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.