Many are struck out of nowhere with their autoimmune disease symptoms and diagnosis.
Holly’s Guillain-Barré Syndrome symptoms quickly progressed within 72 hours, leaving her paralyzed from the neck down and requiring a ventilator for breathing. While in the ICU, she began to slowly recover with the help of a survivor’s visit and the inspiration of getting home to her newborn daughter.
Despite initially feeling weak and wanting to give up, she persevered and eventually breathed and walked on her own again, feeling stronger than she ever had before.
I had never heard of Guillain-Barré Syndrome (GBS) when I was first diagnosed with it 12 years ago. I had gone to the emergency room with weakness in my legs, severe pain in my neck, and tingling in my fingers—I thought I had a pinched nerve. My symptoms progressed very quickly, which thankfully made it easier for the doctor to recognize it, and when he said, “I think you have Guillain-Barré syndrome,” I remember thinking, “I have a newborn baby at home, so please just give whatever medication I need so I can leave.” Unfortunately, that didn’t happen.
GBS is a rare autoimmune disorder that affects the peripheral nerves (all the nerves excluding the brain and spinal cord), causing weakness and paralysis. It can be very severe.
This weakness spread through my body like wildfire
and within 72 hours, I was completely paralyzed from the neck down in the ICU, breathing through a ventilator on life support.
It was devastating to me and, of course, my family and friends, especially when there were no signs of recovery for so long. I had just given birth to my daughter Casey by c-section three weeks prior, which was likely my trigger, and I felt utterly hopeless that I was ever going to make it out of this and get back to my little girl. I felt angry and robbed of my life as the weeks passed, and I lay completely paralyzed in ICU.
I remember thinking, “This can’t be happening. This sort of thing only happens to other people— people on the news. Not me.”
My life as I knew had been taken away from me in the blink of an eye.
My friends and family had also never of GBS. Many of the doctors and nurses who cared for me had only seen a case or two in their entire careers, if at all.
I was paralyzed, trapped in my own body, in the most pain I’d ever experienced in my life, unable to communicate other than by having my family members point to letters on a communication board. I would blink my eyes when they pointed to the letters I wanted to use.
I’d spend quite a while forming sentences. I remember one time shaking my head back and forth to motion my mom to grab the communication board and having her spell out C-A-L-L O-P-R-A-H. Call Oprah. I remember thinking, “Oprah needs to come here right now to see what this rare disease did to me. Now, I was on a lot of drugs at that time and actually believed that they could just pick up the phone and have Oprah by my bedside in a matter of days.
But it wasn’t just the drugs. Even in that fragile state, something inside of me knew at that time that I wanted people to know more about GBS.
I went from being completely healthy to breathing on a ventilator in days, uncertain if I had a future at all.
I knew then that I wanted my story to bring awareness to this rare disease that devastated my life.
For weeks and weeks, I struggled, with emotional and physical pain, at times certain I would never get out of ICU. To lift my spirits, my nurses asked another GBS survivor named Kit to visit me. Like me, he had a severe case of GBS and had been on a ventilator, and not only had he been in the same hospital but in the same room I was in. And when he walked into my hospital room completely recovered, for the first time, I believed that if he could do this, then maybe so could I.
Kit brought along with him a sign that he immediately taped to the wall right in front of my hospital bed. It read:
“Courage doesn’t always roar. Sometimes, it’s the soft voice at day’s end saying I will try again tomorrow.”
And for the first time in my journey, I felt understood by someone else. Because prior to that, I didn’t feel strong. I had wanted to give up many times, pleading with my nurses to shut off the machine and let me die. I was ashamed that I didn’t feel strong the way everyone thought and was telling me I was. That quote reminded me that I didn’t have to feel strong to get through this. I could do it with tears in my eyes, whispering to myself at the end of any other horrific day, saying I’ll try again tomorrow.
My daughter, of course, was my biggest inspiration of all. I hadn’t even had a chance to be a mother to her yet, something I had wanted to be my entire life, and I knew I had to fight for that. There were many things I still needed to do, like take her on her first walk, take her to her first day of school, watch her graduate, and dance with her at her wedding. My daughter kept me going.
Over time, I improved very slowly. And very slowly, my lungs got stronger, and I started to wean off the ventilator. At first, it felt impossible. Seconds off of it felt like I was underwater about to run out of air. I remember thinking, “I can’t do this. I’m never going to be able to do this.” I had to last over 48 hours off the ventilator before they would take out the tube in my throat, and I could barely last a few seconds. But I looked up at the sign in front of me every day and promised to always try again tomorrow. I went from lasting 1 minute to two minutes to an hour to two and so forth.
Weeks later, I accomplished that goal. I could finally breathe on my own, had the tube removed from my throat, and left ICU after 70 long days. After realizing what I had overcome, it sparked this fire in me. I had done something I thought was impossible.
I promised never to doubt myself again.
From there, I learned how to use my body again. How to hold cutlery to feed myself. To brush my hair and teeth. To take care of myself. To hold my daughter in my arms. I eventually moved to a rehab hospital where I learned to walk with a walker, then later a cane, and eventually on my own. I went home after 126 days in the hospital when my daughter was almost 6 months old.
I have continued to use that “Courage” quote in my life, and it’s followed me throughout my recovery from GBS. I first did outpatient therapy, where I met an incredible physiotherapist who convinced me he could get me even stronger than I was now. He taught me how to exercise, and I fell in love with the way it made me feel. I eventually got into running on a treadmill for a few minutes at a time, which was awkward and hard, but over time it got easier. When I finished with physiotherapy, I knew my recovery was on me, and I had to put in the work.
I got fitness bands and exercised from my couch. I went for walks every day with my daughter in her stroller. I wasn’t back to normal, I couldn’t walk very far and had trouble with balance and strength, but at least I was home.
At one point, I decided to start running outside, and I remember one of the first few times I did it was so painful and challenging that I had to stop halfway through and walk the rest of the way home. I remember at that point just feeling defeated, feeling like I should stop and give up—but at least I could walk. I wasn’t even a runner before GBS, did I really need to run? But I knew I wanted to play tag with my daughter one day. I thought back to that sign in the ICU and reminded myself I could just try again tomorrow. So that’s what I did.
I learned to rest but also to get back up and go again.
Over time running got easier until I was eventually running 5km every few days. I got into strength training, then the best shape of my life, and later was certified in fitness training all because I promised myself to keep trying again tomorrow.
I still remember the first GBS conference I went to back in 2011, the year I was diagnosed. It happened to be in Edmonton, where I lived. I walked in very slowly and awkwardly because I was still recovering, and I instantly felt this warmth and comfort, and sense of community. For a long time, I felt very alone, even though I had an incredible support system who was by my side every step of the way, but they didn’t have GBS, so there was no way they could truly understand what I was going through. But at the conference, I met all these people who understood exactly what it was like. And then to meet the doctors and neurologists who were passionate about GBS and understood the disorder in ways I hadn’t seen from other healthcare workers was very heartwarming.
After I recovered, I knew that I wanted to be a part of the foundation and help raise awareness and provide support. I had to give hope to others the way Kit had done for me. While GBS was one of the worst experiences of my life, and while I still struggle with residuals such as nerve pain and fatigue, I still look at it as of the best things to happen to me.
My diagnosis changed my entire view of the world and put me on a new path in life.
My mom had taken many videos of me in the hospital, which I spliced together into a YouTube video that ended up going viral. And it was then that I knew I was diagnosed with GBS for a reason. People were reaching out to me from all over the world, people with family members recently diagnosed, survivors who had GBS 20 years ago and had never talked to another survivor, and even doctors and nurses thanking me for sharing my story. This encouraged me to write my book Life Support: Surviving Guillain-Barre Syndrome – A Mother’s Story of Hope and Recovery, published in January of 2023.
I was brought up believing that everything happens for a reason. And I see that for my case, I’ve been able to bring awareness all over the world through my videos. I’ve been able to visit patients in the hospital the way Kit did for me. I’ve been able to educate doctors and nurses, the ones who held our hands and wiped our tears but who didn’t always understand our pain.
For some autoimmune survivors, they may also believe that everything happens for a reason and that their diagnosis changed their life for the better. But it’s also okay not to believe that. It’s okay if you have to search deep to find a reason yourself.
We certainly didn’t have any control over what happened to us before, but we can make the choice to turn our pain into power.
To search for the blessings within in our journeys.
I personally have this intense gratitude for getting to be a mom to my daughter again, who is now 12 years old. We have an incredible bond, one that I’m not sure we would have had we not gone through what we did together. So that’s something special that I got from my pain.
So, whether you are new in your autoimmune journey or have been living with the after-effects for years: promise yourself that you will keep fighting, that you will remember that courage doesn’t always roar, sometimes it will be the soft voice at day’s end saying I will try again. Never give up on yourself, no matter how hard things get. Learn to listen to your body and rest, then get back up again. And promise yourself that you will try to look for the positives from your experience, even if it’s hard, so that you can turn your tragedy into something beautiful.
Because what I have learned, and I hope you have too, is that we are all so much stronger than we realize.
Life isn’t easy, but it’s most certainly worth it.