Closing statements
Her voice is almost gone and her days numbered, but an attorney battling Lou Gehrig’s disease still has something to say.
By Andrew Z. Galarneau
Updated: 08/07/07 7:10 AM


Photos by Robert Kirkham/Buffalo News
A vocal community activist and self-proclaimed “character,” Robbie Billingsley promises that she won’t let ALS have the last word.

Robbie Billingsley says she comes from “a family of talkers,” and it’s easy to believe when you meet her. In 40 years as a Buffalo community activist and attorney, her forceful personality, amiable demeanor and verbal adeptness became her trademarks. In the courtroom, or on the steps of City Hall, she’s devoted to helping people in need, whether representing them in court for free or challenging the Buffalo assessor to tax homes in her East Side neighborhood fairly.

“She’s one of the last of a disappearing breed – of attorneys who weren’t afraid to voice a plea even though she understood the chances of success were slim, sometimes nonexistent,” said City Court Judge Michael L. Broderick. “Generally, it’s for somebody paying no money at all.”

Once likely to be the loudest voice in the room, Billingsley now counts the days before her speech leaves altogether. In September 2005, she was diagnosed with ALS – amyotrophic lateral sclerosis, or Lou Gehrig’s disease — a progressive, inevitably fatal condition. It has left the 61-year-old unable to walk or feed herself, and now the illness is reaching for her speech muscles.

Before its fist tightens, Robbie Billingsley, Esq., would like to make her closing statement.

How would she describe herself today?

“A hell-raiser, an attorney, a wonderful character,” Billingsley says in her high-pitched voice — slurred now — as she flashes her ready smile. “And now I’m sort of helpless, but still cheerful.”

Her diagnosis has not kept her from the mission she loves. Riding a motorized scooter, she steers her way to the Amherst Metro Rail Station to make her way downtown to court. She usually asks a stranger to take money out of her purse and buy her ticket.

With a death sentence over her head, why still go to court?

“To be honest, it’s an ego thing,” she says. “When I go to court, everybody says, ‘Robbie, Robbie, Robbie.’ I feel loved. You don’t want to feel forgotten.”

Billingsley pushes her glasses back up her nose with the back of her hand. “At this point, when I’m dying, I need attention. I always sort of got attention by accident before.”

She is honorary chairwoman of the 2007 Walk to D’Feet ALS, to be held at 11 a.m. Saturday in Delaware Park.

‘Commie Cook’

By design or by fate, her life has been lived in spotlights.

Born in Detroit on Oct. 7, 1945, Roberta Lee Cook grew up on a farm outside Ithaca, “a community in which being a Democrat was considered subversive,” she says.

The children won lots of academic awards in school, so the family probably would have attracted attention in town, anyway. When her father, George, a Communist Party organizer, was arrested for handing out fliers, that clinched it.

“They called me ‘Commie Cook,’ ” she says with a laugh. “Of course, I had a chip on my shoulder — I was always getting into fights.”

Her brother thought she might like Buffalo. She became a founding member of the Western New York Peace Center in 1967 and moved to Buffalo in 1970, working for UB at E.J. Meyer Memorial Hospital.

Katie was born in 1971; Josh in 1974. Her husband left, leaving her with two small children and a surname: Billingsley.

After all the demonstrations she had attended over nearly 20 years, in 1983 she was happy to push a wheelbarrow full of assessment challenges into Erie County Hall in front of waiting news cameras. The tactic worked. She made the front page of The Buffalo News, drawing attention to her work with Citizens Alliance, a neighborhood advocacy group protesting unfairly high taxes on devalued homes.

The next year, her 13-yearold daughter, Katie, died of myasthenia gravis, an autoimmune neuromuscular disease.

As happened so many times in her life, something bad produced something good: “I became a lawyer because my daughter died,” she says.

Billingsley’s mother had died in 1983 after living with ALS for years. After Katie’s death in 1984, she was considering suicide, she says. But she couldn’t do that to her son, Josh, and she decided to go to law school instead. After taking college classes since 1964 without getting a single degree, Billingsley would get her J.D. from the UB School of Law.

Admitted to the bar in 1989, despite a civil disobedience arrest in 1986, Billingsley ended up taking assigned cases in family law and criminal court.

One day in City Court, she was waiting for her case when she saw a developmentally disabled man charged with stealing a T-shirt. The judge directed him to get a lawyer, since he earned too much to have one appointed for him.

Billingsley followed him into the hallway. She took his paperwork upstairs to a prosecutor, who agreed the man would get the standard punishment for first-time shoplifting: an adjournment in contemplation of dismissal, the charge dropped if he stayed out of trouble.

The courtroom clerk called the case again, and the man was done. “Go and sin no more,” Billingsley said. “Now that I was proud of.”

Billingsley took so many cases for free that fellow attorneys, and even judges, would urge her to make a living, too, Broderick said. “Some of us occasionally told her, ‘Don’t spend your time exclusively on hopeless cases, or people who can’t pay, because there are public defenders available.’ Then we’d get a lecture. She wasn’t afraid.”

It’s what she was taught from childhood, she says: There’s no higher calling than helping others. “I love to tell people, ‘This is what our Communist parents taught us: If the world isn’t better for you having lived, what’s the point?’ ”

Joshua Cooke, her son, says that his uncles once worried that he would be emasculated, growing up with such a strong woman as his only parent.

“But I don’t think they understood,” says Cooke, who works for United Healthcare. “She’s actually empowering. She’s bold, and that makes people around her bold.”

Shrinking world

In the cluttered living room of her Victoria Avenue house, Billingsley sits in a recliner with her cell phone in her lap. At the foot of the chair is Lad, her border collie, who protectively thrusts his snout between her and the stranger nearby.

Around her neck is a flat matchbook-size charm with a button. It’s the emergency signal, in case she falls. Since her fingers are too weak to push the button, she would have to bite it to get help.

As with other new facts of life in her shrinking world, Billingsley discusses her coming death without squeamishness.

Her son will marry his longtime girlfriend, Anna, on Sept. 1, and she hopes to see the day. “I want to hang on for that, but I also want to hang on for longer, because if I’m dead right after that, it’ll sort of spoil it,” she says. “I might make it to Christmas.”

When she was diagnosed, she thought she had time, because she weakened slowly.

“There were lots of things I wanted to do, but I’ve let them go,” she says. “I wanted to write a book, but I can’t write anymore. I thought I’d do it by talking, but I’m losing my speech. I wanted to do gardens, planting gardens everywhere, but now everybody else has to help me with it, and nobody else is as dedicated to it as I am.”

The disease is now moving faster than she anticipated. Now the woman who helped others is discomfited by how much others must help her.

There are about 100 people in Western New York diagnosed with ALS, as Billingsley is, said Dr. Tomas Holmlund of the Dent Neurological Institute. “A hundred people means a hundred families — we’re really talking about thousands of people involved,” Holmlund says.

The disease can appear as early as age 30 but usually afflicts older people. Besides one drug that might slightly slow the disease’s advance in some cases, there is nothing modern medicine can do, Holmlund said. Nothing, that is, except help the patient and the family make some difficult choices.

“As a group, ALS patients are a unique population,” Holmlund says. “They are the kindest people. They enjoy life. This is one of the reasons you can survive.”

Final pleasures

For many, one of the most awful losses is their voice, Holmlund says. “You lose the ability to communicate while your brain and mind is clear.”

Billingsley’s voice, so often raised in protest of the actions of the U.S. government or a prosecutor, is harder to hear now. But she won’t let the disease have the final word.

A few months ago, she spent hours pronouncing words and parts of words into a digital recorder. With the assistance of a computer, she’ll be able to manipulate a controller to assemble sentences, and the synthesizer will “talk” — in her voice.

“I’ve always hated my voice,” she says. “I always sounded whiny. But now I’m thinking, ‘It’s me. I don’t want to lose me.’ ”

She’s tired now, and she sleeps more than she once did. “In my dreams, I’m walking,” she says. “Though I’m aware I have ALS, and I say to myself, ‘Isn’t it wonderful not to have to use the wheelchair anymore?’ ”

During an early July visit, she’s asked about pleasures she might be enjoying a final time.

“I used to eat cherries by the bushel,” she says. “But it’s so hard for me now to eat even one, because I have to get the pit out. It’s a great hardship. I’m waiting for the blueberries to come in. ’Cause I can eat them by the handful.”

agalarneau@buffnews.com
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