India

What the doctors don't tell you about brain injury
Mary Ann Sieghart (The Times, March 21 2000): used with the kind permission of the author.

Normally when I go on holiday, half my suitcase is taken up with novels I have been dying to read. Last week, instead of Rose Tremain and Vikram Seth, I packed books with titles such as Coping with Mild Traumatic Brain Injury and Brainlash: Maximise your Recovery from Brain Injury. Their effect on my state of mind was as therapeutic as the sun, sand and sleep were on my body. I spent much of the week interrupting my husband's reading with exclamations like "Yes! Listen to this! That's just what I feel!" and, more poignantly, "Why did no-one tell me it would be like this?"

Last week was also, coincidentally, Brain Injury Week in Britain and on the Continent. It is often known as the "hidden disability" because outwardly a brain-injured person seems fine. Other people's awareness of the problem, their sympathy and their empathy are very low compared with afflictions such as cancer or spinal injury. Very few of us (and that included myself, until now) realise how debilitating and persistent the effects are.

I was lucky to sustain only a "mild" head injury, which means that my intellectual abilities have thanfully not been impaired and, eventually, I will be fine. More severe injuries often lead to permanent disability. But still, a year on, I feel exhausted much of the time, I am more sensitive to noise and I sometimes have difficulty in doing two things at once.

I banged my head just over a year ago, falling headfirst off a galloping horse. Even though I wore a helmet, the impact knocked me out. From the moment I arrived at the hospital, unconscious in an ambulance, to now, I have had distressingly inadequate medical treatment.

There is not much that doctors can do to speed recovery from a brain injury, but what has made the past year ten times worse for me, my family and my colleagues is that no-one ever told me how long it would take to get better or how low I would feel in the meantime. As a result, I did too much too soon, made commitments that I found myself unable to keep, had bizarre symptoms that made me wonder if I was going mad, and worried myself sick about whether I would be my old self again.

It all began in the hospital, which had reluctantly agreed to keep me in overnight after I threw up for a fourth time: a sign of severe concussion. I had a skull X-ray, which showed no fracture, but no brain scan. The following morning, feeling very woozy, I asked the nurse what I should do next. He replied, "Well, I shouldn't go to work for a couple of days," and handed me a leaflet telling me to ring my GP if my headaches persisted.

When, after a couple of days in bed at home, I still felt like death, I rang my usually brilliant GP. He just told me to take masses of painkillers and said "Don't underestimate the scale of your injury," which wasn't really much help. When I saw a neurologist on BUPA a couple of weeks later, he conducted an MRI scan which showed evidence of a little bleeding between my brain and my skull. He told me I should feel fine again after three to four months, but that 90% of my recovery would be in the first month. So I naturally assumed I could return gently to work.

How wrong I was. With each day back at my desk I felt more exhausted, a desperate tiredness that made me want to weep. I was used to fighting fatigue, calling on a second, third or fourth wind if necessary. The trouble was, there was no wind left.

I gleaned a little information from the Internet. I found a site called www.headinjury.com and emailed it, asking when my fatigue was likely to lift. The only reply was: "Persistent fatigue is one of the most common complaints after a head injury."

The I found myself poring over accounts of head-bashed celebrities, Sheena McDonald, the TV presenter, still had to take to her bed every afternoon. Rik Mayall, the comedian, could no longer conduct a conversation with the radio on. Nor could I.

Why it took me a year to trawl through amazon.com to find some American books on the subject I really can't explain, except that everything felt like so much effort that I could barely get through a normal day.

But listen to this first-person experience, by a head-injured psychotherapist, from one of the books I had shipped to me: "What used to be second nature becomes an exhausting ordeal. There were mornings when I only had enough energy to either pour cereal into a bowl for breakfast or to eat the cereal in the bowl. But not both." And later: "Normally healthy people have a store of energy to call upon. People who have been brain-injured lose their extra reserve of energy and have nothing to call upon when the normal supply is exhausted. You push and nothing pushes back."

I had assumed until then that all that was required was the exercise of willpower, of which I have plenty. But the energy reserve was gone. I found myself trying to boost my energy levels through more and more desperate measures. To get my column written, I have been known to line up a cup of coffee, a cup of tea, two Solpadeine tablets and a bag of Maltesers. I became addicted to chocolate, which I had barely touched before.

I quote from one of my new bibles: "There is always one tell-tale sign of brain-injured patients -- their constant companion is a diet cola in hand. Your body craves stimulants because your brain is constantly seeking an artificial kick-start. Your brain wants to work and craves activity. But the healing part of the brain needs you to be quiet so that the repairs can proceed in peace."

The hardest thing has been my need to sleep. I thought I would be fine by the time six months had elapsed and I was due to return to work in earnest. But no: within the first week, I realised I would have to find somewhere to catnap. I brought in a campbed and sleeping bag which I have set up in an empty office. I creep there, somewhat furtively, when I have the chance.

It is not possible nor desirable to resist this fatigue for long. I was relieved to see this discovery confirmed: "This chapter discusses the absolute necessity for profound, frequent, and non-negotiable napping. The amount of rest needed to heal the brain is many times more than is necessary for other injuries. Your brain will get you to rest, one way or the other. Co-operation is extremely important." How cheering it was to read that "two good naps a day after a year or two is still within the normal range of need."

I rarely manage two naps a day; I feel lucky when I have fitted in one. But on holiday, I found myself eating breakfast and going back to sleep, eating lunch and going back to sleep?cumulative weariness had taken its toll.

And what about the other symptoms that had so puzzled me? Sensitivity to noise, for instance: "With brain injury, the perceived volume of noise suddenly magnifies tremendously. It goes beyond loud to confusing cacaphony. It gets this way because our filtering system has shut down." Ah, I see.

And the trouble with doing two things at once? "A brain injury reduces brain efficiency, causing us to be able to only do one thing at a time. When more than one thing happens we may become lost or confused, unable to proceed or to prioritise our response." So that's why I felt as if my brain were exploding when both my children talked to me together. That's why I had to turn off the kitchen radio if my husband came in for a chat.

I am still working only three days a week, a year on. But even this, apparently, is normal. "It is entirely likely that you will not be able to work at all, at first. Over time you may be able to return for half-days, part-time, flexitime and even full-time. Depending on your recovery rate, this process could take three months or three years." A Royal College of Surgeons report, published last year, found that only 45% of patients who had sustained a minor head injury had made a good recovery a year later.

I am still working on the assumption that, sooner or later, I shall regain my old energy levels and be back to full time work. But I remain shocked by how little any of us knows about this problem and how little attention doctors pay to it. I am one of the million people a year who attend hospital with a head injury, yet I knew nothing about it until now. Nor do the many GPs who have had no training in the consequences of brain injury.

If this article raises awareness, then that is a good thing. In the meantime, all I can say is: fasten your seatbelt, wear a cycling helmet, protect your head: it's much more fragile than you think.


	the fragile brain

	What the doctors don't tell you about brain injury Mary Ann Sieghart (The Times, March 21 2000): used with the kind permission of the author. Normally when I go on holiday, half my suitcase is taken up with novels I have been dying to read. Last week, instead of Rose Tremain and Vikram Seth, I packed books with titles such as Coping with Mild Traumatic Brain Injury and Brainlash: Maximise your Recovery from Brain Injury. Their effect on my state of mind was as therapeutic as the sun, sand and sleep were on my body. I spent much of the week interrupting my husband's reading with exclamations like "Yes! Listen to this! That's just what I feel!" and, more poignantly, "Why did no-one tell me it would be like this?" Last week was also, coincidentally, Brain Injury Week in Britain and on the Continent. It is often known as the "hidden disability" because outwardly a brain-injured person seems fine. Other people's awareness of the problem, their sympathy and their empathy are very low compared with afflictions such as cancer or spinal injury. Very few of us (and that included myself, until now) realise how debilitating and persistent the effects are. I was lucky to sustain only a "mild" head injury, which means that my intellectual abilities have thanfully not been impaired and, eventually, I will be fine. More severe injuries often lead to permanent disability. But still, a year on, I feel exhausted much of the time, I am more sensitive to noise and I sometimes have difficulty in doing two things at once. I banged my head just over a year ago, falling headfirst off a galloping horse. Even though I wore a helmet, the impact knocked me out. From the moment I arrived at the hospital, unconscious in an ambulance, to now, I have had distressingly inadequate medical treatment. There is not much that doctors can do to speed recovery from a brain injury, but what has made the past year ten times worse for me, my family and my colleagues is that no-one ever told me how long it would take to get better or how low I would feel in the meantime. As a result, I did too much too soon, made commitments that I found myself unable to keep, had bizarre symptoms that made me wonder if I was going mad, and worried myself sick about whether I would be my old self again. It all began in the hospital, which had reluctantly agreed to keep me in overnight after I threw up for a fourth time: a sign of severe concussion. I had a skull X-ray, which showed no fracture, but no brain scan. The following morning, feeling very woozy, I asked the nurse what I should do next. He replied, "Well, I shouldn't go to work for a couple of days," and handed me a leaflet telling me to ring my GP if my headaches persisted. When, after a couple of days in bed at home, I still felt like death, I rang my usually brilliant GP. He just told me to take masses of painkillers and said "Don't underestimate the scale of your injury," which wasn't really much help. When I saw a neurologist on BUPA a couple of weeks later, he conducted an MRI scan which showed evidence of a little bleeding between my brain and my skull. He told me I should feel fine again after three to four months, but that 90% of my recovery would be in the first month. So I naturally assumed I could return gently to work. How wrong I was. With each day back at my desk I felt more exhausted, a desperate tiredness that made me want to weep. I was used to fighting fatigue, calling on a second, third or fourth wind if necessary. The trouble was, there was no wind left. I gleaned a little information from the Internet. I found a site called www.headinjury.com and emailed it, asking when my fatigue was likely to lift. The only reply was: "Persistent fatigue is one of the most common complaints after a head injury." The I found myself poring over accounts of head-bashed celebrities, Sheena McDonald, the TV presenter, still had to take to her bed every afternoon. Rik Mayall, the comedian, could no longer conduct a conversation with the radio on. Nor could I. Why it took me a year to trawl through amazon.com to find some American books on the subject I really can't explain, except that everything felt like so much effort that I could barely get through a normal day. But listen to this first-person experience, by a head-injured psychotherapist, from one of the books I had shipped to me: "What used to be second nature becomes an exhausting ordeal. There were mornings when I only had enough energy to either pour cereal into a bowl for breakfast or to eat the cereal in the bowl. But not both." And later: "Normally healthy people have a store of energy to call upon. People who have been brain-injured lose their extra reserve of energy and have nothing to call upon when the normal supply is exhausted. You push and nothing pushes back." I had assumed until then that all that was required was the exercise of willpower, of which I have plenty. But the energy reserve was gone. I found myself trying to boost my energy levels through more and more desperate measures. To get my column written, I have been known to line up a cup of coffee, a cup of tea, two Solpadeine tablets and a bag of Maltesers. I became addicted to chocolate, which I had barely touched before. I quote from one of my new bibles: "There is always one tell-tale sign of brain-injured patients -- their constant companion is a diet cola in hand. Your body craves stimulants because your brain is constantly seeking an artificial kick-start. Your brain wants to work and craves activity. But the healing part of the brain needs you to be quiet so that the repairs can proceed in peace." The hardest thing has been my need to sleep. I thought I would be fine by the time six months had elapsed and I was due to return to work in earnest. But no: within the first week, I realised I would have to find somewhere to catnap. I brought in a campbed and sleeping bag which I have set up in an empty office. I creep there, somewhat furtively, when I have the chance. It is not possible nor desirable to resist this fatigue for long. I was relieved to see this discovery confirmed: "This chapter discusses the absolute necessity for profound, frequent, and non-negotiable napping. The amount of rest needed to heal the brain is many times more than is necessary for other injuries. Your brain will get you to rest, one way or the other. Co-operation is extremely important." How cheering it was to read that "two good naps a day after a year or two is still within the normal range of need." I rarely manage two naps a day; I feel lucky when I have fitted in one. But on holiday, I found myself eating breakfast and going back to sleep, eating lunch and going back to sleep?cumulative weariness had taken its toll. And what about the other symptoms that had so puzzled me? Sensitivity to noise, for instance: "With brain injury, the perceived volume of noise suddenly magnifies tremendously. It goes beyond loud to confusing cacaphony. It gets this way because our filtering system has shut down." Ah, I see. And the trouble with doing two things at once? "A brain injury reduces brain efficiency, causing us to be able to only do one thing at a time. When more than one thing happens we may become lost or confused, unable to proceed or to prioritise our response." So that's why I felt as if my brain were exploding when both my children talked to me together. That's why I had to turn off the kitchen radio if my husband came in for a chat. I am still working only three days a week, a year on. But even this, apparently, is normal. "It is entirely likely that you will not be able to work at all, at first. Over time you may be able to return for half-days, part-time, flexitime and even full-time. Depending on your recovery rate, this process could take three months or three years." A Royal College of Surgeons report, published last year, found that only 45% of patients who had sustained a minor head injury had made a good recovery a year later. I am still working on the assumption that, sooner or later, I shall regain my old energy levels and be back to full time work. But I remain shocked by how little any of us knows about this problem and how little attention doctors pay to it. I am one of the million people a year who attend hospital with a head injury, yet I knew nothing about it until now. Nor do the many GPs who have had no training in the consequences of brain injury. If this article raises awareness, then that is a good thing. In the meantime, all I can say is: fasten your seatbelt, wear a cycling helmet, protect your head: it's much more fragile than you think.