‘I am not glad it happened, but I would not regret having gone through it.’ : Foundation to Aid Paralytics Grows From Woman’s Tragedy

On the night that changed her life forever, Aneice Taylor and her family were scrambling to evacuate their house when a relentless avalanche of mud, rocks and trees slammed into it.

For what seemed like eternity, she remained pinned under the refrigerator as paramedics plowed through the debris to free her.

When she awakened in the hospital from a five-day coma, her body numb and her mind blank, her doctor pulled no punches informing her that her neck was broken and that she would be paralyzed from the neck down for the rest of her life.

“It was so unbelievable,” Taylor said, recalling how she grappled with the awful reality that, at age 37, one stormy night had turned her good life into an inescapable tragedy. “My loss was so tremendous. You’re just stunned.”

Gradually, Taylor would also learn that the nation’s health care system was not designed to cope with her plight or that of other quadriplegics.

The night of the storm, Jan. 4, 1982, Taylor was a healthy, happy woman. She had come from Ft. Worth, Tex., married, and moved with her artist husband, Gage, to scenic Marin County north of San Francisco, where they were rearing their son and daughter.

The terrifying events of that night were wiped from her mind by the trauma. Today, she still stares in amazement at newspaper pictures showing the pile of sticks that had been her house before the rain-soaked hillside crashed down and flattened it, pushing the ruins 35 feet off the foundation.

Miraculously, her husband and children were not hurt, and Taylor was grateful for that. But she had met an unthinkable fate: to be imprisoned in her own body, unable to care for herself or move anything but her head.

At first, she was taken care of in the hospital, and everyone rallied around. Friends helped the family get back on its feet. They pitched in with money and later, using volunteer labor, they built the Taylors a new house in the rustic San Geronimo Valley, especially designed to accommodate a wheelchair.

But eventually the enormity of Taylor’s affliction took its toll. Her husband moved away, leaving her with a broken heart and financial calamity.

Physically helpless with no means of support, two children to rear and dependent on 24-hour care, Taylor could have given up in despair.

“When you’re paralyzed, the quality of your life relates to your attendant care,” she said in an interview. “Without it, you can’t do anything. You can’t exist. You need a phenomenal amount of physical care.”

Because she owned the home her friends had built, Taylor was ineligible for certain types of aid, and foundations that provide assistance in desperate cases turned her down.

Taylor’s challenge was to raise the $2,700 a month she needed to maintain her home, support for her growing children and pay for an attendant to provide home care.

Altogether, counting food stamps, in-home care and disability benefits and assistance from Aid to Families with Dependent Children and from Medi-Cal, California’s version of Medicare, Taylor was receiving $1,836 a month for herself and the children, Lincoln and Deva, now 17 and 11.

“Medi-Cal pays hospital bills but not home care,” Taylor said. “They don’t want to face the fact this is a problem that’s not going to go away. This is awful to say, but probably they just wish you’d die.”

The Red Cross was providing temporary rehabilitation payments to her as a victim of a natural disaster, but she had to find a permanent solution.

Moreover, Taylor was hearing about others like herself in dire need: A young woman left alone and helpless in her wheelchair with no one to care for her; a paralyzed Vietnam veteran “dumped” near a subway station; a young man kept in a hospital for three years at enormous cost to the taxpayers because no home care was provided.

“Aneice fell through the cracks,” said her friend, Marty Meade, a stained-glass artist. “We encourage (quadriplegics) to live, and then we leave them with no provisions.”

Taylor refused to let the financial crisis overwhelm her. She groped for a solution to her own dilemma and finally decided that if there was no federal or state program for the long-term home care she required, and no foundations would help, she would start her own foundation to care for quadriplegics.

“I was going to have to do something to save myself and that looked like the only thing I could think of,” Taylor said.

Four years later, “IN SPIRIT” was born. It stands for “In Support of Paralytics in Real Intense Times.”

“I studied, I learned how to do it, I put it together step by step,” Taylor said.

After a year of filling out forms and filing with the Internal Revenue Service, the nonprofit IN SPIRIT was ready in May, 1987, to begin receiving grants. On Jan. 4 of this year, the sixth anniversary of the storm, the first grant arrived, $10,000 from the Rex Foundation, established by the Grateful Dead, the Bay Area rock group.

“Someone in our scene heard about the woman. They thought she was remarkable and sought to help her out,” said Dennis McNalley of the Rex Foundation.

Taylor said she immediately allocated some of the grant money to help a young paralyzed woman who was alone and needing care, one of many desperate cases Taylor seeks to assist if she can get IN SPIRIT going strong.

To try to persuade lawmakers to institute long-term care programs for the paralyzed, Taylor needed data on the numbers and needs of quadriplegics. She was startled to find such information lacking, but she made it a project to research it herself, “so we will have an idea of what the needs are in this country.”

For such work as seeking grants, ferreting out statistics and developing a system for disbursing the money to the needy, Taylor pays herself a $300-a-month salary, which helps meet her families’ needs.

Beyond providing short-term assistance to people like herself, Taylor has set her sights on finding a permanent solution to the paraplegics’ plight.

“The main thing we want to do,” she said, “is produce additional support to paralyzed people, especially quadriplegics.”

Her voice is husky from the tracheotomy, a hole in her windpipe required by the accident, which she conceals with an ornamental black velvet ribbon.

She activates her motorized wheelchair by moving her head in a chin brace.

Her specially trained dog, a black Labrador retriever named Wizard, opens doors by pulling a strap attached to the door knob.

Technology has enabled Taylor to communicate with the outside world. From a tiny office in her house, she operates a computer, punching the keys with a stick held between her teeth, and talks on a specially adapted telephone activated by her voice.

Now 43 and still striking, with finely chiseled features, wavy dark hair and bright blue eyes that occasionally look pained, Taylor has accepted her fate.

“I am not glad it happened, but I would not regret having gone through it,” Taylor said.

“I’ve lost a lot, but it did change me. You don’t have any slack to deal with this. I just tried my very hardest to get through it in all ways.”