An anniversary: three years on
I have been celebrating. Yesterday was the third anniversary of my head injury, so my husband and I cracked open a wee bottle of bubbly and drank a toast. Perhaps I should explain…
I haven’t written about my brain injury for a while now, which is in itself a positive sign. As the months have passed, my recovery has continued to creep onward and other life events, both good and bad, have taken the foreground.
All being well, I probably won’t write about it again. I am so lucky: I am basically absolutely fine. You would not know on meeting me that I had ever suffered a brain injury. Nonetheless, the ‘new normal’ of my life today is subtly different from normal life before my accident.
When you hear the words ‘traumatic brain injury’, you probably picture the worst. Someone in a coma in hospital. Someone in a wheelchair, head lolling. Dreadful cases like these are the extreme ones, requiring intensive medical attention and long-term care. Of the estimated one million people in Britain who suffer a traumatic head injury each year, however, around 85% will be classified as minor cases. (Source: https://www.headway.org.uk/key-facts-and-statistics.aspx ) That means there are an awful lot of people out there who look fine but who are living with their own ‘new normal’.
For me, there are certain symptoms of head injury which have not yet disappeared. I may be stuck with them – this may be my normality from now on – but their gradual diminution gives me hope that they will one day dwindle into insignificance. By now, I have learned to understand them, to work around them or just to ignore them, as required.
Because minor head injury is not immediately apparent – you can’t walk around with your brain in a sling – it can be hard for others to understand. Sometimes, even (especially?) people who have suffered their own head injury find it difficult to comprehend why the experience of others should be any different. For example, a relative of mine was in a nasty accident a few years ago and suffered a head injury which gave her months of problems. She feels fully recovered now, thank goodness. When she heard that I still have symptoms three years after my own accident, she made it pretty clear that she thinks I am making it up. And this is one of the most demoralising aspects of a mild head injury: the added insult of insinuations that it is, literally, all in your head. To be honest I have wondered this myself. Could I be making up the stutter, the headaches, the bouts of mental and physical fatigue, the nausea and disorientation caused by flash photography and strobe lighting? If other people have recovered so much more quickly, could I just be exaggerating it all, playing the victim?
I asked my neurologist for his opinion on all this last time I saw him. He told me very firmly that every case is different. Sometimes an apparently quite serious head injury can have no lasting consequences, whereas an accident that seems relatively trivial can result in years of difficulties. There is, evidently, no set pattern of recovery from brain injury.
Similarly, it used to be thought unlikely for there to be further recovery from a brain injury after a year. We now know that the brain’s powers of recovery are greater and less predictable than that. Whether modest, like small improvements in memory, or phenomenal, like a coma patient waking up after twenty years, the repairs that a brain can make on itself are truly wonderful. In my own case, I used to write down every tiny improvement, inching my way impatiently towards competence. Now I need hardly think of them as I go about our normal family life. My husband says that he has ‘got me back’.
The constant pain in my head that once drove me almost to distraction is now, usually, little more than an occasional throb, managed by medication. It’s there on a daily basis, but it really troubles me only when I have overdone things. My neurologist explained that these headaches are neuropathic in origin. Contrary to some assumptions I have encountered, that doesn’t mean that they are made up! It means that they are caused by nerve damage. In very simplified terms (and bear in mind I’m only the patient, not the brain surgeon) the brain has a couple of options when it encounters damage. It can repair the damage, which may take months or years, or if this proves impossible it can work out a way to ‘re-route’ around the damage. The third possibility is that it can’t manage to do either; but I am hopeful that my brain will carry on working on itself, and that the pain will eventually disappear and I will be able to stop taking daily pills.
While neuropathic pain is very real – as sadly some of my readers understand from their own experience – it would be foolish to deny that psychology also plays a part in recovery from injury. Last time I wrote about my head injury, I was hopeful that post traumatic stress counselling was going to ‘cure’ my difficulties with light and noise. In brief, yes, I have been helped enormously by the meetings I’ve had with a clinical psychologist specialising in trauma. She was able to unravel the panic and stress I felt, and to dissipate my extreme reactions to stimuli. Once the panic was dealt with, however, I was still left with physical reactions to flashing light and loud noise: nausea, dizziness, disorientation. These are caused by damage to the brain, not by psychological reactions to injury, meaning I am stuck with them unless/ until my brain can repair this damage. So I may not be watching any more action movies for a while after all (sorry, Arnie!) and I have to avoid flash photography and dance floors with disco lights bouncing off the walls; but funnily enough that’s fine. Now that the stress has been diffused, it’s much easier to be practical and philosophical about such symptoms. From what I read on the Headway community forum I know that there are others with similar problems, and I’d urge anyone who is suffering from panic and anxiety following an injury to ask their doctor about the possibility of post-traumatic stress. It’s not something which can vanish by just trying to ‘pull yourself together’, but it can be helped enormously by the right specialist.
There are some regrets I have about the past three years: chiefly the effect of my injury on my family. My younger son was at kindergarten when the accident happened, and now he is half way through primary school. He can scarcely remember a mummy who wasn’t irritable about noise, who didn’t stutter when she was stressed, who wasn’t taciturn with exhaustion at afternoon school pick-up time. Somehow he has remained sunny throughout, thank heavens, and I have managed to build strong bonds with him and his brother, but I would not have wished any of this on them or their father.
There are some fears I have for the future, like the long term effect of traumatic injury on my brain power as I grow older. Some scientific studies have made a link between brain injury and the development of dementia. But as the saying goes, sufficient unto the day (are the troubles thereof). There are more important things to concentrate on, like my children and my wider family and community. Having been a recipient of so much care and kindness throughout my recovery, it feels good to have the energy now to give a little back, for example through fundraising and voluntary work, and just through trying to be a better wife, mother and friend.
Last year was a leap year. Walking in the woods on the 29th of February, the ‘leap-day’, I thought that – against all logic – it did feel as if one had been granted an extra day of life. Then I thought that, since my accident, every day has been an extra day of life, a free gift.
All in all, then, there is plenty of reason for my husband and I to have drunk a toast last night. We drank one for ourselves, and I raise a glass to wish the same to you. Ladies and gentlemen: your very good health.