Something on my mind
There has been something on my mind lately. For several months, in fact. Whatever I’ve written about here has been a substitute for what I’ve really been needing to write, but have been unable to put into words. Whenever I’m musing about life, trees, children, nature – this other topic is lurking in the background. It is literally on my mind: it is the subject of post-concussion syndrome, Traumatic Brain Injury, or, to put it plainly, a good old bump on the head.
In April this year, I was knocked unconscious in a snowboarding accident in the Alps. Ever since then I have been struggling to deal with both the consequences of the accident and the absence of support from the medical profession. At the time of the accident my attitude was very much that I didn’t want to make a fuss and should try to carry on as normal: the problem was that it was impossible to carry on as normal, as (I now know) I had suffered a significant brain injury. Often, as I struggled with the many symptoms – inability to follow a train of thought, for example; acute sensitivity to light and noise, gaps in my memory, speech impediments, crushing fatigue and continuous, intolerable pressure and pain in my skull – I thought I must either be an unusually elaborate hypochondriac or possibly going mad. I had never heard of post-concussion syndrome. The first GP whom I went to back in Britain seemed to have no experience of concussion and gave me no advice beyond ‘take some aspirin if you have a headache’. (‘if‘!) I had no idea where to turn for advice, treatment or support, and no idea how to explain to friends and family that, far from ‘milking’ that little bump on the head of so many weeks ago, I actually felt more profoundly unwell, in body and mind, than I had ever felt in my life.
Dealing with the lack of care from the ‘caring’ profession has been almost as hard as dealing with the injury. Knowing in your bones that you are ill, but its not being acknowledged or taken seriously is, as many people sadly know, extremely distressing. In my case, if I had received the appropriate care on the day of the accident and in the weeks immediately following, I feel sure that I would be closer to recovery now and that the past eight months would have been more bearable. It was only after seeing three different doctors over the course of the year that I summoned up the resolve and mental energy, in November, to go to a fourth GP and ask for a referral to a specialist. This week, at last, I saw a neurologist. He made it clear that I should have been referred to neurological specialists on the day of the accident or as soon as possible thereafter. It is, he said all too common for significant brain injuries to be overlooked by primary healthcare professionals (your GP, in Britain) and for patients to have to cope alone, being eventually – if at all – referred to neurology months too late to be helpful.
This is why I wanted to write about my experiences. My first blog post after the April accident was called ‘Normal service to be resumed shortly‘, because I assumed that was true. Yet here we are, nearly at Christmas, and my ‘normal service’ inches closer every month, but is still out of reach. It’s important to say that, thanks to wearing a helmet, I am still here and I do not have serious brain damage. In essence our family life has gone on as happily and fully as ever this year, so I am extremely fortunate, and I don’t want to suggest that my injury is something bigger than it was. However, the general ignorance (which I shared) surrounding concussion and its after-effects is such that most of us probably don’t think it is anything much at all, and sufferers can thus find themselves battling feelings of isolation and confusion in addition to the effects of the injury.
For anyone who finds details of other people’s ill-health tedious in the extreme, I sympathise! Feel free to skip this post and any subsequent ones on the same topic. Friends and family had probably better look away now, too, as this is all embarrassingly self-revelatory. However, for the sake of anyone else who has suffered a concussive brain injury, and for the sake of the doctors who first treat them, I believe that it is important that as much shared experience as possible be made public on the Net. Perhaps, this way, other sufferers and their carers will be better informed than I was.
The irony is that I so nearly didn’t go out on the ski slopes that week at all. It was our first family skiing holiday. My husband, who had skied before, was keen to take the chance to join a party organised by his sister and other relatives. I went along with the plans because it was a great opportunity for the children to have their first skiing lessons. We live less than an hour from the Scottish ski slopes, so it makes sense for the boys to learn. For myself, however, I was very reluctant. My only experience of skiing was a few miserable attempts at school, and I had no desire to try again: all those planks and knitting needles to coordinate while sliding too fast down a hill – what’s to like? On the other hand, I didn’t want to end up as the chief nanny/ bag-holder while everyone else was off up the mountain having a wonderful time together. Snowboarding looked easier than skiing: there’s only one bit of hardware to worry about. But was I too uncoordinated/ unfit/ old for it? I asked my brother’s advice. He inherited all the sporting genes in our family, leaving none for me, so he has tried both sports and could be trusted to give a big brother’s brutally honest opinion. Skiing or snowboarding?
‘Well,’ he said cheerfully, ‘you’ll never look cool on a snowboard, but it’s a bit easier than skiing, so I’d go for it.’
Fortified by this inspiring advice, I signed up for a week’s snowboarding lessons in France.
It was fun. My Italian instructor was careful, funny and encouraging. (He was also rather gorgeous, which is of course a prerequisite for ski instructors.) In between my wavering attempts to get down the nursery slope, we’d sit at the top and chat light-heartedly in a mixture of very rusty Italian (mine) and beginner’s English (his). By the end of my first morning, I had begun to feel that this snowboarding lark might just be something I could do, and even enjoy doing – an exhilarating idea for a terminally un-sporty girl. As the lesson ended, however, the instructor turned uncharacteristically serious. I must, he said, get a helmet before tomorrow’s lesson. For a beginner it was very important.
‘I did try to hire one,’ I protested, ‘but there were no adults’ helmets left, and they cost a fortune to buy.’
He was adamant: I must find one somehow before coming out on the slope again. That afternoon, then, I set off rather reluctantly to the ski shops in the resort. The first place I looked sold white and gold lizard-skin covered helmets for about 500 Euros. Yeah, right. Eventually I found a scruffy snowboarding shop in the town’s little mall. Feeling a bit of a fraud, I squeezed past the cool young dudes hanging out there and found myself a plain, functional, well-fitting helmet for a fraction of the price of the jet-setters’ boutique. It still seemed like a lot of money for just four more lessons, ‘but hey,’ I joked to the shop assistant, ‘I suppose it’s cheaper than a fractured skull!’
When we opened the shutters in the chalet the next morning, we found icicles along the gutter and a powdering of fresh snow on the tiles. It had turned much colder overnight, and the pistes were icy and hard. I remember sitting – feeling self-conscious in my new helmet – at the top of the nursery slope, patting the ice and remarking to my fellow pupil that I wouldn’t like to fall on that today. Then the lesson began.
The rest of that day is dark. The odd memory is there, like a flashlight flickering across a darkened room. Making a turn on my snowboard and suddenly getting the feel for it. Noticing that my husband and sister-in-law had come to the edge of the piste to watch. Walking clumsily down the hill to the cable car, vaguely aware that there were a lot of people around me who seemed to be treating me with exaggerated care. Somewhere dark; a voice needling at me with difficult questions when I just needed to sleep. Confusion. Anxiety. Pain everywhere, filling up the world. Darkness. Sitting on the bed back at the chalet, my sister-in-law helping me get undressed. Hours later, or minutes perhaps, my husband in bed beside me, tears of stress and exhaustion in his eyes, begging me to stop asking him the same questions over and over again because he couldn’t answer them any more. Standing in the bathroom under a light that seared my eyeballs, trying to find painkillers in my washbag as the doctor had not given me any. Swallowing paracetamol that were no more use than Smarties, like a sticking plaster for a car crash. Lying in bed, frightened and distressed, not understanding where I was or what had happened to me, enduring the crawling hours of night in a miasma of thunderous pain.
Pieced together from witnesses afterwards, the bald facts of what happened are these. As I was making a cautious traverse of the nursery slope with my instructor, two men skied downhill straight into us. They were not going particularly fast, but they made no attempt to stop or to alter course. My husband said it was like watching a car crash in slow motion. They both collided with my instructor, and the three then fell on to me, toppling me backwards downhill, the weight of the three men on top of me. With my instructor trying to hold on to me by the upper arms to prevent my falling, and my legs bound to the snowboard, I fell hard on my coccyx and my skull bounced off the ice. Only when I failed to scramble straight up again did my husband begin to suspect anything more than an unfortunate tumble.
It was less than a minute, apparently, before I began to get back on my feet, apologising for the accident. One of the men realised almost immediately that I was concussed. I had no idea what country I was in, who I was with or what I was doing there. When informed that I had been snowboarding, I am told that I replied, ‘Me, snowboarding? How unlikely.’ Accompanied by my husband and others, I walked to the chair-lift and was taken to the local medical centre. On the way there I was, I am told, chattering with my instructor in fluent Italian. It is twenty years since I worked in Italy and I didn’t know that there was more than a sentence or two of the language still in my head: it is almost as if, with the top layer of memory wiped clean, the brain can reach down into deeper recesses. One of the more bizarre discoveries of the day.
We spent most of the rest of the afternoon at the medical centre, of which I have no memory beyond darkness and difficult questions. (‘What country are you in? When did you arrive? What is the name of this town?’ At least they were in English: all my knowledge of French had vanished.) I knew my husband and remembered that I had children, about whom I was anxious. (My star of a sister-in-law and her equally wonderful teenage children took care of them that day.) After two hours, the doctor was satisfied that my memory was starting to return, and I was discharged. He did not send me for a CT or MRI scan. He did not prescribe me any painkillers. He gave us no discharge advice at all except that I should not take ibuprofen, which can increase the risk of a stroke following concussion.
The next day was a strange limbo. Feeling weak and battered, I dreaded being left alone while the others went skiing, and was grateful when my husband explained that he had decided to stay with me that day. Eventually I thought that I should stop being lazy and get up. Everything seemed to take a very long time, however; even thinking. My brain seemed to be working at glacial pace: it was very slow in making sense of what my husband said to me, for example, or in remembering what I was doing. (‘Socks on. Now what. Oh. Trousers. Right. Get trousers. Now what. Oh. Put them on.’) Thinking and speaking felt like an enormous effort. My tongue seemed as tired as the rest of my skull: it was a physical effort to get words out. At last we made it outside. I looked at the ski resort as if I were seeing it for the first time: everything seemed new and fresh and mildly surprising, yet I was somehow detached from it all, even from my own body. It was as if I was floating just above all physical sensation, observing yet essentially absent from myself. I wore sunglasses as the daylight seemed to pierce my skull. After a little trip in a cable-car and a hot chocolate, I was exhausted, and my husband had to help me back to bed. That evening, though, I went down to dinner with the rest of the party, trying to keep up appearances, and even drank a little of a glass of wine to try to dull the huge pain in my head, although it made me feel sick.
In retrospect it seems quite mad that I went back to snowboarding two days after the accident. I was determined, however, that the stupid skiers who caused the accident were not going to put a stop to my holiday. The others in the party seemed to agree. So back I went to my lessons, even though I could not move my head from side to side at all (the whiplash had inflamed my neck muscles, I suppose) and even though my vision blacked out two or three times as I stood at the top of the nursery slope. At some point in the morning I had an inevitable little fall, banging the back of my helmet again as I landed. I lay dazed on the snow with, I swear, cartoon stars circling around my head. Then my instructor swam into my vision. ‘What are you doing down there?’ he laughed. He helped me up and we carried on. By the following day, the last lesson of the week, I was able with his help to leave the nursery slope and tackle a little of the mountain proper. It was a huge confidence boost, really exhilarating and, in many ways, I am still glad that I did it.
When we eventually got back to England, after a long journey disrupted by the volcanic eruption in Iceland, my sister-in-law marched me to her wonderful osteopath. He sorted out a lot of the pain in my pelvis caused by the twisting fall onto my hips. He explained that the stiffness and soreness in my neck and shoulders was largely caused by the jarring impact travelling up my spine, and was exacerbated by the whiplash effect of my head bouncing as it hit the ground. He did strange things to my ears which somehow helped to relieve the difficulty in speaking. After he had finished with me, I thought I would go home and be better by the end of the week. As it turned out, that was only the beginning.
Weeks later, I was to discover the website of the brain injury charity, Headway. There, for the first time, I discovered the advice that I should have been given by the doctor who saw me on the day of the accident, or by the GP to whom I went in continuing pain and distress two weeks later. It seems that we did almost everything wrong. Headway produce a factsheet of ‘Minor Head Injury Discharge Advice’ which should ideally (according to my neurologist) be given to each head injury patient by their GP. (Failing that, you can download a PDF version from their website.) It tells you, for example, that you should be monitored by a responsible adult for the next few days (so my husband’s instinct to stay with me was right). It gives a list of possible symptoms which should have you returning to A&E as soon as possible, including ‘problems understanding or speaking’ and ‘severe headache not relieved by painkillers such as paracetamol’. It also advises that you take plenty of rest and avoid ‘any contact sport for at least three weeks’. This is partly because of the well-documented [here, for example, by the American Brain Injury Resource Center] risk of further damage to a brain which is already in an inflamed and vulnerable state following the primary injury. (So taking a second blow to the back of my head two days later was probably not a good idea.) ‘DON’T drink alcohol’ it adds, and ‘DON’T return to driving until you feel you have recovered’. With hindsight, it’s rather horrifying that I shared the long drive home to Scotland in a hire car from Southampton, driving my family more than two hundred miles up the M6 motorway. No harm done, thank heavens, but no wonder I was pole-axed with exhaustion afterwards.
It is the persistence of symptoms of brain injury, ever since then, has has sent me back to the doctors in search of help. I intend to write more about these continuing symptoms in a future post, as this one has been quite long enough. (I want to document them, although it seems horribly self-indulgent, so that anyone else in a similar situation might not feel as baffled and isolated as I did.) For the moment, I would like to finish with what the neurologist said this week after his assessment. This is based on notes I took in hospital immediately following the appointment, so I should make it clear that it is my version of what he said to the best of my (arguably dodgy!) recall, not his direct speech.
1. Measured by the extent of memory loss on the day of the accident, I have sustained a significant head injury which should have been referred to a neurologist as early as possible. Lack of major bleeding requiring neurosurgery does not mean that it was not a serious injury. Unfortunately, it is all too common for GPs to fail to realise this. A CT scan, which I was eventually given in July, only shows up major areas of clotting or bleeding, not more microscopic damage to blood vessels. It would have been useful for me to have had an MRI scan several months ago, but it is too late now to be helpful.
2. Tests carried out by the neurologist (memory, visual, cognitive etc.) show lacunae in mental functioning where it falls below the expected level for my education. This indicates damage to the frontal cortex of the brain.
3. Indications are clear that I have suffered severe bruising to the brain, with most of the damage being to the frontal cortex (which controls executive functions, eg. thinking, planning and organising, problem solving, emotions). There also seems to have been damage to the temporal lobe (at the side of the brain) which controls memory, understanding and language. Damage to these areas is fairly common as a result of a blow to the back of the skull, owing to the way that the brain is shaken about by the impact, lacerating itself on the rough bone of the interior of the skull.
In conclusion, the neurologist thought it was regrettable that I was not referred to him much earlier, and that I had been ‘left in the dark’ by the GPs and have, of necessity, ‘done a lot of the hard work myself’. (My husband has done a lot of the hard work too, in supporting me through this in so many practical and emotional ways.) The neurologist spoke highly of Headway and was glad that I’d found them, although he said that the first GP whom I saw should have referred me to them himself. I got the impression that he thought that the GP should also have referred me to the local Brain Injury Rehabilitation unit months ago, and also to a physiotherapist. However, he thinks that I am coping well and am likely to be more or less fully recovered by a year after the accident.
So I feel vindicated, in a way. Just to be listened to, to have the injury and its profound effects recognised and taken seriously, is a blessed relief. But it has been a long road which I would rather not have travelled, and I hope that others will find more enlightened doctors than I did in the crucial early days. I am very grateful that the fourth family doctor I went to was one who listened, who gave constructive advice and who referred me, at last, to a neurologist.
And the neurologist says that I should give up snowboarding. At least for this season…
See also: convalescence