All about Guillain-Barré syndrome: Tom havde GBS and describes the funny side of GBS

The Guillain Barré Syndrome has left me physically handicapped but I have no intention of going in to details. Joseph Heller, author of Catch 22 wrote an account of his experience of GBS and entitled the book "No Laughing Matter". He is right. Our condition is not funny but if we do not laugh at it then we might as well cry.

Occasionally folk ask me what happened and I attempt to enlighten them. Some try and demonstrate a degree of empathy and understanding.

Not long ago I began to describe the nine weeks of intensive care and tried to explain what it feels like to have tubes going in and out, a tracheotomy and be denied the power of speech. The woman indicated her understanding with a nod of the head as I described the total paralysis from the shoulders down with the attendant inability to move so much as a finger. "Oh I know, I know just how you must have felt, " she said. "I had it with my knee a little while ago. I just couldn't move it."

Undeterred I continued and added that six of those weeks had been spent on a ventilator. Once again my listener nodded her head in agreement. " I know, oh I know" she said, "it must have been awful for you. I can put up with the cold, you can always get warm but I just can't stand the heat either. Last August what with the weather and my hot flushes I had a fan on all the time."

There must have been times when G.B.S has got us a bit down and we needed a few words of encouragement. The neurologist asked me if I wanted to have the good or the bad news first. Without waiting for my reply he went on to tell me that I had something called the Guillain Barré Syndrome and explained the condition.
The good news was obviously that I was going to recover.
Our memories play tricks and store the information we want to hear and reject unpleasant tidings. Hence mention of the lengthy process and the fact that my recovery might be partial went unheeded. The doctor must have stressed the need for patience but the word was foreign to my vocabulary.

Some three months or so later I lay in hospital feeling disgruntled. Intensive care was behind me and I had regained my voice. However, I was still totally paralysed and unable to sit up in bed. The pillows had slipped and I had gone with them. Nurse Trish Smith answered my grumpy call for help.

Trish Smith had a way with words. When in charge she would answer the telephone in her nice voice the intonation rising and falling, the stress on the wrong syllables. For example, "Besildon Hospitoool, Floraance Nightingale Waard, Nurse Smith speeekiiing. How can I help yooou"? Her offer of help came across as an exasperated avowal of the impossibility of rendering any assistance.

Trish approached, blue eyes twinkling and blond hair glistening in the glare of the strip lighting. She leaned over me and gently cooed, "Now, now Mister Hawkeeens cheer up. We need lots of P.M.A".

Good God, I thought, what's P.M.A? My wife had had P.M.T. Perhaps P.M.A. was the male version. The indwelling catheter did not do much for my manhood and the bag always got in the way. Nurses either tugged or trod on it although to be fair they did apologise, "oh sorreee, didn't mean to hurt yoouuu"!

Nurse Smith recognised my bewilderment and her face lit up. She leaned over and gleefully squealed "P.M.A. lots of P.M.A. Mister Hawkeens. Positif mentoool attichoood".

Tom Hawkins
03.2003