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.
JOHN PRESTWICH – 40 YEARS A LAYABOUT
(Originally written April 1996 with subsequent updates.)
The British Polio Fellowship is the only charity caring for the
needs of those people in the British Isles who have become disabled
as a result of polio. To mark the 40th anniversary of the
introduction of the polio vaccine, the Fellowship has designated
1996 as Polio Awareness Year. We are extremely fortunate and indeed
greatly honoured that HRH the Prince of Wales has agreed to be our
patron for the year.
I too have recently “celebrated” a 40th anniversary because for the
last 40 years, as a result of polio, I have not only been totally
paralysed below my chin - unable to even lift or turn my head, but
also completely unable to breathe and I have been kept alive all
these years by the constant use of a mechanical respirator.
Unfortunately for me, the polio vaccine came a year too late and it
was on my 17th birthday in November 1955 that I succumbed to a
severe attack of the virus. I was in America at the time, and to add
insult to injury it also happened to be Thanksgiving Day!
I was born in Oldham, Lancs., the only child of Fred and Norah
Prestwich, and at the age of 7 we moved to the south coast of
England. It was here I developed my love of the sea, and the last
two years of my education took place at a Naval school in Anglesey.
On leaving school I joined the Merchant Navy and on my 16th birthday
set forth to India from Liverpool Docks on M.V. “Herdsman” belonging
to the Harrison Shipping Line. At last I was on the way to
fulfilling my ambition to see the world! Little did I know that one
year later to the very day, that dream would be shattered and that
my life would be so dramatically and irrevocably changed. At the
time I was on my third trip and taking in the West Indies and
Mexico. It must have been at one of these places that I managed to
pick up the polio virus, for during the days that my ship was docked
at Corpus Christi, Texas, I was, to put it mildly, feeling
unbelievably and progressively ill. At one stage I was laying face
down on my bunk and I frightened myself to death when I discovered I
couldn’t lift my face out of the pillow. There was absolutely no-one
around I could call - docking days are notoriously hectic for all
the crew on a M.V. So I had to set my mind to the problem and with
every remaining fibre of my body straining, I eventually managed to
turn over. That was the very last time I was able to move. Soon
after, by some miracle, someone came into my cabin (see update in
next paragraph!) and then all hell was let loose! I was stretchered
off the ship - I can still visualise the docking lights above me as
I was carried down the gangway - and I was rushed by ambulance to
the Memorial Hospital in Corpus Christi and put straight into an
iron lung in which I was to remain for the next 7 years. My mother
was sent for and she had to spend much of the next 3 months helping
to nurse me as there was a big polio epidemic at the time and
nursing resources were stretched to their limit.
It is really worth inserting the following update at this point! A
remarkable reunion occurred in the year 2000, which was a direct
result of an article about my life which had appeared in SAGA
Magazine in 1998. A certain Captain Brian Ivor Evans from the Isle
of Man had read the article and had recognised the name ‘John
Prestwich’ and wrote a letter to SAGA which was forwarded to me. The
letter explained that Brian had not only been a shipmate of mine on
that last and fateful trip, he and I had in fact shared the same
accommodation on board and it was Brian who at the time, and over a
period of several days, had become more and more concerned at my
rapidly deteriorating health. Eventually he had insisted to the
ship’s officer that he send for a doctor to come aboard to examine
me. The doctor immediately sent for an ambulance and I was put on a
stretcher. During the wait for the ambulance, Brian undoubtedly kept
me alive by using the “Eve’s Rocking Method” of artificial
respiration (i.e. rocking me backward and forward through an angle
of 45 degrees). Incidentally – and incredibly (!) – Brian also told
me that the ship’s captain had several times refused to take my
condition seriously as he thought that I was faking illness in order
to get out of the very strenuous work involved during docking! Forty
five years later we had the great pleasure of welcoming Brian and
his wife to our home. As you can probably imagine, it was a very
moving occasion for everyone and there was a good deal of catching
up to do!
Back to March 1956 when, after almost 15 weeks in the Memorial
Hospital, it was decided that I was “well enough” (!) to be
transferred to a hospital in the UK, and so it was on March 6th 1956
I was flown to London - via New Jersey and Scotland - by the
American Airforce. The journey took 2 days. I was, of course, still
in an iron lung - this time, one designed by the US military for
transportation purposes. I have no recollection whatsoever of any
part of the journey. As my parents were by this time living in
London, following my arrival at Heathrow I was taken to the fever
ward at the Royal Free Hospital at Hampstead.
For the first 2 years I was still very ill. No one ever told me that
I would never move again - I was to find out quite by accident. Each
day the physiotherapist came to give me passive movements. When the
iron lung was open for such purposes, I was kept alive by breathing
through a tube attached to a positive pressure pump which forced air
directly into my lungs. I innocently said to the physiotherapist,
“when I start moving again, which bit of me will start moving
first?” I could immediately see from her face that I’d asked her a
very awkward question. She quickly made her excuses, closed up the
iron lung and disappeared. The subject was never mentioned again.
As my general condition gradually improved (but I was still, of
course, totally paralysed), I began to take an interest again in
life. I learnt to spend short periods out of the iron lung, either
spending an hour in the afternoon on a bed, breathing by using a
cuirass respirator on my chest, or sitting in a wheelchair breathing
positive pressure through my mouth. I then wanted to go further
afield so began taking trips through the hospital grounds, then down
to the local shops and eventually to the local cinema around the
corner in Pond Street. In those days such things as portable battery
operated respirators were unheard of, so when I went out my
respirator had to be pumped by hand. This caused some hazardous
moments when, for instance, a film became so absorbing that the
nurse would forget to pump, or when on one occasion the bellows
became completely detached from the base unit! Eventually I resolved
the problem myself by contacting a firm who built me a
battery-operated respirator. It cost me £55!
I then came up with the idea of going to the top of the Eiffel
Tower, which meant, of course, I had to go to Paris! As it is not
possible to sleep using positive pressure through a mouthpiece, the
trip had to be completed in one day. After a tremendous amount of
organising, I eventually achieved my aim, celebrating at the top of
the Eiffel Tower with a brandy bought for me by the paparazzi who
had followed me around all day!
Following the success of my Paris trip I decided that it was time I
had my own means of transport. Until now, each time I wanted to go
out any distance, I had to hire the London Clinic’s Daimler as I
couldn’t fit in any normal vehicle, as I needed to lie flat on a
stretcher for travelling longer distances. Having given the matter a
great deal of thought, I came up with what I considered to be the
ideal vehicle for me - a hearse! So I advertised for one in the
personal column of the Times. “Hearse or similar vehicle wanted by
frustrated iron-lung victim for pleasurable excursions.” I
subsequently had the choice of two hearses, but unfortunately the
hospital authorities wouldn’t allow it, probably, I decided, because
it wouldn’t have done their image much good to have a hearse
permanently parked in the hospital grounds!
It was around this time that a new member of the Occupational
Therapy Department appeared. This was Maggie Biffen who had just
returned from 18 months working and travelling in Canada and the
USA. She was to be my new OT and her duties involved such things as
writing my letters, reading to me, teaching me to sign my name using
a paintbrush in my mouth, occasionally helping out to feed me or
helping me get dressed and up in my wheelchair and pushing me
through the hospital grounds to the cinema.
On a day to day basis life for me continued reasonably pleasantly.
For most of the time I had the 4-bedded ward to myself, in fact with
the iron lung and all its attachments, there was barely room for
other patients! I had my own record-player, TV, radio and electric
frying pan. I had my own bookcase which somehow changed into a
cocktail cabinet (!), and most evenings would be spent in the
company of friends. We would play cards or chess or listen to
records. I would occasionally have parties or have quieter evenings
doing my entertaining on a one-to-one basis! Remember that I was now
in my early 20’s and surrounded by pretty young nurses whose job it
was to care for me!
However, in October 1962 this all came to an end. Because of the
proposed re-building of the Royal Free Hospital, I had to be
transferred to another hospital. I was devastated! During the 7
years I was at the Royal Free I had made a reasonable life for
myself, only then to find at this other hospital I was one of many
in an open ward. For weeks I was depressed, lonely and certainly not
very good company. As it turned out, my transfer was to bring about
another turning point in my life. I had discovered that in spite of
being similarly paralysed as me, some of the other patients were not
permanently flat on their backs in iron-lungs, but sitting propped
up and using modern cuirass respirators to keep them breathing. The
ward sister turned down my request to try one, but undaunted, I went
over her head and asked my consultant. He was more than happy for me
to try and to my delight and everyone’s surprise (and, I feel, the
ward sister’s annoyance!), it was found that I was being adequately
ventilated. So after 7 years of being more or less permanently flat
on my back encased in the iron-lung and watching the world go by
through an overhead mirror, I was able to sit or lie on a special
chair/bed and see the world the right way round. It also meant that
I was more “mobile” and was able to spend nights away from hospital.
By this time my relationship with Maggie had turned from
professional to unprofessional! After I moved from the Royal Free
she came to visit me 3 times a week and continued to do so for the
next 9 years. Although there was no way we could plan a future
together, we knew that the love and friendship that had developed
between us was not a passing phase. Our basic problem was a lack of
finance. Polio is not an industrial disease so for me there was no
industrial pension. I had been in the Merchant Navy and not the
Royal Navy so there was no disability pension for me (even though it
had been agreed that my time in the Merchant Navy would count as my
National Service!) It was a disease which had paralysed me whilst at
work and not an accident, so there was no-one I could sue for
compensation, and as I had accumulated only one year’s National
Insurance stamps before becoming paralysed, the pocket money I was
awarded whilst in hospital ran out after a matter of months. Because
of the extent of my disability and my total dependence on a
respirator I must have someone with me 24 hours of the day. There
was no way I could afford to pay for that level of care so I was
forced to remain in hospital. I was able to spend a few days at a
time at my parents and have the occasional break at the coast, and
on these occasions Maggie came too to help with the 24-hour care.
Our lives carried on in this way for the next 7 or 8 years.
Then an uncle of mine developed cancer and knowing that he didn’t
have long to live, he made over to me a deed of gift of some very
modest property he owned in SE London. The small income this brought
in made me - now in my early 30’s - financially solvent for the
first time in my life and consequently able to think more positively
about the future. Eventually, by selling 70% of the tenanted
property I was able to purchase my own small bungalow, the remainder
giving me a weekly income of almost £20, which, in 1971 was not too
unreasonable. Even though that was all I had to offer, Maggie was
prepared not only to marry me but also to take on the responsibility
of being my full-time carer. And so on 11th December 1971, after 16
years in hospital, I finally escaped! Maggie and I were married in
the parish church in the Hertfordshire village where we have our
home, and apart from a few short periods of hospitalisation, I have
been here ever since.
To say that our marriage changed my life yet again would be an
understatement! In spite of the enormous restrictions my disability
gives me, I began to live again. My first priority was to purchase a
vehicle - not a hearse this time but a clapped out old Ford Thames
mini-bus to which we added ramps and a hand operated winch. It
served us well for a while, but (and only through the kindness of
friends who raised money for us,) we are now on our third new
vehicle and we average 9,000 miles a year.
Having a severe disability is very time consuming. On a personal
level there is nothing I am able to do for myself. I have to be
washed, dressed, fed and watered and generally cared for. And
because no one has yet designed a motorised chair/bed (on which I
live 24 hours of the day) I am unable to move around independently.
As I am 6’ 3” tall and together with my chair/bed, batteries and
respiratory equipment weigh 31 stone, it is no easy task for Maggie
to push me around. If I was LESS disabled, I would be supplied with
all kinds of equipment which would enable me to be more independent
and less of a physical burden to Maggie. However, thanks to modern
technology, for some years now I have had considerable control over
my immediate environment. What I mean by that is, I have two
computer systems, one I operate by whistling into a microphone. With
this system I am able to operate a considerable range of household
equipment - for instance; radio; TV; video; CD player; curtains;
lights; intercoms and alarms around the house; front door and
telephone - both answering and dialling calls. The other computer is
multi-media and this I operate completely by voice, which gives me
access to anything from games to the Internet. Forty years ago I
couldn’t even ring an alarm bell if I needed help! The benefits
derived from this limited amount of independence helps not only me
for it cuts out many of the “could-yous” to Maggie who is still the
person on whom I rely for all but a few hours a week.
On a broader level, because most of the legislation and equipment
supplied by Government is so generalised and geared to people who
are not so extensively disabled, my needs are not always catered
for. In fact, most of the equipment we have has either been
purchased, designed, modified or handmade ourselves (I wasn’t daft
in marrying an OT!) So because of this lack of consideration by
Government legislation for someone with my extensive needs, there
are always letters to be written, phone calls to be made, meetings
arranged and battles to be fought be it in the line of community
care or the supply of the equipment which keeps me alive. Nothing,
it would seem is straightforward and there are times when the
novelty of all these challenges wears off!
We are very fortunate in that we have a very full and active social
life. We are able to travel independently and we turn up at the most
surprising places! We are also extremely fortunate to have so many
very good friends who are always there for us when we need help and
who don’t seem to mind the disruption we cause when we turn up! Our
biggest problem is access, but we try to organise our lives around
accessible venues. Sometimes it is not always possible which can
cause considerable difficulties! Old buildings are the worst. A
typical example is Buckingham Palace as I was to discover when I
went there in 1994 to receive the MBE I had been awarded in the
Queen’s Birthday Honours. The lift at the Palace was an inch too
small to accommodate my chair/bed, but by tripping the safety
mechanism the lift was able to make its ascent with the inner door
open. HOWEVER!!! No one had taken into account the 9” steel girder
between the floors, and had we not noticed it in time and stopped
the lift, there is no doubt that my feet would have been severed. In
the end, in the extremely limited space, Maggie and the lift
attendant managed between them to dismantle my footboard and pulling
my dangling feet away from danger, we got safely to the next floor
with my feet still attached!
Earlier this year, in order to attend the launch of Polio Awareness
Year which was held in the Guard Room at Lambeth Palace, the only
way I was able to be there was with the help of 6 strong lads from
the Lambeth Fire Brigade who had to carry me on my chair/bed up and
down the flight of 18 steep stairs.
This brings me back to Polio Awareness Year. One of its purposes is
to bring to the public’s attention that although polio isn’t the
devastating scourge it once was, the virus has NOT been eliminated
so it is vital to continue to take up the vaccination. I didn’t have
that opportunity.
The Year 2004 – an update! Now it is “48 Years a Layabout”!
At the end of 1999 a truly remarkable event occurred. For the very
first time in almost 44 years I was able to move myself totally
independently from ‘A’ to ‘B’. I will leave you to try to imagine
what that felt like! This was entirely due to a very good friend and
neighbour Jarlath Pattinson who, with the help of the charity REMAP
and a specialist firm who made the chassis, designed and produced
for me a motorised chair/bed which I am able to drive by using a
sip/puff switch. All I know is that I shall never, ever be able to
repay them all for giving me such a feeling of liberty. I can often
be heard to say the following - “Technology has liberated me from
the prison of dependency to which polio condemned me.” And how true
that is!
