By Claire Panosian Dunavan
Special to The Washington Post
Tuesday, July 8, 2008
When my friend Nikki Tal died in 2004, the world lost a strong, brave soul -- despite a thuggish disease that had by then utterly ravaged her body.
From her earliest years, Nikki had been a reader. She also loved the ocean. Her favorite book was "Life of Pi," about a shipwrecked boy trapped on a raft with a hungry predator. The parallels with her own life weren't hard to see.
Nikki's predator was amyotrophic lateral sclerosis, better known as ALS, or Lou Gehrig's disease. As any doctor will tell you, for patients with neurologic blights, ALS is about as bad as it gets. In less than a year, it can extinguish an entire set of motor neurons, rendering its victims limp and powerless.
It was October 1996 when Nikki first learned something was wrong. While attending a baby shower, the 5-foot-8 lawyer realized she couldn't lift a 10-pound newborn.
Later that month, she destroyed her car's ignition after repeatedly mis-inserting her key; then she begged off timing duty at her daughter's swim meets because she could no longer depress a stopwatch.
A few months later came the inability to walk or care for herself; the big, padded wheelchair and the handicap van; and, eventually, the feeding tube and the portable ventilator. Finally, ALS robbed Nikki of the ability to hold her head erect and of producing even remotely intelligible speech.
During her final years, my friend communicated solely via computer. One by one, the laser-equipped laptop translated Nikki's flickering eye movements (her last remaining motor faculty) into letters on a screen.
None of those indignities kept Nikki from savoring life and weighing her choices as ALS battered her body but not her fine mind. When first diagnosed, she had strong reasons to live: her husband, Ron, and their two kids, extended family and friends. Although ALS forced her to shutter her legal practice, she avidly followed Ron's work as a city attorney and every facet of their children's lives. She also attended movies and plays, planned meals, oversaw house repairs and even wrote reviews for her longtime book club, a loving circle of friends deeply committed to her.
My friendship with Nikki dated to a time when we attended the same high school in a rustic glen called Hope Ranch. Our lives intertwined again after I married my husband, Patrick. Four years into her ordeal, Nikki's deeply compassionate nature was never more evident than when Patrick's only son and granddaughter died in an SUV rollover.
Soon after the accident, Patrick and I attended Nikki's 50th birthday party on a bluff overlooking the sea. I can still see my friend in her recumbent wheelchair staring blankly at the sky. Then she caught sight of Patrick's face looking down at hers, and her blue-gray eyes transformed. "And how are you, dear man?" I could almost hear them ask. Dozens of e-mails and visits later, she continued to ask the same question.
Toward the end of Nikki's journey, I assumed a new role: doctor-confidante. I always knew my friend would someday shed her lifeline. But, as the moment approached, it wasn't easy for her to discuss the when, where and how with her family. Nikki also wanted to shield Ron from any responsibility for disconnecting her ventilator. Nonetheless, time was nipping at her heels; before long, ALS would steal her last trace of autonomy.
Nikki's toughest challenge was finding the right medical partner. In spring 2004, one local doctor told the slumped-over woman in the wheelchair that she would "have to go to Oregon" if she wanted to discontinue life support.
He obviously didn't know Nikki.
And so, three months later -- after her daughter graduated from college and her son finished high school -- Nicolette Tal chose Aug. 31 as the date of her memorial service. Then, in true Nikki fashion, she masterminded every detail of the celebration of her life, from the masses of sunflowers in the sunlit amphitheater to the sequence of speakers to her favorite song and hymn ("Turn, Turn, Turn" and "Amazing Grace").
Afterward, craving some final communion with my friend, I spoke with the doctor who had cared for Nikki at the end. One day before the memorial service, the doctor told me, after her family and caregivers had shared as many farewells as the afternoon could hold, Nikki, resting in a lovely spot she had chosen on a patio, gave the signal that she was ready. She then received an intravenous sedative. When she was comfortable, her ventilator was turned off.
Twenty minutes later, too weak to struggle even reflexively, Nicolette Tal was gone -- both defeated by her longtime foe and supremely victorious.
Claire Panosian Dunavan is a professor of medicine and infectious diseases in the David Geffen School of Medicine at UCLA. Comments:firstname.lastname@example.org.