‘I have a hunch I was left damaged’: what would a scan reveal about my brain? | Encephalitis
I’ve had doubts about the old grey matter for a long time. Fifty one years to be exact. And now, at the age of 60, those doubts are increasing. When I was a young boy, my brain took a beating. I had been an A1 swot until then – loved school, was a quick learner, and was super independent. At the age of nine, I was racing around the neighbourhood on my bike delivering messages and cakes for my mum. I was fearless. Nothing fazed me. Bury Old Road in Salford was my Route 66 – I’d fly down it on my Chopper, wind in my hair, embracing the freedom.
Then one day I woke up with a burning headache, high temperature, and an aversion to light and noise (actually pretty much all sound). I lived much of the next two years in darkness. I felt as if my head had caved in, that I was detached from my body, and regressed to a little boy who just wanted to play with baby toys. It was the best part of a year before I was diagnosed with encephalitis – inflammation of the brain – a relatively rare but dangerous condition. One in 10 people are still estimated to die from it, and back then misdiagnosis was common.
My head was opened and a biopsy was taken of my brain that showed I had encephalitis. At the time I was told by the doctors that they were going to have “a little look inside”. I guess if they’d told me they were going to cut a little bit of brain out it might have put me off. Having said that, given how I was feeling at the time, I might well have begged them to chop out the whole lot.
When I eventually returned to a regular school three years later, I was regarded as a bit of a miracle child in medical circles. The experts didn’t know how I’d had encephalitis for so long without popping my clogs. They labelled it “low-grade” chronic viral encephalitis because if it had been anything more I couldn’t have survived over that period of time. But it couldn’t have felt less low-grade.
My brain made a good recovery, but I came out of it a very different person. This isn’t uncommon. I’ve been an ambassador of the Encephalitis Society for many years, and everybody I’ve spoken to who’s had it says the same thing. They have had two lives, before enceph and after. Encephalitis tends to change you socially, intellectually, emotionally and physically. Many people come out of it not being able to live independently. Hearing, memory, speech and language problems, balance and coordination are some of the areas that can be affected. Other common consequences are epilepsy and depression.
I’m one of the lucky ones. I went on to live a full life. And when you’re so lucky, it’s tempting to say there have been no long-term effects. But that isn’t true. After encephalitis, I had terrible headaches for decades, and have had lifelong depression.
Unsurprisingly, my brain had never been examined before encephalitis. But, amazingly, it has never been examined since.
Magnetic resonance imaging was first used in a clinical setting in August 1980 at Aberdeen Royal Infirmary – seven years after I returned to school. It transformed neurology, allowing a much clearer and more precise picture of the grey and white matter that makes up our brain. If I contracted encephalitis now, I’d have MRIs galore to monitor how my encephalitis was progressing and long-term effects. But in the 1970s, they just drilled a hole, poked around, extracted a bit of cerebral gunge. If they discovered viral encephalitis, they crossed their fingers and hoped for the best.
I have a hunch that certain areas of my brain were left damaged. Post-encephalitis, that sense of direction I’d been so proud of as a young boy was kaput, and I was rubbish at finding my way. I’d also become spectacularly bad at following coordination instructions, and mirroring physical actions. It was more complicated than just having bad coordination, though. I could teach myself to do loads of kick ups with a football and was world-class at diving like a goalkeeper to catch peanuts in my mouth, but I couldn’t replicate a dance move.
There’s another thing I think my brain lost after encephalitis – my sense of the past and the future. Not only can I remember very little from life before the illness, but I can also remember very little from my past full stop. As for the future, I just don’t have a sense of it, and never have since enceph – no dreams, no fears. I count this as a blessing. It stops me worrying about stuff that I probably can’t do much about anyway. It’s not that I don’t worry; I do intensely – in the present. But not being haunted by your past or petrified by the future makes life a lot easier.
For years, I have discussed having an MRI scan with Prof Tom Solomon, a prominent neurologist who is president of the Encephalitis Society, to see what state my brain is actually in and whether my theories about my brain reflect the reality. We’ve never got round to it, but recently my headaches have been getting worse and I’ve developed a facial tic underneath my eye, which feels as if my left cheek has decided to turn itself into a hugely distracting stopclock. My GP refers me to Solomon at Liverpool’s Walton Centre, the UK’s only specialist NHS foundation trust dedicated to neurosciences.
As I wait for the referral, I do an audit on what I do to keep my head healthy. I’ve never been great at looking after myself, and that goes for the brain too. I’ve been on antidepressants for almost 30 years. A couple of years ago I went on more sophisticated ones after a crack-up following a long physical illness. They give me shocking nightmares, but it is worth paying that price for the relatively calm days they’re allowing me to have. After my recent illness, I’ve started running again. That has always helped my brain – the natural serotonin buzz is wonderful. I’m thinking about what I eat these days – more fish than in the past, even oily fish like mackerel on a good day. It is an improvement on the half dozen Creme Eggs, masses of chicken tikka masala and 20 Bensons that made up my diet in the old days. I also drink less alcohol than before.
One thing that I think does keep my brain healthy is my work. As a journalist you are constantly learning new things; becoming an instant expert in something you may not have heard about a week before. Even if I’m blagging, learning enough about economics to challenge the governor of the Bank of England, or the environment to not appear a total dunderhead to Greta Thunberg, must nourish the neurons.
My referral comes through at the Walton just as my twitch is getting worse. I know it can be a sign of a brain tumour. Because the MRI is in the present rather than weeks away, I start to actively worry.
Solomon asks me a series of questions about my lifestyle. What time do I go to bed? Often around 2am, I say. He tells me that is ridiculous. Coffee? Loads of it, and sometimes just before bedtime. Coffee can cause you to twitch, he says. Exercise? Tick. Smoking? I gave up ages ago. Tick. Alcohol and diet? Half a tick each.
Wearing a gown I lie on a motorised bed, which slides into the white scanning tunnel. Despite earplugs to stifle the sound of the scanner, the noise is astonishing – a symphony of beeps, chirps, chugs, clicks and knocks that the master of cacophonous composing Karlheinz Stockhausen would have been proud to call his own. But there is something strangely meditative about it all. Although the noise is horrible, I come out feeling pleasantly stoned, like I’ve just had a quality head rub.
And now for the moment of truth. I’m curious about whether the encephalitis has left its mark on my brain and worried about what the facial twitch might mean. Solomon and consultant neuroradiologist Maneesh Bhojak are flicking through multiple images of my brain, talking about grey matter (good), white matter (good), and bright white areas (maybe not so good). Depending on the way they slice it, my brain resembles a prowling lion, a heavyweight boxer and a screaming ghost.
“I can see tiny spots of damage,” says Bhojak.
Solomon looks closely. “You’d see those spots in most people your age,” he tells me.
“I can’t see any obvious damage,” Bhojak says. Then he stops. “Ah. You’ve never had a head injury before?” he asks. I shake my head. “An accident?” Another shake. “This could be part of your parietal lobe that was damaged as part of your encephalitis.” He shows me a white blob.
“I’m pleased, because to be honest I thought there’d be a lot more damage,” says Solomon. “For a patient who’s had encephalitis this isn’t a bad scan at all.”
Solomon points at the blob. “That is where we think they went in with the needle and took away a bit of your brain to look at it. So that’s filled in with fluid because there’s no brain tissue there.”
I feel weirdly emotional. There’s my biopsy, my past. The proof that shut the sceptics up. And you can still see it 50 years on.
And the twitch? They zoom in on the area that controls my left cheek. There’s nothing to worry about. Phew.
Solomon shows me a scan on the internet of somebody whose memory has been seriously impaired by encephalitis. “That’s the medial temporal lobe where memory is kept. That’s all whittled away because they lost so many neurons.” There is nothing indicating memory loss on my scan. “You probably did lose neurons when you were unwell. Luckily, you didn’t lose so many neurons that it left you with no short-term memory.” “The brain has an extraordinary ability to remould itself, especially when you’re young,” Bhojak says.
I ask if it’s possible for an MRI to reflect my theory about having little sense of the past and the future, but an intense sense of the present. No, says Bhojak, it basically shows what’s working and what isn’t. “People think MRI scanning is fancy, but it’s not,” says Solomon. “It’s a pretty crude tool still. In a patient with a lot of damage that seriously affects their spatial awareness we might see change. They would have ended up in intensive care. Yours was more chronic and subtle.” Functional MRIs, a recent development, can show us more about how efficiently various functions are working.
Does he think what I’m saying about having little sense of past and future is nonsense? “No. You do get people who are very much like that. And memory difficulties are certainly consistent with encephalitis.”
Solomon and I head off for a drink. My left cheek’s twitching again but I’m not bothered now. “Cut out the caffeine,” Solomon says. “Try stopping for three months. And go to bed earlier.”
I phone my partner to tell her the good news, and pass Solomon over. “There’s nothing to worry about. We finally found it,” he says. “His brain that is. It’s tiny, but almost perfectly formed.” I feel giddy with relief. So relieved that I allow him his joke.