Patient Stories

Mary’s Story

In 1978, my husband Dave and I were living in Germany and we had three young children, Paul 3 years old and our twins Jeremy and Matthew who were only 10 months old.  At that time, I was struck with a rare virus which drastically changed our lives. Because of this virus traveling throughout my body, my legs couldn’t move, I couldn’t run, and I couldn’t walk.  My arms couldn’t move, I couldn’t hold my children and I couldn’t feed myself.  My hands couldn’t move, I couldn’t hold my husband’s hand and I couldn’t brush my teeth.  My mouth couldn’t move, I couldn’t chew food. I couldn’t laugh.  I couldn’t smile. I couldn’t talk.  I couldn’t, I couldn’t, I couldn’t.  This terrible virus from the disease had totally paralyzed my body.  I could, though, lay in bed, minute after minute, hour after hour, day after day, thinking and praying.  I could be fed through the feeding tube in my nose every few hours.  I could enjoy listening to my visitors chatter.  I could communicate non-verbally by opening and closing my eyes twice to mean yes, once to mean no.  Because my lungs didn’t work properly, I was put on a respirator (ventilator).  I depended on that machine for every single breath.  In some primitive way, that machine and I communicated with one another as it kept me alive every second, every minute, every hour, and every day.

My solo journey led me into a deep, dark cave where I was totally dependent on others for my survival.  As I was descending into the deep abyss, this rare disease, Guillain-Barré syndrome totally paralyzed every part of my body.

In the depths of my fear, in the depths of my endless, deep black pit, there was always a tiny light.  Whether it was the middle of the day or the middle of the night, that tiny light was always there in my horrible abyss of fear. Unable to speak aloud, my screaming could only be heard from within.  “Why me, Lord?  Why did you let me become paralyzed?  Why won’t you let me be at home with our children?”   As I inwardly thrashed about with my thoughts and feelings, God held me in His loving arms. As I inwardly cursed and screamed trying to fight the horrific nightmare, God comforted and consoled me.  The light, God’s love, was always with me.  In my silent world, God heard me. God loved me. God stayed with me.  In the darkest hours of my nightmare, His light gave me hope.

How did I become healthy again?  Like any other virus, the GBS virus finally left my body.  I then had the challenge of going through the baby stages as I had to learn to roll over, crawl, stand on my own, and finally, learn to walk again.  I actually had a contest with our one year old twins to see who would learn to walk first.  I won the contest!