By Dayna Dunteman
Posted on October 12, 2006
Photo by Beth Baugher
“I was Bigfoot’s love slave. Now I’m pregnant with his baby!” trumpets a framed tabloid headline on the wall in Jackie Schultz’s home office. Next to the headline is a feminine figure with a grotesquely bulging midriff, atop which Schultz’s superimposed head teeters like a cherry on a colossal sundae.
At the sight of this picture, memories of Six Women With Brain Death (or Expiring Minds Want To Know), the longest-running theater production in Sacramento history, come flooding back, and not without a few diaphragm-cramping cackles. For eight years, between 1996 and 2004, Mark Houston’s rollicking satire on contemporary society from a female viewpoint gave local audiences (mostly women) permission to “laugh, scream and blow off steam” in response to tabloid-inspired musical sketches poking fun at everything from televangelism (“God Is an Alien”) to the anatomically challenged Barbie and Ken.
Behind it all was Schultz, who produced, directed, choreographed and acted in Six Women at The Studio Theatre at 10th and R streets, which she opened on a shoestring in 1995. The play’s smashing success put the struggling theater on its feet and underscored Schultz’s longtime prominence in the Sacramento theater scene. Schultz’s career here began in 1981, when she helped build the first Garbeau’s Dinner Theatre on Fulton Avenue. (She helped build and design the second Garbeau’s at the Nimbus Winery four years later.)
One evening, shortly after Six Women opened, something happened to Schultz that would twist the path of her art and her life forever. While dancing in the show’s closing number, Schultz suddenly felt ill. Gripping the shoulder of a fellow cast member, she implored, “Help me off the stage. I’m sick.” She collapsed backstage, and nothing’s been the same since.
For the past nine years, Schultz has been brutalized by a mysterious illness that ebbs and flows, rendering her housebound, often bedridden, for months at a time between her “good” periods, which usually last about four months. Even though Six Women was able to continue without her, the illness has robbed her of many theatrical ambitions and forced her, in July, to put her beloved Studio Theatre up for sale.
Schultz only wishes her condition were as believable to doctors—for that matter, to society in general—as a woman having Bigfoot’s baby is to some tabloid junkies.
Clump ssssssss. Clump ssssssss. Clump ssssssss.
That’s 52-year-old Schultz hauling herself, with the aid of two canes, down the hallway of the East Sacramento bungalow she shares with her husband, Craig Randall, manager of a local fitness club.
“I call it the K Street shuffle,” she says, casting aside her canes and plopping into an office chair. She rests her rebellious legs on the computer desk, and as she turns to talk, I see two smudgy half-moons beneath her eyes, another of the many marks of the beast living within.
Schultz has been diagnosed with a complex and misunderstood illness called chronic fatigue and immune dysfunction syndrome, also known as myalgic encephalomyelitis. Lest anyone think CFIDS means just being a little more tired than usual, let Schultz set the record straight: “I feel like the Man in the Iron Mask, like I’m in prison,” she’d told me the previous week on the phone during one of her bad spells. “I’m not me at all.”
A 100-plus-degree day in mid-July happens to be one of her good days, meaning she can at least get out of bed. She even went shopping this morning, albeit as a passenger in a friend’s car. (She does drive short distances, but talk on a cell phone while driving? Forget it. That’s overload.) She says she will have to retire to the bedroom immediately after our interview; that’s how much the day’s activities will drain her.
“This illness is completely isolating,” she says, gesturing in true theatrical form, not caring, right at this moment, about conserving wattage. “It prevents you from socializing, it prevents you from working, it prevents you from doing normal things that everybody does. You get so depressed and you truthfully have to face the fact that you will not be able to do what you want to do.”
She continues, “Right now, I’m dizzy, I’m numb, and I’m starting to lose words the longer I talk. But this is way better. If you had seen me three months ago, I would have been in bed in a dark room, not moving at all and barely, barely speaking. I tell people, if you want to know what I feel like, it’s a combination of mono and MS.”
Schultz’s associate producer at The Studio Theatre, Nisa Davis Hayden, has seen firsthand how much CFIDS has stolen from her boss’s life.
“It’s very devastating. You can hear it in her voice; it sounds like somebody talking from beyond the grave—and she’s a really energetic, articulate, imaginative person, full of creativity,” Davis Hayden says.
She remembers seeing Schultz felled for the first time in July 2003, when the theater was running A . . . My Name is Alice and Six Women.
“It really wiped her out. A lot of things just rolled over onto my plate because they had to. You have to just go with it; it really is that ‘show must go on’ mentality,” Davis Hayden says.
The most frustrating thing about Schultz’s illness is that there is no known cause, no laboratory test to detect it and no cure. While some victims overcome it—usually within the first five years—others never do.
CFIDS affects multiple systems of the body and is characterized by a constellation of debilitating symptoms, including extreme fatigue, memory problems, joint and muscle pain, unrefreshing sleep, tender lymph nodes, sore throat and headaches. Many victims, Schultz included, also develop digestive problems, asthma, shortness of breath, heart palpitations, numbness and tingling in the face and extremities, and depression.
According to the CFIDS Association of America, CFIDS affects an estimated 800,000 adults in the United States, although only 10 to 17 percent of these cases have been diagnosed.
“It’s a diagnosis of exclusion—meaning they try to rule out everything else and then just go, ‘Sorry, here. Here’s your exclusionary diagnosis. We can’t tell you what you really have; we’re just going to call it chronic fatigue syndrome,’” Schultz says.
Two to five times as many women as men have CFIDS, and even though it’s been called the “yuppie flu,” minorities and people at lower socioeconomic levels are at higher risk for the illness.
As for the cause of CFIDS, most researchers have abandoned their search for a single virus and instead are focusing their attention on a variety of triggers: pathogens, chemical and environmental exposures, stress or injury, and genetic predisposition.
Schultz suspects her illness may be viral in origin. In 1978, while attending graduate school at California State University, Long Beach, she was struck with a viral syndrome called Guillain-Barré, which attacks the peripheral nervous system. Numb from the waist down, hobbling on crutches, she managed to complete her master’s degree in theater. Her health gradually improved, but not without relapses.
Throughout the years, Schultz has seen so many doctors, their names and faces blur in her memory. The best any of them can do is treat her symptoms, if they take her seriously at all. Schultz has taken vitamin B12 injections, antidepressants and prescription painkillers, and has tried acupuncture. She follows a special wheat-free diet.
Schultz has been stung many times by seemingly callous remarks from physicians.
“I had this one doctor who took me into his office—I had walked in with two canes—put me on the table, did some muscle testing on my lower extremities, sat me up, and told me to see a psychiatrist. What can you say?” Schultz shrugs.
Another doctor said basically the same thing: “You obviously don’t want to be doing what you do. Therefore, you have created this disorder because it’s your way out.”
A plausible explanation, perhaps, for a patient who feels trapped in a dead-end situation. But Schultz was the furthest thing from a victim: a pioneering artist who considered it her calling, through theater, to lend richness, depth and humanity to the Sacramento region, even though she could have made an easier go of it in a place like San Francisco. (Schultz is originally from the Bay Area.) Besides helping to build the Garbeau’s theaters, Schultz also was a founding member and past president of the League of Sacramento Theatres, and created and directed “A Call to Unity” concerts for three consecutive years. She also created and directed the JAMMIES, a program highlighting excellence in high school music, and continues to be involved in See a Play, a visibility campaign for theater in the Sacramento region. In 1999, she won the Elissa Sharee award for overall contribution to the theatrical arts.
The real test of character came when Schultz decided to try scraping up money to open her own theater during the mid-1990s.
She says, “When I was opening The Studio Theatre on R Street, I tried to borrow money; I tried various ways of getting money and they (prospective lenders) just laughed. ‘There’s no way I’ll give you money for that—no way!’ And all the money I got at that time—you know, people loaning me five grand, two grand or whatever—they all wanted to be paid back.”
Somehow, Schultz did it. Everything in the cozy 92-seat playhouse—from the rugs to the lighting to the Six Women prom dresses from hell—was begged, borrowed or bought for a song, and it was all hers. The very suggestion that she’d worm out of something she fought so hard to build sounded ludicrous to Schultz and to those who know her.
“Theater is everything to me,” Schultz says. It’s my blood; it’s my passion. I keep wondering if it’s karmic for me that I chose a profession that is nonvalidating and I have an illness that is nonvalidating.”
If she’s careful, Schultz could drag along for months in a state of well-enough-to-fool-people. She could attempt to “avoid stress,” as so many doctors are fond of saying.
“But it means that I would have to live a Stepford wife-type lifestyle. I would have to just be happy and quiet and not do anything. How do you live with putting out your own fire?” she asks.
Somehow, she will have to. Schultz has come to the realization that theater life—and especially its business component—is no longer viable for her. Because her theater is a for-profit organization, Schultz has had to keep the business running on ticket sales alone.
“There’s no way I can stay in this career, because if you do arts in this town, you’re struggling. You’re working your ass off. And when you’re in an art organization, you know, s--- happens, like, sideways. It’s not linear. At any moment something could come up and just slap you upside the head and you didn’t even see it coming. Unless you can be flexible and ride the roller coaster. . . . I can’t ride the roller coaster anymore.”
But she will ride it. One more time. As a final hurrah, The Studio Theatre is bringing back Six Women With Brain Death, which will run through Dec. 18. After that, it’s exit, stage left.
Schultz says, “Somebody asked me, am I grieving yet? And I’m not. I really don’t think I’ll start to grieve until I’m there at the theater and really starting to see the transition. It’s going to be like something died.”
This may be the end of an era, but it won’t be the final curtain call. Think of this next phase as Jackie Schultz, Act II.
“I’m not a quitter. I won’t allow myself to think of [selling the theater] as quitting,” Schultz says.
Instead, she’ll devote more time to advocating for CFIDS patients, lending her face and voice to the cause. She plans to lobby in Washington, D.C., for the third time in May, to call attention to the illness and campaign for more funding for research (which, when compared to funding for multiple sclerosis, is pitifully low even though CFIDS affects twice as many people). She has started her own website, JackieSchultzProductions.com, where people can go to read blogs, connect to local theater events and find links to CFIDS sites.
Davis Hayden isn’t convinced Schultz won’t return to theater in some form.
“It’s hard to imagine her not doing it, that she won’t produce or direct or in some way have a hand in it,” she says.
But before she takes that next plunge, Schultz has a lot of time to reflect. She sees a certain poignancy in life now, ever aware of its ephemeral nature. She grasps at skeins of meaning in a way she couldn’t if she were healthy.
“I think when you have an illness that alters your life, and you face the possibility of dying, you become a different person,” she says. “I remember being in the wheelchair when I was 27 thinking, ‘If I end up in this wheelchair, I’m still Jackie Schultz.’ And I have so much that I am and that I feel—and that’s not going to go away. OK, I can’t walk, I can’t dance, I can’t swim, but I’m still me.”
Sounds like one woman whose brain is alive and kicking.