Rain, Train, Bus, and A Few Conversations

jellybeanI was wrapped up like newborn baby, a frayed green blanket around my legs, three layers of skivvy covered by a sky blue windcheater over my chest, and a black felt beanie pulled down tight over my eyebrows and ears. Even so, I was shivering, as the crisp winter wind raced toward me, slapping my face and finding the gap in the sliver of exposed skin between my collar and scarf. I was travelling as fast as my chair would take me down Oxford road, heading to Ingleburn station. Along the way I stopped at Teo’s cafe to collect my pre-ordered skim milk latte, which I hoped would provide me a shot of energised warmth sufficient to get me to my appointment at Prince of Wales Hospital.

Assisted by a guard with a ramp onto the train at Ingleburn, and off again at Green Square, I made my way up the lift and out of the station only to discover it was raining. Electric chairs and water are not a great mix, so I accosted a nearby couple, interrupted their hand holding, and asked for their help with my raincoat. Inevitably it was the woman who rose to the task, digging the bright yellow poncho out of my backpack and squeezing it over my head and around my knees, so that I looked like a giant jellybean on wheels. But the seven minutes I was to spend in the rain waiting for the bus made it worth the price of my dignity, and eventually I made it to Randwick, dripping but dry, and well ahead of schedule.

This gave me the chance to take on board some more caffeine, this time at Randwick’s trendy 22 Grams, which was packed full of yuppie doctors and uniform-stylish nurses, crowded around tables and yelling at one another to be heard over the din. While I was waiting for the brew, Annalisa, my former psychologist, spotted me huddled in the corner, and so pulled up a pew, and we managed to get our heads close enough together that we could chat about this and that; the sort of easy-going conversation that comes from shared experience.

And then it was time for the reason I’d made the trip, so I ventured back out into the rain and across the road to Prince of Wales, making my way down one floor via an ancient and jerky lift (with old-style metal non-illuminated buttons) to spinal outpatients. There I was met by a friendly occupational therapist, whose mood was inspired by a recently taken 10 week adventure through South America (the rain had caused some cancellations, so she had a few minutes to catalogue the highlights of her travel, which included a dive with turtles in the Galapagos Islands). Small talk aside, our purpose was to inspect the cushion on my chair. It’s a Roho, comprising of a series of interconnected rubber air cushions that look and move like succulent tuber coral wafting in the current. Earlier in the week I’d been forced to spend a day in bed when the damned thing had gone flat, so the OT was to check up on Elly’s repair and refilling. Slipping her hands into plastic gloves, she slid her arms between the cushion and my leg, reaching for my bum and feeling for the space between my IT bone and the chair. Under-inflation leads to pressure marks, over-inflation leads to pressure marks, but it turned out that Elly had things just right, and so a two-hour journey culminated in a 10 minute appointment for no real purpose, but at least I was free.

I took the opportunity to head over to the spinal ward. Six weeks earlier Annalisa had suggested I visit TT, a resident who’d suffered C1 nerve damage following an operation to remove a tumour. He was now a ventilated quadriplegic, with no movement below the neck, and since he was studying law, she thought I might be able to provide him some encouragement. As usually happens in these situations, the encouragement went the other direction, so I was pleased today to have the opportunity for a second visit. I found TT in his room – cubicle would be a better word, a crowded space packed with medical technology and the detritus that accumulates from months living in a hospital. He was still in his PJ’s, but out of bed and seated in his chair, working away on his computer. Snaked toward his mouth from the left was a microphone for voice recognition, and from the right, a Sip-n-Puff mouth mouse; blow for left click, suck for right click, and grip the tubing in the mouth and move it up/down/left/right to navigate screen. These were not easy apparatus to use (I’d made the attempt in the early days of my rehabilitation, and recall constantly asking for help wiping spit off my chin), but TT seemed to be making a go of it. When I stopped by he was in the middle of an essay, but seemed happy enough for the interruption. He was quietly spoken, constrained by steady rhythm of the ventilator, but he carried himself with a friendly confidence that made for easy conversation. It wasn’t long before he announced that he had recently popped the question to his long-term partner (she said, yes) and, also, that accessible accommodation had been found near his University, so discharge from hospital was imminent. As he shared all of this exciting news, I was reminded of the recent euthanasia of Tim Bowers (see here), based in the assumption that severe quadriplegia was a fate worse than death. Yet, here was TT, living with this severe disability for just over a year, and already working on a law degree, moving into his own home, and getting married.

Not wanting to be the cause of a late assignment, I said my goodbyes and headed home; more rain, a bus and train trip, and a roll back up the hill. It was another of those days when I’d accomplished nothing (I’d left a list of tasks from work and home piling higher), yet it felt like a day that was wonderfully well wasted.

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.