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An Unplanned Life

My Guillain-Barre Syndrome journey

By Holly Gerlach

Partially sedated in the Intensive Care Unit (ICU), I stared vacantly out the frost covered window, unfocused on anything in particular. My crying baby lay on a pillow beside me on my bed. I was breathing through a machine, but still aware of everything going on in my room. My husband popped a bottle of formula in Casey’s mouth, and tears welled up in my eyes. 

Partially sedated in the Intensive Care Unit (ICU), I stared vacantly out the frost covered window, unfocused on anything in particular. My crying baby lay on a pillow beside me on my bed. I was breathing through a machine, but still aware of everything going on in my room. My husband popped a bottle of formula in Casey’s mouth, and tears welled up in my eyes. 

I couldn’t breastfeed, hold her bottle, or change her diaper. I never imagined this is how I’d spend my first few months of motherhood.  

We were first-time parents. Casey was two months old. And I was paralyzed. Because of a rare disorder that hit me just three weeks after giving birth, I couldn’t reach out and touch my baby. The life support tube in my throat made it impossible to speak to her. I couldn’t breastfeed, hold her bottle, or change her diaper. I never imagined this is how I’d spend my first few months of motherhood.  

My husband was raising our daughter. Unsure of my future, he had taken a leave of absence from work. He came to the hospital every morning, placing Casey on my lap as soon as he arrived. He wanted to make sure we bonded. During the nights, while I struggled through severe anxiety and intense tingling nerve pain throughout my body, my husband was at home alone, waking up every few hours for late-night feedings and diaper changes.  

Holly and her daughter Casey in the ICU

Six weeks earlier, I came to the hospital with weakness in my legs and sharp pain in my neck. I thought I had a pinched nerve. I was sleep-deprived and sore from my c-section, but otherwise healthy – or so I thought. Within hours, I could no longer walk. The throbbing ache in my neck grew unbearable. Tests confirmed a disease I’d never heard of — Guillain-Barre Syndrome (GBS). My immune system was attacking itself, paralyzing my body. Before I had the chance to grasp the severity of my condition, I went into respiratory failure and was rushed to the ICU.   

I spent the next ten weeks in one room in intensive care (ICU). The paralysis rapidly spread until I could no longer move anything below my neck. I had no idea if I’d take care of Casey again – let alone myself. I watched the clock day after day, struggling with uncertainty and panic, waiting for signs of improvement. Although doctors told my family and me that most GBS patients eventually recover, I found it hard to believe. My life as a new wife and mom felt over.  

Some days I came to terms with it, pleading with my family to turn off the machine and let me die.

During my anxiety attacks, I tried to imagine myself at one of my favorite places: the beach. I longed for the feeling of sand in my toes and the warmth of the sun on my chest. With tubes protruding out of my lifeless body, I promised myself I’d travel more if I made it out alive. But as my days trapped in that bed in ICU turned into weeks – and then into months, my faith deteriorated. The constant beeping sound of the ventilator reminded me how close to death I was. Some days I came to terms with it, pleading with my family to turn off the machine and let me die. Having faith that I would get better someday, they refused.

Gradually, I improved. The pain subsided, and I slowly regained movement. First, in my fingers and hands, then in my arms which finally allowed me to cock my wrist up against my baby’s bottle. With her snuggled in my lap, I fed her by myself. I started to wean off the ventilator, increasing the time I spent off it each day. At first, I could last only seconds. Then minutes, then hours. The tube in my throat was removed when I breathed on my own for seventy-two hours straight. I left the ICU after seventy days of hell. 

Then came physiotherapy. I had to relearn how to hold cutlery, drink from a cup, brush my hair and teeth; how to hold my baby in my arms. Working out using one-pound weights, a pedal exerciser, and a bar above my bed, my muscles grew stronger. Weeks later, I stood for the first time. I went from feeling overwhelmed, afraid, and weak – to confident, brave, and strong. I walked for the first time again along parallel bars, then with a walker and a cane, and eventually on my own. My husband walked alongside me with our daughter in her stroller. When I was finally strong enough, I was released from the hospital.

I also felt a duty to live differently. I had been given another shot at life. This time I would live it better.

Back at home, after a hundred and twenty-six days away, my husband and I tried to resume our lives. But life was different. Like a caged animal finally let free, the world around me seemed more precious. My eyes were now open to the scary truth that life could change in an instant. I’d think back to how fragile I’d been in the ICU when my husband took care of our child. Knowing I had accomplished impossible tasks – from weaning off the ventilator to learning to walk again, I now felt capable of conquering the world. I also felt a duty to live differently. I had been given another shot at life. This time I would live it better.

I pushed myself physically, exercising at home and going for walks – then runs. Before long, I was my old self again, completely recovered. Not only could I take care of my child, my strong legs could run for miles. Only a couple of years later, I crossed the finish line of my first 5km run. I was stronger than ever. But my marriage was not.   

Over the next two years, the everyday stresses of life affected us. Our marriage slowly deteriorated as the months on the calendar flipped by. We argued about everything, including, parenting differences, chores, money, and sex. We stopped showing each other love and appreciation. Resentment grew. We spent more time apart. When we were together, we screamed and cursed at one other. I tried to fix that; I really did. I know he did too. But our fights only became more frequent and toxic. We slept in different beds once the word ‘divorce’ was shouted. I cried myself to sleep most nights, wrestling with my emotions.  

My husband was more than the man I’d been with for over a decade. He was more than the father of my daughter. He was the man who sat beside my hospital bed, the one who cared for our newborn as I fought for my life. When I was recovering and had no use of my arms, he fed me spoonfuls of mashed potatoes. He held my hand when I learned how to walk. This man had gone above and beyond what was expected of a husband, exceeding the definition of ‘in sickness and in health’.  

In the end, I couldn’t stay with him out of obligation for all he’d done. Life was too short to spend it unhappy now. I had to leave.   

But none of that changed the fact that our relationship was broken. We were quickly moving from not liking each other to hating each other by the way we spoke to one another. I was emotionally depleted. Before going through GBS, I would have settled for a relationship that lacked respect. But now, as a new person, I saw the world differently. Yes, the sun shined brighter, the trees seemed more green and lush, but our marriage problems (both past and present) were also magnified – and I no longer tolerated them. In the end, I couldn’t stay with him out of obligation for all he’d done. Life was too short to spend it unhappy now. I had to leave.   

Life in my new apartment was an adjustment. It was small and run down – and eerily quiet. I was lonely and sad. Then I remembered all I had accomplished after having GBS. I was determined to rise from this. I learned how to cook. I made plans with friends. I discovered my love for fitness and immersed myself in the gym. I traveled often, to places like Las Vegas and Mexico, spending more time feeling the sand between my toes and the sun on my chest. I decided what I wanted in my life, which was to build a home for my daughter and me. I worked hard in my career as an HR Advisor, got a raise and saved up for a down payment on a condo. Twelve months later, after picking out wall colors and new furniture, Casey and I moved into our brand-new home.

Holly with daughter Casey

Then, I met a man who cherished life as much as I did. He encouraged me to take risks and live more adventurously. Before my illness, I was claustrophobic and afraid of heights. I decided to let go of my fears and enjoy what this world has to offer. Together, we climbed to the top of the Rocky Mountains, while I relished in my body’s strength. Over the years we made more memories; we zip-lined through the Mayan jungle and across Fremont Street in Vegas. The most thrilling thing I did was repel eighty-five feet into a teal blue cenote in Mexico. Instead of dreading the anniversary day of my diagnosis, I celebrate each year by doing something I’ve always wanted to do. I’ve painted a piece of art, and star-gazed through a telescope. I’ve gone indoor rock climbing. I took Casey to Disneyworld. One year we tore through the snow-covered forest on a sled pulled by dogs.

My journey taught me that life doesn’t always go as planned; sometimes in the most dire and challenging ways, it turns out even better.

As someone who just wanted to be a mom, I got so much more. My journey taught me that life doesn’t always go as planned; sometimes in the most dire and challenging ways, it turns out even better. I would have never experienced the things I have, had I not gone through what I did. Before GBS, I had a long list of items on my Bucket List. Now, nine years later, many are checked off. I’m not the same person I was before. I’m more driven, and brave. I’ve accomplished things I always wanted to. I live my life the fullest.

Going through GBS was worth it to me, and my marriage wasn’t a failure. Everything I experienced; the good and the bad, shaped me into the person I am today. The love my ex and I shared created our beautiful daughter. We have a ton of memories to look back on, including that crazy time I spent months in ICU, with him by my side. We overcame that together. We have found happiness again, which is all I ever wanted for us. Now, we live our own version of happily ever after – apart. 


About the Writer

Holly Gerlach is the author of Happily Ever After: My Journey with Guillain-Barre Syndrome and How I Got My Life Back. She is a Canadian-based writer and inspirational speaker, and mom in a blended family of five. Her articles have appeared in The Mighty and Love What Matters. She is also the face behind Holly After GBS, a social media platform she uses to connect with other illness survivors. She is currently at-work on her new memoir about turning her medical horror into a crusade of helping others. She enjoys spending time with her family and friends, and working out in the gym. For more information visit www.hollyaftergbs.com


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