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Neurology Now:
doi: 10.1097/01.NNN.0000359083.34572.ce
Feature: Victoria Williams

Bittersweet Symphony: With gratitude and hope, acclaimed singer‐songwriter and MS sufferer Victoria Williams faces the music.

GORA, SUSANNAH

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Lou Reed once said, “Listening to her sing is a demonstration of majestic power.” Lucinda Williams has called her a genius. The Los Angeles Times described her as a “musicians' cult figure.” You may never have heard of singer-songwriter Victoria Williams, but chances are you've heard the echoes of her rich artistic influence across a wide spectrum of musical genres, since many of today's most legendary musicians cite her as an inspiration. Neil Young was so impressed with Williams' unique style (which Rolling Stone described as “Cajun-seasoned country rock”) that he asked her to open for him on a nationwide tour in 1992—even though he hadn't met her.

The invitation was a dream come true for Williams, who'd long admired Neil Young's work. But one night on tour, the dream became something of a nightmare. “I was up onstage,” remembers Williams, “and my hand wouldn't play.” Ever the professional, Williams finished her performance by singing a capella. Soon afterwards, she went to a doctor to ask about the strange incident with her hand. She'd also had occasional difficulty walking, tingling in her extremities, and feelings of electric shock when she moved her head a certain way.

Williams was eventually diagnosed with multiple sclerosis (MS), an autoimmune disease that causes “a recurrent inflammation of the central nervous system, which includes the brain and spinal cord,” according to Allen Bowling, M.D., Ph.D. (neurologycare.net), medical director of the Multiple Sclerosis Service and director of the Complementary and Alternative Medicine Service at the Colorado Neurological Institute, and clinical associate professor of neurology at the University of Colorado-Denver and Health Sciences Center. Dr. Bowling estimates that there are between 350,000 and 400,000 people in the United States suffering from MS, which affects twice as many women as it does men. As he explains in his book Complementary and Alternative Medicine and Multiple Sclerosis (2nd edition, Demos, 2007), symptoms of MS can include “visual blurring and weakness, fatigue, depression, urinary difficulties, walking unsteadiness, stiffness in the arms or legs, tingling, and numbness.”

The MS diagnosis was particularly devastating news for Williams because, like so many musicians, she didn't have health insurance. “I had to go to a lot of different hospitals,” remembers Williams, who is now 51, “and I had to get lots of tests. I had a huge hospital bill.” To help Williams in her time of need, a group of her musician friends got together and recorded Sweet Relief, the criticallyrevered 1993 benefit album on which artists including Pearl Jam, Lou Reed, Lucinda Williams, and Soul Asylum recorded covers of Williams' songs. The album, named after a tune by Williams, was a great commercial success, and it did provide some much-needed relief by paying for her medical bills. She was deeply touched by the effort and felt inspired to give back. “I said, ‘I want to start a benefit to help other musicians who get sick,’” Williams recalls. The result was the Sweet Relief Musicians Fund, which aims to assist professional musicians in financial need suffering from health problems.

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MUSICAL YOUTH

Music has been an essential part of Williams' life for as long as she can remember. “I just think music was in me,” she says. “I was always singing.” Growing up in Shreveport, Louisiana, she sang in her church's choir, and started writing songs at a young age. She loved all kinds of music—gospel, country, blues, and folk in particular. Even then, her songwriting drew heavily on stories of the South and its inhabitants; it's an area she believes makes for fertile musical ground. “I think it's the tempo of life down there,” Williams suggests, “and there are a lot of interesting characters about—a lot of eccentrics in the South.”

Williams moved to California in the 1980s, where she frequently performed in Venice Beach, and was discovered by the friend of an influential songwriter named Van Dyke Parks. He became a mentor to her and connected Williams to other musicians. Still, the early days of her career were relatively challenging. In the days before 1997's women-centered music festival Lilith Fair, Williams says, there weren't as many opportunities for women in alternative music as there are today. “Since Lilith, there have been so many more women artists getting worldwide attention, which is just wonderful,” she says. “But when I was starting out it was rough. I remember I had a development deal with [music label] EMI, and I made a tape and turned it in. They said, ‘Well we already have [unconventional singer-songwriter] Kate Bush, and that's enough.’ I was nothing like Kate Bush! But that's how it was back then.”

Williams' first record, Happy Come Home, was released in 1987 and was followed by Swing The Statue in 1990. In 1993, the Sweet Relief album brought her a great deal of attention. That same year Williams tried out her acting chops, appearing in the screen adaptation of Tom Robbins' book Even Cowgirls Get The Blues, directed by Gus Van Sant and starring Uma Thurman and Keanu Reeves. Williams was a fan of the book, having first read it in high school.

In 1994, Williams released the introspective album Loose, followed by 1998's Musings of a Creek Dipper, 2000's Water To Drink, and 2002's Sings Some Ol' Songs, on which she brings her unique flavor to standards like “Someone to Watch Over Me” and “My Funny Valentine.” All of her albums have been acclaimed by critics, and along the way, Williams has toured with many celebrated musicians, including Randy Newman.

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THE SEARCH FOR TREATMENT

Her MS is of the relapsing and remitting variety. “It comes and goes,” she says. “But my feet are always numb, and my hands are often numb.” When she's playing the guitar, says Williams, “I always look and see if my fingers are playing the chords right. I'll think, ‘Am I playing the chords? Because I can't feel that I am.’ And sometimes I feel like my hands are so weak that I couldn't be playing the chords.” Dr. Bowling says that these kind of symptoms can be common with MS, and explains how something as physically demanding as going on tour could have a detrimental effect on them: “There definitely is a sub-group of people with MS for whom high levels of stress, fatigue, and lack of sleep bring out chronic symptoms. Some people with MS are prone to gait instability [imbalance while walking], fatigue, or tingling that comes and goes daily, and high levels of stress or fatigue worsen the severity of the chronic symptoms.”

Williams is extremely fond of her neurologist, Jeffrey Bronstein, M.D., a professor of neurology at the David Geffen School of Medicine at UCLA. (“I love him,” she says enthusiastically.) Dr. Bronstein put Williams on the MS drug glatiramer acetate (Copaxone) in the early 1990s, to great success. “She went from three or four exacerbations a year to zero—maybe a small one every three or four years,” Dr. Bronstein says. “She's been able to maintain a high level of function, I think, because of it.”

“The only problem,” Williams says softly, “is that it cost a lot,” like all MS drugs. As a result, she has at times tried to alleviate her symptoms using alternative treatments instead. She once even owned a beehive. “I would get the bees and sting myself,” Williams says. Some people believe that apitherapy, or bee venom therapy, can help MS sufferers. Williams is also a proponent of acupuncture. “If you have a good acupuncturist who knows what they're doing, it really does help,” she says. At one point, the singer had been confined to a wheelchair but was able to walk again after she received electrical stimulation of her muscles. “I kind of looked like Frankenstein!” Williams laughs. “But it really helped me walk.”

However, there is little or no evidence to support the medical benefits of many of these alternative treatments, some of which might even be harmful. “Non-traditional [treatments] that are not regulated can be dangerous,” explains Dr. Bronstein. “My stance with [Williams] has been that these alternative therapies have not been proven to be effective or safe, and so I don't recommend them. The ones that seem safe I have no problems with her doing, as long as they are not instead of things that we know work,” such as glatiramer acetate.

Currently, Williams isn't taking any medication for MS. “I can tell a difference now that I am not taking it—I'm feeling a little loopy,” she admits. And there are some real risks that arise from not taking MS medication. “Being on these drugs reduces her chances of being permanently disabled and in a wheelchair,” Dr. Bronstein explains, “so she's at a higher risk of being more disabled. We are trying hard to get her back on therapy.” Sweet Relief, the organization that Williams helped create to aid musicians in need, is not able to help her at this moment. “They are fundraising right now,” Williams explains. “Maybe they'll have enough money after a while.” Dr. Bronstein believes Williams' situation is “a great plug for having a national health program: We have a clear therapy that definitely improves long-term outcomes; we have somebody who wants to keep working, but because of the way our insurance works, she is unable to afford the therapy.”

Dr. Bowling offers some advice for Williams and others in a similar situation: “There are some complementary therapies that are worth considering for MS, ideally in conjunction with standard treatments. They include dietary strategies, where you cut back saturated fat, increase polyunsaturated fat, and consider vitamin D-based approaches. Also, exercise may help with multiple symptoms of MS, and not smoking.” Dr. Bowling also recommends “relaxation methods, basic meditation practices—those are free and may be quite helpful if someone has got high levels of stress, and could also be helpful for depression, pain, and insomnia.”

Williams recalled a recent tour in which the more music she performed, the better she felt physically. “Music is such a healing thing,” she says. She may be on to something: Dr. Bowling says music is “one of the more promising approaches to MS. Moving to music, creating it, singing it, just listening to it— activates all of these different brain regions.”

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SHELTER IN THE DESERT

Williams has been busy in the recording studio, working with Scottish music producer Isobel Campbell (formerly of Belle and Sebastian) and also with the Arizona-based rock band Calexico. She says she has written songs about MS but hasn't released any—yet.

Williams' music is available through her website,victoriawilliams.net(be sure to check out her whimsical paintings there) and on iTunes. She is also tremendously excited about her upcoming tour throughout Australia and New Zealand with musician Vic Chesnutt. “He's great,” says Williams of Chesnutt, who is paraplegic. (Williams, a true believer in musicians helping each other, was one of the main proponents of the tribute album Sweet Relief II to benefit Chesnutt in 1996. It featured the likes of Madonna, R.E.M., Hootie and The Blowfish, and Williams herself, performing Chesnutt covers.) She is hopeful that her MS won't hinder her abilities on tour too greatly: “God willing, I will be ok.”

She doesn't use the expression “God willing” casually—Williams' belief in the divine has been a guiding force in her life and her art. “It is a gift when songs come,” she reveals. “It's a spiritual thing.” Williams tends to look on the bright side, often crafting songs that reflect her upbeat, grateful attitude towards life—even in the face of MS. “I just feel so blessed,” she says, earnestly. “God has been so good to me.” Says Bronstein of Williams, “She's got a wonderful, positive approach to life. She doesn't focus on what she can't do, but on what she can.” Williams even sees a bright side to having MS: “I think it has increased my capacity for feeling empathy with people who are having a rough time.”

Williams lives in the tranquil desert of Joshua Tree, CA. It is a place of exquisite natural beauty, where the smallest things can inspire moments of reflection as well as great music. Williams recently wrote a song about a bird who is “always building its nest in the wrong place,” only to have the wind tear it down. “It was about a real bird,” Williams explains, tenderly. In some ways, the song could have been about Williams herself: Life throws her challenges, but she perseveres. “I'd see her,” says Williams of the little bird, “and the wind would keep blowing the nest down. And she'd keep on building it.”

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©2009 American Academy of Neurology

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