A bit of a head case
So here’s the thing. My head hurts. I have had a sore head since April 13th, 2010, and I am fed up with it.
It’s not a headache in the ordinary sense. It’s a pain that spreads across the back of my head, a ‘raw’, tender feeling, like a graze on the inside of my skull. Some days it almost disappears completely. Other days I wake up with it and muddle through the day with it and go to bed with it. Sometimes it’s a mild ache that I can ignore, sometimes it’s a sudden smarting pain that makes me clutch at my head with both hands. It is worse if I am tired or under any kind of mental or emotional stress, when it can stab at me without warning. It affects my daily life, which means it affects my family’s daily life too. It’s demoralising and tiring and just bloody boring.
As regular readers will realise, this head pain is a symptom of the brain injury which I sustained in a snowboarding accident last April. Whether or not to write about it on Dancing Beastie is a frequent dilemma. On the one hand, I don’t want to mention it because of the danger of writing a tedious ‘poor me’ piece; and because, as I say, I am just fed up of the whole subject. On the other hand, I do want to for two reasons: firstly, because I’m living with it all the time and to avoid any mention of it seems slightly artificial. And secondly, because I think it’s helpful to log these experiences on the web as a support for others facing similar situations. Anyway, I’m writing about it today for selfish reasons. I’ve had a bad week with the symptoms and I just need to let off some steam. If it’s useful for anyone else dealing with a brain injury, all to the good.
When I finally saw a neurologist last December, he said that I would probably be more or less recovered by about a year after the accident. I know it’s silly but, as the anniversary approached this April, I became more and more obsessed with the fact that I was still feeling far from my old self. Against my common sense I got it into my head that I had to be better by April 13th or I would somehow have failed. It was a meeting with someone from Headway, the brain injury association, that put things into perspective.
‘A year,’ she said. ‘After a brain injury, that’s nothing. You’ve hardly begun.’
This could sound negative, I suppose, but for me it was very reassuring. I can just keep on recovering at my own pace, and it will take as long as it takes.
And I am recovering. The physical and mental after-effects of the accident were, frankly, horrible; but they have mostly worn off. So I am incredibly lucky. You can hear the but coming, can’t you? Well, some of the after-effects are still with me, and I didn’t expect them to be, and they are a pain in the neck. Literally, ho ho. There’s the headache, but there’s also discomfort in my neck and shoulders caused by the whiplash (and by its not being treated until nine months later). And tiredness is still a problem, although nothing like it used to be.
What I find harder to deal with than the physical problems – which are generally inconvenient rather than debilitating – is the damage to my thought processes. This is what makes me feel ‘brain damaged’, although to meet me you wouldn’t know anything was wrong, unless you knew me very well. You might think I was mentally a bit slow sometimes; you might get a bit irritated by the way I sometimes grind to a halt in the middle of a sentence, groping for a word that escapes me. You might notice that I stammer occasionally (always when I’m tired or stressed, both of which happen more easily since the injury). That’s about it but, to me, it’s so frustrating. I have always loved language. Poetry, academic discussions, the exchange of ideas: these have always lit me up with delight. My eight years at university, studying for an MA and then a D.Phil., were the most intellectually stimulating and satisfying of my life to date. Ever since, having a doctorate was something of a talisman to me: other inadequacies notwithstanding, I was always confident about having a quick brain. It was something essential to my sense of self-esteem, my sense of identity in fact. (God, my head is smarting as I try to explain this.) So finding that I had become ‘a bit slow’ made me feel…fragile. Transparent. Useless.
Looking back over notes that I made at intervals last year, though, I do see that there has been improvement. It’s good to have made notes, as progress day-to-day often seems negligible: it’s like watching a clock, or trying to see a flower growing. This time last year, I couldn’t read through a newspaper article: I’d lose concentration half-way through, lacking the mental energy to finish. Being expected to organise something, or process information as someone spoke to me, or even to decide whether I wanted tea or coffee, felt overwhelming: my heart-rate would go up and I would feel tearful and panicky. All mental effort felt baffling in its complexity. A lot of the time I just felt stupid, with a brain full of fog and shadows. I couldn’t even type properly: having been a touch-typist since my teens, I was suddenly spattering mistakes all over the screen and having to go back, laboriously, and correct myself all the time. I felt angry with myself a good deal of the time, and low.
Discovering Headway was a breakthrough. For one thing, I discovered that all of these difficulties were normal symptoms of brain injury, so I learned to be a little more forgiving of myself. Even the tearfulness, the depression, the irritability were recognised symptoms in themselves: ’emotional lability’ is how the medics classify it. For another, I have learned to be a little – a very little – more patient about recovery, now that I understand that it is measured in months and years rather than days. Even my fourteen months of head pain is nothing out of the ordinary, apparently. ‘Around a quarter of people with severe head injuries are still suffering from headaches two years after the accident’, says the Headway website. ‘These headaches are generally aggravated by stress, or by trying to “do too much”.’ (The thing is, you can’t just take to your bed for a couple of days when there are little children to look after.)
Another breakthrough was some sessions of cranio-sacral therapy last June, which relieved the unbearable pain and pressure in my skull. One day, very close to despair, I blurted out to the therapist, ‘I need to be trepanned.’ That’s the stone-age technique of bashing a hole in the top of someone’s skull to relieve head pain. (Evidence of later bone growth on trepanned skulls shows that sometimes people even survived it.) Well, I can’t explain how she did it, but somehow this gifted healer succeeded in effecting a trepanning, by nothing more violent than holding her palms over the top of my head. After ten minutes or so I felt a sensation like a window opening in the top of my skull, and all the heat and pressure escaping, letting in light and cool air. It was extraordinary, and it made life bearable again. Since this time last year, then, both the mental and the physical symptoms of the injury are greatly lessened.
I’m reasoning myself out of my tantrum, aren’t I? Positive thinking is essential to recovery, as we all know. The internet and print media are full of inspiring stories of illnesses overcome, injuries surmounted. Headway itself has a section where people tell their own stories of living with traumatic brain injury: their upbeat messages are both humbling and cheering. You know what, though? Just sometimes, I bet even the most Pollyanna-ish survivor needs a jolly good moan. I firmly believe that it’s unrealistic, even unhelpful, to pretend that everything is rosy all the time, and that it can be as therapeutic to share a good honest grumble as to encourage each other to think positive. So here’s my contribution. I have had a sore head since April 13th, 2010, and I am fed up with it.
[In addition to my other posts about brain injury, which you can find under ‘head injury’ in the tag cloud at top right, there are a number of other blogs which address experiences of brain injury. For example, needled, broken brilliant and traumamorphism.]