The positivity myth: a belated response to 60 minutes and the Curtis Landers story.

Curtis Landers

60 minutes report: http://video.au.msn.com/watch/video/curtis-landers/xwf16yz?from

I hate watching television reports on spinal cord injury, which normally to follow a predictable two-part pattern. Part one provides pictures of neck braces, helicopters, ventilation machines, and shocked families, all of which is a visceral reminder of the horror of my own injury, bringing back memories I’d rather forget. Part two describes a person’s inspirational recovery, in which she or he refuses to give in to disability, and so reaps the rewards of determination – eventually stepping out of his or her wheelchair.

Don’t misunderstand me. I love to see people who incur a spinal cord injury recover. I don’t feel bitter or jealous and I am genuinely happy for any and all recovery. My best friend in hospital, Sid, began as a quadriplegic and now walks. I recently had the joy of hearing him tell of his return to skiing on the snowfields where he had his accident. Recovery from SCI is something to be celebrated.

But – and this is my point – many people don’t recover. And they aren’t any less determined, any less (or more) inspirational, any less hard-working, any less newsworthy. Yet time and again media reporting celebrates those who recover and ignores those who don’t (or worse, implicitly demeans them), as though their permanent struggles (and achievements) with disability are too embarrassing to talk about.

So I came to the Peter Overton’s 60 minutes report on Curtis Landers with some reluctance [which is why this blog post is a week out of date]. I have to say that I was mostly pleasantly surprised. Curtis is a 15-year-old boy who injured his third and fourth cervical vertebrae while playing rugby league; an injury that would ordinarily render him a permanent quadriplegic. While at the time the story was aired it was still too early to know the full extent of his recovery, what the program was able to show was his remarkable improvement. Curtis has been able to regain function in his arms, fingers, and legs, and when discharged from the hospital, triumphantly left his wheelchair behind. The program rightly celebrated the rapidity and extent of Curtis’ recovery. It also applauded the achievements of his first aid worker, whose ministrations on the football field immediately following the injury minimised the damage to the spinal cord.

This good reporting notwithstanding, 60 minutes couldn’t help but perpetuate the positivity myth. Speaking about Curtis’ recovery, Overton noted that “in his mind, it was never a matter of if, but when,” and followed up with the standard question “was there ever a moment, in all honesty, when you thought ‘I will never walk again?’” Curtis gave the expected response, although with some reluctance “not really, I was planning to play [football] this season again, so walking wasn’t a worry.” This exchange was followed with video of Curtis at work in the gym, taking tentative steps, while John Newman & Alex Clare’s inspirational “Not Giving in” played in the background. And surprise surprise, the report ended with Curtis stepping out of his wheelchair as he left the hospital.

Let me be clear. I have no issue with Curtis; he answered the question honestly, and his positive attitude toward his circumstances is commendable. His recovery is wonderful news, and it should make headlines. What I take issue with is the question Overton asks, which is deliberately framed to imply that believing in something with sufficient faith, and never giving in, will bring it to pass. The reality, though, is that in the early stages of rehabilitation, many people with an SCI hold on to the belief that they will recover, but ultimately have to come to terms with permanent disability.

The fact is that belief has very little to do with recovery from an SCI. When a person incurs a spinal cord injury, the long-term damage to the neurological system is indeterminate, and it takes months and years to find out the extent of the damage caused by the initial trauma. In Curtis’ case, he regained movement in his arms and legs within a week of his accident, and was walking within months. This means that his spinal cord had incurred less damage than his doctor [Jonathan Ball**] initially thought when he apparently suggested to Curtis’ parents that their son would never walk again. To do Overton justice, his 60 minutes report made this clear, before undoing its good work by defaulting to the positive thinking myth. Curtis’ wonderful recovery had nothing to do with his expectation, faith, or positivity, and nor was it a product of his “defying his doctors.” These attitudes might well have helped him deal with the emotional trauma of the injury. But mostly, he was lucky (blessed, if you prefer). If the damage to his neurological system had been more severe, no amount of positive thinking would have kept him out of a wheelchair.

The positive thinking myth has obvious correlations with the naïveté of Christian prosperity/faith healing. Both place too much emphasis on individual faith. Both focus on those who experience healing, ignoring and implicitly denigrating those who don’t. And both fail to recognise that suffering and disability are an inevitable fact of human life, not something that can be believed away.

I hope that 60 minutes and Peter Overton continue to tell the stories of people with a spinal cord injury. There is too much horror in the media, and we do need the encouragement of stories such as that of Curtis Landers. But is it too much to ask that these good news stories be framed more carefully, perhaps by referencing accounts of those who don’t regain any neurological function, who never get out of their wheelchair and walk again, but who nevertheless manage to make a go of life with a disability?

 

** A comment on Dr Jonathan Ball. I was especially disappointed by Doctor Ball’s comments on the program. He observed of Curtis’ recovery that, “It is astonishing. It is inspirational. Across all neurological operations there are a handful of patients that you remember, who are the people who keep you doing what you do. And Curtis is in the handful of patients who are the inspiration to keep me doing what I do.” This may be true, and neurosurgery may well be a largely impersonal discipline – and no doubt Curtis is a memorable young man. But whether he intended it or not, what Dr Ball implied was that none of the other patients that have been in his care are worth remembering (or even worth operating on). I, for one, am glad I had more compassionate doctors supervising my recovery.

I am not Christopher Reeve

When people imagine quadriplegia they assume complete paralysis of everything from the neck down, and have an image of a paralysed Superman in their mind. Sometimes, people who meet me are surprised by my movement, and I almost feel guilty – like some sort of a fraud – because I say I’m a quadriplegic, but I have more movement than the man of steel!

To give you a better understanding of my injury – and the medical transition from my early days in hospital to now – I thought you might be interested to read a brief extract from an autobiography I am toying with (tentatively titled, Husbands Should Not Break). This extract is a little technical– I promise you, it will not all be like that – but it provides some insight about the medical journey of a person with SCI:

On most days my medical care is supervised by the spinal unit registrar, Jasmine, but today she was accompanied by her boss. Dr Bonnie Lee is short … tiny in fact … and he never stops moving; he rocks backwards and forwards on the balls of his feet, he picks up a medical chart then puts it back down, he turns his gaze from one person to another, a doctor charged up with Eveready batteries. He was engaged in rapid-fire strategy, in planning the next steps of my rehabilitation with Jasmine. They talked about medicines and procedures, and goals for physiotherapists. I’m sure all this is important but in the weeks I have been in hospital I have yet to receive a straight answer to a question that was becoming increasingly urgent.

When a gap opened in the conversation I asked, “What is my prognosis? Will I recover or is this all there is?”

Bonnie stopped moving, gave me his full attention (and even slowed down the pace of his speech).

“This may be all there is. You may get no further neurological recovery, or you may regain almost everything. There is just no way of knowing.”

He continued (speeding up again), laying before me the basics of spinal cord injury. The spinal cord is approximately the diameter of a finger, consisting of millions of nerve fibres that transmit information from the brain down to every part of the body (instructing the muscles of the body to move), and in the reverse direction, providing feedback (sensation, both pleasant and painful). In their traverse to and from the brain, the nerves of the spinal cord are protected by the vertebrae that make up the spine. Nerves that exit the cervical vertebrae (C1 to C8 – the upper section of the spine) control breathing and supply movement and sensation to the neck, upper trunk arms and hands; those that exit the thoracic vertebrae (T1 to T12) supply movement and sensation to the trunk and abdomen; those that exit of the lumbar and sacral vertebrae supply movement and sensation the legs, bowel, bladder and sex organs.

(He gave a thoroughgoing description, which I have paraphrased. He was treating me as an intelligent adult, and I really appreciated it)

“Your break,” he went on to say, “is the fourth and fifth vertebrae but you seem to have most of your C5 function; shoulders and bicep. What is impacted is everything below C5 level; wrist (C6), triceps (C7), fingers (C8). Obviously, everything else below the trunk is damaged.”

I have asked other doctors the same question but I asked again. “Is it a good sign that I have some feeling below the level of my injury, however muddy” (I can sense touch but not hot or cold. I cannot feel needles, which is some compensation).

Bonnie’s response confirms what I have already been told. “Motor neurons and sensor neurons traverse distinct parts of the spinal-cord. It is possible for a person to have feeling and no movement and, conversely, to be able to move without feeling”; he went on to describe the surprising difficulty of walking without sensation in your feet and legs.

In terms of prognosis (and again I paraphrase), the problem is that science has not yet reached the point that it can scan to the level of the neuron (which is more than 1000 times thinner than a human hair), so we have no way to determine the extent of the damage in the case of an incomplete injury. At the time of an accident the area of injury swells and goes into shock – a little like a swollen ankle. Over time, the swelling subsides and undamaged neurons are able to resume their function. Most recovery is had in the first few months – and there is something of the J curve effect thereafter. By six months to a year the injury has largely stabilised, but recovery may continue through the following year, sometimes later. There is simply no way of knowing, and so no real way of planning for the future.

His conclusion is worth quoting in full (I can pretty much remember it verbatim). “An incomplete injury is a blessing; it means that recovery is possible, we just don’t know how much or how little, or how long it might take. It can also bring challenges; it not only makes it difficult to make plans, but it can give rise to additional hardships – not least of which can be pain below the level of injury. Increased sensation is not always positive, but is better than having no feeling at all.”

This was a lot to take in, but Bonnie’s thorough and brutally honest explanation was precisely what I needed. He finished with a challenge:

“Whatever your neurons do and don’t do is largely out of your control. But if you work hard, if you use the muscles you have and exercise those areas that are experiencing improvement, you can make the most of whatever level of return you get. Even if that return is minimal, you can learn to function and flourish, with wheelchairs and mechanical aids and computers. You still have some say in the shape of your future.”

I like that. It is incentive enough, at least, to help me cope with what is coming next.

So, now I am about 2 ½ years down the track from the accident, I am at the point where my injury seems to have stabilised. So where do I stand (don’t you love the English language)? Well, in a word “imbalanced.” Obviously I have the function typically available to those with a C5 injury (biceps, shoulders, partial chest and above). Because I am an incomplete quad, I have had further recovery. Below the chest there is not much in the way of functional movement – a few odd muscle tweaks here and there; party tricks I call them. In terms of my arms, while my left side has changed little, my right side has regained some useful (although weak and awkward) movement in my triceps, wrist, and fingers, which have provided me with the ability to eat and drink (I still need help cutting things up), use a computer mouse (an extra large trackball), pick up and replace objects, throw food at my children (inaccurately and only at close range) and the like.

I still need carers for all sorts of tasks (mornings and evenings obviously, as well as for various functions through the day), but probably my biggest disappointment is that I have not had the recovery needed to enable me to independently transfer. Of all the potential capacities, the most important for a quadriplegic looking to increase independence is the ability to transfer – to move oneself from bed to a wheelchair and from there to any number of places; a car, so as to avoid the limitations of having to drive a powered chair onto the back of a modified bus/van; a lounge, to be able to sit next to your wife, cuddling her as you watch TV; a bed, so that you can choose for yourself when to go to sleep.  I spent a year trying to pick up this skill with the awesome physios at Prince of Wales hospital (Fernanda and Keira the legends), but didn’t pull it off. With help, I can move from bed to a chair if there is no slope (unrealistic in the real world), but a hoist is the more efficient and safer mechanism. Obviously, it has its limitations.

In terms of feeling, there is not been much change since the early days. I have partial, muddy, feeling below the level of injury. I can generally tell when I’m being touched, but you could stab me and I’d probably not complain too much (as long as you cleaned up the mess). I can’t feel hot and cold. If I pick up a hot cup, my hand responds with an automatic spasm, so I have to be extremely careful with tea and coffee. I get pain in various parts of the body but am able to manage it. I take a few drugs, and the other key is to learn to refocus the mind. The brain turns out to be a pretty powerful pain reliever – at least most of the time. the feeling that I have gives me some advantages, especially since I can often tell if something is going wrong.

All of this is a long winded way of saying, were he still alive, I could beat the man of steel in an arm wrestle.

The Intouchables: film review

**POTENTIAL SPOILER ALERT** (although the film itself gives away its end in the beginning, concerning itself with character over suspense)

First, a little pedantry; the term “Intouchables” is not a spelling error but the French equivalent of “Untouchables” [and yes, it is a foreign subtitled movie given limited distribution in Australia]. In the context of this film the title seems to intend a double meaning. The lead character, Philippe, is a C3/4 quadriplegic with no movement from the neck down and, consequently, no capacity to reach out and touch. More importantly, both Philippe and his carer Driss are outcasts; the latter a poor black, paroled (and despised) migrant, the former a pitiable paralytic – each in their own way untouchable.

The plot is a simple one. The wealthy Philippe hires Driss as a personal carer, notwithstanding the fact that he is patently unsuited to the task. To say nothing of his criminal background, he has no training or experience in the field and, as soon becomes obvious, his knowledge of spinal-cord injury (SCI) is laughingly basic [Is there really anyone in the world who does not know that paralytics normally have no/little feeling? That notwithstanding the absence of pain it is a bad idea to pour scalding hot tea onto a persons’ legs?]. He is hired on the sole basis that, from the very beginning, he responds to Philippe without pity, even without compassion. He jokes, teases, challenges and questions Philippe in a refreshingly unselfconscious way, no topic out of bounds (even quadriplegic erotica).

At one level, Intouchables follows a predictable and stereotyped pattern; wealthy white man is brought together with poor black man, cultures clash, white man introduces high culture to unsophisticated black man, black man introduces funky dance and lawless joy to stuck up white man, both transformed. As is typical, it also ignores the obscenity of the white man’s wealth in the face of the black man’s poverty (and, as I’ve noted elsewhere, without owning up to the fact that disability and poverty often go hand in hand).

And yet, at another level – and this is what counts – the film is sheer delight. What it has going for it is a number of rich characters, as well as insight into the unique world of quadriplegia from the perspective of both the person with an SCI and his carers. Obviously, the story resonates with the experiences of my wife and I, leaving us grateful that my injury was not as severe as that suffered by Philippe (there is almost always someone worse off than yourself!). But if the response of other patrons in the cinema was anything to go by, its appeal is universal and its story inspirational. And as much as I hate that overused word, the film’s encouragement comes not from the heroic character of either Philippe or Driss, but from the affirmation that friendship is what really matters in life.

Four stars.

John Trefry, 50 Years a Quadriplegic

I am working on a research project – or at least I am starting to think about a research project to see whether it has legs. My interest is in the connection between virtue and human flourishing. That sounds complex, but what I am thinking about doing is interviewing long-term quadriplegics in an effort to discern what it is that is has enabled them to flourish over the long term in the face of immense challenge. There are some horrifying and depressing stories in the spinal community, and there are some amazing stories, and I would love to be able to record some of them; the good and the bad, and try and discern whether there is any meaning to be found.

Last week I had the privilege of recording an interview with John and Pam Trefry. They are robust and powerful 70-year-old Australians, and John has been a spinal patient since 1959, aged 18. At a time when quadriplegics had a life expectancy of weeks and months rather than decades, John went on to survive and flourish as a C5/6 quad – and he has done so now for more than 50 years. John has a similar level of injury to my own (I am C4/5), and I find it hard to imagine 50 years in such a body.

Anyway, his story is far too long for a blog post, but I thought I might give you a few titbits. John spent seven months in hospital (five months in traction with a wishbone frame drilled into the skull) before being transferred to Weemala nursing home in Ryde, which bore a sign over its entry that read, “NSW Home for Incurables” (for those of you familiar with the spinal community, this site was later to host the Royal rehabilitation Centre, Sydney –http://www.royalrehab.com.au/history.html).

John spent most of his time flat on its back, since the nursing home did not have the staff resources to get him up regularly in a chair. What did he do with his time? Not much. There was no television, and he couldn’t read – his arms could not hold a book. He was, at least, wheeled outside and into common rooms where he was able to talk to the residents. Of course, they were mostly over 65 and John was 20 – he shared a room with two other men the youngest of whom was 65.

He once asked the matron, “how long am I going to be in here”. She replied, “when you come in here son, you don’t come in here to get better. You slowly get worse and die.”

It is hard to fathom what it is like to be 20, stuck on your back staring at the ceiling and receiving this sort of encouragement. This is the Hotel California masquerading as a nursing home (you can check out any time but you can never leave). I asked John what it was about his character that enabled him to get through this (he was later transferred to a spinal unit at Prince of Wales hospital that changed his life). He says that on his own he was depressed – feeling utterly hopeless and impotent. What got him through was the support of others. When he told his sister what had been said she insisted, “this is not going to happen to you.” She was later to find a way to move him to a spinal rehabilitation unit in Prince of Wales hospital.

The lesson, I think, is that the character traits that enable us to flourish in the face of hardship are not our own. We get them from the support, from the strength and determination of others. Where would we be without our family and friends? That old matron probably had it right. Slowly getting worse and waiting to die.