PEOPLE writer and reporter Brianne Tracy was 23 years old when she was diagnosed with Guillain-Barré Syndrome, a rare neurological disorder
On May 20, 2018, my world turned upside down.
That day, I was supposed to be packing for an upcoming assignment in Hawaii to cover a shoot for Discovery Channel’s Shark Week. Instead, I found myself lying on a bed in the emergency room of UCLA’s Medical Center in Santa Monica, California, barely able to walk or talk. It was my first time being a patient at a hospital, and I was shaking as I waited for a doctor to come in to give me some explanation as to why my body seemed to shut down out of the blue.
Just the weekend prior, I had been in Las Vegas celebrating a friend’s birthday. When I returned home to Los Angeles on Sunday night, I noticed a tingling and numb feeling in my toes. At the time, I had chalked it up to simply being an after effect of wearing heels all weekend. So I kept on going to work as usual and thought to myself that the feeling would pass soon.
Progressively, though, my body started to feel weaker and weaker, and I noticed the numbness and tingling feeling spread to my fingers. When I went out to dinner with a friend who was in town later that week, I noticed things were tasting off as I ate my pizza — which is pretty telling coming from a girl who grew up in the Bronx, New York.
By the end of the week, I could barely walk; each time I tried, I felt like I had lost all sense of balance. At one point, I could barely steady myself enough to get a pair of flip-flops on.
When things started getting worse, my mom — who still lives in the Bronx — insisted that I go get checked out at a local urgent care. After explaining my symptoms to the doctors there, they boiled it down to an ear infection and anxiety, and they sent me on my way with a prescription for the anti-anxiety medication Clonazepam, or Klonopin. They completely ignored my concerns about the loss of balance I was feeling.
Nothing seemed to improve after the first visit to urgent care, and my symptoms only got worse. Within a day, I could barely lift myself out of bed or walk down the flight of stairs in my apartment. I decided to go back to a different urgent care location, and they told me they could take blood but that it would take a few days to get the results. Given my condition, they recommended I go to the emergency room to get faster results.
So on May 20, 2018, I was diagnosed with Guillain-Barré Syndrome (GBS).
If you find yourself asking what that is — don’t worry — I had no idea, either. GBS is a neurological disorder in which the body’s immune system mistakenly attacks the nervous system. It’s rare and is estimated to affect only about one in 100,000 each year, so there’s not all that much research about it out there.
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My diagnosis came after my emergency room doctor took a series of blood tests and then had me do an hour-long MRI of my brain and spinal cord to rule out Multiple sclerosis, which runs in my extended family. When the MRI results didn’t show any signs of MS, the doctor told me he suspected that I had GBS but that he’d have to do a lumbar puncture, or spinal tap, to know.
When the results of the lumbar puncture returned, they showed that my spinal fluid had more protein than usual, which is what determined I had GBS. The doctor told me that they’d need to keep me at the hospital and start treatment — which he said could take days, weeks or even months — right away.
I had been a healthy and active 23-year-old at the time and thought, “How could this have happened?” To this day, doctors still don’t have a definitive explanation as to how I got GBS, since I didn’t have a bacterial or viral infection — which are both common triggers — prior to my diagnosis.
All while they were running tests, a good friend of mine stayed in the hospital with me and called my mom, who took the first flight out to L.A. from N.Y. as soon as she heard they were doing the lumbar puncture. She arrived in my hospital room around 1 a.m., and I couldn’t have been happier to see her.
The next morning, I had a catheter inserted into the veins of my neck so that my doctors could begin a procedure called plasmapheresis, or plasma exchange. During plasmapheresis, tubes from a big centrifuge machine are connected to the catheter to filter out unhealthy plasma in the blood in exchange for healthy plasma, or a plasma substitute. This is done in hopes of removing the antibodies in the plasma that are attacking the nervous system and to prevent the body from producing more harmful antibodies.
I went through an hour-long session of plasmapheresis every day for the next five days. When I wasn’t having the procedure done, I was working with occupational and physical therapists to try to regain some movement back, as much of my body and facial muscles had become paralyzed, or lying in my bed watching my guilty pleasure: Lifetime movies. My eyelids had become so weak that at night, I would have to use surgical tape to close them because I didn’t have the strength to on my own.
At the end of the five sessions, doctors saw a slight improvement and decided it would be best to send me to an in-patient rehab nearby to start working towards regaining some of my muscle mass back. Since I was rendered immobile, I had lost a lot of my muscle mass and weight while lying in bed day after day. What didn’t help either was the fact that the muscles in my mouth were so weak that I couldn’t eat anything solid, and I had a diet that consisted mostly of smoothies.
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When I arrived at the in-patient rehab, I was still extremely weak and had to be carried in on a stretcher. I lasted one night there before aspirating while trying to eat lunch the next day, and soon I was rushed back to the hospital’s Intensive Care Unit.
I went through another five rounds of plasmapheresis, but I soon started developing other problems. My heart rate had begun escalating way above a normal resting rate, which is fairly common in GBS patients, and then I started having trouble breathing. My doctors had suspected the GBS was starting to attack my respiratory system and told me to prepare myself for the possibility of being put on a ventilator.
“A ventilator?” I thought. “At 23 years old?!” This had become my worst nightmare.
I held out as long as I could, but it started getting so hard to breathe that I felt I had no choice but to be put on the ventilator. Ultimately I made the decision myself, but since I was too weak to talk at the time, I had to mime that I wanted to be put on it, which was interesting watching my mom and my doctors trying to figure out.
The next eight days on the ventilator were definitely the most difficult, though my memory is a bit fuzzy when I think back on that time — and I’m not sure whether that’s due to the brain’s coping mechanism or because I was sedated with micro-doses of fentanyl to manage the pain.
When I finally was taken off the ventilator, the doctors started another GBS treatment called Intravenous Immunoglobulin, or IVIG, therapy. Immunoglobulin is part of the blood’s plasma, and it has antibodies to fight germs and disease. When people donate blood, this part can be separated out. During IVIG therapy, the healthy, donated immunoglobulin is administered through an IV to help strengthen the immune system.
After five days of IVIG therapy, I started to see small improvements in regaining the movement back in my arms and legs. My physical therapists would have me stand up and walk a few steps with an assistive walker each day, and each day I’d walk a little further around the hallway of the hospital.
Soon, doctors thought I was well enough to try the in-patient rehab again. This time proved to be more successful, and I slowly started to get better with an intensive schedule of physical, occupational and speech therapy for several hours each day over the course of two weeks.
Though the physical impacts of GBS had started to regress, it was the emotional impact that was really taking a toll on me. GBS stripped me completely of my independence to do the smallest, every day tasks on my own, like showering, standing up, brushing my teeth or even going to the bathroom.
Some mornings while I was in rehab, I would just break down in tears. My physical therapist helped remind me every day, though, that “a year from now, you’ll look back on this time and see how far you’ve come.”
After I completed my two weeks of in-patient rehab, I returned home to N.Y. with my mom so that she could go back to work. We lived with my aunt in upstate N.Y. during the next several months, and she and my cousins helped my mom with bringing me to an outpatient rehab three times a week to do physical therapy. There, I went from starting on a stationary bike to being able to walk on a treadmill to doing full speed on an elliptical.
About five months after my diagnosis date, I returned to my dream job at PEOPLE and have gone on to interview some of my favorite stars, cover major events like the Grammys and Oscars and write countless stories for both digital and the magazine. Aside from experiencing a little bit more fatigue than before, I can walk and talk exactly like I used to.
Now a year and a half out from my diagnosis, I look back on this difficult time of my life with so much gratitude for the incredible people in my life, including my family, friends, PEOPLE colleagues, neighbors and caretakers. From my mom sleeping upright in a chair beside me for the duration of my hospital stay to the nurse who bought me my favorite shampoo and conditioner with her own money when she saw how bummed I was that the hospital only had no-rinse shampoo caps, I could go on and on about the acts of kindness that pulled me through.
In a little more than a week, I’ll be adopting a french bulldog puppy, who I hope to train to become a People-Animal Connection therapy dog so that I can bring her to sick patients at UCLA’s Medical Center in Santa Monica, where I was treated. During my time there, the therapy dogs that would come by would bring me so much happiness during such a bleak time — and I hope to pay it forward by bringing that joy to someone else.
In the end, I might not have made it to Shark Week in Hawaii, but I’ve kept with me something I learned from watching the show from my hospital bed — that sharks can only swim forward. That’s how I like to look at my life now; there’s no going backward, only forward.
Plus, now I can joke that I am — quite literally — one in 100,000. For those also suffering from Guillain-Barré Syndrome, know that you’re not alone.