Different worlds

And travelling between them

You’ve probably never heard of autonomic dysreflexia (AD). I certainly hadn’t until of a couple of months ago. It’s a condition that only affects people with spinal cord injuries, hence why it’s largely unknown. But it’s a serious deal.  And for the last couple of weeks it has been the bane of my existence.

AD occurs when a part of the body below the spinal cord injury attempts to send a distress signal to the brain. Due to the transmission being blocked, the brain cannot respond and so the body does not receive anything in return. This generates internal haywire. Blood pressure spikes as blood vessels below the level of injury contract, and the brain fails to compensate. Symptoms usually consist of pounding headache, blocked nose, sweating, goosebumps, and blurred vision. If blood pressure is not reduced then the consequences can be seizures, strokes, heart attack, and ultimately death.

AD is typically caused by a problem in the bladder, bowels, or a skin irritation. In my case, however, there seems to be no obvious trigger. Yet whenever trying to do physiotherapy in the last few weeks, AD has been the result. The medical staff are not sure why. Also problematically, I don’t exhibit the usual symptoms. All I tend to get is some flushing and blotching on my neck, and mild tingling in my hands, but when my blood pressure is checked it has spiked dramatically and needs to be brought down fast. The outcome is immediate discontinuation of the exercise session.

As you can imagine, this is hugely frustrating. First off, I desperately want to do as much physio as I can. Trying to claw my life back absolutely requires that I regain basic functional physical abilities, and the only way to do that is to work hard when I exercise. AD is a direct obstacle to recovery. Second, I made the mistake of googling the condition. Whilst AD is unlikely to kill me in a hospital surrounded by medical experts who know what to look for and how to treat it, the future will be very different. Although the resident consultant calmed me and explained that AD almost always decreases with severity and frequency overtime, my less-than-robust psychological state quickly became convinced that this is going to kill me sooner or later, given that I can’t see my own neck and this seems to be my only external symptom. Not a nice thought to have churn around one’s skull when wondering after another aborted physiotherapy session what the point of trying even is anymore.

Finally, because the NHS staff have been very mindful about AD risk, that quickly put an end to trips one floor down to the gym, let alone brief 30 minute visits outside the hospital only twice managed in the weeks before. Once AD became a problem, all physio sessions took place in bed. This meant I didn’t leave my room for six days straight at first. Then I did leave…only to be transferred to a different room on the other side of the ward where I spent the next 10 days straight. This coincided with me coming off the rapid access to rehab scheme (funding dictates that no patient can do more than six weeks, and my time was up) and so defaulting to “regular” treatment. This meant less regular physio, for shorter sessions, at random points, whenever they had time for me. And which continued to be plagued by AD.

Yet the thing about living in the same room for days on end, and never leaving because you physically can’t, is that it is bizarrely paradoxical.  As you can imagine, it’s utterly horrible to experience. You see the same four walls, hour after hour, and the days all merge into one. Even being fortunate enough to have regular visitors plus the distraction of evening Netflix was not enough to keep me calibrated. I genuinely started to think I was losing my mind, and my mental health deteriorated even further than it already had. And yet, when one room is all you ever experience, it rapidly becomes your entire world. Horrible, it may be. But it is also familiar, and therefore weirdly safe. In a matter of weeks I shifted from conceiving of the world as being as big as my van and climbing gear could aspire to drive until reaching, to instead measuring a mere 3x2 meters wide.

This was put into stark relief when I was told earlier this week that the much threatened transfer to Whipps Cross hospital was now finally happening. Initially it was going to be on Monday, and I was given a couple of hours notice. On that occasion I actually got a reprieve after my (amazing) therapist stepped in and pointed out that never in the history of psychology has anybody suggested that if a subject is exhibiting increased depression and fears about their own sanity, then putting them in an entirely new place, where they know nobody, with very little time to prepare, is a good idea. Alas, the grind of the bureaucracy could only be slowed, not stopped. The transfer would happen on Wednesday, although at least this time I got a day’s notice in which to get mentally ready.

Now the transfer to Whipps Cross would’ve been tough anyway. To go from one tiny world and suddenly be placed in an entirely new one was always going to be psychologically taxing given my currently mutilated psychological condition. I wish therefore I could say that it was made as gentle as it could have been. I cannot.

When I first arrived, the only person to greet me was a junior nurse only qualified (I later learned) six months previously. Detailed handover preparations made by relevant staff seem to have gone completely ignored. Basics like having enough pillows in my room to facilitate repositioning so as to avoid pressure sores had not been fulfilled. When I asked for more pillows, I was told bluntly that there weren’t any. Only by making a real commotion did I get any (and this matters: develop pressure sores and I won’t be admitted to rehab). The room I was placed in turned out to be unbearably hot, and the air mattress I was on not suitable for my needs. No food had been left despite the fact I was being transported early evening and so wouldn’t have been fed before I arrived. Trying to get to sleep that first night was truly torturous, and I hardly slept at all. The next morning I was then confronted with the realisation that I was on an orthopaedic ward, with no specialist neurological nurses. Those who were assigned to my care apparently lacked basic knowledge of spinal patient procedures. Terms like “manual evacuation” that were routine at the Royal London Hospital were met with blank stares. Autonomic dysreflexia was apparently as unknown here as in civilian life, but now suddenly a very real and very fatal possibility, as I noticed my catheter was empty, meaning it had been kinked for hours and my bladder was now dangerously blocked up. Perhaps I wouldn’t have to wait for AD to get me after all. Panic set in, big time.

To cut a long story short (and the above does not actually describe even the whole of what went wrong) I was eventually reassured by the team of very good physiotherapists and senior nurses that all would be okay. The deal though was that I would have to be entirely proactive in watching and managing my own care. The nurses are now told to ask me what I need, and then do what I say. If one claims not to be able to do it, I am to escalate continuously until somebody sufficiently senior steps in and makes things happen. So far, it’s working OK. Clearly it helps that I’m not lacking in self-confidence when it comes to telling people what I want, and ensuring that I get my own way. And given that I’ve built a career off the back of being good at arguing, I am one person who nurses and administrators have zero chance of fobbing off through appeals to authority and incoherent explanations proffered in confident voices. (I taught at Cambridge for seven years; bullshit detection was a basic part of the job, and where I confirmed the old truth that poacher turned gamekeeper really is the best formation.) But this is not exactly a is desirable model for running the NHS. The patient being a bossy intransigent loudmouth is hardly what should be required for a seriously vulnerable and physically damaged human to secure adequate care. What happens to those less confident than I can still be when the chips are down? At any rate, once again I’ve switched worlds. Gone is the tiny enclave up on the 12th floor where I just sat and waited for others to tell me what to do, getting upset when I couldn’t try as hard as I wanted whenever their whistle was blown. Now it’s another world, where different rules apply.

And admittedly, despite the rough start, it has its plus points. Yesterday I was taken down to a day room with my dad, who was visiting. My new occupational therapist made a real point of getting me to feed myself as much of my lunch as I could. This wasn’t entirely successful, but I appreciated the try-hard attitude she made the default. Even better, despite the fact it was pouring down outside, she opened the doors and allowed me to sit next to the fresh air and briefly watch the rain before I got too cold. After three and a half months of being indoors, there was something magical about the smell and sound of rain. I breathed deeply and looked at the clouds. I felt something new, or perhaps something old.

Today, I went one better. My mum having taken over from my dad on London duty, I arranged for her to take me out of my ward and wheel me back to the day room - but this time heading straight outside to sit in the garden. Wrapped in blankets because I lack autumn clothes (I haven’t been home since spring), I managed to stay warm. We sat for two hours. Two hours! We talked about various things, and I spent a long time looking at the sky, or gazing at ordinary garden plants. Pigeons, crows, a bumblebee, what was probably a rat. Unremarkable urban wildlife. And the only non-human creatures I’ve seen for a quarter of a year, save for a solitary fruitfly last month. They seemed incredible.

Another world, briefly visited. But a promise, also. A reminder that such other worlds exist, and that even if for now I spend most of my time between four monotone white walls, as my own body tries to kill me, now charged with managing my own life support, this narrow world is still only one of many. It is not my new forever. It will only be temporary, so long as I don’t give up.