor’s predictions. Still, she doesn’t kid herself. Not anymore. She lives with a fatal disease invading her body.

“The first two years were a roller coaster in a never-ending nightmare,” she wrote. “I denied the truth and put up a hell of a fight. I was consumed with fear about what was in store for the future. I was sad and angry all the time. I really put my family through hell as I began losing my independence.”

Blessing and a curse

Following her diagnosis, Kern continued walking for a while. Eventually the muscles in her legs and arms shut down. Little by little, Kern was robbed of all that was familiar. She held tight to what she had — the support of her teenage children, extended family, friends and her husband.

At that time, she had no idea how much there was left to lose.

Today — more than four years after that initial diagnosis — Kern is unable to swallow. She can’t speak and is able to voluntarily move only the left side of her head, which allows her to type words into a speaking device called a Dynavox that helps her communicate. She also can send e-mail.

Trapped in a body that no longer works, Kern’s mind remains sharp. It’s a blessing and a curse.

“Unfortunately, my mind is perfect and sometimes that’s not a good thing,” Kern says through her Dynavox during an interview at her modest home in the Southwest area. The computerized voice is expressionless. But tears still slide down her face when her heart aches.

The loss of speech is difficult. People who don’t know her treat her differently, says her mother, Frances Locklear, who lives next door and assists with her care.

“People will whisper around her like she’s not there,” Locklear says.

Kern has given up so much just to survive, leaning on others for everything.

“My legs were the first to go and that wasn’t too bad; but when my arms and hands became paralyzed, the frustration was overwhelming,” Kern wrote in an e-mail. “I couldn’t feed myself, bathe, brush my teeth, brush my hair or dress myself.”

She describes a woman who never used to leave the house without makeup on. But since 2005, she has relied on a feeding tube for sustenance — regardless of how it looks to others.

“I could not even comprehend having a tube sticking out of my stomach,” she wrote. “I know now, I would not be here today if I had refused it. Goodbye vanity.”

Kern also was forced to let go of her marriage. Her husband left her in May 2005. She is raising her 17-year-old son, Chris Mortenson, and 21-year-old daughter, Jessica.

The divorce was final last month, ending Kern’s Tricare coverage. Although her condition allows Medicare to pick up a lot of her medical expenses, it doesn’t cover the feeding tube, the home health care or the ventilator she will eventually need. Her children, who are hers from a previous marriage, also no longer are insured.

“Now after 13 years of marriage, I lose all military benefits,” she wrote. “The military doesn’t care that I have been a faithful and devoted wife and one that stood by her husband through every single deployment. Just when I need Tricare insurance the most, they take it away.”

Kern, along with her friend Susan Bolash, made phone calls and wrote letters to state and federal legislators and high-ranking officials in the military in an effort to keep the Tricare coverage. They failed to get anyone to listen.

“It doesn’t seem fair that when a man leaves a woman facing a fatal disease through no fault of her own that she should lose her insurance coverage,” Bolash says as she sits by Kern’s side. “She lived beyond her life expectancy. For the military not to allow her to have insurance for the rest of her life, it stymied me.”


Mover and shaker

In many ways, Bolash is Kern’s voice.

“I honestly don’t know where I would be or in what condition I would be in today if it wasn’t for everything Susan has done for me,” Kern wrote in an e-mail.

Bolash sees it differently. She watches her friend continue to live, conquering the roadblocks and surviving regardless of the losses. Kern remains full of passion and vigor — a go-getter just like always.

“Becky does her own stuff,” Bolash says. “She’s the mover and shaker here. She tells me what we need to get done and we do it.”

Kern relies a lot on her caretaker, Rhonda Rich, who works part time and also drives an Onslow County school bus. Rich took the job last September with plans of offering her services to the elderly. She ended up with Kern and learns as she goes. It’s her first time caring for someone with ALS.

Rich bathes Kern, gets her dressed and makes sure she gets fed. Rich, who is adept at interpreting Kern’s sounds and reading the slight variations of her lips, helps with communication.

Rich asks a lot of yes-and-no questions and can narrow down Kern’s wants and needs by watching her eyes. Two blinks mean “yes.”

“I don’t know what I’d do without her help,” Kern says through the Dynavox. “She is a godsend.”

Rich shrugs it off, acting as if she’s always been a part of Kern’s life and trying hard to blend into the background as Kern’s mother talks about how her daughter was always so active.

“She’s still active in her mind,” Rich says, finally piping up. “I’m just her body now.”

Kern finds a way to keep her personality vibrant. Her friends and family no longer benefit from the joy of her laughter, but it doesn’t stop the jokes.

“I spell a lot,” Kern says through the Dynavox, relying on pre-set phrases that she can just push without having to type out individual letters.

“Stop that. Stop that. Stop that,” the voice on the Dynavox declares. “Leave me alone.”

Everyone in the room laughs. Kern’s eyes shine.


Rest of her life

Kern could go to a nursing home to live out the rest of her life. Medicare would cover it. But she won’t leave her children to fend for themselves. Jessica is a senior at East Carolina University, where she was named homecoming queen just last year. Chris attends Southwest High School. He is a senior and plays football. They are both honor students.

“It’s not for selfish reasons that she wants to stay in this home,” Bolash says. “She wants to finish raising her son.”

Kern’s children fill her with pride, especially their willingness to support her no matter what happens. But she’s a mother — still protecting her young — she can’t help but dwell on what her condition does to them.

“Not only have they had to help care for me, they have had to run the entire household,” Kern wrote. “They clean the house, buy the groceries, cook, pay the bills, take care of my banking, etc.”

After his mother goes to bed at night, Chris wakes up every few hours so he can turn her over — something she is unable to do on her own.

“They are terrific kids,” Kern wrote. “I’m so proud of them but at the same time, I feel so guilty. It is not fair to them. I can’t be a normal mother to them. I want so much to cook their favorite meal, have a normal conversation with them and just put my arms around them and give them a big hug.

“I can’t even hug them without their help.”


A fund has been set up to help Kern pay for medical needs. Donations may be sent to Marine Federal Credit Union, in care of Rebecca Kern, P.O. Box 1551, Jacksonville, N.C., 28541-1551. Contact staff writer Roselee Papandrea at rpapandrea@freedomenc.com or at 353-1171, Ext. 238.




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