It all happened so fast. On Monday she discovered a lump in her breast. On Tuesday she had a mammogram, on Wednesday a biopsy, and the next day she was diagnosed with breast cancer. And just like that, life took a big, scary detour for Missi Ivie. As a 31-year-old vegetarian and avid runner, this kind of thing wasn’t supposed to happen to people like Ivie. But it did, and now she had to deal with it. “At first all I felt was pure terror,” Ivie says. “But that didn’t last long. I just said let’s figure out a game plan and turn this thing around.”
Ivie had a mastectomy, followed by chemotherapy and radiation treatments, followed by more surgeries. She lost all her hair, and felt chronically sick and fatigued, but she kept fighting. As part of her fight, she and boyfriend Bob Graham — both longtime supporters of the local music scene who met at Merlefest in 1998 — started the Spread Your Wings organization, including a benefit concert by local bands, to help raise awareness and funds for breast cancer research. The organization is hosting its third annual benefit concert this Saturday, September 13, at the Neighborhood Theatre, with proceeds going to the Susan G. Komen Breast Cancer Foundation.
It’s been a little over three years since Ivie was diagnosed, and while she’s gone through many changes and faced more than her share of hurdles, she says she’s never felt better. “I’ve come out of this experience both emotionally and spiritually better than I was before,” she says. “I know it sounds crazy, but I’m glad that it happened to me.”
But in addition to learning some valuable lessons and having a new outlook on life, Ivie and Graham both say that going through this together gave them an up-close look at the fickle nature of the media and the public’s attention span.
“For the first year, in 2001, Ivie and the benefit received all kinds of media coverage,” Graham says. “We were in local newspapers and magazines, and even in a couple of national publications. We received donations from as far away as England and Amsterdam. Last year, we couldn’t get arrested.”
Ivie and Graham, unfortunately, had received a crash course in “cause fatigue,” a common occurrence in which both the public and the media seize upon a particular cause or movement, but then interest fades or simply shifts elsewhere. Suddenly, the same cause that made front page news, rallied the public and raised big bucks now elicits a big yawn and a “been there, done that” sigh.
Local musician and author Lauren Bower (of the musical group Lauren & Friends) has also seen first-hand the capricious nature of the public and media. She was just 34 when she was diagnosed with breast cancer in 2000. Over the years she has been an activist for breast cancer awareness, and last year received the 2002 Visions of Hope Award for her advocacy efforts. Bower has also written a book about her experiences with breast cancer titled Don’t Let The Cat Get Your Wig… and Other Things the Oncologist Never Told You.
During all this, Bower says she’s had to deal with many instances of cause fatigue — including the fact that she couldn’t get any local coverage of her 2002 award ceremony.
“I’ve certainly experienced that type of fickle attention, particularly in reference to younger women and breast cancer,” Bower says. “Someone will sensationalize a story, scare everyone to death and then the message dies out and gets forgotten. Also, because so much money gets thrown at the problem, people think it’s getting solved. Unfortunately, women like myself have recurrences and the statistics lie to the public. What some people tout as a cure is really remission and in two to three years the cancer comes back and we still lose our loved ones. But the charities tout those numbers to justify the funds that come their way.
“Even though the message [about breast cancer] was being blasted from every rooftop, I missed it,” Bower continues. “And when it hit me at 34 I was shocked. So despite all of these issues of “cause fatigue,” I keep screaming it out because I believe it will help others to be better prepared than I was.”
One of the more alarming examples of “cause fatigue” is media and public response to the AIDS epidemic. If you were around in the 1980s, you know that the media — and public consciousness — were inundated with information about AIDS and HIV. Today, as AIDS has become, for many people, just another dreadful thing to be aware of in modern life, most folks are unaware that the number of new AIDS cases in the United States has begun to rise again for the first time in 10 years. According to a recent study by the Centers of Disease Control (CDC), the number of Americans diagnosed with AIDS increased 2.2 percent in 2002, the first increase since 1993.
CDC spokespersons say the rise in new AIDS cases could mark a disturbing turning point in the nation’s epidemic, which had appeared to be stabilizing because of decades of intensive safe-sex campaigns and the introduction of powerful antiviral drugs. In addition, there have been disturbing indications in the last few years, experts say, that risky sexual behavior has been increasing among gay men, particularly younger ones, causing the number of new HIV infections to rise.
While it’s hard to know the exact cause(s) of this alarming new resurgence, some experts say one of the major contributing factors is probably cause fatigue — people are simply tired of hearing about AIDS.
“Twenty years into the HIV epidemic, many people who adopted safer sex practices in response to the initial health crisis are finding it difficult to maintain these practices over the course of a lifetime,” says CDC spokesperson Karlie Stanton. “After years of exposure to prevention messages and long-term efforts to maintain safer sex practices, we’re starting to see “prevention burnout’ or “AIDS burnout.’ This may be one reason for the diminished sense of urgency to adopt safer behaviors and the apparent return to riskier sexual practices that were given up earlier in the epidemic.”
When something as serious as an AIDS prevention campaign fails to garner attention, it’s not because the media failed to report the “important” issues. In fact it’s usually a case of the media inundating people with such stories that leads to a cause losing momentum and fading away. Remember Save the Rainforests? We Are The World? All worthy causes, but eventually people just grow bored and move on to other things. Call it compassion burnout, if you will.
Ward Matthews, executive director of the Salvation Army — which has supplied food, shelter and other social services to the needy for the past 138 years — says the way they combat cause fatigue is by personalizing their message.
“We share the personal success stories we see everyday,” says Matthews. “It’s important to put a face with the little girl going to school, or to the parent who earned her GED and is now going to nursing school. So you try to get your message across anecdotally. I don’t care what the statistics are, you reach and educate people through stories.”
Linda Castleberry, director of marketing and development for Community Link, which also assists the homeless and poor, says they’ve been particularly hard hit by cause fatigue this year. “We’ve always been very blessed and have had funding throughout the year, but this year is the first it has declined a bit. But it’s not just for Community Link, it’s all the agencies.
“There are a lot more agencies than there have ever been,” she continued. “More corporations and foundations want to help agencies that don’t duplicate services.”
Indeed, there are hundreds if not thousands of causes in Charlotte alone competing for space and attention, as well as your time and money, every one of which is convinced it’s the most important and newsworthy. Graham says that during one phone call with a local newspaper reporter in which he was trying to promote the upcoming Spread Your Wings concert, he was told that the “other diseases” had been complaining that breast cancer gets too much coverage. Bizarre, yes, but undoubtedly true.
So while there’s certainly no shortage of need out there, if you’re in an altruistic mood or just feel like catching some cool bands, you could do worse than this weekend’s Spread Your Wings benefit concert. It’s certainly a worthy cause — breast cancer accounts for 30 percent of new cancer cases in women, affects one in eight women and is the leading cause of cancer for women aged 40-59.
“We want to not only raise money and awareness about breast cancer, but also give back to the artists and musicians who’ve donated their time and effort,” Graham says. “It’s ultimately about fellowship and celebrating life.”
The Spread Your Wings benefit concert is September 13, 2003, at the Neighborhood Theatre. For more information, or to contact Graham and Ivie, go to: www.spreadyourwingsmusic.org.
This article appears in Sep 10-16, 2003.
