JIM COSTELLO REPRESENTED polio survivors in Paris recently, receiving a Louis Pasteur Polio Hero medal in recognition of his work as a founding member of the Post Polio Support Group in Ireland.
Jim called on those who attack vaccination teams to look at him and consider: is this how you want your children to live their lives? Jim is the only man in Ireland still using an iron lung. This is his story.
I AM NOW 73 and my polio journey began when I was admitted to Cherry Orchard Hospital in Dublin, in 1958 with suspected meningitis. I was 15. Within days I was transferred to the polio ward and put into an “iron lung ventilator”. I was diagnosed with acute respiratory poliomyelitis – my upper body was paralysed.
It was thought I might have contracted polio when I went up to Dublin from Clongowes Wood College by bus, to an international rugby match between Scotland and Ireland. It was learned afterwards that there had been a small outbreak of polio in Scotland, and I may have picked up the virus from a carrier in the crowd.
Living inside an iron lung
In Cherry Orchard, the iron lung helped me to breathe. It was a long, airtight, coffin-shaped box with my head sticking out at one end, supported on a small ledge by a pillow.
I lay there listening to the motor pumping a large bellows which changed the air pressure inside. It created a partial vacuum to lift my ribcage to draw air into my lungs and then a positive pressure to partially compress my lungs, so I could breathe out.
I wasn’t scared going into this box. I was too ill and in too much pain to care. What really frightened me was when a nurse or a doctor wanted to open the iron lung. In the beginning I couldn’t breathe at all once it was open and this terrified the life out of me.
I had severe pain throughout my whole body, especially in my arms and legs. Yet even severe pain can be coped with to some extent, but your next breath is very personal and something you cannot do without.
Changing my pyjamas or the sheets was carried out by a team of nurses, who had everything prepared beforehand. They would work very quickly to do what was necessary, monitoring me carefully. It would often take a number of sessions of opening the lung and pulling my stretcher bed in and out to get the task done. It was a nightmare.
A physiotherapist began working with me to try to get me breathing on my own. She had a stopwatch and got me to stay out of the lung a few seconds longer each day. This was quite terrifying in the beginning as I had great difficulty breathing. When I began to recover my breathing eventually, the physio would do exercises and stretch my arms and legs, which was extremely painful. It usually ended up in a crying and shouting session.
‘My lungs are 75% paralysed’
Polio had paralysed my upper body. I have a triple curvature of the spine, and I wear a spinal brace, an adaption of a Milwaukee brace. I have no use of my arms, and my lungs are around 75% paralysed. Yet I can’t ever remember thinking to myself – I am paralysed.
The severity of my breathing difficulties completely blocked out any other concerns. The two most important things in life are your next breath and your next heartbeat, without them you have no life.
After a year and a half in Cherry Orchard Hospital, with financial assistance from my generous aunts, I was transferred to England, for another year and a half to the Nuffield Orthopaedic Centre in Oxford. I began using a “Cuirass” ventilator, which was like a tortoiseshell on my chest, working similarly to the iron lung.
Working life and polio activism
When I returned to Ireland, with my Cuirass, I attended the Central Remedial Clinic, firstly on a daily basis, gradually reduced over a few years. I joined the family clothing business where I spent the following 10 years, after which we decided to wind it up. I ventured into a number of businesses, until retirement in the early 1990s due to ongoing respiratory ill-health.
In 1993 I was involved with 6 other polio survivors in setting up a charity to help people who had polio or who have ‘Post Polio Syndrome’ – the Post Polio Support Group (PPSG). I worked with the group voluntarily for over 22 years, as chairperson, then as a director and I’m still involved in an advisory capacity. We realised at the time that polio survivors were not being adequately looked after by the various Health Boards around Ireland.
Very little was known in Ireland of Post Polio Syndrome (PPS), a condition that can severely affect polio survivors some 20-40 years after their initial infection. The effects of PPS include great difficulty undertaking the most basic functions of daily life, including bathing, dressing and making a cup of tea.
Ireland’s polio survivors still suffer
It causes pain, fatigue, severe intolerance to cold, breathing and swallowing difficulties and often problems related to sleep. It may also reduce a polio survivors’ ability to walk. Having originally being hit by a severely disabling condition, they now find themselves in their later years coping with a second disabling condition.
There are thought to be approximately 7,000 polio survivors living in Ireland. PPSG presently has a membership of over 900 survivors. The majority of survivors mainly contracted their original polio infection in the 1940s to 1960s.
An ongoing need for our work is expected over the coming years as polio survivors in Ireland experience problems with PPS and old-age. PPSG’s main mission is to ensure that polio survivors can live with dignity. We are founder members of the European Polio Union, which brings together polio support groups throughout Europe, where there are estimated to be 760,000 polio survivors.
‘I’m lucky to be alive’
Around two years ago walking any distance became difficult due to my respiratory paralysis and I had to begin using a powered wheelchair, which also carries my ventilator. At weekends, I live at home in Sandymount in Dublin, where I am looked after by my beloved partner of over 30 years, Delia.
Without Delia I would be totally hospitalised for life. The rest of the week, I live in the Elm Disability Unit in Cherry Orchard Hospital. I am extremely well looked after by doctors, nurses and carers, and while I mainly use an NIV ventilator (non-invasive ventilation) through a nasal fitting, or full face mask, I still use the “Alligator” iron lung ventilator when necessary.
I am lucky to be alive – in a medical sense I owe my survival to the exceptional care and support from many people over the years, in Ireland and also in England. Most importantly, I couldn’t have done without the support of my tremendous lovable partner, Delia, my family, notably my sister Muriel and her family and my friends, particularly my lifelong friend Philip and his family.
The personal caring dimension that people in places like Cherry Orchard Hospital bring to their work, makes all the difference and sustains people like me far more than the treatment or pills.
I was recently thrilled and honoured to receive the Louis Pasteur Polio Hero medal in Paris, presented to me by Sanofi Pasteur a vaccine leader against polio, working with the Global Polio Eradication Initiative. They also honoured four Pakistani vaccine administrators who risk their lives to do their work.
I ask, if the people who attack vaccination teams could see me and people like me, is that really how they would like their own children to live their lives?
Also I appeal to the WHO and Rotary International and the other organisations working with them to eradicate polio. When their job is done, which I know will be soon, and congratulations for the great work, please consider this: turn their valuable work towards the millions of polio survivors, particularly in underdeveloped countries, who now face post polio syndrome.
For more information on polio, post polio syndrome or to find out about the support provided by Post Polio Support Group to polio survivors, call 01 889 89 20, or see www.ppsg.ie.
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