One of the many things that I never appreciated about my old life is that I was virtually never bored. My work consisted mostly of reading and discussing interesting ideas with colleagues and students. If I got bored during the day, I’d amuse myself by playing online chess (poorly) . I trained for climbing 10 to 15 hours a week, whilst weekends were almost always spent driving somewhere it wasn’t raining so as to climb outdoors. Evenings after training left time for good quality TV, or reading a novel. And of course there were always friends to catch up with in London if I ever felt like actually being sociable. Failing that, I’d go fishing. Essentially, if I was awake I was active, either in body or mind. A lazy weekend, doing nothing, was something like my idea of a bad time.
This wasn’t always as fantastic as perhaps I’ve just made it sound. Living at an intense pace often made it very difficult for me to switch off, which isn’t always easy for others to handle (my ex partner in particular suffered the brunt of this). It is also a recipe for being hard on oneself. Too much time spent that I felt was somehow “unproductive” would bring on a sense of guilt, and more work or training would be required to pay the psychic debt. Still, I had my groove and I knew more or less how to handle it. It was an extraordinarily good life, one that I did appreciate at the time, albeit nowhere near enough.
The contrast with my new life could hardly be more stark. I now regularly spend chunks of time just doing nothing. This started in the early days of regular hospital, when I lay in bed with no ability to use my hands, staring at the wall. But it has continued through rehab. Time spent waiting for a member of staff to come and dress me. Time spent sitting idly in my wheelchair because I have to do an hourly 2 minute pressure relief in 20 minutes, and it’s not worth the aggravation of finding a staff member to pass me my lap tray and phone, only to have them remove it again soon after. Pointless smalltalk with patients and nurses because I don’t want to be rude, even though I’ve nothing to say. Hours spent spent just circling the corridor and garden areas. A friend gave me a Kindle, which has helped by supplying me with immersive science-fiction and fantasy novels, useful for passing away evenings and weekends. But even stories get boring when all you have are stories.
The strangest thing, though, is how accustomed I have become to this mode of living. Seconds become minutes, become hours, become days. Time just drifts by unfilled, and I watch as it passes. I’m bored, but weirdly indifferent about that boredom. It doesn’t drive me crazy like it would have before. I’ve become somebody else; somebody I don’t especially admire, but who seems worryingly like they are here to stay.
Then again, there are worse things than being bored. The other day, shortly after posting my cautiously optimistic thoughts about the nursing home I am being sent to, I caught up with a former rehab patient who was back for an appointment with his consultant. I knew he had been shipped to a nursing home before Christmas, and so I asked him how it was going.
The picture he painted was grim. The first home he went to, he told me, had in retrospect been okay. But a few weeks ago they moved him somewhere else. He spoke of a four storey building in South London, serving as little more than a warehouse for the dying. Dozens and dozens of beds, filled with late stage cancer patients and the seriously demented, few of whom are visited. As pretty much the only person able to get out of bed (albeit with help), the staff regard him as a nuisance, and would prefer it if he just lay there all day like everybody else in the facility. He described hallways not redecorated since the 1980s, with carpets that everywhere smell of piss. The food, he claims, is inedible - which is quite something given that he famously found the meals here enjoyable. He says he cannot sleep at night because of the constant screaming of dementia patients. Worst of all, the staff are apparently clueless about treating his spinal condition. He suffered an attack of autonomic dysreflexia recently, but rather than administer the prescribed medicine tetraplegics carry specifically for that, the staff simply gave him paracetamol. Luckily, his friends were visiting and managed to call an ambulance.
Only a couple of years older than me, he looked ashen faced as he waited for the hospital transport to take him back to what is now his home: an institutionalised holding pen for the doomed elderly, that society has chosen to forget about. I have no idea what his long-term prospects, if any, are. Prior to his accident he worked in a warehouse, and he doesn’t come from money. I have no sense of whether I will ever see him again. In part, because I have no idea how much longer he might live.
Tomorrow I relocate to my new nursing home. It at least has good reviews online, although I have been warned not to trust the websites of these places. The great irony of leaving rehab is that for most of the time I have spent here I have hated it with a passion. Being cooped up in a chaotic hospital environment, with people I have nothing in common with, whilst trying to come to terms with how ruined my life is, has largely been hell. I cannot shake the feeling that I now occupy the status of something between a full person and livestock. Deprived of everything that previously made my life so rich and worth living, this has often felt like a carefully calibrated form of torture. And yet I have known for the past few months that what comes next is probably going to be worse. I hate it here, but leaving is no comfort at all. I suspect that by the end of the week, I will wish I could come back.
The truth is, I’m scared. A year ago, I happily entrusted my life to a rope, lumps of metal, and the steady hands of a friend, putting myself in situations of fear for fun. Now I have to hope that strangers I haven’t yet met remember to properly flush the plastic tube that pokes out of my guts, so as to help ensure that I do not die alone in the night. It is some turnaround. As the old saying goes, you don’t know what you’ve got until it’s gone.
Paul....please keep writing. If where you go does not give you adequate care....let us all know....I happen to have cerebral palsy on my left hand side, I use a quad stick....to live with a disability from birth is so different from having disability thrust upon you. I am not in anyway comparing the both btw. But I do know the system and how to fight it. So keep us updated. Please.
Best wishes as you move on Paul.
I hope it turns out to be better than you fear.
I often think about something you have written as i go about my day with an internal promise to myself to write to you later. Inevitably time passes and i do forget....(easily unfortunately) due to short term memory issues.
For my own well being i have decided to have a total break from social media for a few months.
I will light a candle for you and send a good wish your way intermittently.
Try to be kind to yourself.
Don't even attempt doing anything ir trying to think anything through when you're tired. It's the doorway to self criticism and loathing.
You are coping remarkably well...believe it or not. Keep writing.
For now i send love and many blessings to you and your team.x Angela (in retreat).