RIP John Prestwich MBE 24-11-1938 - 27-02-2006

Breeze Cottage

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.

 

 
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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!

John Prestwich

 

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