Mari Tardiff was 52 years-old when, in an effort to be healthier, she drank raw (unpasteurized) milk. It was contaminated with Campylobacter; this is her story.
Monday June 2, 2008
Mari and her youngest son Kevin drank unpasteurized milk from an eco-dairy located in their hometown of Crescent City, California. Kevin who was 23 years old only consumed the milk on that day, a few days later he would experience vomiting and diarrhea. Mari, drank the unpasteurized milk that entire week.
June 6/Evening
Mari experience two hours of violent vomiting and diarrhea followed by flu-like symptoms and exhaustion.
Thursday, June 12
Mari began to experience pain in her legs with tingling in her hands and feet. Mari went to an emergency room, and lab work was done, and abdominal X-rays were taken. But doctors could not determine what was wrong.
Friday, June 13
Mari’s vision became blurred.
Her husband Peter called a neurologist to consult on Mari’s condition, and the doctor phoned in an order for an MRI. The MRI was normal, it was then that the radiologist mentioned a frightening possibility – Guillain-Barré syndrome, or GBS, a potentially fatal inflammatory disorder.
Hours later, back at home, Mari’s legs were on fire, searing with pain that, ironically, only hot water helped to soothe. Her legs hurt so much that she soon retreated to bed, wrapping her legs in warm towels and a heating blanket.
June 13/During the night
Mari awoke and realized she could not move. Peter bear-hugged her to lift her to the toilet and then carried her back to bed.
In the early hours of the morning, he called for help, which led to an ambulance ride to a small hospital, and then a medevac flight to the Intensive Care Unit at the larger, better-equipped medical center.
After the Medevac flight arrived at the medical center in Medford, Oregon, the doctor who met the Tardiffs’ diagnosed Mari with Guillain-Barré syndrome.
He did a spinal tap and expressed hope that the worst might be over.
Sadly, he could not have been more wrong. Mari was admitted into ICU and intravenous immunoglobulin (IVIG) treatments were started.
*The most commonly used treatment for Guillain-Barré syndrome is intravenous immunoglobulin (IVIG). When you have Guillain-Barré syndrome, the immune system (the body’s natural defenses) produces harmful antibodies that attack the nerves. IVIG is a treatment made from donated blood that contains healthy antibodies.
Campylobacter jejuni (C. jejuni) infection is now recognized as the most common identifiable illness preceding Guillain–Barré syndrome (GBS), a group of immune-mediated, neuropathic disorders, including Fisher syndrome, affecting the peripheral nervous system (Ho et al., 1998).
Mari would eventually be diagnosed with a form of GBS called Acute Motor Axonal Neuropathy (AMAN) also known as Chinese Paralytic Syndrome.
AMAN is a variant of Guillain–Barré that is characterized by acute paralysis and loss of reflexes without sensory loss. Pathologically, there is motor axonal degeneration with antibody-mediated attacks of motor nerves and nodes of Ranvier.
Throughout Father’s Day, Sunday, June 15, 2008 Mari’s breathing became increasingly labored. She could not talk and could barely swallow.
She remembers weakly nodding “yes” when Peter said the doctors thought she should be intubated and asked if she agreed. Mari was admitted into the intensive care unit where she was connected to a ventilator and had to be heavily sedated. A nasogastric tube and Foley catheter was also put in place.
The Tardiffs’ already had their advanced medical directives in place, allowing Peter to make medical decisions on Mari’s behalf.
Two weeks after being admitted into ICU, the endotracheal tube and nasogastric tubes were removed and replaced with a tracheotomy tube surgically introduced into her throat and a gastric feeding tube inserted into her stomach.
This was the beginning of Peter being Mari’s advocate for all her medical decisions.
Autonomic storms are acute disorders of sympathetic function that result in alterations of body temperature, blood pressure, heart rate, respiratory rate, sweating, and muscle tone.
Shortly after being admitted into ICU, Mari experienced what is known as an autonomic storm. It lasted for approximately a week.
Mari’s blood pressure and heart rate would reach dangerously high levels. Mari remembers moments of consciousness when she would be aware of her body’s temperature rising, leaving her to feel as if her body was on fire and in pools of sweat.
Besides being heavily medicated, the nursing staff kept oscillating fans in the room to help keep Mari as comfortable as possible.
“Investigation of the First Case of Guillain-Barre Syndrome Associated with Consumption of Unpasteurized Milk – California, 2008.” Amy E. Karon, T. Martinelli, W. Miller, C. Parker, R. Mandrell, D. Vugia.
The authors explained the laboratory methods used in investigating Mari’s illness:
We reviewed the patient’s medical record and interviewed her husband to assess her symptoms and exposures. We used polymerase chain reaction (PCR) and multilocus sequence typing (MLST) to test a six-week old unpasteurized milk sample, obtained from the cow leasing-program and partially consumed by the patient, for genes encoding the bacterial membrane component lipooligosaccharide (LOS) in GBS-associated Campylobacter jejuni. The DNA testing of the milk (PCR and MLST) detected the Campylobacter jejuni gene.
In addition to the DNA testing, the authors also tested Mari’s blood for antibodies to Guillain–Barré syndrome (GBS), and it was positive, indicating the presence of GBS.
The authors concluded: Combined laboratory and epidemiologic evidence established the first reported association between GBS and unpasteurized milk consumption. This conclusion echoes the conclusions reached by investigating officials with Del Norte County and the State of California, as noted below: “the available epidemiologic and laboratory data support the conclusion that this cluster of acute diarrheal illness in Del Norte County was an outbreak of C. jejuni infections caused by consumption of unpasteurized milk from [Alexandre EcoDairy Farms.]”
On October 2, 2008, the California Department of Public Health (CDPH) issued a report linking an outbreak of Campylobacter illnesses to unpasteurized milk from Alexandre Eco Farms Dairy.
The report was the result of an investigation commenced on July 14, 2008, when Dr. Thomas Martinelli, the County Health Officer for Del Norte County, California reported four cases of laboratory confirmed Campylobacter infections and five additional cases of diarrhea in Del Norte County residents. Eight of the original nine sick individuals were members of the Alexandre Eco Farms “cow-leasing” program. Eight of these individuals had consumed milk produced on the farm. The ninth sick individual worked with cattle on the Alexandre EcoDairy Farms. One of the eight individuals who was sick, Mari, had already been hospitalized with GBS, following the onset of acute gastroenteritis after consumption of the milk.
As part of the investigation, health department officials retrieved a refrigerated carton of partially consumed Alexandre EcoDairy Farms milk from Mari’s home. Mari had consumed a portion of the milk before her illness. The specimen tested positive for Campylobacter jejuni DNA using a test called polymerase chain reaction (PCR). Testing indicated that multiple strains of Campylobacter jejuni were present in the milk. Del Norte County officials eventually identified 16 cases of Campylobacter jejuni associated with the outbreak. Fifteen of those were persons who consumed milk from Alexandre EcoDairy Farms. The 16th case was the farm employee. CDPH and Del Norte county officials concluded that “the available epidemiologic and laboratory data support the conclusion that this cluster of acute diarrheal illness in Del Norte County was an outbreak of C. jejuni infections caused by consumption of unpasteurized milk from [Alexandre EcoDairy Farms.]”
Locked in Syndrome (LIS), a.k.a. pseudocoma, is a condition in which a patient cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking. Though appearing unconscious, they are very self aware.
With Mari’s complete paralysis her diaphragm was paralyzed requiring her to be on life support (ventilator). Initially, Mari was intubated and, at two weeks, a trach had to be surgically put in place. The trach made her unable to speak and/or gesture.
To communicate with Mari, her family understood that Mari would have to spell out what she wanted through blinking. One blink would signal “YES” and two blinks would signal “NO”.
To make it easier for Mari to see and choose each letter, the consonants were split on two boards. To decipher each word the first question would be, “does it start with a vowel?” if Mari blinked once the person would say the vowels out loud until Mari blinked for the letter she wanted. The second question was, “does the second letter start with a consonant?” if so, the first board would be held up and Mari would be asked if the letter was on that board? If she blinked twice, the second board would be held up and each letter would be pointed to until Mari blinked once.
Although this was time consuming and exhausting it was the only means of communication for several months.
Eventually, when Mari was able to click her tongue, the family provided a baby monitor allowing her to summon nurses when needed.
Some of the drug treatments intended as sedatives had the opposite effect, making Mari agitated and paranoid.
She suffered from nightmarish hallucinations.
Once when Mari blinked to her husband “Why do you have me in the desert?” Peter felt helpless. He told her that he would get her to a hospital immediately.
He left for a few minutes and returned with a large sign that read “You are at Rogue Valley Medical Center ICU” He posted the sign on a wall where Mari could see it at all times. He told Mari that if she ever felt lost or afraid to look for this sign and someone would always be there to help her.
Peter began to notice that when Mari was medicated with the narcotic Dilaudid she would become extremely agitated.
He began to journal the times the medication was administered and her symptoms that followed. Once Peter addressed this with Mari’s neurologist, a change in medications resulted in an appropriate outcome.
Decreased proprioception is when there is a reduction in the sense that tells the body where you are in space; proprioception provides us with information about the movement and positioning of our body, head, arms and legs. https://www.physio.co.uk/what-we-treat/neurological/symptoms/sensory-problems/reduced-proprioception.php
Mari’s form of GBS, Acute Motor Axonal Neuropathy (AMAN) is absent of demyelinating findings.
Although Mari’s sensory to touch remained intact, her complete body paralysis caused her to not know where her body was in space.
Whenever someone entered the room, they would touch her legs and hands so she could orient her body’s position.
Mari was trapped in her own body.
Subjected to constant pain, and the added indignities of enemas and other procedures, while not being able to speak or move, Mari was trapped in her body.
Emotions began to overwhelm her and depression predictably settled in.
“The thought of my death was becoming a welcomed relief,” she later recalled, “I clearly remember communicating to my husband that I could not go on.”
Continuing, Mari says, “I remember him crying and begging me to promise that I would not give up but rather do my best to hang on. Once I promised him that I would try, my emotions were up and down and the feeling of being a prisoner in my own body proved to be overwhelming.”
While losing track of time Mari became painfully aware of every second passing by.
During the day she would often have a friend or family member with her. During the evening hours when visitors had to leave, Mari found those times of isolation extremely frightening.
Mari’s sons bought and set up a laser star projector in her ICU room. At night her ceiling would come alive with stars, constellations, shooting stars, and clouds. Bringing the beauty of the universe into her ICU room helped get her mind off of the machines keeping her alive and her fragile state.
The longer patients are on mechanical ventilators, the more difficult it is for them to breathe again without them.
After Mari had been on a ventilator for five weeks, her doctors began trying to wean her off in the complicated process that involves monitoring breath volumes and rates, pressure support and oxygen concentration. From time to time, Mari was provided continuous positive airway pressure (CPAP) as part of the transition from mechanized breathing.
Mari made progress, but she still could not breathe on her own.
Initially, there was a lot of optimism about Mari weaning from the ventilator. Unfortunately, there were many halting steps and Mari’s progress began to falter.
Although both Mari and Peter have medical backgrounds, they felt like they were kept in the dark about Mari’s condition, perhaps because there were no clear answers about her future.
When Peter began hearing rumblings that Mari would have to leave the ICU, no one came to him directly.
Then on August 1, “out of the clear blue” as Peter recalls, the medical team and a discharge planner laid out their grim prognosis: Mari was not improving, she might never again breathe independently, and the Tardiffs must consider putting her in a long-term care facility. During this meeting, the discharge planner did not refer to Mari by name but called her “the quad.”
An institution in Denver was recommended, with doctors and staff acknowledging this might mean Peter would need to make changes, including moving his family and selling his business.
After the meeting Peter was in shock, he wanted to provide Mari the best care possible; however, it would require uprooting their entire lives. Peter met with a representative from the Denver institution and introduced her to Mari.
Unimpressed by the presentation, Peter met with his sons to discuss what had been laid before him.
The family decided that they would find a more suitable option for Mari. Peter contacted a friend who was a traveling ER doctor to see if he knew of any rehab facilities on the west coast. He recommended the Redding Rehabilitation Hospital in Redding, California. Peter took copies of Mari’s hospital records and drove five hours to meet with Redding’s respiratory therapist and physicians.
They had a 100 percent rate in weaning patients from ventilators and felt confident that they could help Mari.
Mari was flown by medevac to the Redding Rehabilitation Hospital on August 20, 2008.
Along with the medical transfer team, her friend Gayle accompanied her on the flight while Peter drove the five hours by car to meet them there. He was waiting at the hospital when Mari arrived, and was taken aback by how ill she looked upon her arrival.
During that first night at the facility, Mari’s heart raced over 120 beats a minute. Blood was drawn and antibiotics were started. A battery of tests revealed she had been transferred with an undiagnosed blood infection that was most likely exacerbated by the stress of the flight.
Because of this blood infection, Mari’s roommate had to be moved and she was left alone in isolation.
As important as it was for her to breathe on her own, Mari had moments of anxiety and doubt. Mucous plugs often blocked her airway, causing harrowing feelings of suffocation.
She tried to cling to the thought that breathing once had been natural and would be again.
In the end, it was treating the sepsis (blood infection) that helped her make huge strides toward getting off the ventilator.
In less than four weeks at Redding, she was completely weaned and breathing room air, improved enough to earnestly begin rehabilitation.
Other incremental successes soon followed: sitting up again for the first time, even though she crumpled in five seconds; taking her first shower since becoming ill. All these small milestones were met with excruciating pain because being bed-bound with paralysis caused muscle atrophy, painful muscle cramps and her shoulders had subluxated out of their sockets.
She passed a swallow test and was able to taste a little food once more.
Still paralyzed, with only moderate torso control, Mari was transferred back to the Rogue Valley Medical Center via ambulance, this time for inpatient rehabilitation.
She still had a Foley catheter in her bladder and a feeding tube in her stomach. With previous bed transfers being so painful, Mari was delighted with a lift suspended from the ceiling, allowing her easier transfers from bed.
She eagerly started speech, occupational and physical therapies, napping between each demanding session.
During one therapy session she saw, for the first time, her ravaged image in a full-length mirror. That delivered a crushing blow to her psyche.
Mari later stated, “Initially I didn’t recognize the broken woman pinned in the standing frame staring back at me.” It took every ounce of strength to hold back her tears.
Mari’s respiratory status was still weak, and she knew she wouldn’t have the stamina to cry. Mari made a mental note that “when she was stronger, she would mourn that moment with a sizeable cry.”
Initially, Mari had assumed therapy would restore her independence, help her resume her former, active life. But now she was devastated to think she might have been overly naïve.
The end goal might only be a motorized wheelchair.
Mari’s request to the Physical Therapy staff was to regain her independence.
Although she was paralyzed, Mari could only focus on returning to her previous physical state.
Trying to address her request for independence, an electric chair with a chin device for maneuvering was presented as an option. Unfortunately, it backfired and instead became a symbol of defeat. Mari feared that to use it might mean resigning herself to life as a quadriplegic.
When the enormity of her injuries began to sink in, she found herself on the brink of an emotional meltdown. Once again, she could not cry, because even something as normal as sobbing and shedding tears might compromise her fragile respiratory system.
Mari fell into a deep depression and struggled to come back from this all-time emotional low. She had been away from home for five months and had lost all sense of herself.
Mari realized she had to come to terms with her ravaged body and knew that if she was to win this battle, she needed to come home and re-engage in her life.
Campylobacter jejuni (C. jejuni ) is the most common cause of bacterial foodborne illness in the United States. . Most cases of campylobacteriosis are associated with eating raw or undercooked poultry. Outbreaks of Campylobacter are usually associated with unpasteurized milk or contaminated water.
How do people get infected with Campylobacter?
Campylobacteriosis is most often associated with eating raw or undercooked poultry or from cross-contamination of other foods by these items. Infants may get the infection by contact with poultry packages in shopping carts.
Most people who get ill with campylobacteriosis get diarrhea, cramping, abdominal pain, and fever within two to five days after exposure to the organism. The diarrhea may be bloody and can be accompanied by nausea and vomiting. The illness typically lasts one week. Some infected persons do not have any symptoms. In persons with compromised immune systems, Campylobacter occasionally spreads to the bloodstream and causes a serious life-threatening infection.
A very small number of Campylobacter organisms (fewer than 500) can cause illness in humans. Even one drop of juice from raw chicken meat can infect a person. One way to become infected is to cut poultry meat on a cutting board, and then use the unwashed cutting board or utensil to prepare vegetables or other raw or lightly cooked foods. The Campylobacter organisms from the raw meat can thus spread to the other foods.
Campylobacter organisms are spiral-shaped bacteria that can cause disease in humans and animals. Most human illness is caused by one species, called Campylobacter jejuni. Campylobacter jejuni grows best at the body temperature of a bird, and seems to be well adapted to birds, who carry it without becoming ill. These bacteria are fragile. They cannot tolerate drying and can be killed by oxygen. They grow only in places with less oxygen than the amount in the atmosphere. Freezing reduces the number of Campylobacter bacteria on raw meat.
Campylobacter is one of the most common causes of diarrheal illness in the United States. The vast majority of cases occur as isolated, sporadic events, not as part of recognized outbreaks.
Campylobacter infection is diagnosed when a culture of a stool specimen yields the organism.
Almost all persons infected with Campylobacter recover without any specific treatment. Patients should drink extra fluids as long as the diarrhea lasts. In more severe cases, antibiotics such as azithromycin or erythromycin can shorten the duration of symptoms if given early in the illness. Your doctor will decide whether antibiotics are necessary.
Rarely, Campylobacter infection results in long-term consequences. Some people develop arthritis. Others may develop a rare disease called Guillain-Barré syndrome that affects the nerves of the body beginning several weeks after the diarrheal illness. This occurs when a person’s immune system is “triggered” to attack the body’s own nerves resulting in paralysis that lasts several weeks and usually requires intensive care. It is estimated that approximately one in every 1,000 reported Campylobacter illnesses leads to Guillain-Barré syndrome. As many as 40% of Guillain-Barré syndrome cases in this country may be triggered by campylobacteriosis.
After Mari became ill, the stress on Peter was so great that for the first time in his life he had to take blood-pressure medication.
When Mari was in the ICU in Medford, Oregon, it had been a two and one-half hour drive each way for Peter and then a five-hour trip each way when she was transferred to Redding, California, for rehabilitation.
For months, in order to be with Mari, Peter had to hire relief veterinarians to cover for him at his clinic.
Mari’s 82-year-old mother was also suffering being separated from her only child.
As difficult as the situation was for Peter, bringing Mari home was better for all of them.
On November 8, 2008, Mari returned home to Crescent City.
Peter brought her home in a van that had been outfitted with a wheelchair lift. He tethered Mari’s wheelchair inside the van and drove the two-and-a-half-hour trip.
A few days after their return, Sutter Coast Home Health came to assess Mari. Mari had spent several years working for Sutter Coast Home Health/Hospice and understood their importance in her care. She knew they would assess her physical self, her needs and her home to coordinate services to help with her recovery.
Mari and Peter made a list of goals she wanted to achieve and at the top of her list was to not be dependent on a urinary catheter. As a nurse, she understood that her bladder muscles were weak and would need to be strengthened. To do this she had to be positioned in a lift and hoisted onto a portable toilet every two hours, day and night.
Mari’s caregiver, Marilyn, later confided in Mari how difficult this was to watch. Marilyn said Mari’s legs would turn purple while in the lift and on the portable toilet. She knew Mari was in pain however she also knew Mari had to work her bladder muscles by starting and stopping her urine stream.
Although it was a long and painful process, Mari regained full bladder control after having been catheterized for five months.
Mari’s hospital bed was set up downstairs in their family room, which now was equipped with a portable toilet, a Hoyer lift and a stand-up frame. Before Mari returned home, Peter had moved their bed to the downstairs family room next to Mari’s hospital bed. Through the night he would wake every two hours to attend to her needs while working full time running a busy veterinarian practice during the day.
Home Health physical and occupational therapists also came to the house five days a week. The therapy was extremely painful on Mari’s damaged nerves and atrophied muscles. When Peter was present, he found it so upsetting that he often could no longer watch.
Home health care is a wide range of health care services that can be given in your home for an illness or injury. Home health care is usually less expensive, more convenient, and just as effective as care you get in a hospital or skilled nursing facility. Medicare.gov
Using their own resources, the Tardiffs:
and purchased:
Eventually Mari’s work with the Home Health physical therapist prepared her to be transported to Del Norte Physical Therapy three days a week; Mari worked diligently with PT John Knox. The paralysis from damaged motor neuropathways required Mari to relearn every movement her body lost; the therapy was a slow, painful process.
Motor pattern: A particular sequence of muscle movements directed to accomplishing an external purpose. The act of building a motor pattern (or learning a skill) gradually progresses from “a lot of thought and little understanding” to “little thought and a lot of understanding.”
Every single inch of every single repetition builds a motor pattern. Mari recalled, “repatterning required such intense concentration on each motor sequence to create a movement that when I no longer had to think about it I knew we had succeeded.” Twice a week Mari would be transported to the city pool to do hydrotherapy.
Mari and Peter also hired a personal trainer to help Mari strengthen her core to benefit her physical therapy sessions. With so much uncertainty regarding the future, every improvement was celebrated. Unbeknownst to all, there was still a very long, painful, stressful, frustrating road to travel to regain a “new normal” life.
They would soon realize that the five-month hospitalization had been the easy part.
Returning home after a five-month hospitalization, her existence bore no resemblance to the life Mari lived prior to her illness.
With the GBS, Mari’s new norm as a quadriplegic was one of continuous pain in her hands and legs.
Each night Peter prepared her for bed, and she was completely dependent on him until her morning caregiver arrived at 7:30, at which time Peter left for work.
An aide showered, dressed, and fed Mari, and prepared Mari’s breakfast and lunch and attended to her needs. An LVN arrived around noon and overlapped the morning caregiver so they could both transport Mari to either physical therapy or the pool. Each day around 3:00 p.m., Mari’s 82-year-old mother would come to keep her company and stay with her until Peter arrived home.
At the end of the workday, several of Mari’s friends and co-workers would stop in to see her. A friend organized a list of people to prepare and drop off dinners. Around dinner time, Peter would return from work and the cycle started all over.
Stephen, Peter and Mari’s oldest son, came home for several months to be of support to them, but especially to his grandmother, Mari’s elderly mother.
Before her GBS, Mari enjoyed cooking for her sons when they came home to visit. Working full-time as a public health nurse, she also loved entertaining, traveling, dancing, golfing, kayaking, biking, and skiing. She worked out 3-5 times per week at the local gym.
After drinking unpasteurized milk, her injuries changed all that. Right off the bat she lost her physical body, her independence, and her job. She lost dreams and plans that she and Peter had made for their future. The illness changed how Mari defined herself and navigated through life.
Many years later her youngest son asked Mari what she was feeling when she returned home?
Mari answered, “I felt as if I had a gaping hole in my heart, I was numb and would often wonder if I had somehow cheated my predetermined time to die because I didn’t fit in anywhere.”
The uncertainty of her future was exceptionally difficult leaving Mari and her family in a state of limbo.
Her relationships with her family and friends forever changed and while she made incremental progress, there remained a long way to go.
“Mari may never walk again …”
Peter observed, “That unless you have lived through a similar ordeal, it’s impossible to understand how terrible it is to see life as you know it swept away in a flash.”
“Words cannot express the pain, confusion and doubt,” he said, “over whether enough was done to protect Mari and, most of all, whether she will ever completely recover.”
On January 26, 2009, her treating physiatrist provided an overview of her ongoing struggle for recovery.
His report: “Ms. Tardiff’s current status with respect to her Guillain Barre is that she has stable quadriplegia secondary to the Guillain Barre.
She is experiencing healing and return of strength at a very slow pace. She still does not have the ability to walk or stand and very limited use of the upper limbs. With regard to [her] current treatment program, she is continuing to work with outpatient physical and occupational therapy.
Presently she is living in Northern California on the coast and receiving some therapies in her community there. As she regains more function, I would like her to come to the Rogue Valley for more intensive physical and occupational therapies.
My prognosis regarding the Guillain Barre is that she will likely experience continued slow progression in terms of regaining her strength and functionality. However, I do believe that she will have permanent disability as a result of her Guillain Barre Syndrome.
She suffered a very profound neurologic injury requiring her to be ventilator dependent for about three months. At this time she is over seven months out after presentation of 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.”
Before becoming a public health nurse, Mari had worked as an oncology nurse and later as a hospice nurse while in home health. She had been present when her patients were grieving their cancer diagnosis and as a hospice nurse, she had been present when families mourned the passing of their loved one.
Mari would come to realize that her journey would put her in both places. Mari grieved for what happened to her and how it negatively impacted her loved ones.
She would also be present to openly mourn the Mari who was gone.
Mari soon realized that she would struggle with processing the enormity of what happened to her, the collateral damage it caused and what would be her next move.
Being creatures of habit, Mari would have normally “problem solved” while being in motion. Now that she was paralyzed, she wasn’t wired to sort things out being still.
Mari’s personality and career as a nurse centered on being a caregiver and now, she was in a position of being the recipient; this role reversal was very difficult for her to accept.
All these reminders of who she used to be, while trying to find and come to terms with the person dwelling in her brokenness.
As Mari continued to work on her physical self, she began to experience triggers that would bring about flashbacks followed by panic attacks.
The first time it happened was at the local swimming pool.
Mari was trying out a snorkel and face mask to help her breath while floating on her stomach. Mari remembers the sound of the air going through the snorkel triggering her memory of being tethered to the ventilator she had been dependent on for three months. Eventually, various memories, smells and sounds began to surface.
Mari remembers that “the flashbacks were more than just a memory; they would put me back into the traumatic event.” Peter and Mari decided it was time to see a therapist that specializes in PTSD.
PTSD or post-traumatic stress disorder is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. (MayoClinic.org)
Peter began his research to find a therapist who specialized in trauma. His search would lead them to Oregon.
The Tardiffs’ would drive the five-hour round trip to Oregon once a week for one year.
Eventually, Mari’s therapist would recommend a therapy called Eye Movement Desensitization and Reprocessing (EMDR).
EMDR is an interactive psychotherapy technique used to relieve psychological stress. It is an effective treatment for trauma and post-traumatic stress disorder (PTSD).
Initially, Mari did not want to participate for fear that she would have to relive her traumas.
Mari’s therapist, who was trained in EMDR therapy, took two therapy sessions to work out an agreement with her so she would have a signal in place if she felt in danger and needed the therapist to stop. Basically, the agreement was to gain Mari’s trust.
The EMDR session transported Mari back to Intensive Care.
When the therapist asked Mari what she was witnessing, she answered “My husband, sons and mother are at my bedside crying”. The therapist then asked Mari what was she feeling? Mari replied, “guilt for the pain my decision to drink the raw milk caused.”
Then Mari said, “I’m not in ICU anymore” and with that her therapist told her to open her eyes and continue to repeat and imprint that she was no longer in ICU.
Although Mari was now home, her brain was still reacting to the numerous hallucinations that had transported her to other places only to wake up and realize she was still in the intensive care unit.
EMDR proved to be a major turning point for Mari.
Now that her subconscious was established in the present, she no longer experienced PTSD episodes.
Peter and Mari would eventually sell their business and home and make the move to Oregon. Mari’s mother passed away in 2011 and it was time to start a new life.
The move offered Mari more options to encourage her in her recovery. Mari and Peter went to couples counseling, they took a six-month mindfulness course, they joined the YMCA and Mari started to build her body with deep water aquatic classes.
As she grew stronger in the water, she purchased an adult trike and worked even harder to build up to a one-mile ride.
She went to a hand therapist and a physical therapist who specialized in gait training, she tried acupuncture, light therapy, Feldenkrais therapy just to name a few.
Mari still had her mind set on her goal to walk again.
As Mari’s body healed and grew stronger it became a painful reality that her nerve damage and atrophied muscles were beyond repair: she was left with paraparesis, which is the partial paralysis of both legs. It is characterized by progressive weakness and spasms in the legs.
To quote Charles Dickens: “Never say never.”
When every option had been exhausted, Mari decided to revisit her Orthotist.
On the day of her appointment, her Orthotist was detained so she was seen by another, named Justin.
Justin sat patiently and listened to Mari’s story. He asked why she was wearing Ankle Foot Orthoses (AFO) and had never been fitted with KAFOs to support her knees? He gave her brochures on various products.
Mari and Peter made a return appointment with Justin to further explore options. While Mari was Googling the suggested KAFOs found in the brochures, a video came up of a woman in Europe walking with what looked like bionic leg braces. Mari called the number on the site and made contact with the fabrication department who put her in touch with a salesperson.
The leg brace she had found is a computer controlled orthotronic known as C-Brace. The computer uses a sensor to control both the stance and swing phase allowing the wearer to walk with a normal gait.
The C-brace is a German product that was just making its way to the US. Mari immediately contacted Justin who had never heard of the product but was familiar with the company that made them.
After several months and much communication, the day had finally arrived to try the prototype.
At this point eight years had passed, and Mari’s brain registered fear each time she attempted to take a step.
The C-brace does not walk for the wearer but is driven by the user’s hip flexors. Fortunately, the deep-water aquatic classes and bike riding had developed Mari’s hip flexors.
In May of 2016, Mari received her custom braces. Initially … it was a disaster and Mari had buyer’s remorse. Thankfully, her current PT, Dan was enthusiastic as well as a task master.
Today, twelve years later, Peter and Mari have settled into their new normal. With the help of her braces and canes Mari typically walks three or four days a week, 2-3 miles each time.
She upgraded to a pedal assist trike and twice a week does ten-mile rides. Her longest ride to date is twenty-two miles.
With the current pandemic (2020), Mari cannot use the YMCA pool so she recently started rowing on a stationary rower and is working to continue building up her strength and endurance.
She bought a used car, and had it outfitted with hand controls. Although she lost her fine motor movement in her hands, she has adapted and enjoys cooking again.
She and Peter have resumed traveling, visiting their sons and grandchildren.
When Mari isn’t wearing her braces, she uses a wheelchair in her home. She still depends on Peter for various tasks; however, she continues to work towards regaining her independence.
Bottom line - be informed and forewarned.
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