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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
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