John mccarthy: life and love
Aileen Conway UCD School of Medicine and Medical Science, University College Dublin, Belfield, Dublin 4, Ireland
This article, ‘Life and Love’, was originally printed in the Cork Independent on the 25th of August 2011 in John McCarthy’s column called ‘The Human Condition’ (1). John lived with Motor Neuron Disease (MND) for the last two years and chronicled his journey of living with MND and mental illness in his column since 2009. ‘Life and Love’ was later recorded by John and broadcast on Newstalk 106- 108fm (2) and generated a huge response from the general public and media alike. ‘Life and Love’ is a very honest and emotional account of how an illness such as MND can affect not only every aspect of a person’s own life, but also the impact a chronic ill- ness can have on the family as a whole.
John, in his own words, lived, not suffered with mental illness for many years and was an outspoken and often controversial advocate for the rights of those living with what he termed ‘the normality of mad- ness’. He was the founder of Mad Pride Ireland, a lobby group for mental health issues. Mad Pride Ire-
land has organised many events to generate debate and reduce the stigma of mental health issues in Irish society, such as the Mad Pride Festival which was first held in 2008 and was held in Tullamore, Portlaoise and Cork in 2011. John had also recently been appointed to the Implementation Group for the National Disability Strategy by Minister Kath- leen Lynch, Department of Health and Department of Justice, Equality & Defence, with responsibility for Disability, Older People, Equality & Mental Health. Sadly, John passed away at home in Cork on the 10th of January 2012, aged 61. He is survived by his wife Liz, his children David and Jill and his grand- children.
The editors of the UCD SMJ would like to thank the Cork Independent for allowing us to reproduce ‘Life and Love’ here and would especially like to thank John’s family in giving us permission to reprint John’s article.
“Pain in the body can be handled so much easier than pain in the spirit”
I have been thinking about writing this for a bit.
When friends ask me how I am, “I’m grand” is the stock in trade answer, with a smile. Or “as good as it gets”. A few ask how do I retain the humour? A few suggested I write it down, warts and all. So here it is.
If I don’t complain or crib, then I will not feel so bad. It works; it works very well. Most of the time!
We in this house are going through hell right now.
We know how hard it is for all of us, but we smile most of the time. We remain calm, most of the time. I am stuck in the bed, most of the time. Outings are rare and tiring. Taking a leak, a nightmare! Putting on socks, underwear, pants, exhausting. Sitting up in a chair - exhausting. Not able to walk. Sponge baths! Losing the use of my hands. Basically, my life is gone to shite.
This motor neurone is relentless. The old name is so much more descriptive - creeping paralysis. That is what it is does, it creeps over your body, like a rapist. I cannot stop this disease destroying my body but I can prevent it destroying my mind and spirit.
You know there is an opportunity in everything, and in every situation. We as a family are closing ranks and showing our strength. Growing!
I would suggest, even, that this family is getting stronger. There is a lot of love in the air in the house, there is a lot of sadness.
When I need to, and I do, I cry, scream and vent. Alone, when they are out, they know it.
I tell them, and they say it helps to know.
I have learnt to be very open about my feelings whether they’re good or bad. Some cannot handle that level of truth. My family can. And they do me the great honour of telling me “will you cop on?” when I run away with myself.
So, I just cry -not too often mind you - but I do it, and it helps. It does not help as much as a deep breath and a smile when my beautiful wife returns, gently opens the door and asks “You all right?”
I can smile and say “I’m grand, you?”
“Me?” she always lies, “I’m fine, cup of tea?” and we get on with this shite.
Liz, being Liz, walks the pressure off in her beautiful garden and vents in her space.
She rarely speaks of her pain, but the story is in her face at those brief moments when I see her and she can’t see me. If she catches me glancing, that beautiful smile magically reappears.
This paralysis is nearly as disabling for Liz. Her whole life has been shagged up, she is on a new, unexciting, heart-rending, heart-breaking career, love is forcing this choice on the woman I love, she is a carer now. I so hate that, I so hate seeing my beautiful wife under this strain.
We all make an effort to smile through the strain, and we all see the strain through the smiles.
My family, the four of us, have sat at the kitchen table, looked into each other’s eyes and hearts and agreed to stay united through this.
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.
My daughter and my son are in their mid-thirties. They’re great, and they have their own families to distract them, thank God. I know it helps them. They give me huge strength, giving too much of their time but I am greedy for it.
I have an extended family now, grandsons! One side with a nana and a granddad, one with a granddad.
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.
I have great friends who visit, and we have talked this out. I think most of them call to drink my stock of gin! But I really hope the gin does not run out, I love the company.
So I have a choice: I can allow all this to overwhelm me or I can smile. I can only smile if I keep the mind busy. So I work in the bed for eight - ten hours a day. I write, make calls and stir the media and political pot to keep this fight for human rights of the mad community on the boil.
I love it. I love the progress we are making.
I cannot imagine having something like creeping paralysis in the old days when a cripple was a cripple, before computers, mobiles, skype, all of that contact with other human beings from the bed.
How and where did those in the past find the strength to live with this cruel way of dying?
Mad Pride is working hard to get its autumn national radio campaign in place to stop force by scrapping mental health laws.
What is going on in my spirit? I am simply experiencing the beautiful side of madness, I have a sense of peace, because I have found that essential unselfish way of loving myself.
The normality of madness! Being quietly confident!
Having spiritual disquiet, depression is the most crippling method of destroying a human being. Pain in the body can be handled so much easier than pain in the spirit.
I will take the last few years I have with creeping paralysis, but with my spirit growing, rather than 20 years with depression and my spirit dying.
I have been there, that place of self isolation. That was truly awful.
McCarthy, J. Life and Love. Cork Independent. Aug 25 2011; Issue 34. Available from: http://corkindependent.com/stories/ item/4061/2011-34/Life-and-love
Newstalk 106-108FM Podcast. John Mac. http://www.newstalk.ie/2012/recommended/the-newstalk-week-4/ (Accessed 15th Jan 2012)