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Something on my mind

December 10, 2010

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


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49 Comments leave one →
  1. December 10, 2010 3:48 pm

    Dear Dancer (I refuse to call you Beastie!)

    Thank you so much for sharing this traumatic event and your ensuing ongoing struggle with us.
    Looks as if you were ‘too bl**dy British’ down to your boots – not wanting to make a fuss and loving our good old NHS too much to kick up the stink that needed to be kicked up in order for you to be properly referred. I am pleased for you that you are now getting something of the proper attention that you need and deserve.
    I am SO GLAD that you have written this down, documented it, but also got it off your chest; as an advocate and practitioner of therapeutic writing, it can only, in my humble opinion, be A Good Thing. I hope you feel you can keep on writing about it.
    May I also point you in the direction of Barbara Stahura, another writer who uses journal keeping therapeutically, and who has particularly written on living with the aftermath of Traumatic brain injury.
    http://www.barbarastahura.com/
    I am in admiration of your cheerful writings here, but also feel honoured to have been able to be witness to a more difficult time. I will continue to read and listen should you choose to share more publicly in the future. Thank you for allowing us to hear this story.
    Warm wishes,
    Roz.

  2. December 10, 2010 4:38 pm

    Woah that’s some scary stuff! I can’t believe they sent you home after 2 hours even though it was really obvious that you had lost some of your memory, and that they sent you home with no follow up care, no pain killers or even advice. Having your vision black out on you is not pleasant (as I found out after getting whiplash on a high ropes course, then days later have my vision disappear while supervising my class at lunch time).
    Glad your finally seeing a neurologist and thank goodness nothing worse has happened in the mean time.

  3. December 10, 2010 4:44 pm

    What an interesting – though horrifying – post, but what an important one, too, both for you to have written (and I don’t think you’re being self-indulgent at all) and for us all to read. You have my sincere sympathies as well as my thanks as I shall now insist that my family wear helmets when they next ski.
    I commend your openness and I hope your full recovery is not long in coming.

  4. Erika W. permalink
    December 10, 2010 5:33 pm

    Thank you sincerely for such a very important post. There comes a time when the stiff upper lip and the gloss of humor and good cheer just don’t cut it any longer. I know because I experience a similar, though for very different reasons, way of living with a possibly lasting condition. I have had idiopathic trigeminal neuralgia (No known cause) for nearly 19 years now. I dodge between reasonable health and periods of intense pain and zombie-like dimness caused by the medicines needed to keep it more or less at bay. It was 2 years before it was correctly diagnosed and before I saw a neurologist–now a good friend of ours. Your husband sounds like a tower of strength, as is mine. I am much older, 69, but had to stop working at a professional life which I loved. I think you will find that using this blog to talk about it may help to relieve a lot of stress and may let you find others, like myself , who understand quite deeply. I have no need to rabbit on about myself any more–but this is to show you how very close I feel to you and to your family.
    Your particular injuries should well creep towards a much a better state and I do cheer you on towards it. My best wishes and a big hug, Erika W,

  5. Barbara Stahura permalink
    December 10, 2010 6:09 pm

    Thank you for having the courage to tell your story. Brain injury, especially in milder forms, is often ignored or dismissed, as you discovered, even in the U.S. It’s important for survivors, family members, healthcare workers, etc., to get the word out. Far more people suffer brain injuries every year than most of us know. And it’s not in the least self-indulgent to talk and write about your experience. Please remember that! I realize that you don’t want this issue to take over your life (although it already has in some ways) but it’s now a part of your life, so feel free to blog about it when you feel it’s warranted. It’s by sharing our stories that we learn and grow–and help others to do the same. Perhaps when someone reads about your experience, the lightbulb will go on for them about a possible brain injury they, or someone they love, has sustained. When that happens, your writing will be even more important and beneficial than it already is.

    And thanks to Roz, above, for mentioning my website. My husband has the TBI (pretty bad at first, but he’s recovering well. He also was wearing a helmet, thank goodness, while riding his motorcycle and a car turned in front of him), so I know about the family caregiver side. Bravo to your husband for taking such good care of you! And, as Roz says, writing about traumatic events can be therapeutic. So if someone gives you a hard time about writing about your injury and experiences stemming from it, just let them know that you’re taking good care of yourself!

    May your recovery continue to go well.

    Cheers,
    Barbara

    • dancingbeastie permalink
      December 12, 2010 5:38 pm

      Thank you to each of you for your supportive and encouraging words. Roz, yes, I probably have been too British about it all, you’re spot on! Thanks especially for the useful link to Barbara’s website, and Barbara, thank you for visiting and commenting. Your site looks like one I’ll be reading a lot. It’s really helpful to compare notes with others in similar situations.

      Cornflower, if this makes your family wear helmets then it has already been worth publishing. Thanks.

      Erika, your condition sounds enormously hard to live with. I can only imagine. I am very lucky that I am already recovering from a transient injury, but I really appreciate your kind support.

  6. December 10, 2010 6:11 pm

    Thank you so much for sharing your journey with us. I hope that none of us ever has such an injury, but your story will make us more aware of the signs and symptoms of even a minor brain injury (if there is such a thing). Wishes for continued recovery.

  7. Margaret Lambert permalink
    December 10, 2010 8:07 pm

    I fully support what everyone else has advised, with all respect and sympathy

    The fear of facing any brain disorder, whether organic or from injury, is something that affects more than those with British reserve.

    I was responsible for finding care for my father when he developed Alzheimer’s Disease and could no longer remain at home. Sadly, he had been a caregiver for my mother who had disabling rheumatoid arthritis. As he was the third generation with that disease, and I am the eldest of the next generation, I have been very interested in clearly understanding everything about the brain: how, when and why it is affected by memory loss and dementia, in particular. Oliver Sacks’ books have fascinated me, and I spend a great deal of my time in activities which (I hope) stimulate my brain- many involving my computer!

    No doubt you will continue to gain back the speed and finesse of your healthy, intelligent brain as it recovers from the injury. I hope that you will continue to enjoy blogging, with all the skills that producing a post involves. You have an enthusiastic and supportive reader in me.

    • dancingbeastie permalink
      December 12, 2010 5:41 pm

      Thank you, Mary, and thank you, Margaret, for your kind words and also for being such loyal followers of this blog, no matter what I throw at you! It is very much appreciated.

  8. December 10, 2010 8:18 pm

    I can only echo the comments of everyone else and am so glad that you took the brave decision to write and to write so clearly – about what happened to you. As you know, I can attest to the therapeutic benefits of doing this and I do hope that you have found the process helpful. Now that your words are up there in cyberspace, they will help others too, I am sure.

    I do think you have been enormously brave and resourceful but I am sitting here with steam coming out of my ears at the catalogue of medical errors and omissions you describe. Head injuries are, after all, not uncommon and it seems incredible that so little attention is paid to something so potentially serious. So, I am very relieved to hear that you are, now, in the care of a good neurologist.

    One of my nephews suffered a major head injury earlier this year. The prognosis was not good and an extremely anxious time ensued for all those close to him. He has, in fact -and with the right medical care – made an almost complete recovery. I say almost as the only lasting legacy of his injury has been a partial loss of sense of smell – something he is more than prepared to live with, given that the outcome could have been much worse.

    Above all, I want to thank you for all your kind and encouraging words to me in recent months, while I’ve been on my own journey towards recovery – at a time when things were, clearly, very difficult for you, dear Dancing Beastie. I’m very nearly there and am wishing my very hardest that your own good health will soon be fully restored.

    • dancingbeastie permalink
      December 12, 2010 5:46 pm

      Ah, D, it’s not easy writing about it, is it. I’ve been making drafts of this since June and still haven’t said a fraction of what I meant to say. But yes, if it’s a help to anyone else – as your luminous commentaries on your own battles undoubtedly are – then it’s worth it. And it has been cathartic for me, I find, although that was not my primary motivation.

      I’m glad that your nephew has largely recovered after what must have been a very difficult time for him and his loved ones. And I often think of you and will you on to your own complete recovery. You are an inspiration.

  9. December 10, 2010 10:55 pm

    This post must have been very therapeutic for you to write. I have two co-workers who had severe brain injuries last year (one was kicked in the head by a horse, the other had a large tree that he was cutting down, fall and roll over his head.) They are both miracles in my mind, both are doing very well, almost no lasting problems. I believe you will get there too, especially now that you know of your injury and are addressing it. Good luck. I will continue reading your posts, anxious to see your progress.

  10. December 11, 2010 4:07 am

    Thank you for this fascinating post. I hope the writing has been therapeutic. How frightening it is to realise that you had to do all the hard work yourself when the medical profession should have been doing it for you. I’m so glad you found help eventually. Best wishes for your continuing recovery.

  11. December 11, 2010 7:37 am

    Thank you so much for sharing such a personal experience it is not always easy. I am a firm believer in listening to the little voice inside us we know ourselves better than anyone. Gp’s are just like the rest of us some good some bad some indifferent and the way things are at present you rarely see the same GP for any length of time so they are unable to build any relationship with you.
    Good for you for asking to see a specialist and I hope slowly but surely things improve for you.

  12. jane permalink
    December 11, 2010 10:55 am

    Wow. Just catching up on my blog reading. Thank you for this post – the whole experience sounds as if it has been many different types of terrifying. How absolutely horrible for you. My younger brother had a very severe head injury in a road accident a few years ago and I am so aware of the impact it can have on everything about a person and those around them.

    I feel very sorry for the fact that you havent received good care. It is frustrating, it sounds as if because you didn’t start off in a British A&E you never got slotted into the system appropriately – which is frustrating but, I suspect, not uncommon these days. I am on placement in an A&E department at the moment and have become very familiar with the guidelines that are in place in the UK for who gets an immediate CT scan post-HI and who doesn’t- and yes, you’re quite right, if you had been in the UK you would have got an immediate CT owing to having memory loss from the time leading up to the accident of over 30 minutes before the injury. And I hate to think you were sent home without any guidelines as to what to do or what should prompt you to return. Slightly alarming to think of those who don’t have a supportive and sensible family around them.

    I am glad you are getting some support from the neurologists now (and I hope you will pass on your dissatisfaction with the decisions made by those GPs not to refer you). Sigh. It really is insightful to read about your experiences, so whilst I wish you hadn’t had them, I am glad that you are writing. I can see you already have Needled listed on your sidebar so I’m sure you already know that Kate writes about the obstacles she is overcoming after a stroke – another insight I feel privileged to have. I hope that writing and sharing is helpful for you, too.

    The fact you regained your Italian is absolutely fascinating, too. The brain is pure mystery, really.

    • dancingbeastie permalink
      December 12, 2010 5:54 pm

      I’d never thought about it but of course, you must be right that I missed out on getting ‘slotted into the system’ by being first treated abroad. You have experienced this issue from both sides of the fence and, while I am sorry that that should be the case, it makes your take on the whole thing very valuable.

      I have indeed been intending to write a letter to my local medical practice about the ways in which care could have been improved. It’s just a question of summoning the mental energy and lucidity to write it! But the ‘fourth’ GP has encouraged me to do so.

      Kate at Needled writes so well and is always interesting. I have a great deal less to cope with but, despite that, I often see parallels in our experiences.

      And yes, isn’t the brain a mystery? And quite fascinating. So much more to learn. Maybe I’ll be a brain surgeon in my next life 😉

  13. Curzon Tussaud permalink
    December 11, 2010 11:00 am

    Thank you for writing this. I hope it will bring home to us all how important safety precautions are, and how one should also insist on proper aftercare. I also was knocked off my skis by a Frenchwoman skiing quite improperly fast (I was standing still in the rough snow beside a piste, cleaning snow off my glasses, and found myself flying through the air and landing on the back of my head). The moral in my case was never ever ski alone, but I was lucky not to suffer any ill effects other than bust glasses (they flew out of my hands and the lenses vanished) and dented dignity.

  14. December 11, 2010 11:41 am

    What a trauma. I’m so sorry to hear about the difficulty you have had with your GP, although not surprised. My experience of the UK medical system since I’ve been here is it is usually easy to get an appointment, but beyond that there is very little they can do.

    A colleague of mine took a bad fall a week ago and she is still feeling unwell and nauseous from banging her head on the ice. she has been all but fobbed off by her GP but I am concerned because her concussion symptoms are still there so many days after the event. Your post has been really helpful and I thank you for writing it. I feel like I have some way to help her now, to encourage her to seek other advice if she feels she is not healing as she should.

    I hope you reach a full recovery very soon.

    • dancingbeastie permalink
      December 12, 2010 6:06 pm

      I’m really glad you have found it helpful. That makes it worthwhile. You should definitely refer your friend to Headway: they even do a leaflet for you to take along to your GP.

  15. December 11, 2010 1:20 pm

    Great post – Thanks for writing it. I can really relate to your experience, as I’ve sustained a number of concussions over the course of my life, and I never got the help I needed (partly because it wasn’t available) until a few years ago.

    It can be tremendously frustrating to have to go it alone – rest assured, you’re not the only one out there. I do hope you continue to write about this, and that you can keep working at your recovery. For that’s what TBI recovery takes — work. There’s really only so much that others can do for us; so much of the repair needs to happen from the daily practice of the things we want to do. There’s a tendency in the brain injury rehab arena (at least, in the US) to urge people to accept their limitations and get used to being less than 100%, but that’s not a given. Recovering from TBI is very similar to learning anything new — except now you need to (re)learn some things you already knew… all over again. That, in itself, can be discouraging. But that’s just how it goes.

    Main thing – don’t ever give up. Winston Churchill said it best “Never, never, never, never give up. … give up.” The road can be long and very lonely at times — here’s where you can rely on your British tenacity and resolve and stiff upper lip. Yes, it’s important to respect your feelings and cut yourself a break, but I’ve found that with TBI, one of the things that has kept me going through the years is a stubborn refusal to give in to my desire to feel sorry for myself and wallow in despair.

    Yes, you got bad advice and poor care at the ski resort. Yes, you got attention after the time when an MRI might have shown something (for the record, MRIs often show nothing remarkable, even with significant brain injuries, so don’t feel too deprived by the lack of imaging – there’s nothing worse than knowing there’s something wrong, and having an MRI come back “normal”). Yes, things might have gone differently. But at least you’re aware now, and you’re probably in better condition to actually respond to the advice, care, and guidance of your healthcare providers, than you were four months ago. Even if you had gotten help back in the spring/summer, you might have been too cognitively impaired (but didn’t know it) to act on what was provided for you.

    Well, I’m going on a bit — feel free to visit my blog http://brokenbrilliant.wordpress.com where I talk about my daily life with recovering from multiple traumatic brain injuries. No matter how poorly you may feel… no matter how confused and angry and upset and discouraged you may be… it does get better. You just have to get back out there, stay mindful of what you’re doing and how you’re doing it, and constantly learn-learn-learn from your experiences. You’re going to mess up, now and then — everybody does. But mistakes and blunders are blessings in disguise.

    Best of luck to you in your continued recovery.

    Be well
    BB

  16. December 11, 2010 1:22 pm

    Oops – got the quote a little wrong — didn’t mean to say “give up” twice! Oh, well… that’ll teach me to rush 😉

    • dancingbeastie permalink
      December 12, 2010 6:11 pm

      Thank you so much for visiting and for your helpful comments. Your own blog looks like the most wonderful resource for information on TBI and I am very glad to have found it! All the best.

  17. December 11, 2010 2:58 pm

    What a coincidence – in our paper this morning, the lead article was on TBIs. I don’t know if you can open this link, but here it is…

    http://www.timesfreepress.com/news/2010/dec/11/battling-brain-injuries/

  18. December 11, 2010 3:23 pm

    I am so glad that finally you have found clinicians who will listen and be supportive and shocked (but sadly not surprised) that it too so long for anyone to listen and act! Also glad that you *will* recover although it will take time, and that you have a supportive husband. I’m pleased you’ve been able to share all this trauma in your blog. I know it’s not easy for us Brits as we are very much brought up to believe in the “stiff upper lip”. But hopefully your informative post will not only help others but prove therapeutic for you too. You’ve been in my thoughts and I had been wondering how you *really* had been doing. PS I like Roz’s new name for you “Dancer” – do you mind if I adopt that for you too?!

    • dancingbeastie permalink
      December 11, 2010 3:44 pm

      Just briefly, thank you ALL so much for such generous support and encouragement. I feel a little overwhelmed by the kindness of strangers at the moment! I would like to reply to each comment when I have a little more time to do them justice (this weekend is a little manic). Meanwhile I appreciate your good thoughts and helpful advice enormously, and also your sharing of your own stories. Thank you.

  19. December 11, 2010 7:56 pm

    Thank you for sharing with us and so glad you finally found a GP caring enough to refer you to a specialist (I could go on and on about GPs but I’d better not start. I’m sure the majority are good doctors). My brother became epileptic after a knock on the head at Youth Club 54 years ago; something he’s lived with all this time.

    I do hope you improve with each day. I think you’re amazing to do what you do despite your injury and I love reading your blog. All the best and, while I’m here, have a wonderful Christmas and New Year!

  20. Jessica permalink
    December 12, 2010 12:57 am

    I spent years going to our local gps only to walk away frustrated and no closer to feeling better. My recent experiences with the BC medical service have been a completely different affair. I finally feel like I’m being taken seriously. You have my sympathy – not only for the pain and difficulties you’ve suffered from your accident, but for the frustration experienced with the local medical service.

  21. December 13, 2010 8:44 pm

    It took me a long time to read this post and to absorb all the information and to think of what to write….. probably not as long as it took you to write it, though. Thank you for your honesty and clarity in getting this all down. I feel so angry that the medical community does not take these things as seriously as they should. And for sports people who also brush off things like concussion as just part of being active. I had a very mild car crash and sustained a bout of concussion that left me very confused for weeks. My osteopath commented to me one time that he almost wished he could experience a bit of my cognitive problems just to understand what it was like – and I know what he meant (being also a health care provider).

    • dancingbeastie permalink
      December 13, 2010 10:15 pm

      Yes, the sports fraternity gives the impression that concussion is no big deal. Which doesn’t make it any easier for the rest of us, faced with the reality.

  22. December 13, 2010 10:40 pm

    I came back after reading this post a couple of days ago. And thinking of some words to write, I keep coming back to my first, spontaneous thoughts:
    1. Thank heavens “your Italian” made you wear a helmet!
    2. When feeling unwell just drags on and on, there always comes a moment one says to oneself: O come on, get on with it! But then you can’t. And you start worrying one day and doubting yourself the other. At least that’s how it works with me. Now you can probably cope with this a lot better, knowing what happened and understanding the extend of your injury.
    3. Have a wonderful, magical Christmas with your loved ones. 2011 is going to be a lot better!;)

    • dancingbeastie permalink
      December 13, 2010 11:23 pm

      Thank you so much for taking the time to comment. I like your positive thinking! 🙂

  23. December 14, 2010 2:38 am

    oh my dear! i have so enjoyed your blog since i found it – and your honesty and bravery in writing about your injury is applauded!

    its appalling to read about the poor medical advice you were given in a SKI RESORT – where you would THINK that the medical community would be au courant on HEAD injuries !

    and really – after the wide spread publicity of Natasha Richardson’s death from a similar injury – it is so shocking.

    PLEASE continue with your story – we are all supporting you!

    • dancingbeastie permalink
      December 14, 2010 11:35 am

      Thank you very much, Southern Gal. The death of Natasha Richardson haunted me. As far as I can see, the only crucial difference between her case and mine was that I was wearing a helmet. Several healthcare providers and friends have commented on the spooky parallels. Her poor family.

      As for the medic at the ski resort – I know, it’s just baffling. Maybe he had got blasé about head injuries?

  24. December 14, 2010 3:44 pm

    Really thought provoking post. I was on a skiing holiday in Austria the same week that Natasha Richardson died and everyone in the group immediately received panicked calls from parents to make sure we all went and got ourselves kitted out with helmets. It is a sad but true fact that often it takes tragedy for people to take safety measures seriously. I am glad you heeded your instructors advice and got a helmet yourself, and sorry to hear of all the frustrations of the medical system you have experienced. Thank you for sharing though, this post has given me a much greater awareness of the issues and dangers.

  25. Barbara Stahura permalink
    December 15, 2010 3:52 pm

    Hello again. For anyone interested in seeing a wide variety of excellent, informative books about brain injury, I highly recommend Lash and Associates Publishing/Training at http://www.lapublishing.com. They publish only books and other items related to brain injury. You can’t go wrong with their books.

    Cheers,
    Barbara

    • dancingbeastie permalink
      December 15, 2010 9:50 pm

      Thank you for this useful link, Barbara. I’ll be taking a look…

  26. Jenni permalink
    December 18, 2010 5:35 pm

    It is always easy to feel that one’s own country’s medics are better but I think we can see that both the French and UK doctors were appalling. I ski in Colorado and helmets are compulsory for all under-18s on lessons. Every time I go ( I started in 2001), more and more adults are wearing helmets – it’s the norm now. I am also sure that minds are focused by the signs posted everywhere stating that skiers and snowboarders have legal responsibility in the event of an accident.

  27. May 28, 2011 3:59 pm

    Hi Kate/dancingbeastie, Many many words that struck cords among us, the TBI tribe. Have started my own blog a few weeks ago on it (http://traumamorphism.wordpress.com/).
    brokenbrilliant in particular pushed a powerful button with me, as I also recovered through sheer stubbornness…to the point where I systematically did the opposite of what the doctors told me (not) to do. Ex: ah yeah?? don’t want me to eat meat in the hospital canteen to avoid the risk of eating my own tongue?? well, i’ll have the t-bone steak – well done, thanks! Joking (or rather: mildly exaggerating) aside, I think the important thing is to set yourself objectives. Ambitious, yet realistic objectives. Small steps, each and every day. And yes, things do get better over time. But not as a function of time per se, but as a function of your willpower to overcome every little hurdle one by one. It’s exhausting, and it’s a lonely – a frighteningly lonely path, as nobody except for those who have lived through it can understand what you’re going through. And for sure not any doctors who just give you, at best, neuropsychiatry 101 textbook.
    Finally, as your recovery of Italian demonstrates: not only may ‘ancient’ pockets of memory resurface, but as your brain physically rewires to compensate for the damaged sections, you will discover new gifts and talents you did not have before. And you will understand things that never occurred to you before…you have been traumamorphed – it’s both a curse and a blessing, but if you open your mind to it you realize that it is a true privilege as you have transcended to a higher level of awareness that most people around you cannot even comprehend.
    Good luck and keep us posted!

    • dancingbeastie permalink*
      May 28, 2011 7:01 pm

      Hi, I am really pleased to hear from you, especially as I have been wrestling today with a new post about TBI. Funny coincidence! (Yeah, TBI, hilarious…) Anyway, thank you for visiting and for your constructive comments. My injury was so minor compared to many, yet I’m still struggling and having cr*p days, so it’s encouraging to hear from people with a better attitude. I really look forward to following your own history on your blog. The more that’s published about it, the better, I think.

      • May 29, 2011 6:39 am

        I don’t think you need to ‘apologize’ for only having had a minor TBI. In fact, the minor injuries can be the far more tricky ones (as you know). What matters is what part of your brain was affected, and whether you recovered, not necessarily the size of the injury. I, for one, had a massive hemorrhage but recovered fully. I think of TBI as an all-or-nothing thing – you either have it, or you don’t. The rest are details.

  28. March 15, 2012 1:22 pm

    DB, no need to respond to this. I just wanted to say that this is one of the bravest and most helpful posts I’ve ever read on any blog. I’m so glad you linked to it in your post today.

    • dancingbeastie permalink*
      March 15, 2012 10:57 pm

      Thank you so much. The kind comments of readers like you have been a wonderful support.

  29. July 11, 2015 11:42 pm

    A brilliant post on so many levels Kate, and brave of you to share so much of your experience. I am sure it will help others and I certainly have learnt from what you said here. I’m sorry that your own accident was not treated more urgent or seriously, I hope this comes right and that you make a full recovery.

    • July 11, 2015 11:51 pm

      Thanks so much, Sandie, and thanks for reading it. We can’t go back, and I will never be quite the same – but I am enormously fortunate to be as well recovered as I am. Many others are not so lucky. It’s for them and their families that we need to share experiences like this and raise the profile of Headway and other sources of help.

Trackbacks

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