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By Ann Marie Healy
About the Book:
A little girl of five and already living in a body that hurt constantly. Ann Marie had only been in her first year in a small country National School in the west of Ireland when one day on arriving home she complained of pains in her limbs…. This was the start of a grip of pain that spanned through the years. The Rheumatic Fever raised its heat as Juvenile arthritis by the time Ann Marie was ten years of age, and she eventually had to use a wheelchair in her early thirties. Operation after operation and strong determination has made life bearable for this enthusiastic woman…. The book is a collection of diaries kept by her through the years of having to cope with pain. It will open your eyes to a real life situation and prove that there can be joy beyond the pain.
Ann Marie Healy, the daughter of Seamus and Mary Kate Healy, was born into a family of sixteen children, ten boys and six girls in the rural village of Ballinaboy in north County Mayo. In common with her peers, she enjoyed the freedom and joy of living in the countryside, surrounded by family and friends. But then things began to change dramatically when she was ten years old due to the onset of rheumatoid arthritis, a progressive inﬂammatory condition that causes damage to the joints. “When I was a child, arthritis was just a big word,” she recalls, “All I cared about was doing the same things that my school friends were doing, but it was hard. At school, I had difﬁculty writing and would get very tired.”
Ann Marie has undergone several operations including hip, knee, shoulder and elbow replacements. There is no cure for the condition but these days, if it is caught early, drugs can be quite preventative. She readily acknowledges that she has had several “bad patches”, where she has found things particularly tough. For example, in her ﬁnal year of college, she had to have extensive joint replacement surgery, which meant completing her diploma from home. “Throughout my life, I’ve had to deal with chronic pain. I take morphine and employ conscious strategies to keep my mind off the pain…listening to music, watching a video, and generally keeping my mind active. If you don’t keep busy, you become more aware of the pain and it takes over.”
She was always concerned about becoming a burden on her family and valued her independence. It helped immensely that they were supportive without being over-protective. “My family knew if I needed assistance I would ask for it and were always there to support me in achieving my goals.” These goals included pursuing several educational courses and achieving her dream of going to college at Sligo Institute of Technology, where she studied social science. Living away from home was a big step but Ann Marie loved the whole college scene, and the opportunity to meet new people.
She believes that positive thinking and surrounding yourself with positive people, enables you to achieve a great deal despite facing daily challenges as a result of arthritis and chronic pain. You need to focus on what you can do. It is a testament to her courage and determination that Ann Marie was awarded the Erris Person of the Year in 2008, an honour which recognizes an individual who has made an exceptional contribution to their local community. Her ongoing work to highlight the rights of people living with disabilities has stood out. As she wasn’t in a position to work full time, she made a decision to do part-time voluntary work with organizations such as The Irish Wheelchair Association, The Mayo Centre for Independent Living, Arthritis Ireland and People with Disabilities in Ireland.
Lobbying on issues such as access, transport, employment and healthcare helps to keep them on the political agenda. “I am lobbying with Arthritis Ireland for the appointment of a rheumatologist in Mayo General Hospital, so that people like me don’t have to travel to Dublin all the time. I also believe that people with disabilities should be entitled to free transport to hospital if there is no accessible public transport available”.
Personal assistance (PA) services are hugely important to people who are living with a disability. “I am able to live on my own with the support of home help and a PA for 30 hours a week. Having a PA enabled me to finish college and to get involved in a lot more voluntary work. In 2005, myself and my colleague Pat from the Mayo Centre for Independent Living went to the European Parliament to try to emphasize the importance of funding for PA services to support independent living. I find that if you bring an issue to their attention, some politicians are very slow to act. At the end of the day, it all comes down to funding.”
“I get angry sometimes but I channel my energy into writing letters to politicians. I constantly emphasize that people with disabilities want to live independently and to work – they don’t want to be caught in a beneﬁts trap! Ann Marie strongly encourages other people with disabilities to get involved with voluntary work. “It might just be sitting on a committee where you can contribute on access issues, or it may be volunteering in a day centre. It really is worthwhile. Sometimes all a person wants is someone to talk to. We all have problems to deal with and we don’t like to burden our families.”
Over the years Ann Marie kept a diary, detailing her thoughts and emotions as her health deteriorated, and she was forced to overcome many challenges in coping with her disability. Through the pages of her diary, and in her own words, we are presented with a personal account of what it is like to live with disability in Ireland today.