After 30-year health battle, Lynn Zaritsky walks, hikes, and runs for the Legislature
By Suzanne Dean
MT. PLEASANT—Christmas is about new life. The holiday celebrates the arrival of Jesus on earth. His mission was to make it possible for people to die and then live again.
A Mt. Pleasant woman has had a very personal experience with new life, with a kind of rebirth at age 66 after more than 30 years of debilitating illness.
For all those years, Lynn Zaritsky, now 70, suffered from what was first misdiagnosed as multiple sclerosis (M.S.), and later diagnosed as Stiffman’s Syndrome, a rare disorder that causes muscles to stiffen and can cause the body to go into involuntary contortions.
Today, she is not sure what was wrong with her. It could have been Stiffman’s Syndrome combined with Celiac Disease, a disorder in the body’s ability to metabolize gluten. Or it could have been an extreme case of Celiac Disease that impacted muscle movement.
“My longest time (in the hospital) all at once was six months,” she says. “There was three months, four months, six months again. I stopped counting after I’d been in the hospital for three years altogether, counting every admission. I stopped counting because it was so depressing. Keep in mind that I was still trying to raise my children.”
Zaritsky was born and grew up in Medford, Ore., located on the Pacific Coast about 25 miles north of the California border. She attended Lewis and Clark College in Portland and graduated from what is now Southern Oregon State University in Ashland, Oregon.
While in college, she was a copy aide at the Portland Oregonian, a statewide daily newspaper in Oregon. After college, she taught English as a second language (ESL) in Greece and worked for an English language newspaper there. Later, she taught ESL to Southeast Asian refugees and others in Eugene, Oregon for about three years.
When she was 29, she went home to Medford, where she met and married her husband, Mark. They lived on a 14-acre property outside Medford where she had lived growing up. “We had horses, goats, chickens, a dairy cow, a dog,” she says. “I really am a very rural person.”
Lynn had always been physically active. But after the birth of her second child, she noticed she couldn’t move her legs normally. “It was very difficult for me to walk, pretty much overnight.”
She was referred to a neurologist, who told her she probably had M.S. That scared her. She had heard about a young woman who was a cello sensation, but got M.S. and died. “I was really worried about what my future would look like, what the future would be like for my children,” she says.
Unfortunately, she had no idea at that point how bad her illness would get.
The family stayed in the Medford area, where Mark taught at a Catholic school. They had a third child. “I could still walk,” Lynn says, “but it was really difficult.”
At times, the heaviness in her legs got to where when she went to the grocery store, she ended up abandoning her cart and everything in it “because I couldn’t stand up anymore.”
She got involved with the M.S. Society, where people told her, “You need to accommodate your disease.” That’s when she got a wheelchair.
In her mid to later 30s, Lynn and Mark decided to move to Utah. Enrollment had dropped at the school where Mark was teaching. The Zaristkys reasoned that there would always be plenty of children to teach in Utah.
Eventually, they settled in Salem. When Lynn was about 40, she had her fourth child. She felt pretty good while she was pregnant. But after the baby was born, her disorder came on with a vengeance. She started shaking so bad her wheelchair started coming apart.
She also started having a strange response known as apostonic posture. When she was startled, she would lurch into a kind of backward fetal position where her back was arched, her arms went upward by her head, her palms angled backward sometimes spraining her wrists, and her fingers curled digging into her palms.
Then after several hours, her body would go limp and relax into a forward fetal position.
Doctors at Mountain View Hospital in Payson tried high doses of steroids. They didn’t work. Finally, they decided to implant a pump and catheter to deliver medicine directly into what is known as the “intrathecal space” in the back where spinal fluid flows.
After a while, her main doctor in Payson, an anesthesiologist, declared, “I’m sorry. I don’t know what this is, but this is not M.S.”
So at about 45, she was referred to the University of Utah Medical Center and to a widely known M.S. neurologist. She ended up being in and out of the U. Med Center for the next two years.
The doctor lifted Lynn’s leg. It stayed in the air. After several minutes, it plopped back to the bed.
He told her she had either Isaac’s Disease or Stiffman’s Syndrome. “We’ll know in the morning,” he said.
The next day, he told her it was Stiffman’s, one of 11 cases he’d seen over his long career. The syndrome is caused by lack of an antibody called gammaimunobutriac acid or GBA or short. When you use your muscles, GBA helps them to return to their relaxed position. Without GBA, when muscles move or tighten, they stay that way.
Her doctor recommended continuing to use a pump and a catheter to deliver baclofen, an anti-spasticity drug, into her spinal column.
But there seemed to be endless problems with the pump and catheter. The catheter kept bending, breaking or getting disconnected from the pump. Lynn says if she’s counting correctly, she went through 11 operations to fix or replace the catheter. Once, doctors mistakenly removed the pump instead.
Finally, she was told she needed a “heavy-duty” catheter. She waited in the hospital two weeks for the special device to arrive.
“I said, ‘Enough,’” she recalls. She called the anesthesiologist from Mountain View who also practiced at Utah Valley Regional Medical Center. UVRMS was a lot closer to home. “Please put me in Provo,” she said. It can’t be any worse than this.”
So at about age 47, she transferred to UVRMC, where she ended up being treated, on and off, for another six years.
Her UVRMC doctor was able to quickly find and implant a heavy-duty catheter. “I started moving better, having a better life,” she says.
But complications arose. During the surgeries at the U. Med Center, the dura, the lining around the spinal column, had been punctured. Medicine was leaking through the holes and puddling in her back. Meanwhile, more medicine was being pumped into the spinal area. She was overdosing on baclofen. More than once, she stopped breathing.
Her UVRMC doctor did “a huge, awful surgery” to repair the dura, “which is like sewing wet Kleenex,” she says. He replaced the catheter, which by then, was broken. And he pulled an 8-inch section of an old catheter out from her spinal column. It had apparently been left during a previous surgery.
“I recovered from that, was good for a little while, and then I started overdosing and underdosing again.”
With her doctors, she decided to give up on catheters. She tried two more approaches, one using an IV drug, and one a dialysis-type procedure to clean an antibody that was contributing to muscle dysfunction out of her blood. In one way or other, both treatments backfired.
One day during the years of treatments, she was in the hospital being weaned off Versed, a benzodiazepine, similar to Valium or Xanax, which she had been given to try to relax her muscles.
“I was really depressed,” she says. Mark and the children came by. When Mark stood next to her bed, she told him, “I just can’t do this anymore. Can’t you just let me go?”
Her husband turned to their four children. “You know, your mom is really tired,” he said. “Would it be okay if she left, if she moved on?”
One of the kids said, “No.” Another said “No” more emphatically. And then all four said “No” pretty much in unison.
Mark said, “How many of you can help your mom through this?” he asked.
“They all raised their hands, all five of them,” including Mark, Lynn recalls. “That’s what kept me alive.”
In 1996, she started writing a column on disability issues for the Salt Lake Tribune. It became nationally syndicated and ran in large dailies in other states.
“I had to find a reason for this disease, some way I could feel that I was living for a reason, not just using taxpayer’s money,” she says.
Sometimes she received letters from other people with disabilities asking for help with their situations. The column continued for five years. “It had a good run,” she says.
She also started working for the Disability Law Center in Salt Lake City. She was assigned to investigate allegations of abuse or neglect of people with disabilities at the Utah State Hospital, Utah State Prison, Utah State Developmental Center, jails, nursing homes and youth facilities around the state.
The Zaritskys figured out their house in Salem wouldn’t be paid off until they were in their 80s. So in 2008, they decided to sell it, take the equity and buy “way down.” That’s when they found land and built a small, handicapped accessible house in Mt. Pleasant. Their serene property backs up against a stream, so they look out from their deck onto thick trees and other vegetation.
It was four years ago, when Lynn was 66, that dramatic changes came into her life. A cousin in Oregon, who is a nurse, saw an article by a doctor in Great Britain who had several patients with Stiffman’s Syndrome. Some of them also had Celiac’s Disease.
“He started looking into the chemistry of it. He took them off gluten. He said people (with the disease) who absolutely excluded gluten made significant progress.”
After verifying the doctor’s credentials, Lynn wrote to him. She asked if the improvement had been long-term. He said “yes.”
“So I went on a total gluten-free diet, and here I am,” she says.
First, she noticed her joints didn’t hurt anymore. “And then I could walk. I didn’t remember what it was like to walk without…my muscles resisting every movement I attempted.”
She said her children noticed that she was not only walking, but walking fast. “Then I realized how much lighter my legs felt.” She started trying to run.
On July 4, 2017, she entered a fun run sponsored by the Sanpete Pantry. “I wanted to enter, and I did it,” she says.
She started hiking in Maple Canyon to get her heart rate up and build her endurance. She even joined a Sierra Club trip to Glacier National Park, where she helped conduct a census of mountain goats and picas. At one point, everyone had to do a 6-mile hike. She didn’t think she would be able to hike that far. But she made it.
“I’m back, I’m back,” she thought to herself.
Earlier this year, she even decided to run for the Utah Legislature. She heard the incumbent Republican who represented Sanpete and Juab counties was running unopposed. She felt that wasn’t right—people needed a choice. So even through both counties are overwhelmingly Republican, she filed for the Democratic nomination, walked neighborhoods passing out literature, and ran radio and newspaper ads.
She didn’t win, but she got some of her positions out, including talking with voters about her experience with disabilities.
As she looks back over decades of extraordinary pain and difficulty, capped by unexpected rebirth, she, like many who go through extreme experiences, says she’s actually grateful.
“Every one of my children has told me my experience and their growing up (with it) has made them who they are,” she says.
All four children are responsible, successful, good citizens. Three out of four have gone to college.
Her daughter, Megan, 38, lives on the Wasatch Front, and is a recreation therapist working with at-risk youth.
Her son, Sam, 35, of Eagle Mountain, works for Apple in an IT position and has a second job at the Utah State Developmental Center in American Fork.
Ben, 32, of Cottonwood Heights, handles computer systems for a group of lawyers in Salt Lake City. His wife is an ICU nurse.
Her youngest daughter, Libby, 30, lives in the Las Vegas area where she manages a restaurant.
Reflecting on her life, she says the same thing her children say. Her health problems “made me who I am. I have an understanding of grief and of trauma and of bad situations that has made me … really want to help other people get through those situations.
“As hard as it was,” she says, “It was worth it. Not that I would do it again.”