Hart to Heart: How to live life to the very end
Anne Hart | Sunday, July 13, 2008 at 12:30 am
Billie Jo "BJ" Wilson is dying.

A fatal, incurable neurological disease has left her unable to move any part of her body other than her feet, head and tongue.

She hasn't lifted her beautifully manicured hands off her pillows in almost two years. Walking is out of the question.

Amyotrophic lateral sclerosis (ALS) is extinguishing BJ's motor neurons, leaving her body limp and powerless. Her mind remains healthy.

"I don't know what to call myself because I don't feel sick. I don't feel nauseous. I am not in any pain," said BJ, 64, of Savannah. "But I just can't move my body."

Refusing to play a self-pitying sick person, BJ's determined to reach out to as many people as possible despite her illness.

Visitors who come to BJ with the sole intention of lifting her mood end up leaving her side with a new testimony of the human spirit. Her story is one in which the patient truly does the healing.


A tormenting destiny

Commonly called Lou Gehrig's disease after the Yankee slugger who died of it, ALS typically kills patients two to five years after diagnosis.

BJ was diagnosed in August 2006. By November of that year, she could no longer feed herself.

She was told she would soon lose her ability to speak and swallow.

But her throat has been spared so far, allowing her a simple joy she savors, the ability to talk.

BJ's making the most of that remaining gift of speech. Every day, she lies in a chair in the family playroom hosting visitors, entertaining friends, counseling newly diagnosed ALS-patients, praying with fellow church members. This mother of two delights in her grandkids crawling over her and kissing her, not at all frightened by their "Bubbe's" oxygen mask and bi-pap machine.

Now that the ALS Association of Georgia has started a local support group, BJ has become a strong advocate. She can no longer attend but makes sure her husband and caregiver, Don, is there. She encourages other family members of patients to attend to learn about caregiver resources and medical gear available for loan.

The next meeting is 11 a.m. to 2 p.m. July 23 at Skidaway Island Presbyterian Church.

Attending can be both physically and emotionally challenging. Especially when patients see those with more advanced ALS.

"Some won't go to support group because they don't want to see themselves down the line," said BJ, sounding more like a therapist than patient "But you have a choice, you can either accept ALS or you can reject it."


Wealth of friends and family

BJ accepted ALS from the beginning. She was diagnosed shortly after retiring from work in a neurologist's office. Before that, she spent years as a medical staff coordinator credentialing doctors at Memorial University Medical Center.

BJ and Don, recently retired from Colonial Oil, had planned to spend retirement traveling and enjoying their four grandchildren.

"Why get angry over something you have no control over?" BJ says. She credits her strong faith as well as her thick circle of family and friends for helping her accept ALS.

Just look at how many gatherings have been re-arranged to take place around BJ's chair.

A church Bible study group, a monthly neighborhood lunch group, a church couples' dinner group - all used to take place elsewhere but now regularly unfold in the Wilson home.

BJ and Don's 44th wedding anniversary turned into a covered-dish affair with guests crowded around BJ's chair.

"Not a day goes by without several people walking through this door," Don said. That includes a pal who hired construction workers to widen the Wilson's doorways for BJ's wheelchair. The workers declined payment.


Not that everything is completely upbeat at the Wilson home. They have their dark times.

Watching her body degenerate is agonizing. BJ and Don cry plenty. But they also laugh.

She finds comfort in a worn copy of "My Dream of Heaven" a 19th-century spiritual classic that BJ's friend read to her.

Originally known as Intra Muros, the book gives a woman's warm account of the afterlife.

"I will die in this bed," said BJ. "When I take that last breath, God accepts me right then and there. I won't have emptiness or loneliness. It will be wonderful."

Except for those left behind.


Contact Anne Hart at anne@southernmamas.com. Go to her Web site for local parents at www.southernmamas.com.

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