I woke up last night at about 3 AM in pain. Well, in more pain than normal. It’s been almost 6 years now that I have lived with permanent pain, a span of time I remembered this week when I spoke to a fellow quadriplegic who said he’s also been in pain since his injury, forty-three years ago (but still, he insists, he has had a great life). It seems an awfully long time. To greater or lesser degrees, it’s a problem for many people with a spinal-cord injury, and it sometimes worse for people whose damage is incomplete (as is mine). And I know we’re not alone.
Nerve pain is hard to describe. Imagine a sheet of finally grained sandpaper, which is rubbing lightly over your skin, pushing a little harder on your hands, feet, bottom, and groin. It burns, although it’s not excruciating. But it continues without pause for minutes, hours, days, years. It moves in waves, gentler in the morning, but increasing in intensity as the day wears on. If you’ve ever had a urinary tract infection, nerve pain in the bladder is like that desperate feeling that you need to urinate, but there is no relief and no antibiotic that will bring it to an end. In addition to nerve pain, some of us are also rewarded with stabbing aches (whether real or phantom, they feel concrete); imagine the ache of arthritis in your hip or back, but you can’t easily move to relieve it.
To write about pain is fraught. It is open to narcissism and overstatement – “look at me, look at my courage and resilience.” But there is nothing inspiring about dealing with pain. Mostly, we just do our best to ignore it – to pay attention to other things. And when it ratchets up, I’ve learned to curse; a grumbled sheet, folk (my voice recognition software is protecting your eyes and ears), which doesn’t really accomplish much, but sometimes you just need to let it out. It’s not spiritual, or courageous. It is a fact of life, but not the whole of it.
Pain is meant as a warning mechanism, but there is no warning in nerve pain. But it turned out that I should have listened to my body last night. The pump on my pressure mattress had switched off, I didn’t realise it, and my bed had gone flat. When my carers arrived in the morning, we discovered a pressure mark. Nothing substantial (I hope), but enough to keep me in bed. And that really gets my goat.