Blog 13: Dignity and Quality of Life issues for people affected by chronic condition.

Written by Jim Sheehy

Hi.  My name is Jim Sheehy.  This is reallyhuman.ie and this podcast is about Dignity and Quality of Life issues for people affected by chronic condition.

Ever thought of ending it.  That’s it.  Cut out the shitty sentiment and be rid of me, the mess and the pain.  I’d be surprised if you didn’t.  Chronic condition is a zone when our body and mind have blazing rows; when one or the other go into lockdown and freeze the world out. 

We people with chronic conditions are a very small minority of the population.  As I go through a busy airport, there aren’t too many wheelchair-users or people with oxygen-masks. So we stand out.  We’re different and the world of normal has to decide where or whether we fit in.  Even we with chronic conditions disagree as to where and whether we fit in.

So how do we describe dignity and quality of life.  The question usually arises in the terminal phase of managing a condition.  Medical ethics collides with human rights in regard to autonomy.  When we are so dependent that choice and decision-making is no longer considered an option, we quarrel about the dignity of what is living and what is unfair to the affected person. 

So how to make this choice, a conversation between the person affected, the medics and the family.  My belief has changed from being dogmatically me-centred when demanding my right to end it when my capacity to function became animal or vegetative, and not human.  My heart would fill with rage when the thought of not having that decision entered a conversation.  Now, as I grow nearer that stage of dependency, I realize that rage was mostly terror of the unknown.  You see, I’ve had this conversation with myself while still functioning and capable of turning off the life supply.  When mentally screwed at 37, I nearly drove my car over a cliff.  At 57, when MS literally took over my body, voluntary euthanasia was seriously considered.  So why am I still here.  I think really being at the edge of that cliff and almost making the call to Zurich was part of living, a necessary part of the journey.  Something to get out of my system, and out of the conversation with loved ones I was considering leaving behind. 

Do I recommend intended suicide?  Not unless you have reached that point of the most intimate conversation you ever had with yourself.  Funny – as I returned to Dublin at 37 having decided to give life another chance,  I stayed a night at a B&B.  I wrote the lyrics and melody of the only 2 songs I ever composed in my life.  Why? Because, the mind and the body were utterly exhausted, and a bit relieved, that they were still in one piece.  That night, my spirit took over, my heart and soul, and poured out the agony on a page. You see, I met the terror and somehow I discovered a completely new part of me, a platform to change everything in my life.  Action followed – I gave up job, security, tangled relationships, changed country and took a year out to put flesh and bone on those two songs, on that week when I faced my death. 

And what about you?  Are you struggling just getting through a day or night?  Do you fantasize or even attempted to withdraw and end the struggle.  Can you right now risk leaving your mangled body and hatred-filled mind to sit with me.  Let’s look into each other’s eyes.  Deep.  Keep looking into my mangled body and hatred-filled mind. Connect. Stay. Pause. Keep looking into my eyes and see me looking at you.  Deep. Connected. Pause. Breathe. Breathe with me, in sync with me.  Feel that breath do its own thing.  You and I are different, so we breathe different.  Breathe and let it course through the innards of your fucked-up body and the head you’d like to chop off.  Breathe.  Dare to breathe in and through each tortured fibre of muscle and bone, sinew and organ.  Breathe into and through every blocked channel of your brain. Feel now my energy and your energy connect.  See these words or hear my voice.  Connect and trust me.  I know this path.  It stinks and there are bog-holes, but I know the way through.  Rest when you need to.  Sit on your hunkers but don’t go asleep.  When you decide not to go back, get up straight, a wee bit straighter and stronger, and walk with me.  Now there are others joining us. They vomit, they can’t walk but they still move, they are our companions.  They support you and me.  They show us a courage that is insanely human.  Breathe. Walk. Today. This hour.  Come into the house you’re in, the street you call home.  They await as to how you greet them in the morning – your partner, child, friend and neighbour.  They await and wonder will you burden or lighten their day by being enraged by the condition or transformed by it.  Is it fair, this condition?  Fucking no way!  But we who decide to live this hour and day can brighten the eyes of those around us and remind them that they too can survive and even thrive at times.  We have a mission, us folks with chronic conditions.  Beneath our body and mind, there exists a spirit of insane depth and profundity.  Let’s be generous in sharing our secret.

My thanks to Rosemary Byrne who generously provided the art for this blog.

Presentations on the 4 zones are also available on video and podcast through the website – see www.reallyhuman.ie

If you enjoy the material, please get the word out there among those you care for.  You can contact me with comment or suggestion via Facebook at Jim Sheehy Therapy and on Twitter @jimsheehy2017

Take care,

 

Clarifying Disclaimer:  While the material I am presenting is well-researched and suitable for the general population, I believe each person’s issues and needs are unique.  I encourage you to seek medical and/or therapeutic support if you struggle with an issue or condition that negatively and seriously impacts your life.

All material in Jim Sheehy Therapy as presented in video, blog and podcast form is copyright and may only be redistributed with permission of author.


  

 

 

 

 

 

 

Contact

Contact me:

Jim Sheehy M.Ed. MIACP
Leitir
Kilcar
Co Donegal 
F94 WV99

087 2137922

jsheehy@hotmail.co.uk

 

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