Bob Shea’s Story
Life can break you or it can break you open. It is one of my favorite sayings, and it is something everyone who has suffered from Guillain-Barre Syndrome (GBS) knows well. I was diagnosed with GBS on September 19, 2002, and I endured a series of physical challenges: total paralysis; placed on a respirator; vision loss; pneumonia; bacterial and urinary tract infections and a pressure sore at the base of my spine.
But that was not the worst of my experience with GBS. The combination of the disease and the morphine had contaminated my mind. I no longer was able to see the line that separated delusions from reality. There would be many evil and ugly delusions. My wife told me she was leaving me for another man: my children were in trouble and I was losing my family; the staff at the hospital hated me to such an extent that a nurse was planning to kill me. All of these delusions are as real to me today as sitting at this desk writing this story. Of all my experiences with GBS, losing my mind was far and away the worst.
Unfortunately the bad news would continue. A few days after Christmas, we received notification that the company providing my family with Health Insurance was going under. I had hundreds of thousands of dollars of unpaid medical bills. We were financially devastated and would lose our home.
Then the dark cloud descended on my mother. She had taught eighth grade in the Chicago Public School system for 40 years and was a force of nature. She came every day for the seven months I was in the hospital. The neurologists were terrified of her and the nurses loved her. The bright and powerful woman that was my mother was diagnosed with vascular dementia. She would eventually move in with my family and we would begin the long goodbye.
The dark cloud would then move to my wife. She was diagnosed with an aggressive form of cancer that had spread to a second location. She would have surgery and a month later begin the horrors of chemotherapy. I now would have to be the caregiver for my mother and my wife.
What is it that brings you back? What enables you to break open rather than being broken? Physically, when I was going through eight months of physical and occupational therapy, I was like a brand new baby starting over again. But psychologically and spiritually, it was the care and compassion of a single person who showed me a new life.
When I was transferred to my third hospital, I was assigned a speech therapist by the name of Sarah. She helped me learn how to speak and swallow again. I had not been able to eat or drink and was nourished through a feeding tube for the previous four months. As we worked together, Sarah would talk and laugh with me. One day she asked what would be the first thing I would have when I passed the swallow test. My answer was orange juice. It makes me sound boring but I could have died a happy man for one glass of orange juice.
On the day off my swallow test, Sarah accompanied me to the lab. She went in with the technician while I was given the test. When it was completed, I was alone and praying that I had passed. The door opened and Sarah was looking at me with tears in her eyes. The second I saw her tears, I knew I had passed. We celebrated because we not I had done it. Sara took me out to be transferred back to my room. What I did not know is that she went back into the lab to call up to the nurse’s station on my floor.
Shortly after I returned, three nurses appeared at the door of my room. They all had big smiles on their faces and the middle nurse was holding a tray. They announced it was a lunch time. There was some broth and a bowl of jello but on the upper right corner of the tray was a glass of orange juice. It was a miracle. The taste, the smell and the texture were miracles. I have a glass of orange juice ever day. Every day it remains a miracle and everyday it reminds me of Sarah.
The dark night of the soul is painful but ultimately a blessing because it is what allows the soul to grow. But it is our choice. We can let life break us or break us open. Now I am the person bringing the orange juice. I volunteer fulltime at Rainbow Hospice in Chicago. The pain of my dark night of the soul has meaning when I can help a person or their family when they are facing death. Guillain-Barre Syndrome broke me open. It can be a gift if you allow it.
Since I posted my patient story “Breaking Open”, the gift of Guillain-Barre Syndrome has continued to break me open. That does not mean it has been easy. We all know GBS/CIDP is excruciatingly difficult for patients and their families. Viktor Frankl wrote that to live is to experience pain but to survive is to find meaning and purpose in the pain. Breaking open does not remove the pain but provides the meaning and purpose.
My friend Ed Kane was diagnosed with ALS a few years after I contracted GBS. Our diseases taught us how important it is to have the appropriate medical equipment. Our wheelchairs were the tools that allowed us to take our lives back. Those diseases also asked us a question. What happens to those who do not have insurance or are underinsured. Sadly they lose their lives. The pain of those people provided Ed and I with purpose and meaning. We started a nonprofit Devices 4 The Disabled https://devices4thedisabled.org/ . D4D refurbishes used medical equipment and provides it at no cost to those in need. We could help people return to their lives.
The woman pictured lost both of her legs in a car accident and did not have insurance. Her son brought her into our center in a wheelchair someone had found in the trash. We provided her with an appropriate wheelchair and a ROHO air cushion. The smile on my face reveals the joy in finding purpose to my pain. Guillain-Barre Syndrome continues to be my mentor. It has taken me from being a hospice volunteer in my first posting to being a member of the board of directors at Rainbow Hospice today. It truly can be a gift if you allow it.