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Apr 1 2013

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.

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Dec 2 2012
Image

Not yet a grandfather

Not yet a grandfather

Having spent a week in bed I was up and about yesterday. The world looks better from this angle. At church today I was given this baby to nurse. I was especially pleased that he seemed secure enough in my arms – good news for when I have grandchildren – not too soon I hope.

Nov 30 2012

The joys of bed (seven days in paradise)

I am on my seventh day of bed rest, lying on my side waiting for a pressure mark to disappear. When it first appeared it was only small and I assumed it would heal up after a couple of days. A week later and my carers have only just started to see some improvement; what was a small enough mark on the surface is obviously more substantive underneath. Being in bed is one thing but lying on my side is another. It is not only the niggling painof the body cramping from being oddly positioned, but that it is so hard to do anything lying sideways. Voice recognition software means I can use the computer but reading text on an angle is surprisingly difficult. The brain seems to be trained to track texts left to right but when proceeding bottom to top I keep repeating or skipping lines bottom to top I keep repeating or skipping lines.

As each day goes past, and my dreams of being up and about on the next come to nothing, I am getting increasingly grumpy. When my carers check my bum in the morning and tell me that the mark is still there I am tempted to tell them to @$*& off. In the spirit of the idea that positive talk is transformative, here are some reasons to celebrate being in bed:

  1. … (Very long pause as I wrack my brain) the Cat has 24-hour bed service – see photo
  2. I have the opportunity to sleep whenever I choose
  3. I am allowed to watch the test cricket, Australia vs South Africa (although a five-day test that Australia should have won ending in a draw didn’t help my mood)
  4. I’ve been able to finish my marking and even do some of my own writing
  5. the boys are able to stay away from me to avoid getting jobs (a blessing to us all; they avoid work and I dodge a fight)
  6. I missed travelling home in the rain earlier in the week, and will be able to remain inside when heat-wave temperatures hit us (predictions of 41°)
  7. I get waited upon hand and foot – even more than normal. And Elly insists that this is literal, and that my feet and legs are bloody heavy

I’m feeling better already… But God help the carers if they find the mark still there tomorrow.

Aug 25 2012

Disability and The Death Penalty

For those of you familiar with some of my recent teaching and writing, I am something of a dilettante in the virtue ethics of Aristotle. He has much to say that is of interest and use today and I have used his work in a recent article to explore the concept of happiness as it relates to my experience of spinal-cord injury. My enthusiasm, however, only goes so far, especially given that the prejudice that is so much a part of the outlook of his day impacts his thinking at key points. He argues, for example, that women and slaves are unable to be happy, in the fullest sense of the term, because they lack the freedom to make their own decisions, which restricts their exercise of virtue; “For the slave has no deliberative faculty at all; the woman has, but it is without authority” (Politics 1060a). More than just the cultural blindness of this position, what is noteworthy is that this restriction on the possibility of complete happiness extends to people who are chronically ill, mentally deficient and even ‘ugly’.

For it is impossible or not easy for someone without equipment to do what is noble: many things are done through instruments, [1099b] as it were—through friends, wealth, and political power. Those who are bereft of some of these (for example, good birth, good children, or beauty) disfigure their blessedness, for a person who is altogether ugly in appearance, or of poor birth, or solitary and childless cannot really be characterized as happy; and he is perhaps still less happy, if he should have altogether bad children or friends or, though he did have good ones, they are dead. Just as we said, then, [happiness] seems to require some such external prosperity in addition. This is why some make good fortune equivalent to happiness, and others, virtue. (Nicomachean ethics 1099b).

For Aristotle this conclusion was obvious. Ill-health, mental deficiency and ugliness – characteristic ways of describing disability – are not only undesirable for their own sake (how could anyone consider the disabled life to be a good life), but they necessarily restrict the full exercise of intellectual and moral virtue, at least as he understands these concepts.

Now, before we ‘stand up’ in righteous indignation it is worth noting that this perspective is all too common. It finds its way, for example, into the scriptures, in texts such as
Leviticus 21:16 – 23 (“no man who is blind or lame, disfigured or deformed … is to come near to present the food offerings to the LORD” – see my earlier blog here). I hope to discuss a biblical theology of disability at a later point (if the gaps in my blogging improve, I intend to take us through some of the writing of Amos Yong in The Bible Disability in Church) but before any of us in the 21st century get too self-righteous, it is worth noting that such perspectives are too common today.

There is the simple inability that most people have to look a disabled person in the eye, to talk to them naturally and treat them as we would any other person. Behind these actions may well lie pity and compassion, but this can be similar to the perspective of Aristotle, since it arises because we presume that the disabled are unlucky and necessarily unhappy – and very few of us are capable of looking directly at suffering. Of course these attitudes are understandable. I have been there myself and I’m sure compassion is often warranted; but it should not be assumed, since assumption is the ground of prejudice. Much more importantly, however, is the fact that prejudice against disability stands behind some of our arguments for both abortion and euthanasia. It is now the almost universal practice to screen the fetus for any signs of disability. If such is found (or even suspected) abortion is presented as a possible course of action, leaving parents in the invidious position of having to decide whether or not to terminate their pregnancy. At the other end of life, it is generally believed that people with severe acquired disability would want to commit suicide and, if they are unable to do so because of the limits of their function, should be helped to die by an indemnified doctor.

I should note, at this point, that I am not making an argument in this post for or against the legalisation of abortion or euthanasia. These are far more complex issues than many on the right or the left allow and morality is generally best kept out of the hands of politicians and law courts. I am speaking simply about prejudice. So to end where I started. Aristotle may be a misogynist racist but at least he wasn’t suggesting termination as a solution to the problem of disability.

Jun 8 2012

Cold call healing ministry

I was fast asleep on the train on the way home from Prince of Wales hospital Wednesday (the joys of the tilt back chair) when I was woken by a gentleman offering me his business card to “Padstow healing rooms” and weekly healing meetings on Thursday night.

My initial thought was to offer him a phone number for Weight Watchers. He could, after all, benefit from their services and presumably he would be happy for people out of the blue to offer him weight-loss advice…

I resisted the temptation and accepted his card. Elly certainly didn’t understand my frustration and, to be honest, I’m not sure I did either. Certainly, my internal dialogue was obnoxious – what right had I to judge any one’s weight, especially in the light of my own “pregnancy” (see previous blog).

Yet the fact is that I experienced an immediate visceral annoyance, one that surprised me. It is fascinating how our own minds can be a mystery to us, and the question I was left to ask myself is, why did this offer of prayer annoy me? Maybe I don’t have enough faith or perhaps I have some latent disappointment with God, given the thousands of prayers that have yet gone unanswered.

More likely the difficulty was with the nature of the approach. This out of the blue offer of prayer felt a little like a Saturday morning cold call doorknock by a Jehovah’s Witness. It felt like I was being “sold” something – a business card, a prayer, a miracle.

Perhaps more likely again, I just don’t like being “that poor man in a chair who needs pity and prayer.” Of course at one level I am pitiable and I do need prayer – but aren’t we all and don’t we all? What I want is to be treated the same as any other person. If I’m asleep on the train, left to rest. If I have my head in a book, left to read. If I seem to be open to conversation, chat away. No topic is off-limits (well, almost none). Talk about the chair and the body by all means – they are a big part of my life. But strangers on a train shouldn’t launch straight in with an offer of a miracle. They just don’t know enough about me to presume they have the answer to my problem.

Having said this, please understand that I value your prayers and I know many of you pray that I might get out of the chair. Such prayers are an expression of your love and that means a lot to me. The truth is, however, I don’t expect a miracle and I am not looking for one. That might disappoint some of you. It might seem like a capitulation, the elevation of doubt over faith. I think, however, that faith is best expressed by taking life as it comes, by making the most of it.

Of course, according to this measure, getting annoyed at well-meaning healers is unfaithful and uncharitable. Next time I will let him pray for me then and there. Not because I expect his prayer to be more effective than that of my family and friends, but because faith is gracious and I don’t want to be a surly toad.

Apr 1 2012

apologies

for those of you following my blog, a huge apology – I have accidentally published an unfinished blog post that needed serious editing and that I was still deciding whether or not to send! I will probably fix it now – but honestly, working online can be a seriously dangerous thing!