Campaigner says he’s in ‘hell’ with fatal illness

By Ralph Riegel

Sunday August 28 2011 Sunday Independent.

A MENTAL health campaigner has courageously spoken of his imminent death from Motor Neurone Disease (MND) in a bid to boost supports for sufferers of the condition nationwide.

John McCarthy, 61, founder of the Mad Pride movement, said that while he tries to wear an outward smile despite his condition, the fact that he won’t live to see his grandchildren grow up has broken his heart.

There are 300 people diagnosed with MND in Ireland each year — with Cork having the highest per capita rate of diagnosis with 41.

Mr McCarthy, who contested the General Election in Cork in 2002 in a bid to raise the profile of health issues, admitted that he was now “going through hell”.

He spoke out to highlight the condition and boost support for the Irish MND Association.

IMNDA has two nurses employed nationwide to support patients with the disease and wants to expand its services. “We are going through hell right now — I’m dying. I cannot stop this disease destroying my body but I can prevent it destroying my mind and spirit,” he said.

The father of two said MND was best described by its historic name — ‘creeping paralysis’.

“It creeps over your body like a rapist — this MND is relentless. I am stuck in the bed most of the time. Outings are rare and tiring.

“Putting on socks, underwear, pants — it is exhausting. Sitting up in a chair is also exhausting. I’m not able to walk. Basically, my life is gone to shite,” he said.

Mr McCarthy said the silver lining was the incredible support and love of his family and the kindness of friends and colleagues.

“There is a lot of sadness (but) there is a lot of love in the air in this house,” he added.

The campaigner said that his family could handle the truth no matter how painful it might be about his prognosis.

Mr McCarthy said his “beautiful wife Liz” had been a stalwart support even at the most difficult times.

“The story is etched in her face but she rarely speaks of her pain. If she catches me glancing at her that beautiful smile magically reappears,” he added.

He said that one of the most difficult things he had faced was seeing the impact the disease had on his family and the fact that his wife had been rendered “a heart-breaking, heart-rending carer”.

“I so hate seeing my beautiful wife under this strain.”

But he stressed that his family of four was determined to remain united and strong throughout the trials ahead.

“It is love at its best. They are doing for me what I have done for them. They are looking after me and I am making it as easy as possible for them to look after me,” he said.

Mr McCarthy said that what has caused him most upset is the realisation he wouldn’t see his grandchildren grow up.

“It breaks my heart that I will not know them as men. I get pangs of jealousy, when I see the other two granddads, playing, walking with the boys,” he explained.

But he vowed that, in the time he has left, he would work hard on his projects including the scrapping of mental health laws and ensure that while the disease may overwhelm his body it won’t dent his spirit.

“Pain in the body can be handled so much easier than pain in the spirit,” he said.

Mr McCarthy’s son, David, a candidate in the 2011 General Election campaign, said his father had been an inspiration to all around him.