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VOICES

'I was devastated at receiving a diagnosis for a condition that has no cure'

Geraldine O’Neill was diagnosed with post-polio syndrome in 2002. It’s a condition that not many people know about.

LAST MONTH I took part in the celebrations forworld polio day. Many wonder, ‘is polio not gone?’

Although the fight to eradicate the virus is gaining strength every year, I feel it is important that people are aware that polio is still around in the world – and also know that there is a large group of people in Ireland (including myself) who are now struggling with the effects of a follow-on condition called post-polio syndrome.

I was first diagnosed with post-polio around 2002. My initial encounter with polio (as a baby of nine months old) left me with a weak arm, similar to Mary Berry, the famous cook. Although it did cause problems at times, it did not deter me from going on to my chosen career of teaching and then a second career in writing.

Leading a full life 

I also got married and had two children. I had a busy life with school, family, lots of hobbies such as running and art, and a full social life.

The sting in the tail came in my early 40s when I noticed my arm had become considerably weaker. I loved swimming and was unable to do the front crawl anymore or any other stroke which involved lifting my shoulder. I had to drop out of my advanced swimming class as I could no longer keep up with the others and I was limited to swimming breast stroke. Then I went on to experience bouts of severe fatigue which affected my concentration, muscular problems and cold intolerance.

Undaunted, I plodded on with the same busy life – some days I felt good and other days I was in a fog of fatigue and was really struggling with everything.

Around that time, there was a polio awareness day, and my husband read a feature about the post polio support group (PPSG) and saw a list of symptoms – most of which I had. There was then a news report which my daughter saw, which rang bells with her. They both sat me down and told me that they thought I had post-polio syndrome.

Getting my diagnosis 

I was adamant that I couldn’t have something related to my old childhood polio, but deep down I knew there was something wrong. After chatting to my GP and then being directed to the post-polio clinic in Beaumont Hospital, soon afterwards I was diagnosed.

To say I was devastated at receiving a diagnosis for a condition there was no cure for, is an understatement. But, I picked myself up and decided to find out as much about it as I could, in order to lead as full a life as possible.

Initially I joined the PPSG for information and sharing experiences about the condition, but, as the years went on – and as I got to know members better and made friends within the group – I could see the wide and varied lives we had all led, in spite of the limitations that polio caused. I also learned of the achievements many people had made, and how they refused to let themselves be defined in a negative way by the virus which had entered all our lives.

Getting support 

To mark the occasion of world polio day, and to highlight the legacy of polio in Ireland, the post-polio support group launched a collection of writings by Irish members, titled ‘How We Survived and Surprised!’ of which I was editor. This book, a collection of personal stories, poems and images was officially launched by Marian Harkin MEP.

The book came about back in 2013, from writing workshops as part of celebrations of 20 years of the PPSG. The workshops were led by me and supported by Laois/Offaly Convenor Bernie O’Sullivan. The theme centred on a celebration of the valuable lives we have led regardless of the early and late effects of polio, and was given the upbeat title  to reflect that.

I didn’t really know what to expect, as my writing interests and my involvement with the PPSG had not really crossed paths before – although I was working on my eleventh novel, A Letter from America, which had a central character with polio.

I was impressed by the both the talent and the willingness of the members to try out new forms of writing they had never tried before. The finished product highlights the bravery and tenacity of the group, and is filled with beautiful imagery and a good dash of humour.

Geraldine O’Neill is an international author and retired school-teacher. Born in Scotland, she has been living with her family in Offaly since 1991. She has published 11 novels and her latest, A Letter From America, features a polio character.

For more information on polio and post-polio contact www.ppsg.ie or 01 8898920.

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Geraldine O'Neill
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