October 31, 2009
WHAT IS RECOVERY?
Though she learned to walk as a child in Blythe, Calif., 54-year-old Mari Tardiff took her first steps at Fred Endert Municipal Pool in Crescent City.
When she did, a lifeguard cried.
Mari hadn’t walked in nearly a year, ever since she drank raw milk and became paralyzed by a rare neurological disorder.
For Peter Tardiff, the tears have been frequent. He was lying in bed next to his wife the night she lost the use of her legs. For the three months she was on life support, he stayed by her side, not knowing if she would ever breathe on her own again.
The sounds of the pool, the splashes of skin slapping water and echoes of conversations are now familiar to Peter. So, too, are some of the faces. They are a welcome part of the routine.
On an overcast morning in June, Peter watched from the water’s edge as his wife struggled to rise to her feet. She’d only done it once before, a week earlier when Peter wasn't there.
Mari stared straight ahead with the determination of an athlete while one of her caregivers attempted to pull her body upright. She gritted her teeth as she tried to set her feet on the bottom of the pool, willing herself to stand.
It was a clumsy dance, each failure greeted with laughter and encouragement followed by furrowed brows and serious looks.
Finally, the concentration paid off and Mari was standing.
“Peter, I’m up!” she yelled, beaming as she unsteadily turned toward him.
Like a proud father, Peter smiled back. But behind his glasses, where Mari couldn’t see, sadness and doubt were etched into the corners of his eyes.
Peter realized this was fleeting. A glimpse of what was and what might never be again.
Soon, a lift would take Mari out of the pool, and he’d have to pick her up and put her back in a wheelchair. He’d then push her down a ramp to their specially equipped van waiting in the parking lot to take them home.
“After a year, this has become a part of our life,” Peter said, his gaze lingering on his wife, who was laughing as she stumbled around the pool.
“It’s been exhausting,” he said. “But I still believe what she believes: This too shall pass.”
RETURNING TO A REVAMPED RESIDENCE
For nearly five months Mari Tardiff’s life was in stasis.
In June 2008, she drank raw milk contaminated with campylobacter and developed a form of Guillain-Barré syndrome that left her motionless in a hospital bed with a respirator breathing for her.
After two and half months in intensive care, and several weeks of rehabilitation that taught her to breathe again, she was ready to leave behind the drab white walls and bright fluorescent lights of the hospital.
A year ago this weekend, Mari came home.
“I’ll never forget coming through my back door,” she said. “The colors were so vibrant.”
But aside from the rustic red and golden yellow paint on the walls, almost everything had changed.
A wooden ramp now led from the garage to the house, and the laundry room, once home only to a washer and dryer, had been converted into a bathroom with a roll-in shower.
In the family room, furniture was replaced with a hospital bed and lift. Peter brought down his mattress so he could sleep next to his wife.
For 26-year-old Stephen Tardiff, this was no longer the house he grew up in. It was more functional, and a constant reminder of his mother’s situation.
At the time, Stephen was working for a company that specialized in installing at-home medical equipment. When his father had a question about how to prepare for Mari’s return, Stephen was consulted. On one of his trips home, he even had to reconfigure his mom’s improperly installed hospital bed.
“For me it had always been a patient’s house,” Stephen said. “Actually having to come to your own house and do the same things you do for the hospice patients or other patients I would work with, that was a shock. Because this isn’t work, this is my home. This is where I grew up.
“This is my mother, and this is who I’m working for.”
INVOLUNTARILY THRUST INTO NATIONAL DEBATE
The story of Mari’s terrible encounter with campylobacter spread across the country. It was featured on numerous Web sites and blogs, and was cited in a New York Times article about food-borne illnesses.
Though she didn’t ask for it, Mari was now center-stage in the discourse over raw milk.
“She’s a lot like any other person that gets a food-borne illness,” said Seattle-based attorney Bill Marler, who specializes in representing people sickened by contaminated food. “Mari just happens to be a representative of a very bad case of a food-borne illness.”
Marler got his start in 1993 as a lawyer for one of the victims in the infamous Jack in the Box E. coli outbreak. Now one of the preeminent food-borne illness attorneys in the country, he is a crusader for stronger food-safety laws.
He’s written about Mari on his blog, and included a video of her struggles. He now represents the Tardiffs, and uses her story and others to illustrate that getting a food-borne illness can be “more than just a tummy ache.”
“I think that people just don’t understand how severely injured Mari was and is, and I think that helps explain the broader sense of food-borne illnesses,” Marler said. “A campylobacter illness like that could have happened to somebody who ate undercooked chicken.”
When it comes to raw milk, Marler said the government has “completely dropped the ball” from both a regulatory and educational standpoint.
The federal government bans the interstate sale of raw milk for human consumption. But every state has its own laws governing the product.
According to the Weston A. Price Foundation, a leading advocate for raw milk, its sale is legal in 28 states — including California — with varying restrictions. It can also be sold as animal feed in five other states.
Marler said there are too many loopholes that allow raw milk sellers to skirt laws designed to protect the populace from disease. He also said the information available to consumers about the hazards of raw milk is drowned out by its advocates.
“If you Google raw milk the first page is all about the benefits of raw milk and none of the risks,” he said. “You need to let people get educated themselves. You can’t just say, ‘This stuff is bad, and I’m the government. Trust me.’ I think you have to lay out the facts and hope that rationality reigns.”
Raw milk supporters believe they should be allowed to drink what they want without government interference.
“I understand the whole thing about freedom,” Marler said. “It’s easy to make that as a broad statement, especially when you’re a consenting adult. It’s a much more difficult argument to make when a parent is making the decision for their kid to drink raw milk.”
Peter Tardiff said he doesn’t want to get in a “war of words” with people about their own life choices. He just feels obligated to have a voice in the debate based on what happened to Mari. That’s why he went to Marler.
Mari also believes people have a right to make their own decisions. But as she sits in her wheelchair and surveys her own life, she also carries a warning.
“For people who continue to believe in it, be careful. Be very, very careful. Because it may never happen to you, but if it does happen to you or your child you can never forgive yourself. It took me a long time to forgive myself for upsetting my family.
“My mom, my husband, my children … how can they live their lives? They want to factor me in and they can’t. I can’t work, and the house has changed. I can’t uphold my end of the relationship as it was. Now someone has to step in and pick up the pieces.
“I think if this would have been my son, I don’t think Peter could have ever forgiven me because I know I could have never forgiven myself. Never.”
IT ALL STARTS WITH A TWITCH
Lying on her back, Mari grimaced as she tucked her chin to her chest and struggled to lift her shoulder off a padded table at Del Norte Physical Therapy.
Her face glistened with sweat, and her focus was hard to break. It was April — 10 months after she got sick — and she was trying to do something she once did without effort, something an infant can do. She was trying to roll over.
Such simple tasks are chores for Mari as she attempts to regenerate nerves and rebuild muscles.
Three days a week she’s at Del Norte Physical Therapy trying to bring her body back to what it once was. When she’s not there, she’s at the city pool or in her living room with an occupational therapist working to get her hands and fingers back into motion.
Every day is a workout, and sometimes the gains are minimal.
“You don’t always walk away saying, ‘Wow, look what I can do!’” Mari said as one of her caregivers wheeled her out of a therapy session. “Sometimes you walk away saying, ‘Look what I can’t do.’”
It’s not like she’ll wake up one day and the paralysis will suddenly be gone. She still needs to retrain her body to respond to what she’s telling it to do.
“It’s like trying to wiggle your ears.”
It all starts with a twitch. A slight flick of the finger, or a jerk of the knee. That means the nerves are responding. They’re no longer dormant, and they’re ready to work.
One of the hardest tasks was going to the bathroom. When she came home from the hospital last November, all she could do was shrug her shoulders and she still needed a urinary catheter.
Every couple of hours she would have Peter or one of her caregivers put her in a body sling above the toilet, and she would try to force herself to urinate. Day and night she would dangle from this contraption. Sometimes she would hang there so long her legs would turn purple.
At this time, Mari could do nothing on her own. She couldn’t feed, dress or bathe herself, and while she slept Peter would have to turn her every two hours. It was like she was a newborn.
One night Peter woke to hear Mari crying quietly. Her pillow had fallen, and she didn’t want to wake him because he had already gotten up several times to help her. She tried to apologize.
The lack of independence suffocated her, tearing away at her insides. She had never been anything other than self-reliant.
OUTPOURING OF SUPPORT AND INNUENDO
While Mari was still in ICU, her room was filled with so many balloons, flowers and get-well cards that nurses urged Peter to take some home.
The support from friends and family went well beyond nice notes and cheerful trinkets.
As Peter sat next to his ventilator-dependent wife, a fellow veterinarian from Brookings took over some of his appointments to make sure the Crescent Animal Medical Center in Crescent City didn’t lose customers. When Mari got out of the hospital, it seemed like the Tardiffs would never cook for themselves again as well-wishers brought containers stuffed with food.
Mari’s former co-workers still come to her house every Thursday on their lunch hour to eat, talk and marvel at the progress she’s made.
But Mari’s condition also became a magnet for rumors and innuendo.
Her illness resulted in the closing of Alexandre Family EcoDairy’s raw milk program in Del Norte County. The subsequent investigation into the related campylobacter outbreak drew scrutiny from the state. The California Department of Public Health examined other dairies for cow-sharing programs and surveyed local raw milk drinkers about their attitudes.
Food safety advocates — and in particular Mari’s own attorney — latched onto her story, using it as a cautionary tale in an effort to raise awareness about the dangers of raw milk and potentially use it as a means to develop stricter regulations for its distribution.
Some raw milk advocates questioned on blogs and message boards whether her paralysis was caused by drinking unpasteurized milk or was the result of a pre-existing condition.
One blogger asked if it would be “good business for raw dairies to sell only to the healthy and shun the sick and immune-compromised, from whose ranks adverse reactions and lawsuits are more likely to arise.” A response to a post in the comment section of another blog refuted claims by a raw milk advocate that Mari “had just returned from cancer treatment and chemotherapy” and that she had “literally nothing left to fight (the campylobacter) infection like a healthy person would.”
“It was hurtful for people to think I had an underlying condition, that I was somehow defective to make this happen,” Mari said.
Before the onset of Guillain-Barré, she was a healthy woman. The blog’s mention of a pre-existing condition was probably a reference to a benign brain tumor that was removed from Mari several years ago. This didn’t require chemotherapy, she said, and her neurologist told her there was no relation to her current condition.
ALEXANDRES: ‘JUST PRAY FOR MARI’
The Tardiffs weren’t the only family caught in the fallout. So were the Alexandres.
Because the contaminated milk came from their dairy, Blake and Stephanie Alexandre were now inextricably linked to Mari and her paralysis.
The Tardiffs and Alexandres had run in the same social circles, and oftentimes they’d find themselves at the same parties.
In the summer of 2008, Kevin Tardiff noticed that he started seeing Blake and Stephanie Alexandre more frequently.
“I felt like it was a budding friendship,” Kevin said. “I thought it was just starting.”
Sobbing from the moment she first mentioned Mari’s name, Stephanie Alexandre said she wishes she could put her arms around the woman who, if circumstances were different, she might have called her friend.
“It’s been hard celebrating our joys in our life knowing what Mari’s going through, and we just pray, pray, pray that she gets better,” Stephanie said. “We just pray for her recovery, and people have really reached out to us and asked us what they can do, and I say, ‘Just pray for Mari.’”
She didn’t want to talk about raw milk, or if she and her husband Blake felt responsible for what happened. She did acknowledge that her family still regularly drinks it.
Mari knows the Alexandres didn’t try to harm her. Even so, she said she’s still not sure if she’s ready to face them.
For now, the only contact between the Alexandres and Tardiffs is through lawyers and insurance agents.
Mari and Peter’s attorney, Bill Marler, said no lawsuit has been filed against the Alexandres, and he hopes the issue can be resolved by working with their insurance company rather than taking it to court.
The monetary cost to the Tardiffs and their own insurance company has been overwhelming, he said.
“Her medical bills to date are over $1 million dollars,” Marler said. “And you can expect to see millions of dollars more in medical expenses and care costs.”
EVOLVING DEFINITION OF ‘RECOVERY’
No one knows where Mari’s recovery will lead. Like Guillain-Barré syndrome’s mysterious onset, its departure — and especially what it leaves in its wake — is uncertain.
Some people recover fully within a couple of months. Others fight for years, only to find themselves attached to a walker for the rest of their lives.
In January, Mari’s rehabilitation specialist from Rogue Valley Medical Center in Medford, Ore., Dr. Jeffrey Solomon, wrote an overview of her recovery to that point.
He stated that while Mari will continue to regain strength and functionality, her progress will be slow and he believed she would have a permanent disability.
“At this time she is over seven months out after presentation of the initial symptoms and remains quadriplegic ... Although there is the possibility that she will fully regain all function, as time progresses the chance of this becomes less and less.”
Since then, a lot has changed.
In March, Mari started a new rehabilitation program with John Knox at Del Norte Physical Therapy. These sessions provided Mari’s first real foray into the world her body had left behind.
In their seven months together, Knox has seen Mari work from a point where she couldn’t even move her foot from the stirrup of her wheelchair to where she’s now able to hold herself upright between parallel bars after being lifted into a standing position.
Knox believes Mari will walk again, though he still can’t say whether she’ll need the assistance of a walker, cane or ankle braces to do so.
“It doesn’t look like she’s hit a plateau by any means.”
Given the extent of her paralysis, and what he’s seen from other patients, it could take up to five years for Mari to realize the full extent of her recovery.
“There’s not just a physical part of this,” Knox said. “There’s the emotional and the psychological part of dealing with this disability. Some people get to the point where once they achieve a certain level that they’re happy with, they’ll stop pushing themselves.”
Based on what he’s seen with Mari, he doesn’t think this will happen.
“Mari’s the kind of person that will get back to doing what she wants to do,” Knox said. “Will it be the same way in which it happened prior to this or not, I don’t know. But I think she will get her life back.”
WILL SHE EVER MAKE HERSELF HAPPY?
Her mother always told her: “Mari, you don’t need enemies because you’re too hard on yourself.”
In a way this is true. Mari’s always been driven.
With everything she does, she believes she can do better. That’s one of the reasons she tried raw milk; she thought it would be a healthy addition to her diet.
Her therapist said this trait is a key factor in Mari’s recovery. She’s determined to keep improving, and her exercise routine outside of physical therapy shows that.
“As someone is doing exercises and sending those stimuli more often, I think that helps speed their recovery,” Knox said. “The more the nerves regenerate, the more motory units, or muscle fibers, that can be fired. As that’s improving, you start getting more and more strength because you’re recruiting more and more muscle fibers.”
But Mari also knows her greatest asset — her determination — can work against her because she finds herself never being pleased with how far she’s come. Even though a new muscle might be showing some definition or one of her fingers starts to curl a little farther than it did the day before, it’s not what it was before her paralysis.
She sometimes wonders if she’ll ever be satisfied even five, 10 years down the road, or if “full recovery” will turn into a Sisyphean task she can never accomplish.
“You protect yourself. You don’t want to put all these grandiose ideas in your head,” she said. “In some ways you exist from a point of uncertainty so you don’t put yourself out there emotionally.”
Mari hasn’t always been successful.
When she first came home, she told herself she was going to walk by Christmas. On New Year’s Eve she changed it to her mother’s birthday. Then she pushed it back to the Fourth of July. When the fireworks lit up the night and reflected in Crescent City’s harbor, Mari watched from her wheelchair.
In moments like these, Knox will remind Mari of the severity of her condition, and explain to her that recovery from Guillain-Barré is like eating an elephant: She has to do it one bite at a time. But there are still days when she’ll tell him, “My elephant just had babies.”
Even though she sometimes downplays her progress, Knox knows differently. When he’s working with Mari and a new muscle starts to pulse or her leg bends more than it once did, she has a predictable response, he said.
“She smiles.”
THE VIEW OUT FRONT
The fountain in front of Mari’s house trickles like a forest stream.
It was built with large, tan rocks next to a giant redwood stump with huckleberry growing from its crown.
In her living room, Mari can see this man-made waterfall nestled in the corner of her property. The window is open, and she hears the water flowing from the top of the fountain to the pond below.
It soothes her.
Her eyes close and the corners of her mouth turn up in a smile. It’s a brief moment of escapism in her otherwise harsh reality.
“You know what brings me to tears,” she muses, “is when I go to roll over and I can’t roll over. Or when I am resting and I pull my legs up to stretch my back and I can’t.
“It’s the little things, it’s not the big things. It’s the littlest, teensiest things that we take for granted, that we don’t even think about, that we do without thinking about. That’s when I unravel. Because that’s when I realize what I can’t do.”
Mari can no longer type on a keyboard, or use her thumb to change a TV channel with a remote control. She can’t drive a car or ride her bike. And walking, the thing she misses most, that she’d give anything to do again, is currently not an option.
“I even miss cooking,” she says, “and I never liked to cook.”
Mari looks again at the fountain in her front lawn, and a rare melancholy mists over her eyes and cracks her voice.
“I just miss my independence. A lot. And the hard thing I’ve come to realize is that all my stuff is not just going to come back one day.
“It’s going to be a long time, and that’s been hard for me. I think I’ve come to terms with it, but when I really think about it, it makes me sad, so I just don’t dwell on it. I have bigger things I have to concentrate on right now.”
Mari’s climb has taken her from the lonely desert of her mind to the excruciating struggle she realizes today. But just above her head, on the second floor of her house, is hope.
She knows that once she can get upstairs on her own, she’ll have achieved her autonomy. This is what keeps her going.
Her next physical therapy appointment is Monday.