At 30, I Was Diagnosed with Guillain-Barre Syndrome
How I Turned My Body into an Ally to Walk Again
At the tender age, of thirty, I was diagnosed with Guillain-Barre syndrome. The first words I heard out of of my physical therapist’s lips: “if you survive this, your quality of life will be severally diminished.” Great bedside manners!
After hearing the news, I had two courses of action (or inaction): Wallow a bit and throw myself a pity party, or profoundly rethink my relationship to my body and set a goal to walk again.
In a matter of days, all my muscles had melted away. I could not stand, let alone walk. I even lacked the strength to hold a fork to feed myself. What’s more, my breathing was erratic. I felt abandoned by my body which was fast turning into a rag doll.
You often hear stories of people facing impossible situations: losing a partner, contracting a serious illness or escaping death: These life-changing experiences forced them to re-evaluate their priorities, their relationships and sometimes their entire value system.
For me, this would come a little later. For now, the first order of business was to figure out how to walk normally again.
Guillain-Barre forced me to reconsider the relationship with my body. For most of us, especially those still in the prime of our lives, we take our bodies for granted. We take for granted that we can get up every morning without effort, walk our dogs, and fill our lungs with air. I also had to challenge this feeling of feeling betrayed by my body. Could it be the other way around? Perhaps my body was being attacked, and it was I who needed to come to its rescue.
So, after the initial shock, I came up with a plan to apply the breathing and concentration methods I had learned in India during my yoga training. To give you a visual: when you inhale, you are picturing the energy enter the body through the top of your head. When you exhale, you are directing the energy to a specific part of your body.
I also followed an essential principle that states, “where the mind goes, the energy follows”.
For the next few months, I created a daily routine where, several times a day, I exercised and focused my attention on different parts of the body. I started small, directing my energy to the big toe of my left foot, which I could no longer feel, or move. Along with my intention, I also directed my breathing towards this part of my foot. It was exhausting, but I kept my spirits up. After repeating this daily routine for a week, I felt some movement in the big toe. The current was going through again! I persevered for weeks, and then months, moving from one part of the body to the next: the toes, the feet, the hands. Walking was still out of reach as I had lost all my muscle mass and all my strength.
After a year of following this daily regimen, I could stand up again. It was not the most elegant and self-assured walk, but my legs were moving again. I remember my 6-year old son commenting, “why are you walking like a duck?”
The most significant long term side effect was that I could not run anymore. I had to espouse the turtle’s philosophical outlook from the Lafontaine story, “Slow and steady won the race”. This was also the time I started practicing martial arts — Tai Chi and Qigong — and made a more conscious effort to incorporate a body mind practice into my life.
Every morning, I appreciate the changes that my body undergoes and I give thanks to it every morning. I strive to fully live the life I have been granted.
The body is both a delicate and resilient machinery. Staying healthy is a priority: good sleep, mindful breathing and some organic wine in moderation.
If you suffer from Guillain Barré, don’t lose hope. The road to recovery is long, but the joy of being able to walk and breathe again is priceless.
⚜️ Garance lives in Provence, just outside Avignon. She’s a painter and has practiced acupuncture and worked in the field of dying and hospice care for the last 30 years following the teachings of Elizabeth Kubler-Ross. You can contact her through her site, GaranceDenaux.