By Zoe Bator
The air was swift, the cedar was low, and it was a beautiful day in Austin, TX. It was 2007 and spring was in full form, Tracie Austin decided it was a nice day to go for a walk in Zilker Park. As the neighborhood kids took advantage of the playground, swinging and screaming with joy, she pushed her five-year-old daughter Katie in a cherry red wagon as she watched the other children swing on the monkey bars and race to beat each other to the top of the slide, wondering when her daughter would be able to do the same.
Katie had only recently been hospitalized for Guillain-Barré syndrome (GBS) — an autoimmune syndrome that affects less than 3,000 Americans annually, of which I was also one. As she approached her first day of kindergarten, Katie, a naturally upbeat kid, was confined to her stroller as she regained the strength to walk. After taking her first steps only four years prior, the ability was abruptly stripped away when the paralyzing effects of GBS took hold of her.
Before her first day of kindergarten, Katie was a regular toddler: carefree and playful. She contracted a stomach virus in early March of 2007 which, presumably, was not atypical of a young child surrounded by an amalgamation of germs in playpens and daycares. Tracie assumed it was something that they could cure with a routine trip to the pediatrician. But, the symptoms did not go away.
“The virus settled somewhere on her spinal cord which sparked the Guillain-Barré. However, we did not figure that out until much later,” Tracie said.
On a normal Sunday in their family home, Katie watched early morning cartoons in her cotton long-john pajamas on the couch — her feet just barely off the cushions. “Mommy, my legs keep falling asleep,” Katie fussed.
Tracie thought immediately that it was unusual for her daughter to be experiencing tingles in her legs, but didn’t know how that was correlated to the virus.
“I felt like there was nothing I could do. The doctors told me it was so many different things,” Tracie said.
Even just chalking it up to gas bubbles, the doctors were unable to properly identify what was impacting Katie. Over the span of a few weeks, as Katie became weaker and weaker, Tracie took her to multiple doctors and an ER in South Austin, all of which were ultimately unsuccessful in diagnosing Katie. It’s possible that the doctors assumed she was hyperbolizing her weakness as she was merely a five-year-old little girl.
Guillain-Barré is a neurological disorder that was first discovered in 1916 by Georges Guillain and Jean Alexandre Barré. It is typically a subsequent response to a respiratory or gastrointestinal viral infection where one’s white blood cells mistakenly attack the nerves instead of the virus. It’s often elusive and hard to detect. With it being rare in nature, research for early detection can be lacking.
Later in 2011, 41-year-old Shane Sumlin started to feel an onset of weakness that was unprecedented to him. A Southern man from Louisiana, he had gotten used to being strong — chopping wood, throwing a football, putting steaks on the barbeque.
“I was a normal man — whatever normal is — wife, kids, never had any health issues,” Shane said.
He had always been a family man and a provider for his wife and kids as a financial advisor. Even in the face of turmoil, he found solace in being strong for others. Suddenly, that was no longer an option when he fell victim to the impervious syndrome.
“I woke up one morning and went to work. I felt a little weakness in my hands,” said Shane. “I woke up the next morning and was completely paralyzed from the neck down.” Barely able to wiggle his arms, he needed assistance to be placed in the car and drive to the ER. His brother-in-law helped lift him over his shoulder and into the backseat of the car, something his wife was unable to do.
What then ensued was a 78-day stay in a local Louisiana hospital, which to Shane felt like forever.
Almost a decade later, in 2020, I had my run-in with Guillain-Barré. I had just begun my freshman year of college, confined to my dorm room for online classes as the Covid-19 pandemic was still in its infancy, when I became acutely sick.
“Everyone gets sick in the fall,” I told myself. “It’s flu season.”
I tested positive for Covid, and my university told me I had two options: either move from my dormitory to self-isolate in a nearby hotel room which they had reserved for these instances or go home to Dallas. To this day, I am so grateful I chose the latter.
At the time, I was incredibly confused how Covid was affecting me so intensely. As an 18-year-old able-bodied person, I thought that the virus was supposed to come and go like a small bump in the road that seems to be over as soon as it happens — not something that completely ruptures your engine and leaves you totaled. As I made the drive from Austin to my family home in Dallas, I knew there was something more serious ailing my body. Pulling over multiple times out of sheer weakness and exhaustion, I felt like my body had aged tenfold overnight — like I had developed Benjamin Button syndrome in my sleep.
After a few days of quarantine in my childhood bedroom, I finally received a negative Covid test result from my local urgent care.
“It’s over,” I thought naively.
Over the next few days, my prediction of recovery proved to be the exact opposite. The day after the negative test, my family made a reservation at my favorite southern restaurant to celebrate my homecoming and the eradication of my sickness. I tried to get ready, but my body felt confined to my pajamas, and I quickly realized that I felt nowhere well enough to go.
“You guys go without me. Just bring me back some chicken and waffles,” I told them, still desiring the carb-heavy homestyle cooking that I had desperately been missing. When they came home, I started to eat my food. After almost an entire semester of dining hall meals, I was eager to feel the synesthesia of my hometown. I tried so hard to enjoy it, but, suddenly, it became grueling to chew and extremely difficult to swallow.
“We need to take you to the hospital,” my mom urged.
The first night I arrived at the ER, I could barely walk inside.
Even though I could more accurately explain the weakness I was experiencing than five-year-old Katie, the ER doctor still seemed confounded. I walked — or tried to — in a line for him as my symptoms were still setting in.
“I’m walking like I’m drunk,” I said, trying to make light of the situation.
Around midnight, the nurses moved me into the scan room for my MRI. As they placed me into the tubular machine, and put headphones emitting ambient waves over my ears, they urged me not to move to ensure the most accurate reading.
“Ironic,” I thought. “That’s not very possible anyway.”
After an hour of listening to the alpha waves on my hospital headset — an effort to calm and release tension from my body — the nurses were still deciding where to put me. The hospital was at capacity due to an influx of Covid-19 cases, so there were no available beds. After another hour or so, they found a set-up for me in what was typically used as a triage space. I spent the night on the cushioned medical examiner’s table that reminded me of the one in my pediatrician’s office, and my mom slept in a neighboring chair.
“Tomorrow will be better, hopefully. We’ll find out some more,” my mom said as she draped the thin hospital blanket over herself and prepared for bed.
The next day, we were also told there were no rooms available yet. Feeling like Mary and Joseph at the inn, my mom and I didn’t know what to do. What do you do when health care professionals are trying their best in a time of exacerbated sicknesses?
By the time I got my spinal tap, I couldn’t move my fingers or make a fist. Before they drained my spinal fluid, I was rolled into the lab on my wheeled hospital bed, laying motionless and confused. There was only one doctor working in the lab. He was a lithe man, probably just under 140 pounds, and not very muscular. He asked me to roll over onto my stomach and then onto a metal slab for the collection.
“I can’t really move much. I’m going to need help,” I told him.
He rolled me over from off the hospital bed with some strain. Although I was merely a 120-pound teenage girl, I was completely dead weight.
After the collection, he asked me to sign a paper and handed me a pen; I was similarly confused.
“I thought we’d been over this,” I said in my head.
He moved my hand over to the paper, and I made a measly scribble on the signature line. “That’s all I can do,” I said.
He then took my hand and moved it like it was the plank on a ouija board, guiding it along and seeing how much I could muster.
The detection of Guillain-Barré typically follows this pattern. An MRI to check that it’s not cancer or something equally as scary, a spinal tap to check for lesions and elevated protein levels, and can even go as far as implementing electromyography, which sends electric shocks to the nerves to detect a reaction. In Katie’s case, they had to explore all three. When Katie started to feel symptoms and told her mom that her legs were “asleep,” her mom thought she was simply being dramatic.
“I even posted on Facebook, jokingly saying, ‘My daughter’s walking like she has polio,” Tracie said. “I had no idea it was actually something so serious. That’s when a neurologist friend of mine reached out and informed me of the severity of the symptoms.”
Katie’s symptoms were very slow at the onset. Guillain-Barré tends to immobilize its host within a couple weeks, but for Katie, it was longer. She started to feel unwell in March and within four weeks, she could no longer walk.
Tracie then took Katie to Dell Children’s Medical Center, eagerly awaiting answers. “I told them I wasn’t leaving until it was figured out,” said Tracie.
Historically, there has been a lack of research and awareness of Guillain-Barré syndrome which leads to a long wait until the patient receives proper treatment. Elizabeth Emerson, former board member of the GBS Foundation International, told me about the often biased assessment of women experiencing GBS. I found this particularly pertinent as it relates to the gaslighting of women’s symptoms for centuries. It wasn’t all that long ago that doctors creatively treated the now-defunct “female hysteria.” Where hysteria often meant irritability or loss of desire for sex.
Although we’ve progressed exponentially from these times, women still tend to feel that their symptoms are downplayed by doctors, which can ultimately prolong proper treatment of ailments while symptoms are expedited. According to a recent study by the New York Times, 83% of women said they had experienced their symptoms being downplayed by doctors.
A doctor will typically ask a patient to rate their pain on a scale from one to ten, to accurately assess what pain meds to prescribe them and to properly track their illness. When I rated my pain, I never said ten even though I couldn’t imagine a worse pain. For one, I was scared of the hallucinogenic effects of opioids, but, I was also subconsciously wary of not being taken seriously — however silly that sounds.
Michael Coleman, actor from ABC’s Once Upon a Time and GBS survivor, had to take his health into his own hands when doctors kept dismissing the weakness in his legs. Finally, after urging for testing, he got a spinal tap where they detected the syndrome. Playing one of
the dwarfs from Snow White named ‘Happy,’ Guillain-Barré made Coleman temporarily lose the ability to form the character’s signature smile.
Meanwhile, Katie and Tracie sat in the waiting room of the ER, eagerly awaiting answers and the eventual promise of healing. Katie tried to move her feet in circles as they dangled from the thick plastic chair she was sitting on, but, with all her exertion, she could only move them about an inch. Tracie looked around the waiting room at the other parents — all in distress over their kids’ health.
She waited for their name to be called and prepared to stand her ground and not let Katie’s symptoms be dismissed once again.
There are many words to describe types of pain to a healthcare professional — cutting, cramping, shooting, etc. Properly assessing pain to a doctor can help them identify the source of the pain and provide an accurate diagnosis. However, with a limited vocabulary and an overwhelming sense of discomfort, Katie wasn’t equipped with the proper tools to communicate her symptoms.
“We finally figured out that it was the ‘pins and needles’ sensation that Katie was experiencing,” said Tracie.
These tingles signify the nerve endings being broken as GB takes its paralyzing effects. The syndrome routinely starts in the feet and works its way up the body, eventually making it impossible for the muscles to carry out essential processes of swallowing and even breathing.
I remember when the nurse told me I wouldn’t be able to eat or drink because of the possibility of asphyxiation. That was around the time that I was moved to a room on the Covid floor as I had contracted the virus less than 14 days prior, which meant my mom was no longer allowed to stay with me. In our specific case, this felt ridiculous because I needed her to help me with basic functions that the overextended nursing staff might not be able to do. For example, at this point I had lost all dexterity in my fingers, so I couldn’t press the ‘call nurse’ button on my bed’s remote. After communicating this to a few nurses, they graciously let her stay with me.
I needed her there. I was in a perpetual state of distress at this point, looking at how much it was affecting her and her losing the ability to say the words, “It’ll all be okay.” Even so, her
mere presence was like a security blanket to me.
My fifth day in the hospital, I had already felt like I’d seen everything on cable TV. I missed being busy and would’ve traded the stress of a million final exams for the state I was in.
“Mamma Mia is on,” my mom said to me.
“I’ve actually never seen it,” I admitted.
As I watched Amanda Seyfried bust out some amazing notes and Pierce Brosnan try to sing some not as amazing ones, my symptoms began to culminate. I was unable to breathe. The virus had made its way to my lungs.
I watched as my pulse oximeter went from 96% oxygen saturation down to 80% and eventually to 60%. Meanwhile, the nurses were alerted and came expeditiously to my room to rush me to the intensive care unit.
I remember waking up a week later. I remember the feeling very viscerally, maybe because an intubation tube being removed feels like hell. The doctor standing in front of me had the largest metal belt buckle, just like my grandpa. It felt like a rebirth.
In many ways it was. I was on a long road back to regain my most basic abilities. The estimates I’d received from my doctors and from survivors was around a year of recovery.
Recovery is a fluctuant feat. From the hospital, GBS survivors are typically relocated to rehabilitation facilities for inpatient treatment. Then, they can be approved to be released for outpatient physical therapy.
As Tracie prepared Katie for her first day of kindergarten, she knew the happy and sentimental day where a parent drops their child off at school for the first time had an unexpected shadow on it as Katie required assistance not needed by the other children.
The kids sit around the rainbow carpet on the first day of school and have storytime. Katie listens intently in her stroller on the perimeter of the circle as the other kids keep turning to look at her with confusion. A few of them call her a baby — not able to understand the severity of Katie’s recent experience. Guillain-Barré syndrome does return its host to a child-like form, where all learned ability is taken away from the body to the point where basic functions like drinking and swallowing need to be facilitated by a gastroenterologist.
Regardless, all Katie knows is that she’s being made fun of, she doesn’t fully grasp the gravity of everything she’s been through. How could she? She just learned the alphabet.
Around this time, Tracie went back to the hospital where they downplayed Katie’s symptoms and told them of the severity of her case.
“My daughter could have died,” she told them indignantly.
Today, Katie is a 21-year-old working in the service industry, adapted to the fast-paced environment and quick on her feet. She has not experienced any major illnesses since her experience with GB in 2007. When Covid-19 hit, she expected she might get it as someone who comes in contact with a revolving door of customers throughout her day, but she never did. Still, she’s likely to always have a fear that GBS will return.
Shane is back at work and an active member of the Guillain-Barré Foundation International board. Despite being offered a substantial amount for disability unemployment, he missed his job and wanted a return to normalcy.
I am wrapping up my senior year at the University of Texas at Austin with degrees in Journalism and Textiles/Apparel, even using my fingers to sew and construct garments — something I thought I would never be able to do again.
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