My Paralysis Journey
Finding Strength in Surrender
I'll never forget the day my body completely betrayed me. In August 2017, what started as an innocent flu and cough quickly escalated into something far more sinister. Within hours, I found myself paralyzed, diagnosed with a rare condition called Guillain-Barré Syndrome (GBS).
GBS is a rare condition where the body's immune system mistakenly attacks the nerves, causing weakness, numbness, or in severe cases like mine, complete paralysis. Most people do get better, but the journey can take months or even years, with some experiencing lasting effects.
I'm May, and this is my story of betrayal, surrender, and ultimately, reclaiming connection with my body.
When Everything Changed
The illness struck with such rapid force that doctors misdiagnosed me twice in the same day—first as having a stroke, then Bell's palsy. Lying there in that hospital bed, it hit me how bad this really was: full paralysis from face to ankles. The doctors' words haunted me: "You're lucky your feet aren't affected, but your condition could deteriorate further. You may lose your ability to breathe independently and require intubation."
How could this be happening? I kept thinking this had to be some kind of mistake. Before I could even learn to spell the name of my condition, I was facing the possibility of complete respiratory failure.
The Darkest Days
For six long days, I remained completely immobile in the High Dependency ward. The nurses had to clean me like a baby. Talk about losing your dignity. I couldn't move, use the bathroom independently, swallow, or even smile. My birthday passed in this sterile environment, marked only by the beeping of machines rather than celebration.
Those six days felt like forever and also like they never happened. Weird, right? There were moments when thoughts of ending it all crossed my mind—but even that choice was taken from me, as my hands lacked the strength to press the nurse's call bell.
The constant blood draws depleted my veins until nurses warned they might need to extract from my legs—a significantly more painful procedure. Eventually, an NGT feeding tube sustained me for a month, my only lifeline to nourishment.
The Slow Climb Back
On the eighth day, I took my first tentative steps after transferring to the general ward. This was the beginning of my physical recovery, but honestly, the journey ahead still looked impossible.
Learning to swallow again became its own mountain to climb. I progressed from thickened liquids to purees to minced food, with each meal stretching across three hours. I endured the impatient stares of cleaning staff eager to clear my barely-touched plates. Can you imagine eating for three hours straight just to get a few spoonfuls down?
My legs and arms gradually improved, but my left facial paralysis stuck around, haunting me long after leaving the hospital. Just when I thought my life was stabilizing after 1 year of recovery, tragedy struck again—my father passed away from cancer. My grief manifested as constant rage, especially as I suspected negligence had contributed to his death.
The Invisible Battle
On the surface, I appeared functional—holding down a job and supporting my family. But inside? I was drowning. My recovery plateaued, and exhaustion became my constant companion. Meditation offered no relief for my cluttered mind.
The fog lingered for three years before I finally recognized I needed to save myself. After reading about grief and trauma, I discovered the book "The Body Keeps the Score" and had my revelation: mental hurdles were blocking my physical recovery. The residual weakness in my left side and facial paralysis weren't just physical problems—they were manifestations of unprocessed trauma.
It took another two years to gather the courage to seek professional help. Today, I can say without shame that therapy expedited my recovery process and helped me process the trauma, finally clearing the brain fog that had prevented me from fully connecting with my body. After 7.5 years as a GBS outpatient, I'm finally seeing meaningful progress in my facial paralysis, synkinesis, and residual weakness. It was only after this long journey—7.5 years post-GBS—that my nerve test results finally showed significant improvement in my left side.
The Wisdom That Emerged
After going through all this, I figured out there are seven stages of recovery that guided me from my initial hospital stay through the years that followed. These stages have become a roadmap not just for myself, but for others navigating similar terrain.
Here's what I've learned: empowerment comes from within. No one can heal us but ourselves. My recovery journey has been largely about this self-empowerment—taking small steps that open new doors of possibility. I stand before you as living proof of this truth.
Reaching Out
If you find yourself in a similar place—whether it's GBS, another condition, or trauma that has disconnected you from your body—know that you're not alone. Even when my articles and programs don't provide what you need, I encourage you to seek professional support without shame. There are so many approaches to trauma healing beyond medication, and I'm happy to share these resources when you join our community.
I believe in your capacity to heal, even when that healing looks different than you imagined. Recovery isn't about returning to who you were before—it's about discovering who you can become.
With warmth and encouragement,
One step at a time,
May | Move Again