Living with pain

Los Angeles Daily News—July 10, 2009

Today is a good day for Alida Brill: She isn't in pain. Her body isn't covered in rashes. And she's not so tired she has to spend the day in bed.

Tomorrow, on the other hand, may be another story.

"Think of the worst toothache you've ever had in your life, then think of your entire body reverberating with that pain everywhere," said Brill, 60, a Lakewood native who has battled chronic autoimmune disease since she was 12. "It's all these things at once."

Over the years, Brill has tried various medications and forms of treatment - gold shots, Indocin, Prednisone, immunosuppressants, anti-cancer drugs, antibiotics, infusion treatments, meditation. But the illness remains.

And so she writes.

"Yes, it is very hard to write when I am unwell because it often bothers my hands or the pain is just raging through me," said Brill, a longtime social activist who recently published her fourth book, "Dancing at the River's Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness" (Schaffner Press).

In the book, Brill chronicles her 30-year relationship with her physician, Dr. Michael Lockshin, of Hospital for Special Surgery in New York.

"At the end of the day, the writing is what enables me to say, 'Yeah, I'm ready to keep trying this. I'm ready to keep going forward,'" she said.

The book doesn't just tell Brill's story; it tells her doctor's, too. Co-written by the New York rheumatologist, the chapters alternate between his and her points of view.

It's an approach that reveals both sides of a disease: the day-to-day struggles of the patient and the concerns and conflicts of her doctor.

"I thought other people who are chronically ill needed to see a different model than they may be experiencing in doctor-patient conversation," said Brill, who now lives in the Los Feliz district of Los Angeles. "I have the most extraordinary doctor."

Brill was almost 30 when, after being shuffled from doctor to doctor, prescription to prescription in search of answers, she met Lockshin.

From their first meeting, she said, she noticed something different about him. Namely, he listened to her. He wanted to understand.

"There was trust," she said. "We can negotiate. We can talk."