Listening to writer Hanif Kureishi – who suffered a spinal injury 12 months ago – guest editing BBC radio 4’s Today programme over the festive period made me realise that an update is well overdue. I apologise upfront since this has turned into a bit of a ramble. The programme is well worth listening to, although it is now only available in an edited form.
https://www.bbc.co.uk/sounds/play/p0h1n08v
Although my own objective was always to try to highlight the humour in my awful situation, what impressed me about Kureishi’s editing was the frankness with which he described his situation (probably marginally less dismal than my own). Some of his commentary resonated whilst some of his reactions and thinking is at odds with my own experience. Here are a few observations on the wider experience of spinal injury that he touches upon:
• The instant transformation from a “normal” life to a permanent state of disability and the slow realisation that this will not change. The permanent pain, helplessness and hopelessness become a routine part of daily life. Along with the huge challenges of facing a broken care system alongside a broken body, this new reality slowly drains life away.
- The experience of waking up each morning and realising that one is still disabled after all and one won’t be able to simply get out of bed and carry on as normal. This is reinforced by the odd fact that my own dreaming brain still fails to recognise my disability. In dreams, which share some recurring themes (pathfinding and navigation through unfamiliar landscapes, disrupted travel), I am always able-bodied, occasionally with a sense that I have recovered from injury.
- The unpredictable reaction of family and friends to sudden disability. It has left deep scars on those closest to me and – 5 years on – the adjustment process continues. It has probably brought the family closer together. Not everyone is at the same stage in the process of adjustment and, for some of the family there is still a desire to “fix” me. It’s probably a consequence of my age and the reality that I don’t have a long bucket list still to complete, but the cost of exploring every possible fix is simply not worth the effort. As Kureishi observes, the reaction of friends is unpredictable. Some rally around with either practical or emotional support (or both) whilst some simply don’t know how to react to the situation or find it far too painful. I certainly don’t blame anyone here. I know that everyone around me is doing their best.
- Anger seems to be a common reaction to catastrophic spinal injury. There are often good reasons for this, for example if someone is injured as a result of a deliberate, reckless or careless act by other persons. However, it seems that many people feel anger at the simple randomness of life and the cruel blow it has dealt to them. My own reaction was, and continues to be, different. I have been deprived of at least a decade of good health with my family and friends and, if I chose, could seek someone to blame – a careless individual, event organisers or helmet manufacturer. I’ve not chosen to do this. From the start, waking in hospital without movement or speech, I have been grateful for the 60 odd years of good health I have enjoyed and all of the experiences this has allowed. If I had sustained the injury at age 16 rather than 61, I might feel quite different. Perhaps also, my use of actuaries’ mortality tables and my work with risk and randomness left me better prepared for an event as likely as a life changing lottery win.
- Kureishi talks about one of the many odd unanswerable questions that pop into the disabled brain from time to time. Would one ever be able to give the care and support that professionals, family and friends bring to the awful situation? Of course, it is unanswerable but questions like this do niggle away in the early hours of the morning. I could add a few others. If I could return to the roadside immediately after the accident and offer direction to the doctors who saved my life, what would it be? If I could trade the rest of my life in care for a few days or hours or minutes of able-bodied life, how long would I accept? The answer can probably be counted in minutes or hours. Again, an entirely hypothetical question. With my economist’s hat on, I could also question the social value of the eye-watering cost of my care given the benefits in terms of life and quality of life it delivers.
As I approach the 5th anniversary of my accident, I do find myself increasingly battle weary and wondering how much appetite I have for enduring the everyday routine and the system which purports to offer care for the most vulnerable amongst us but falls so badly short. As always, the low light which the winter months bring (sunrise a little before 9 AM at the turn of the year) certainly does not help my mood and I recognise that I do need to challenge my own thinking when the days get longer and my mood is most likely lifted.
Recently, there has been considerable attention on the NHS and the real terms pay cuts that have been imposed on staff in the NHS and across the public sector. Far less attention has been given to the care sector which is largely privatised and facing even more strain as a result of, arguably, a combination of policy failure, underfunding and a reluctance to face up to the fundamental question of how individuals are able to choose to end their lives. I could also question the assumed “solidarity” between generations – the degree to which younger workers are now expected to finance the care and old age of older generations that have enjoyed the benefits denied to them (housing which was affordable and in reasonable supply in places people choose to work; the ticking time bomb of pensions rights; University education, albeit for a smaller group than today, funded by the taxpayer). The age of the “student grant” is now a distant memory replaced by a student loan system which saddles young people with debt at the beginning of their working and saving lives.
As I explained in a previous blog post, I manage my own “Self-Directed Support” with a direct grant from the local authority. Over the 3 years or so since leaving hospital, I have used over 50 individual carers (as well as random agency workers – typically just a pair of very expensive hands). Without the support of foreign workers, who normally easily outnumber the domestic workers, I would be in deep trouble. Despite all of the negatives in recent years, the UK remains an attractive destination for workers from many countries which lack things that many of us take for granted (safety, the rule of law, generally tolerant attitudes et cetera). In my time in the world of business, I did feel there was some modest truth in the national stereotypes we grow up with – well-organised Germans, emotional French et cetera. It has amused me how many have been turned on their heads in the care room. Of course, foreign workers are not typical – they have made the deliberate and active decision to move from a familiar (possibly hostile) environment. However, the amazing energy, honesty and sheer hard work offered by Italians, Greeks and Africans alongside the huge array of other nationalities confounds the stereotypes. It’s not surprising to me that the net migration to the UK seems here to stay (and not necessarily a bad thing at all). The structure of our visa schemes – generous by comparison with, say, the US – plays a part in the picture, together with the increasing reliance of our universities on foreign students to cross subsidise domestic students. This creeping change to the shape of our university sector is yet another example of how the lack of thought on government policy (both North and South of the border) has done such damage. Perhaps, this year might see some change in political leadership which begins to challenge the political dogma that has done such damage in recent decades on both sides of the border? Finally, on the health front, things are as chaotic as ever with no significant progress or setbacks – bowels as erratic as ever, blood pressure bouncing around like a jack-in-a-box. December brought a minor struggle with infection and I am slowly rebuilding my depleted energy banks.