In hospital for 16 years, the first 7 in an iron lung, then in 1971 John married Maggie and for the next 35 years and until he passed away in 2006, his home was Breeze Cottage.
A Few Words But A Long Sentence
The result of having contracted polio in 1955 was for me a complete
and utter life-changing experience. I was a strapping 16 year old
lad of 6’3", very fit and active, but during the week of my 17th
birthday I was hit very hard by the poliovirus. Within a few days I
was in hospital, totally paralysed and because I could no longer
breathe, was kept alive in an iron lung. The poliovirus completely
and permanently destroyed all the motor neurones in my spinal cord,
so for the subsequent 48 years the only muscles I have been able to
use are those in my face. I cannot lift or turn my head and my
swallowing muscles are partly affected. And I am still totally
dependent on a ventilator 24 hours a day to keep me alive.
What followed next was 16 years permanently in hospital (the first 7
in an iron lung). Because of my total dependence on a ventilator, I
must have someone with me 24 hours of the day. Since 1971 that
"someone" has been my wife Maggie. It was only once we were married
that I was able to leave hospital to live in my own home, since when
she has provided more than 95% of the care I must have.
Since the mid 60s I’ve lived 24 hours of the day on a chair/bed and
using a cuirass (chest) respirator to breathe. Without the
constriction of the iron lung I have therefore been more "mobile".
However, when I’ve undergone surgery, or when I catch a simple cold
– it’s back into the iron lung. At such times I go into the Lane Fox
Unit at St. Thomas’s Hospital, London. I am eternally grateful for
the kindness, care and expertise of the staff on the Unit who have
saved my life on more than one occasion. At this point I feel I must
emphasise that, contrary to popular belief (including many members
of the medical profession) the iron lung is still very much in use.
One of our biggest "bug-bears" is finding equipment to suit my
particular needs. If I was less disabled, I could use much of the
equipment which is available on the open market. However, because my
disability is so extensive (? unique), there is very little
equipment around to be of practical use to me. Over the years, most
of the equipment we require has either been made, modified or
designed by ourselves (and believe it or not, this includes
respiratory equipment!)
To get around we have our own vehicle. Because of my overall size
and life support equipment, this has to be a people-carrier. We
travel here, there and everywhere and do things which most people
do. I’ve been up the Eiffel Tower, on the London Eye, on a BR train
trip, to Calais - via the tunnel. I go to galleries, cinemas,
theatres, exhibitions, polo, Royal Ascot, weddings (and funerals),
restaurants, friends’ homes and so on.
In 1999, at my instigation, a new motorised chair/bed was designed
and made for me. This meant that I was able, for the very first time
after 44 years of total immobility, to move myself entirely
independently from A to B (using a mouth switch). Freedom!!! When I
first became disabled I couldn’t even ring an alarm bell if I needed
help. Modern technology has transformed my life.
