Monday, 18 February 2013

The Body in Crisis


Now that I have some time to reflect back on my months at the university last year, certain events stay vivid, full of insight.

One such was The Body in Crisis event, organised as part of the ESRC Festival of Social Science in November. One of the key organizers was Susanne Kean, who I interviewed for the blog last year.

What brought me to the event was not just my interest in Intensive Care, but the fact that it would be an exploration of the experience from different perspectives, with contributions from health professionals, sociologists, academics, and – crucially – patients and their family members who had survived the critical care experience.

By the time someone is admitted to intensive care, one or more of their vital organ systems will be impaired or injured, their life will be in the balance. If they survive the experience, their bodies can take years to recover – the damage caused by muscle wastage, for instance, can last up to five years.

But as one of the contributors, Danny Kelly, reminded us, ‘We don’t just have bodies, we are bodies.’ A crisis for the body is a crisis for the mind and spirit too, especially when the person cannot comprehend what is happening, as is so often the case.

The accounts of former patients were riveting, particularly the details given by one young woman, who had been hospitalized for swine flu when she was 25, and quickly admitted to ICU, where she stayed for more than a month, her life in the balance. She brought a patient’s perspective to vivid life – the disorientation, the anxiety, the physical pain, the strange dreams and terrors that beset her – she spoke of dreaming that she had the feet of an elephant, then showed us a photograph of her in the ICU unit wearing huge blow-up sleeves on her lower legs which help with circulation and pressure sores. The mind make up its own reasoning when all around makes no sense.

The photographs that she had of her time in critical care, and scans of her first scrawled attempts at handwriting, seem to have helped her make sense of her experience, but she did not pretend that her recovery process was anything but gradual and prolonged. She had help from the Community Rehabilitation Service for six weeks, but said she was newly frightened of germs, and of coming into contact with the general public, and that the small amount of counselling she had received had helped her more than anything else. Even now, she said, two years on from her illness, things come back to her from that time.

It is estimated that around 25% of ICU patients will suffer from Post Traumatic Stress. One of the things that can help recovery is the construction and absorption of the ‘story’ – the exact sequence of events of a person’s illness, treatment and recovery, the separating out of what was imaginary and what really happened. It is standard practice in the modern army for injured soldiers to be accompanied by papers outlining the sequence of what happened to them – an understanding that psychologically we need not only to understand our story, but to be allowed to go over the details again and again, to embody that knowledge.

There is some interesting research work happening at the moment around the use of diaries and patient stories within ICU settings, and from the former patients at the Body in Crisis event, especially those most recently treated, I did get that sense of people going over the details again and again, just as one does in grief, to try to make sense of a new reality.

The ability of modern ICU units to snatch life back from the jaws of death is awe-inspiring, and to be celebrated, but for individual patients who have gone to that edge and back it is always a life changing event, a victory that is wrapped in calamity.





Monday, 4 February 2013

Two Paths



For today, another of my own stories, another part of the ICU tales - this time the wife's story. You can find the other parts here - The Nurse my Father Loved and Cecilia
















After a couple of days, they stuck a sheet of paper to the wall beside his bed. Who I Am it says at the top, and underneath there’s a photocopied photo of him smiling. It was taken at his parents’ 50th anniversary, and he’s wearing a suit. It was the best photo of him I could find, but I’m not sure it gives the right impression. It makes him seem like the kind of man that wears suits. And smiles.
Harry is lying propped up on the bed with a ventilator stuck to his face. His skin is almost the same colour as the sheets. He is sleeping or unconscious, but I can see his eyes flicker under the lids. Cecilia, his nurse, is at the end of the bed, filling in his charts. There are a lot of charts. If I look at her, she will talk to me, so I don’t look. I look at the page on the wall.

Who I am
Name: Harry Dignan Age: 55. Occupation; Human Resource Manager
Likes: Music (classical and jazz), Hillwalking, Cinema.
Dislikes: Pop music, football talk.
People: wife Valerie, daughter Dawn, brother Vincent

I stopped writing at two dislikes, but I could have gone on. Audi drivers, Tories, our neighbours on either side, stewed tea, me talking during his favourite programmes, everything our daughter wears, people on the news who add ‘going forward’ to the end of their sentences. The likes section was harder and it’s ended up as bland as a personal ad in Saga magazine. I don’t know the last time he went hillwalking, it wasn’t this year or last. But he did used to love it, and maybe it kept him healthy. He’d leave home in the dark to get to some far Monro, knocking things over in bedroom getting dressed.
Who I am. Right now I’m not sure he knows who he is. 
It should really be headed Who My Family Think I Am. The charge nurse who asked me to fill it in said, ‘We want everyone working with your husband to see beyond his illness to the person’.
You can hardly argue with that. I can’t argue with anything, I can hardly hold the thread of what they’re saying, even though I should know. All I can do is sit here. Talk to him, they say, he may be able to hear you. Everything I can think of to say feels useless before it even gets out of my mouth. I can’t even cry. Dawn doesn’t want to visit. I know it’s because she’s scared, not heartless.
Ever since they pinned up Who I Am, I think of Harry waking up, seeing it and taking issue with everything I wrote. I think of Harry waking up, but I don’t believe he will.
It’s like there’s a path that goes one way, towards funeral arrangements and a big blank afterwards, and there’s the path that goes to having him home, but not as he was before. I don’t want to go down either way, that’s the truth.
I was nurse myself. Gave it up when we had the baby. I don't know if I've the strength to be one again, even for Harry. I haven’t told anybody here that, though one or two of them have looked at me closely when I’ve used certain words. Nurses have a way of recognising each other – the steady eye, I think that’s what it is, or the slanted humour. I don’t want them to know I’m a nurse because I don’t want them to tell me too much.
When I can’t sit anymore, I go to the visitors’ room and make a cup of tea, look out the window at the car park. The consultant and Cecilia are suddenly standing there beside me, asking if they can have a word. It’s cold in the room. The consultant has yellow curly hair. She’s young, but as she’s talking to me, I’m looking at the crease between her eyes, thinking how deep it is.
She’s asking if I understand.
‘No,’ I say, and she starts over again.
‘We’re decreasing his sedation.’ she says, ‘Gradually.’
‘You’re letting him go?’
‘No!’ says Cecilia. ‘He’s coming off the ventilator. It’s good news.’
Good news. I feel like I’m going up in a fast lift. Cecilia has her arm around me. Steady. Sitting down now. The consultant gone. I realise that my hand is gripping the bare skin of Cecilia’s arm. Her skin is soft like a child’s. I almost tell her that. I want to babble about her skin, about baby oil versus moisturisers, but I can’t because nothing in me is joined up.
She lets go of me, and I press myself into the padded back of the sofa. My mouth opens and salt tears dribble into it. Cecilia turns away, then back. In her hands is a big white burst of tissues, lovely as a flower.