Single woman with ALS raising two kids
JACKSONVILLE — 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 towers 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 only able to move the left side of her head voluntarily, 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 outside Jacksonville. 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 to Kern 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 once never left the house without makeup on. 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, and 21-year-old daughter, Jessica.
The divorce was final last month, ending Kern’s Tricare coverage. While her condition allows Medicare to pick up a lot of her medical needs, 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, are also no longer 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.”
A fund has been set up to help Kern pay for her 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 firstname.lastname@example.org
or at (252) 353-1171, Ext. 238.