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Chemical sensitivity makes for ‘bizarre existence’
t Kitsap support group makes
ordeal a bit more endurable for at least one local sufferer.
There are two things Joan Walz says people usually notice about her. The first is her bright red hair.
The second: her purple gas mask.
Without the latter, she says, “It’s hold your breath and run.”
Walz suffers from Multiple Chemical Sensitivity (MCS), sometimes referred to as Environmental Illness, which renders those in its grasp susceptible to the most basic of household and societal chemicals.
Darting through parking lots to avoid car exhaust, eschewing cigarette smoke and skirting past the aromas of perfumes, dryer sheets and building materials, to name a few, is a part of what Walz describes as a “bizarre existence“ for those with MCS.
“I hear diesel,” she says, and sure enough, a large, gritty truck rumbles near the bench in Poulsbo’s Waterfront Park where she sits, and for a few moments she covers her face with the mask.
Walz, who bears a catching smile, moved to Kitsap County four years ago after abandoning the insurmountable challenges of living in Seattle with MCS — which, for her, causes brain swelling and seizures if too exposed.
Her case is an extreme one, she said, and the ways and degree to which some suffer MCS varies.
According to the MCS Referral and Resources Web site, 15 to 30 percent of people in the United States complain of chemical sensitivity sufficient to induce illness, though only a small percentage of sufferers are severely disabled by their symptons.
Walz also wears filters in her ears to cut down her vulnerability.
Since moving here, Walz has started the Multiple Chemical Sensitivity Support Group, a gathering of about seven who each face MCS and can brainstorm with and support one another through an illness that is, Walz said, quite isolating.
Walz’s truck, for example, boasts not one but a handful of blue handicapped parking signs.
She’s posted them on the vehicle’s side windows so those who see her driving masked don’t panic and act on terror-fueled assumptions.
“It was either that or be stopped every two to three blocks by the police,” Walz said.
Another example: Walz’s bright red hair, which she cuts and dyes herself because she can’t enter a salon.
The dye, one of four colors available, is made of vegetable products. Walz also chooses her clothes carefully, airs them out after returning home and uses fragrance-free makeup, shampoo and soaps.
Meeting with friends, shopping for groceries, finding housing, attending church or a movie and — an especially troublesome obstacle — working in a standard office space can prove too difficult.
It’s not a mind-over-matter type thing, she said.
At some point, she came to the realization she must respect the limitations of living with MCS.
“No one would choose to lose everything, which really most of us end up doing,” said Walz. “It’s not a choice. It’s not like we don’t prefer it. It’s that we get violently ill. The only thing that works for sure for all of us is avoidance.”
For Walz, that meant giving up her Seattle home, close proximity to family and friends, and a career she loved.
“I couldn’t stay stable there,” said the University of Washington grad. “I was so unstable, I realized I had to leave.”
But the move didn’t come before turning to the respiratory gas mask, which is covered in a friendly purple color, but nonetheless ignorable to some.
“I swallowed my pride and started wearing one,” she explained. “It’s very painful when people laugh or sneer.”
Some, displaying a fearful state of mind, have openly considered the mask a sign of disease affliction, such as AIDS or Bird Influenza. Once, she was stopped by police using spotlights and bullhorns.
“I thought I was the only person in the world who was afflicted like this,” said Walz, who quit working as a shyness and social phobia counselor in 1986 because of her MCS. Now, her group provides a thought springboard, and allows members to share tips on helpful and usable products. Without such recommendations, shopping for even the most common of items becomes “trial and error,” Walz said.
MCS, which Walz said is sometimes mistakenly seen as a psychosomatic, is a “21st Century disability,” with sufferers “desperate to get better.”
“The sad thing is there’s really very little research going on, so we’re all targets of the latest treatment that comes down the pipe,” she said.
MCS is thought to either be triggered by a toxin overload or build in a person gradually.
But Walz is sure to say her story does have a happy ending.
Now, the self-described “social person“ has resumed her counseling through online communication, allowing her to put her passion and education to work. And she’s found other kindnesses amidst the harsh realities of MCS.
“I’m so lucky, I go to an aerobics class and my dear classmates are careful not to wear scented products,” said Walz, who wears brightly colored clothes to detract from her mask. “There are angels out there, there are good people out there.”
Walz encourages those with questions on MCS to give her a call, and urges parents with allergic kids to be their own scientist, questioning and testing the affects of household products.
The MCS support group meets from 1 to 3 p.m. the last Monday of each month. To find out more, call Walz at (360) 697-6168.