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Reflections on recovery after head injury. By Craig Newnes
Much is written about the theorized neurological substrate of a variety of both physical and psychological conditions. Most of this material is in the form of experimental data derived from animal and, more recently, virtual studies. Increasingly, human subjects provide information from which hypotheses about brain function can be made. The works of Sachs fall into this category. Less common are examples of people writing their own accounts from a position of knowledge of the supposed neurological or psychological processes involved.
In December 2003 I suffered a closed head injury with three brain haematomas following a road traffic accident. I also incurred multiple injuries including a crushed sternum, broken ribs, broken clavicle, punctured lung and neck fracture. At the time of the accident I was Chair of the British Psychological Society’s Psychotherapy Section, editor of several books and journals and a consultant clinical psychologist with 25 years’ experience in the NHS. This included numerous psychometric investigations of head injured individuals. The accident was followed by a three-week period in a coma, extensive post-traumatic amnesia and investigations by a rich variety of fellow NHS professionals.
Discharge from hospital was followed by neurological consultation. I had hoped that this piece would be co-written with Simon Nightingale, my consultant. Like countless others in the NHS, he has been too involved in his regular work and saw writing as something of a chore. We wanted to examine in greater detail my experiences of recovery with particular reference to five key areas: writing, time, memory, sound and colour. A variety of neurologically based explanations were to be put forward for these changed experiences. The lack of Simon’s input has meant a much diluted attempt on my part to say something about this. So what we are left with is an account of my experiences, a rambling dissertation on the nature of consciousness and a bloke who is grateful to have survived at all. Context during recovery has been critical. I would now question what on earth is meant by ‘recovery’ for people going through major trauma. Have I recovered? Let the reader decide.
Writing I can write. Since waking up at home some weeks after the accident I started writing. This didn’t involve recall about anything specific. I couldn’t remember the hospital (bar a couple of incidents), the fact I was a psychological therapies director or even that my partner was eight months pregnant. But I could write, and edit. This seems to be an example of motor memory, albeit one considerably more intact than my memory for playing guitar. The latter slowly moved from utterly absent to, more or less, complete. This took many months. The writing was immediate, either on e-mail or in producing a daily diary – mostly concerned with rib pain. This quickly became a published piece. Long before I could properly dress myself, balance on one leg as recommended (only one of many equally odd recommendations) and in the midst of several false memories I wrote the following:
The wider picture evaporates. Global warming? Neither here nor there. Weapons of mass destruction? Irrelevant. British politics? Love Actually is more interesting. Sport? Who cares (especially about motor racing)? In this new world, environment is everything. People close at hand must be kind (they are – thank you all), trains as timetabled, traffic wholly safe and stimulation not too complex. Health professionals must be on time or fear and self-doubt mount. Noise must be controllable (hypersensitive hearing is quite something in conjunction with spinal injury: scraped chairs and certain pitches of voice send the body into spasm, legs and arms twitching like lightning conductors). Imagine this on a housing estate; cars starting, people shouting, children merely playing: all innocently rendering some neighbours dysfunctional without a thought. Many know this already. It is part of their everyday life. And life, even getting out of bed, is exhausting (Newnes, 2004b).
Writing mania duly followed. Editing a special issue of Clinical Psychology (Radcliffe, Sinclair & Newnes, 2004) was accompanied by a special issue of the Journal of Critical Psychology, Counselling and Psychotherapy. Four books, including the ubiquitous novel, were started and a septet of articles appeared within a year (see references). Two books were commissioned, edited and published in the PCCS Critical Psychology series (Godsi, 2004; Lynch, 2004). Then 2005 proved even more productive. The novel was finished, a book was coedited (Newnes & Radcliffe, 2005) and another commissioned and edited (Smail, 2005). Writing articles got out of hand (15 – see references). Book reviews and press releases have simply flowed. Indeed, at one point I wrote a press release about our cleaner’s new business and was reviewing anything I happened to read. All of this seemed, while struggling with a barely responsive hand, to take for ever.
Time Since waking up in the intensive treatment unit my sense of time has been distorted. A few minutes in the garden can seem like a day. An hour can feel like seconds. I have wondered how contextual this might be. After all, for months I was away from work, with no time pressures, no deadlines or constraints (other than the natural demands of the need to plant at certain times, harvest at others) and no one to please but myself. At one point, weeding turned into an obsessive ritual whereby an hour would see the careful uprooting of every undesirable in a small area; anything up to a square metre might be cleared in this way. The closest thing to this phenomenon is the similar clearance of fluff from the carpet, also by hand, that has continued to surprise me from time to time. It is as if any unwanted dirt or weed is a terrible intrusion worthy of the closest attention. My partner, Jacqui Leal, went through a similar, and now horribly familiar, period when she was dying of cancer. Alongside the obliviousness to the passage of time, such bursts of activity could leave me on my knees for half a day. There are advantages to time distortion providing that there are no children to pick up from school or other responsibilities to fulfill. Every day, especially the sunny ones, can become an intense pleasure. My 50th birthday seemed to last for weeks, my 51st several days.
Memory I was once told I had a near photographic memory for dates, authors, book titles – anything but faces. The accident robbed me of about 18 months of memory. Imagine going to sleep aged 49 and waking up thinking you are 47. This proved fascinating for the police investigating the accident. They asked what my most recent memory had been and I duly told them I recalled going out the previous Friday night (the accident happened on a Tuesday). The problem, I have subsequently realised, was that the previous Friday had been very similar to one over a year before. Had they asked about the most recent Thursday, Wednesday, September, summer or spring I would have been lost. This was more apparent when I was asked to identify my car and didn’t recognise it, having purchased it the previous December. It just didn’t look (to me, at least) like the kind of car I would drive.
As time has moved on I have discovered a wide range of things about my memory. I am back to remembering dates, authors and so on. In any given context – my office, my garden, the shower – memory floods in. I recall my staff and clients’ histories as if they have only just told me; I know exactly where I had intended to plant, weed, sow, whatever; and I know where I keep the shampoo as if it’s never been anywhere else (it hasn’t). In other ways, memory has deserted me. I have never kept lists and don’t have the habit, but this was a huge problem for many months. I would wander round the garden with no idea of what I had intended to do, would happily put dishes to be frozen in the microwave rather than freezer and so on.
And then, a revelation. Half of my friends do this sort of thing all the time. So now what do we have – brain damage, the ageing process, or normality?
Sound ‘Play loud’ was the advice on some record sleeves and the motif of every electric guitar player in the land. This was the advice of my hearing therapist after she discovered I had bought an electric guitar (do all 50-year-old ex-hippies do this?) Her advice followed my description of the following symptom. Certain pitches, notably those produced by the shrieking of children or unwrapping plastic packaging resulted in an almost immediate paralysis of my right side. This several times resulted in my falling over. All this has been complicated by a constant tingling in my right hand and a cold sensation in my right arm, shoulder and back. I am more or less impervious to hot and cold in my right hand. The noise doesn’t hurt as such; it is the consequences I dread. If travelling as a car passenger while children are shrieking behind me I still find myself grasping the handle above the door as if the noise will somehow result in me being hurled from the vehicle. When the noise stops, recovery is very rapid; indeed, I recover quicker than shocked friends who have not seen it happen before. To have this effect the noise must be repeated and, crucially, out of my control. The hearing therapist’s advice was for a form of flooding, but flooding controlled by myself. This contrasted with other advice to wear ear plugs, a manoeuvre that merely resulted in my head echoing with the sound of my own voice whenever I spoke.
Part of my own explanation for the distortion in my sense of time is the change in two perceptual modalities (four, if one considers the loss of particular tastes and smells in the months immediately following hospitalization). Sensitivity to certain sounds is gradually returning to my pre-accident state. Sensitivity to colour has been heightened to an almost synaesthetic degree. Bright blues feel like the Mediterranean. Red is hot. The sheer intensity of colour alters my awareness of the world. Coupled with my sensitivity to sound and acute awareness of physical changes (e.g. I was for months fearful of falling in case I damaged my ribs; starting a lawn-mower resulted in a hernia) it seems likely that this change in awareness will have contributed to my altered sense of time. Colours are now glorious if bright and depressingly grey if dour. The contrast between the blue of the Irish sea and the wan faces of some of my fellow passengers on a boat trip to Ireland proved riveting. I switched between the two for most of the journey.
Consciousness These experiences represent a change in consciousness. Some might say that my consciousness of time and colour have been heightened. Critically, consciousness has at least two components: awareness and awareness of awareness. The changes have all involved a dramatic shift in the way I perceive my experience. I have become aware that, if my right hand and left feel things differently, then my right hand’s experience of touch might be similar to some people’s experience and my left hand’s experience may well be closer to the way things feel to other people. Equally, both may be unique to me. Certainly, my experience of memory has been a revelation. It now appears that numerous people experience what I would have previously thought of as memory problems; the experience of forgetting everyday things and needing to keep a list is commonplace.
The opportunity to experience things anew doesn’t end there. For example, I now have a much keener idea of what it is to be a recipient of clinical psychology services (see Newnes, 2005e). Being investigated by the police was quite something too. Exhausted by walking from the car to the police station I was nonetheless grilled for two hours by people simply waiting for me to admit I had been driving erratically. As I couldn’t remember anything at all about the accident, this would have been quite an admission. Worse, because I couldn’t associate the accident, or even the car, with myself, I would have appeared not to care. I have experienced some quite marvelous NHS care including that from my neurologist who took the trouble to call at 8.30 at night to say my brain was ‘beautiful’. Two chiropractors have been key to a new-found appreciation of the importance of diet, balance, breathing and neural pathways: chiropractic adjustment should be on the school curriculum.
There have been some less helpful interventions too, like the occupational therapist who called me minutes from my appointment time to say she wasn’t coming because she had a cold. My experiences of clinical psychology have varied widely. The majority of my clinical psychology colleagues have proved invaluable. Visits from the clinical psychologist in the local head injury team were less predictable in their usefulness, from an insistence that my frustration was due to frontal lobe damage (even though the psychologist had not seen my brain scan as it had been lost) to a remarkable, and consciousness-changing, discussion about my inability to see anger in people’s faces. The conversation triggered an awareness that I have never been much cop at this and tend not to be frightened in a host of situations that should invoke a defensive, or at least cautious, response.
This last example of a change in consciousness is but one where recovery has included new ways of seeing myself, both as I am and as I was. No doubt I share with many others a desperation to ‘pass as normal’, at least in terms of sensori-motor abilities. This is something that never concerned me before. I didn’t mind being short-sighted; even quite liked wearing glasses. Changes in my ability over the last two years to read newspaper print or recognise faces have been accompanied by a sense of failure and a need to cover up.
Covering up can be helpful in terms of physical recovery. I was determined to look like I could walk normally again (despite a sense of balance that seemed to have gone from pretty good to non-existent) so I took to cycling to work and swimming far more frequently than before. Exhausting though this regime was, it seems to have been a key factor in a return to regular games of squash and being able once again to take the stairs at work three at a time. Covering for memory changes was much more difficult. In a familiar context, especially at work, memory would just flow back. Unfamiliar territory proved a different story. Thankfully, a mobile phone allowed me to check where I was meant to be going if I forgot whilst changing trains and even allowed me to check train times via National Rail Enquiries on the numerous occasions that I failed to remember departure times are displayed above platforms (Duh.)
One conception of recovery seems to centre on the idea that we can recover our abilities, whether they be physical or cognitive, in a way that other people would regard as similar to how things were before an injury, accident or illness. These abilities tend to be seen as a matter of internality, even to the point of being specifically located in the brain. Consciousness changes all that. We might be aware of some aspects of our being, yet totally unaware of the ways others see us. A change in consciousness might make us more aware of some things and less aware of others. Others tend to judge us on our physical appearance of normality or otherwise. ‘You look really well’ can be an extraordinary message to hear while lost in a fog of pain and painkillers without the remotest memory of who the person speaking might be. Do we recover? Or do we move on, assimilate, adjust?
At a seminar for other head-injured folk I heard a story of a man who, post accident, had taken to spending freely on e-bay. His latest purchase had been an industrial candy-floss maker The group found this hilarious. His wife had been less pleased, but at least he could afford it. Had he gone deeply into debt, a psychiatrist might have diagnosed mania – merely for doing what thousands do every day. Taking such a position, the medical world might have said he wasn’t recovering very well. Had the head injury and subsequent entrapment at his keyboard been seen as releasing him from a lifetime of penny-pinching, then judging him merely recovered might have fallen well short of the mark. For as long as I can remember I have been grateful merely for being alive. Now I am grateful for a second chance. Is this recovery? Perhaps….
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