Rehab Reflections

Perspectives of a Pony

According to official metrics  I am now considered to have completed rehabilitation. However as I don’t have anywhere to go, I am now firmly on the “maintenance” programme here at Stanmore. This means minimum physiotherapy and occupational therapy sessions whilst the powers that be figure out where to discharge me. As I still have nowhere to live, that means indefinite limbo. So now is as good a time as any to try and gather my thoughts on the rehab experience. The truth is, it’s hard not to be disappointed by how things have turned out. The reasons for this however are multiple, and not all of the same kind.

One important problem I’ve faced is that I think it took me too long to come to terms with how serious my injury, and therefore situation, really is. At the theoretical, or abstract, level I understood fairly early on that spinal cord injury is a very debilitating thing. But deep down I clung to the belief that things would be different for me. I thought that once I got to rehab, so long as I gave 100% effort and relied on the good fortune that always seems to have accompanied me, I would be one of those mythical cases that defies the odds and makes an astonishing recovery. But this was a foolish hope to indulge. I would have done much better if I’d early on accepted the truth: that the severity of the break in my neck put a hard limit on what could realistically be hoped for. Just as somebody who has an arm amputated is wasting their time if they fantasise that the limb might spontaneously grow back, I should long ago have accepted that given the x-ray images of the lesion in my neck, things were not going to magically change for the better, no matter how much effort I put in. It has taken me until the end of rehab to accept a truth I should have confronted much earlier.

But then perhaps it’s not entirely my fault. When the occupational therapy team let me think there was hope for my hands, I wish they had made it clearer to me that they meant there was hope for them relative to the fact of my tetraplegia. For too long I thought there was a chance I might get something like full functionality back. I now realise this was naive. Although some progress has been made, particularly with the left-hand, the hope I had invested in programmes of electrical stimulation, vigorous massaging, and splinting, were misplaced. The truth is my hands are still around 95% useless. That’s better than 99% useless, as they were when I first got here, but it’s hard to rise a smile about so little.

More generally, it is a problem that Stanmore is spoken of in exalted terms long before one arrives here. Staff at other hospitals emphasise how hard it is to be admitted, and refer to the rehabilitation centre as if it were a place that works miracles. The inevitable result is that one arrives with very high expectations and hopes (and this is certainly not just true of me, but of many other patients too). And accordingly, one is set up for disappointment. Because this is not a place that works miracles. It is an NHS funded institution dealing with the reality of spinal cord injury, one of the most debilitating and incurable of all human injuries. Whilst there is no doubt that the physiotherapy and occupational therapy teams here are very good, that does not change the fact that there is only a certain amount that they can possibly do. Again, I wish my expectations had been better calibrated from the start about what could sensibly be expected. Lesser starting hopes, after all, lead to lesser disappointments.

Indeed, one area that expectation management could certainly have been much better handled is regarding what to expect in terms of institutional set-up. Before I arrived here, my presumption was that I would be in an environment providing a halfway house between regular hospital and returning to the real world. After all rehabilitation implies reintegration, and one thing a hospital ward is nothing like is normal life. This presumption of mine was reinforced by some of the outreach workers who spoke to me whilst I was still in regular hospital, who assured me that Stanmore would be different. I imagined a high class, almost futuristic environment where the spinal specialists would work their miracles. A friend who visited me said that before he came he was envisaging something akin to student halls, where people begin to reclaim their own individual lives. But we both could not be more wrong.

The set up here is basically two different facilities, which are only tangentially and sporadically connected with each other. On the one hand there is the gymnasium, where physiotherapy and occupational therapy take place. Things here are very good. The staff are highly trained and there is specialist equipment for patients to use. Although you only get timetabled for 45 minutes a day with your physiotherapist, and 45 minutes with your occupational therapist, other supplementary activities are also provided in order to help with the rehabilitation process.

On the other hand there is the ward, at the other end of a long corridor. This is where you sleep, eat, and inevitably spend most of your time. And the ward is just a regular hospital environment, albeit one where (most) of the staff at least know how to look after spinal patients. And given that it is a regular hospital environment, that means the following.

An endless diet of hospital food. Constant shortages of staff, the quality of whom is enormously variable, with frequent reliance on useless agency workers. Permanent noise: machines beeping, staff shouting to each other, call bells buzzing, and countless other sources of audio intrusion. Total lack of privacy, not least attempting to sleep in a room with three strangers, where one is frequently woken at night by the activities of staff and patients. Relentless monotony, where every day is the same, and nothing is ever provided in recognition of the fact that patients have minds as well as bodies. An environment characterised by whitewashed walls where the aesthetic is everywhere one of sanitisation, but combined with a pervasive level of clutter and disrepair, as paint peels from door frames and broken skirting boards hang off the walls. No beauty. No calm. No relaxation. No escape, other than the charity-provided garden area outside.

Indeed, I remain somewhat taken aback by how little rehab actually takes place outside of the gym. Divided between around 30 patients are four rehab assistant workers. All four of them are very helpful and good at their jobs, but they don’t each work every day, and if you are not lucky enough to have one assigned to you, then you can forget about receiving their help. This means that things like learning to dress oneself when paralysed, or learning how to get out of bed and into a wheelchair without using the mechanical hoist device, are not standard features of the rehabilitation process, but rather require you to ask for help with these things and hope that one of the four rehab assistants is in that day and isn’t working with one of the 29 other patients. Similarly, for the last few months I’ve been endeavouring to feed myself using adapted cutlery that is wedged on to my hands. The problem, however, is that I cannot easily remove the cutlery from my hands or do things like open a yoghurt, peel a banana, or pick up a glass to drink. In other words, I still need somebody to help me whilst I eat a meal. And yet nine times out of 10 I am left unattended in the day room with cutlery wedged to my hands after whoever was supposed to help me wanders off to do something else and forgets to come back. The same thing happens to another tetraplegic patient here. We have both raised the issue and complained about it multiple times through official channels. Nothing ever changes. Despite feeding oneself surely being one of the top priorities in terms of getting patients rehabilitated, it gets left completely off the ward agenda. I would literally get more attention if I simply lay in bed and asked somebody to put the food directly in my mouth, just as I had to when I first arrived.

Even factoring out my own in retrospect unrealistically high hopes and expectations, it seems undeniable that rehabilitating people through intense sessions in a gymnasium is going to be seriously undermined if you force them to live down the corridor in a chaotic environment of stress and overstimulation where rehab barely features. How much better would patients all do if we had a place of calm and relaxation to retreat to? A place where the mental challenge of coming to terms with shattered lives might be taken seriously, with help offered, rather than being relegated to the sidelines of an always bustling medical cacophony? But such is the reality.

When I step back and try to form a picture of the last four months of my life, I keep coming back to something like the following. I feel like a former prize pony that had a silly accident and needs to be put out to pasture, but requires some heavy duty interventions first. Accordingly I’ve been sent off to special stables where various other ponies are also residing. Although it seems clear that in a case like mine the kindest thing to do would have been to put a bolt in the back of my head, I’m nonetheless being kept going. Accordingly, the staff here do what is required for a pony like me. I get fed, washed, have my shit cleaned out and my piss mopped up. None of the staff are cruel, and indeed some are even kind. After all, nobody wants to mistreat a pony. But a pony is not a person. No matter how much you like it, you don’t look it in the eye like you would a friend. You make sure it gets fed, but you wouldn’t eat that yourself. You make sure it has what it needs, but you pay it no mind as you shout casually over its back to your coworkers and colleagues as you scrub it down. The ponies go to bed when they are told. They wake up when they are told. They eat when they are told. They shit when they are told. And they may not leave - not that they could, even if they tried.

The thing is, I’m not even sure I can object to this. What am I other than a former prize pony, whom others have been generous enough to keep alive, lucky to even be going out to pasture now that his best days are behind him? If nothing else, I cannot deny that I am now institutionalised into an all-consuming passivity. I simply sit around, waiting for others to sustain me. I am terrified to leave this place, with no idea at all what comes next, or even when that will be. But it is abundantly clear that it is time for me to go.