Saira Maria Loza will tell you she’s a normal person who lives in a small town. She’s in Hayward, in the East Bay, going on eight years now, in a house with three dogs. (One of them, Luna, tends to wander into any conversation wearing a little outfit Saira would never have picked herself.) She and her husband don’t have children. What she does have, these days, is a job that doesn’t look like a job at all.

“My job would be actually advocating for myself,” she says. It’s a quiet sentence, and most of her life is folded inside it.

To understand what her injury took, you have to know who she was before it. Born in San Francisco and raised in San Jose, the daughter of Mexican parents, Saira grew up bilingual and grew into a self-described workaholic. She went to Lincoln High School and attended several years of college at the University of Guadalajara, studying language interpretation. During her summers there she studied English as a Second Language (ESL) and earned a teaching certificate.

When she returned to the United States, she tried to cover every contingency and take advantage of every opportunity. “I was thinking of everything,” she says, planning for jobs she could do: retail, real estate, legal secretary.

While attending San Jose City College, she worked with her dad in the restaurant industry. When she entered retail as an assistant manager, her manager made her choose between school and the job. With a mortgage to pay, she kept the job.

Then she managed a Guess store. Despite all the challenges along the way, she kept building and striving to develop and maintain a quality life.

She had held a real-estate license since 2002. Later she added a legal-secretary certificate from Gavilan College, figuring it might let her work in a doctor’s office someday. (Last year she went back to finish the seventeen courses on that real-estate license and found she was one course short. The Board made her start over. She is, by her own admission, still mad about it.)

On April 20, 2010, she had what the paperwork would call a freak slip and fall at work in her retail store. In heels, she went down into a “near-splits,” caught a counter with one arm and shoved a door open with the other. She doesn’t remember hitting her head; the records say she did, and the concussion came with whiplash and a change in her vision. The damage didn’t stop there: torn muscles in her thoracic spine, an injured lumbar, torn ligaments, pelvic bones forced apart. “I did multiple damage to my body,” she says. Because it was filed as a “slip and fall,” it was handled as a routine workers’ comp claim.

What happened next is the part she keeps returning to.

Each time she started to heal, she was sent back to work, and going back set her further behind. A neurosurgeon later told her that if she’d simply been given the days off she needed, she might have recovered, and that the cycle itself caused damage that wouldn’t undo, including the thoracic outlet syndrome she still lives with. Then, after a functional restoration program, her workers’ comp doctor told her she could not return to work at all.

“That was the most devastating moment in my life,” she says. The work hadn’t only been the income she didn’t want to lean on her husband to replace.

It was who she was.

“They took away my identity. Who was I going to be?” Even now she slows down on it. “I felt like I got stabbed.”

Fifteen years on, the pain is several pains at once. The hip and lumbar pain is constant and steals her sleep; fibromyalgia and migraines come and go. “Sometimes one screams louder than the other,” she says. Ask her to rate it one to ten and she’ll tell you exactly what she thinks of that scale: “I hate it. It doesn’t even work.” Given room to describe it in her own words, she finds them easily: a loud scream, a pain in her chest, “a burning, burning, stabbing pain in my back that doesn’t go away.”

On the worst days, when it all arrives together, she stays in bed, gets up to do one small thing, and comes back. She fights it with a schedule she makes herself keep, and with what she calls her toolbox: medication, breathing, prayer, a hot shower, aromatherapy, the distraction of a good comedy, a heating pad. “Anything you can find that works, just use it collectively,” she says. Faith holds the rest of it up. Without it, she says plainly, she isn’t sure where she’d be.

The turn, from chasing a cure to managing a life, came for Saira over a book. She was reading The FibroManual, by Ginevra Liptan, MD, learning the proper names of the parts of her body that hurt, and she decided to walk into her next appointment and raise them herself. “Instead of looking for cures, I just thought, okay, let’s work on this.” She made her case. The doctors went for it.

That instinct, to stop waiting and start asking, runs through everything she’s done since. She found her way to a support group, the coloring group Michele Rice, who leads patient engagement at the U.S. Pain Foundation, used to run, where she learned the plain relief of knowing “you’re not the only one going through the same thing.” And at a clinic serving many Spanish-speaking patients, she found the thing that turned a private fight into a public one.

A doctor there, she says, was taking advantage of Spanish-speaking patients and raising his voice at them. She had felt that current herself, treated, as a bilingual woman, as though she wouldn’t understand what was happening to her or be able to push back. She fired the doctor and the attorney who’d underestimated her. With a good attorney, she has stayed at the same clinic ever since. But the thing that stuck wasn’t her own case. It was watching people with less English and less information get talked over and get nowhere. “Somebody needed to do something,” she says, “and I wanted to figure out how to do it.”

The “how” arrived the way it usually does: person to person. Michele had found her own way into advocacy a step ahead of Saira, and she reached back. Someone had come to the clinic and mentioned the U.S. Pain Foundation; Nicole Hemmenway, its CEO, was a name Saira kept hearing. The only advocacy training she knew of had required travel she couldn’t manage, so when the foundation opened an online version, she signed up the moment she saw it. Cindy Steinberg taught it, and every presenter, Saira says, felt like a key player. Then she did the thing the community is built for. She stopped sitting in the audience and joined a team: the California Advocacy Team, the CAT.

The CAT turned out to be better than she’d pictured, organized and cohesive, a place where anyone can add something and everyone’s notes get heard. She was “ecstatic” when the team took on a workers’ compensation project. After her own history, it’s the work she most wants to move. What surprised her was the coalition-building, the way the team joins forces with other groups working the same bill.

“When there’s more, there’s more power,” she says.

For someone who spent years fighting her own case alone, that is the whole point. Not just a place to tell her story, but somewhere to take it.

There’s a useful tension in how Saira and the newsletter she’s now part of use their words. Asked what “patient engagement” means, she answers the way many of us would at first: a patient being engaged in her own health and her own care. In PWLE Voices’ vocabulary, that’s closer to empowerment, and engagement is the rung before it, the part where people like her get into the rooms where research and policy are decided. By that measure she’s already climbing. She writes to her representatives about looming cuts to Medicaid and Medi-Cal. She’s open, when the timing is right, to facilitating a support group for Spanish speakers, the very gap she first noticed at that clinic. Asked where she wants her advocacy to be in ten years, she sat with the question a while before arriving somewhere generous: “Maybe I could do both.”

None of that started with a credential. It started with a training she could finally reach, online, no travel, and a person a step ahead who reached back. That door is still open: the U.S. Pain Foundation’s advocacy program is the one that brought Saira in. If her story sounds like yours, that’s the step she’d point to.

She’ll be the first to say the woman doing all this isn’t quite the woman who fell in 2010. “I’ve always been competitive,” she says. “Very stubborn, and tenacious.” She was a go-go-go person who worked twelve-hour shifts and went to the gym after. Pain made her learn a patience she’d never had, and made her appreciate how good she’d once had it. What it didn’t take was the thing she values most: the satisfaction of finishing something that makes another person’s life better. “God doesn’t give you a burden you can’t carry,” she says. She appears to have decided to carry a few extra.

— Tom