Life and love

On August 26, 2011, in Disability Issues, by Paddy

Life and love

The Human ConditionPosted on 25/08/2011 by John McCarthy

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.

I’m dying.

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.


4 Responses to “Life and love”

  1. I dont know you but this glance into your you is a great gift to offer. i wish you the same wisdom for as long as you need best wishes for you and your close ones .

  2. Hi John what wonderful writing thank you for sharing
    your very precious feelings with us.I wish you and your family strenght,courage and love.You are a special preson and inspiration to all of us.Take care kind regards Catherine.

  3. Kay says:

    Thank you John for sharing this beautifully written glimpse into your heart-rending yet heart- warming world, may you and your lovely family grow ever stronger in Love, Courage, Mind and Spirit, you are a shining example to all.

    I do hope you keep on writing John you certainly have the gift!, A truly inspiring read!

    Warmest wishes to you all…Kay

  4. Kate says:

    Just beautiful Paddy – so real. May John McCarthy and Liz and their whole family be strengthened in mind, heart and spirit. Thank you John for sharing this deep part of yourself. You are all trojans.

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