October 30, 2009
BURIED ALIVE
The heat was unbearable. Mari Tardiff awakened in the Arizona desert, and though she'd grown up here, all she could think about was getting back to the cool coastal climate of Northern California.
She especially missed her redwoods, the ones that greeted her each morning from her well-groomed lawn just outside Crescent City.
She wanted to tell her husband this, to have him take her home, but Peter had left her alone in the sweltering heat.
She noticed a woman and her young daughter lying nearby. When Mari looked closer, she realized the little girl was dead.
She tried to get the mother’s attention, but she was being ignored. The woman wouldn’t speak. She was dead too.
Suddenly, there were bodies all around, lined up in a row, and Mari was lying with them.
Frightened, Mari searched for Peter. She finally saw him. He wasn’t dead. He was crying.
She wanted to speak to him, but couldn’t. She didn’t know why she was here. She didn’t understand what they were doing in the desert. She couldn’t move.
All she could do was blink.
Peter saw his wife was confused. He held up a white board with the alphabet written on it, and told her to close her eyes when he said the letter she wanted. They’d practiced this before.
With a tedious series of blinks, she asked him to take her home. He said he couldn’t. Then she told him to get her to a hospital.
He asked her where she thought she was, and slowly, speaking with her eyes, she said, “You have me in the desert.”
Peter left, this time only for a moment. When he came back, he held up a sign. It read: Rogue Valley Medical Center.
“Mari, if you ever feel lost or scared I want you to look for this sign because when you see this sign there will always be someone nearby to help you.”
MYSTIFIED DOCTORS AND A SUDDEN SPIRAL
Mari doesn’t remember much about the medevac flight from Crescent City’s Sutter Coast Hospital to the Rogue Valley Medical Center in Medford, Ore., more than a year ago.
What she does recall is the pain — an intense searing sensation in her legs — and the anxiety that camped in the pit of her stomach as her body slowly slipped into paralysis.
At the time, no one really suspected the raw milk she drank the week before was to blame for her sudden condition. It was sometimes brought up as a possibility, but quickly dismissed.
How could milk paralyze someone? It just didn’t make sense. No one else who was drinking the same milk from the same farm seemed to be reporting any problems, at least according to the county Public Health Department that Mari worked for.
“We didn’t put two and two together,” Peter said.
About two weeks before Mari was hospitalized, she and her youngest son, Kevin, had decided to try unpasteurized milk that she had picked up from Alexandre Family EcoDairy Farms.
They drank it for the first time on June 2, 2008, with Mari being especially impressed by its flavor. What her palette didn’t pick up was the campylobacter that had contaminated the milk.
“It was just so refreshing, and that’s the scary part,” Mari said. “You can’t taste those microorganisms. You can’t see them. You can’t smell them. You have no idea.”
Both Kevin and Mari became violently ill, experiencing the typical symptoms of a campylobacter infection: stomach cramps, vomiting and diarrhea.
Mari seemed to get over her symptoms relatively quickly, a matter of hours, according to her husband, whereas Kevin stayed sick for several days.
“When she had vomiting and diarrhea, we assumed it was the milk and something in it that made her sick, but that Friday she was over it like that,” Peter said with a sharp snap of his fingers. “Her immune system hit it hard and got rid of it.”
That would be the extent of Mari getting better.
The following week, she still felt like she was recovering from the flu. She wasn’t sick, but her body was fatigued. She went to the gym to try and force it out of her, but she couldn’t finish her workout.
On Thursday, June 12, Mari went to Sutter Coast Hospital for some blood tests. The next day she continued to feel weak, and didn’t go to work.
Peter, worried about his wife, stayed home with her.
“Watching her walk downstairs she looked like she was 80. She was holding onto the banister, walking strangely. I just thought she was achy, and she said, ‘Wow, everything’s blurry.’”
Peter took her back to the hospital for an MRI. By the time they got to Sutter Coast, she was so weak he needed to put her in a wheelchair.
When the tests were over, everything looked normal and he took her home. That evening her legs stopped working, and Peter called the paramedics.
Back at Sutter Coast, no one was sure what was happening to Mari. The pain combined with the paralysis made a diagnosis difficult.
A radiologist was the first one to mutter “Guillain-Barré syndrome.”
“He said, ‘I wonder if this is GBS,’” Peter said. “And one of the physicians said, ‘It sure doesn’t look like GBS because she’s in way too much pain.”
It wasn’t until Mari was flown to Rogue Valley Medical Center that the radiologist’s theory was confirmed. Mari had developed a potentially fatal disorder: acute motor axonal neuropathy, a rare form of GBS that causes the body to turn on itself and attack the parts of nerve cells that transmit electrical signals from the brain.
Even though there is no definite known cause of the disorder, it’s most commonly linked to a preceding campylobacter infection.
For Mari, it meant paralysis.
FINDING THE EVIDENCE CURDLED IN A REFRIGERATOR
Once Del Norte County’s public health officer, Dr. Thomas Martinelli, learned of Mari’s condition, he thought raw milk might have been the culprit. He also knew there were a lot of other people in the community who were drinking the same product from Alexandre Family EcoDairy Farms.
“Mari’s case was the first that came to mind because we knew right away that she had consumed the raw milk,” he said. “Even though she did not test out for campylobacter, the disease she got, the acute motor axonal neuropathy — the AMAN syndrome — is frequently related to campylobacter infections.”
He checked with the local testing laboratory, Sutter Coast Hospital, to see if there were any other reported cases of campylobacter he didn’t know about. What he said he found was that at least two people had tested positive for the pathogen in May, before Mari became sick, and that the results were not forwarded to his agency, as is required under state law.
This spurred Martinelli’s investigation into whether there was a campylobacter outbreak occurring in Del Norte County, and whether Alexandre EcoDairy was the source of the contamination.
By the time he contacted the dairy, the owners, Blake and Stephanie Alexandre, had already shut down the raw milk program. They did it voluntarily on June 15, right after learning Mari had been hospitalized.
“We immediately stopped when somebody got sick,” Blake Alexandre said at that time. “We were absolutely concerned that there could have been a connection.”
A total of 16 people in Del Norte County became ill between May and June as a result of last year’s campylobacter outbreak, according to a report from the California Department of Public Health. Of those, 15 drank raw milk, and one was an Alexandre EcoDairy employee who worked closely with the cows, but denied consuming the product.
Each of these people, excluding Mari, recovered fully after experiencing only a couple days of the flu-like symptoms associated with campylobacter.
Martinelli suspects more people fell ill as a result of the outbreak based on the shear number of people who drank raw milk in the county.
There were 115 people signed up for the program, but that figure did not include family members who were also likely drinking the milk. Taking that into account, Martinelli estimated 300 to 500 people were consuming unpasteurized milk, in one form or another, from Alexandre EcoDairy around the time of the outbreak.
He said another factor may have impacted public health officials’ knowledge of the true breadth of the campylobacter outbreak.
“There are people who are so loyal to the Alexandre family and the dairy and the milk program that they didn’t want to come out and say they maybe had also gotten sick, because they knew it could have some implications.”
While campylobacter was never found in any of Alexandre EcoDairy’s milk tanks when tested by public health officials — the samples weren’t taken until more than a month after the outbreak started — it was found in Mari’s refrigerator.
“Fortunately, Mari’s husband saved the milk,” Martinelli said. “Even though by the time we got to it, which was probably close to four weeks after it was put in the refrigerator and it was all curdled, we were able to send it down for testing. And even though it didn’t grow out campylobacter, they were able to do some DNA testing on it and that found evidence of campylobacter in the milk.”
This positive test provided the link between the dairy’s milk and the outbreak. It also meant that Mari’s experimentation with raw milk was the reason for her paralysis.
A RARE DISORDER ATTACKING THE CIRCUITRY
Guillain-Barré (pronounced ghee-YAN bah-RAY) syndrome is a rare neurological disorder that affects only one to two people out of 100,000. Even less common is acute motor axonal neuropathy, also known as Chinese paralytic syndrome, which is a more severe form of the disorder.
GBS occurs when a person’s immune system attacks the peripheral nerves, which constitute all the electrical circuitry in the body excluding the brain and spinal cord. This can slow brain signal conduction and lead to a complete disconnection through nerve degeneration.
Symptoms can vary from a slight tingling sensation in the legs to muscle weakness to complete paralysis. It works differently for each person, and anyone — male or female, young or old — can get it.
Even more uncertain is its onset. Scientists and medical professionals still don’t know what causes GBS. It is frequently preceded by a gastrointestinal or respiratory infection, though symptoms of the disorder might not occur until weeks afterward. One of the most common precursors is a campylobacter infection.
There is no known cure for the disorder, though it eventually recedes. That doesn’t assure a person who has contracted it will fully recover from its debilitating grip.
SPREADING PARALYSIS AND A VENTILATOR
The onslaught started in Mari’s extremities. Her immune system went after the nerves in her hands and legs first, rendering them useless.
When she arrived at Rogue Valley Medical Center the paralysis continued to spread. By her second day there, Mari’s typically boisterous, room-filling voice had become a whisper. She was struggling to breathe.
At one point in the day, doctors believed she might be rebounding because as she talked her voice seemed to regain strength. But by 5 p.m. she was mute, and a decision needed to be made about whether to put a breathing tube down her throat and hook her up to a ventilator.
Peter didn’t want to make this choice alone.
“I said, ‘Mari, they’re thinking about intubating you here in a couple of hours,’” Peter recalled, slowly shaking his head. “She looked at me — she couldn’t talk at that point — and her eyes just looked scared.
“I said, ‘Are you ready now?’ And she gave me the head nod.
“That was the last consciousness for a long time, because once they intubate you they knock you out because they don’t want you fighting the tube.
“She had that tube in her for two weeks before they put a tracheotomy in her.”
WEEK AFTER WEEK IN A WASTELAND
Mari Tardiff was in Rogue Valley’s ICU for two and half months, alive only because a machine breathed for her.
She couldn’t move. She couldn’t speak. For a while, she couldn’t even blink.
For the Tardiffs, it was like a death in the family.
“It really just felt like emptiness,” Mari’s oldest son, Stephen, said. “It was like it wasn’t real.”
Mari was no longer recognizable to Stephen. Her comforting smile had been replaced by a vacant stare and the arms that used to eagerly hug him were limp by her side.
“It really didn’t look like my mom, it was the weirdest feeling. Her eyes were stuck open and she kind of looked like a fish out of water. It just didn’t look like her.”
Stephen noticed his father had also changed. Peter became more introverted, and he spent much of his time by his wife’s side. He had lost his appetite and sleep was a rarity. Eventually, he started taking blood pressure medication.
Even though Mari looked like a wax statue on the outside, she was awake inside. She could still hear and feel everything around her. It was like she had been buried alive.
She couldn’t roll onto her side when she was uncomfortable. If she was hot, she couldn’t ask someone to turn on a fan. When she had an itch, she learned to let it go.
Sometimes hospital workers wouldn’t realize her condition, forgetting she still felt everything around her. As they moved her, the pain pierced into her flaccid body, but she had no way to scream for them to stop.
The first thing to come back was a blink.
Since it was all Mari could muster, Peter and his sons devised a system to give her back her voice. They wrote out the alphabet on a white dry-erase marker board, and told her to blink whenever they read aloud the letter she wanted. It was slow going, but she could at least communicate.
One of the first things she asked Peter was, “Am I going to make it? Am I going to die?”
At first she didn’t understand where she was, or how long she had been there. Her medication had put her into a semi-comatose state, allowing her mind to wander into differing realities.
“If you talk to people that are in ICU situations, they don’t really remember much. They remember bits and pieces and the rest of the time they’re someplace else, which is good,” said Dr. Martinelli, who in addition to being Mari’s coworker at the Department of Public Health is one of her close friends.
“Your mind does things that are protective,” Martinelli said. “It takes you out of whatever situation you’re in and puts you someplace else where you don’t remember what’s going on. If she was awake and aware of everything that was going on for three months she would go nuts.”
Mari’s medication caused her to hallucinate. Sometimes she was in the desert, other times on a sinking ship.
“It was just unbelievable,” Mari said. “None of the hallucinations were kind, they were just very aggressive.”
That’s when Peter placed a Rogue Valley Medical Center sign in Mari’s room, to help ease her transition and remind her where she was.
“It was really like a beacon,” Mari said. “That kind of kept me to where I could stay on the planet.”
FACING THE PROSPECT OF LOSING EVERYTHING
Mari was now aware of her situation, but no one really knew what the next step in her recovery was or even if she would continue to improve.
Rogue Valley had done its job. It was time to take Mari out of the ICU. But she still could not breathe on her own.
On Aug. 1, 2008, Peter had a meeting with several of Mari’s doctors and caretakers about her future. Referring to her as “the quadriplegic,” they told Peter that his wife might never come off a ventilator and that he should start looking for care facilities where she could spend the rest of her life. One of the closest places, he was told, was Denver.
Peter, the veterinarian, the husband, suddenly faced a choice.
He’d owned Crescent Animal Medical Center for nearly 20 years. He’d been living and working his dream, something he wanted to do ever since he was a child caring for stray cats hit by cars near Los Angeles International Airport.
Should he give up everything he’d worked for and do what everyone was telling him was the “best option” for his wife?
“Imagine, you’ve been married to this person for 30 years and they’re telling me she’ll never breathe again, and I’m going to have to sell my practice and move out of an environment that I’m very comfortable in. It was a roller-coaster ride.”
While he wanted what was best for Mari, he also didn’t want to give up on her recovery. He believed she could walk again. He started looking for other options, and that’s when he found the Northern California Rehabilitation Center in Redding.
He was told it had 100 percent success in getting people off ventilators. It was also close to home.
THE ARDUOUS TASK OF BREATHING AGAIN
It only took Mari 27 days to get off her ventilator once she arrived at Redding. The journey to non-assisted breathing, though, was painstaking.
Her diaphragm, which hadn’t controlled her lungs for months, was useless. The muscles had atrophied during her time on the ventilator, and she needed to rebuild the fibers that allowed her to take a breath.
For months she had relied on machinery to breath for her. Now she was being asked to leave her lifeline behind and do it on her own. It was frightening.
“It would be just like someone holding a pillow over your face,” Mari said. “I couldn’t catch my breath.”
Slowly, Mari began to wean herself off the respirator. Eventually, she would breathe on her own during the day, and have the ventilator hooked up only at night, just in case. Finally, she no longer needed assistance.
Mari went back to Rogue Valley Medical Center, this time on the sixth floor — away from the ICU — for in-patient physical and speech therapy.
It was here that she saw herself for the first time and realized the full extent of what had happened to her.
REFLECTIONS OF A LOST SUMMER
Fall had come, and from the large therapy room where patients were relearning how to do things that once came naturally to them, Mari could see the changing colors of the trees in the valley.
Even though it was beautiful, Mari still missed the evergreen redwoods that surrounded her house.
She was put into a standing frame by some of the therapists. While her body was strapped to the contraption, a nurse brought out a full-length mirror so Mari could see for herself what they were doing.
What she saw was a rag doll. She was pinned into a device that held her upright while the skin on her face hung limp and her limbs drooped loosely toward the ground.
“It wasn’t me. My hands were swollen. My feet were swollen. My face didn’t look like me. I had a hole in my neck. I had a catheter in, so I had a bag strapped to my leg. It was just a train wreck. It was such a devastating blow, and I just remember thinking, ‘I’m broken.’”
Mari wanted to cry, but couldn’t. Her respiratory system was still so compromised that it might have set her back if she let the emotions flow down her cheeks. All she could do was look away until it was over, until the reflection of her nightmare was gone.
Reality visited again when she was introduced to her wheelchair.
The only mobility Mari had at this time was in her head and neck. The motorized chair had a harness near the neck so she could guide it with her chin.
“When I saw that harness, it was the reality at that moment that I was a quadriplegic. It was a stamp of this is your situation,” Mari said. “I was paralyzed, and I couldn’t even push a teeny-tiny stick on a wheelchair.”
Again, she wanted to cry. Again, she held it in.
She had to accept her circumstances and move on. She had to get better.
The hospital had saved her life. The rehabilitation center had taught her to breathe again.
It was time for Mari Tardiff to go home.