Vivian Connell sits in a motorized wheelchair beside a sun-warmed picnic table.
She does most of the talking, barely pausing between sentences as she pivots between recent class-action lawsuits against a manufacturer of faulty guardrails and the use of synecdoche in the 10,000 Maniacs song "My Mother the War." It's as if she's trying to get out as many thoughts as possible while she still has time.
"You hear my voice?" she says after a sip of tea. "It's started—my breathing and speech. You've seen me struggle with my words a couple times?"
Just more than a year ago, Connell, a 51-year-old school teacher-turned-lawyer, learned she had amyotrophic lateral sclerosis, or ALS, a degenerative nervous system disease that gradually weakens its victims. (ALS is also often referred to as Lou Gehrig's disease.) Connell's doctors told her she could expect to live two years, maybe three. Since the diagnosis, she has decided ALS will neither silence her nor change her priorities, which have continued to reflect her need to help others while helping herself.
Days after announcing her prognosis, for instance, she turned her attention to financing and organizing an against-all-odds school trip to the Holocaust Memorial Museum in Washington, D.C. In Chapel Hill this weekend, she will harness the popularity of R.E.M.—a band she embraced and documented while in college and that helped change the way she sees the world—to raise money for a public-interest law firm.
"She learns about this terrible adversity," says Paul Bland. He is the executive director of Public Justice, the Washington-based consumer-protection law firm that will receive the night's proceeds. "And it seems like she has sat down and thought through in a very conscious, mindful way: How can I make the very best of this, not only for herself but for other people?"
Connell says she has no choice.
"We all have a shelf life. My expiration date just got stamped on pretty clearly," she explains. "I've tried to be responsible with that knowledge and see it as a gift, an opportunity to do as much with my time as I can. This is what I have to do, and nothing but good has come of it. No good could have come of falling apart."
Until sixth grade, Connell moved all over the South with her family, landing as far east as Roanoke Rapids, North Carolina, and as far west as Crystal Springs, Mississippi. They finally settled in Greenville, South Carolina, where her father managed textile plants.
Her arrival at the University of Georgia in Athens in 1982 as a first-generation student represented both a proud accomplishment and a game changer. The city's burgeoning art-and-rock counterculture erased the expectation that she would earn an arbitrary degree, marry and be a slave to a mortgage.
"It completely opened my eyes to alternative ideas of success," she says, "and I saw that happen to a lot of people."
Connell's awakening had a soundtrack, fueled by the Replacements, XTC and, most emphatically, by hometown stars R.E.M.
"Their music, without ever being preachy, painted pictures. It asked you to avert your gaze from the mainstream, from the status quo, to some beauty or some concern or some hurt," she remembers. "And when you looked in that direction, the feeling of inspiration motivated you to care more about those things."
In the mid-'80s, while in college, Connell worked as a waitress with Katherine Judkins, who went on to marry Bertis Downs, R.E.M.'s longtime legal adviser. Years after college, Connell was considering moving her family from Charlotte so she could stop teaching and begin studying at UNC's law school. She and Downs reconnected over her legal interests and bonded more over education policy, which had become a passion for Downs.
Last November, Downs was organizing a screening of the new documentary R.E.M. by MTV in Athens for an audience of family members and close friends. He has been involved with R.E.M. since the band's infancy and now oversees its extensive legacy.
"I immediately thought of Vi," he says of the guest list. But she couldn't attend. "I said, 'We'll just do it in Chapel Hill.' Let's come up with an event. You pick the charity. We'll put it together."
The event will begin with PopUp Chorus, the Durham-based open choir that has become a viral hit since it began a year ago. As many as 300 singers will vocalize two iconic R.E.M. songs: the quietly triumphal "Man on the Moon" and the bittersweet "Losing My Religion." The usual setup of drums, bass and guitar will have one special addition: Vivian's 15-year-old son, Hagan, on acoustic guitar. After the performance, the lights will go down for a screening of R.E.M. By MTV, a film that chronicles the band's history with an exhaustive trove of MTV interviews, TV appearances and concert footage.
Connell didn't hesitate when choosing the charity. It wasn't ALS or, in spite of her teaching background, any of the local education-advocacy groups with which she has worked. Instead, she chose Public Justice, a public-interest nonprofit she discovered while in law school. Her interest in its work stemmed, in part, from lessons learned from her 30-year-old relationship with R.E.M.'s music.
"Even in the early '80s, R.E.M. wanted to move the law," she says. "I ended up in law school because I wanted to move the law. But I end up with ALS, and now I get this benefit with their film to benefit a public-interest law foundation, one that focuses on environmental protection, civil rights issues and defense of the powerless, for which R.E.M. always advocated."
Bland, Public Justice's director and a renowned consumer attorney, first met Connell because of her interest in those issues and a related vein of law—broadly, the fine-print contracts that affect everything from cellphone contracts to bank cards, wherein consumers sign away their right to dispute a claim. He was struck by the second-year law student's sophisticated grasp of an area that had taken him years to master.
"If you are alert as a teacher in North Carolina and you're seeing what one or two people with an enormous amount of money can do, you see it affecting people you've worked with, taught and cared about through your whole career," says Bland. "I was really drawn to and impressed by her level of appropriate outrage."
When ALS struck, Connell was at last transitioning from her past as a teacher into an attorney capable of harnessing that outrage.
"One of the things she was positioning herself to do through her law degree was for part of her career to be in what I think of as an impact job," says Bland. "Instead of trying to dramatically affect the life of an individual person, you can affect the lives of large numbers of people. Having gone through law school, done well and asked the big questions, it's deeply sad her career is not going to give her that chance."
Still, neither the sadness of the situation nor her failing neurons seem capable of sapping Connell's resolve. She's just finding alternate avenues to leave her impact.
"I've been empowered to do some good for things in which I believe; who could ask for more?" she says not long after she suggests her voice is faltering. "I don't think there's a better way to die. Gratitude is a lot more productive than self-pity."
This article appeared in print with the headline "How to live it."