For me 2020 wasn’t just about holding it together, but rebuilding myself bit by bit.
Last year was hard for everyone, but when the country went into lockdown last spring I was already well-accustomed to a life between four walls.
Eight months before I had been in a bike accident in Germany and sustained a minor traumatic brain injury (MBTI). Cycling back from work one evening in Munich I dodged a row of taxis spilling over the curb. I don’t remember what happened next, but I came around face down on the cobbles minus a tooth.
I found myself in the casualty ward at a local hospital. Long after midnight, doctors told me I had a minor concussion at worst and I left with a leaflet on head injuries. A few weeks later I was back at work, but one afternoon I suddenly realised I couldn’t read the words in front of me. From nowhere my vision became a series of revolving lights, and anything with a screen immediately left me dazed.
I got the first train back to Scotland, where I usually live and teach. My GP told me that I’d probably be okay again in a few weeks. I wasn’t, but a second GP told me much the same thing. Then my condition really began to worsen; words disappeared, intense headaches made it impossible to think, and moving objects left me nauseous. The attacks followed a consistent pattern; first came a metallic taste in my mouth, followed by a cracking sensation in my upper spine, a throbbing pain behind my eyes, slurred speech and loss of balance.
No magic fix
The NHS didn’t know what to do with me. I was told that I would have to wait six months for a referral to a neurologist. I ended up paying for a private appointment to at least get a diagnosis. It was only then that I found out I had post-concussion syndrome (PCS).
PCS is the name given to a range of symptoms that look like concussion but persist long afterwards, sometimes for weeks—but, as in my case, months and years too. It is a form of post-traumatic stress response in which the brain struggles to make sense of what has happened and misprocesses information.
Beyond the physical discomfort, like many sufferers I found it hard to control my emotions and became prone to bouts of acute dread. One day when swimming I burst into tears for no discernible reason, tears streaming down my cheeks with no idea why. My understanding of tone and register started to disappear too, and interactions with other people became a tightrope.
There is no magic fix for PCS, but rather a trial and error approach to medication to see how the body responds. Every day I take four pills before bed to dial down my nervous system and rest as much as I can, which has helped me to live and work relatively normally.
A crisis of long-term care
We often think of illnesses as temporary ailments that can be swiftly solved with medication. My experience with PCS shows that the reality is far more complicated. PCS, for example, is worsened by stress and mental strain. In an ideal world there would be a social care system well-resourced enough to pay for time off work and rehabilitation, but that is not the reality in the UK today. My neurologist recommended that I temporarily stop working if at all possible, but statutory sick pay in the UK is only £95.85 a week, beyond which universal credit awaits. Compare that to Sweden, where a serious injury would allow someone to collect 80 per cent of their wages for up to a year from public health insurance. And PCS also creates knock-on effects of its own. No longer able to work, I sought counselling not only for my physical symptoms but also to cope with seeing my career disintegrate in slow motion.
The complex effects of trauma on the brain are still relatively poorly understood. Often, even detailed MRI scans will show nothing wrong. This accounts for patients being told they are fine after trips to A&E, only to have symptoms flare up later on. Others I know with similar injuries have had winding journeys from diagnosis to recovery, in part because PCS diagnosis depends on understanding both neurological and so-called psychosocial factors. From car crashes to rugby injuries, their path back to health was long and often full of setbacks. Sufferers reported improvement from yoga, psychotherapy, and even physiotherapy, along with rest, all of which require time and deep pockets.
The long-term implications of head trauma are only just beginning to receive public attention. The former Tottenham defender Jan Vertonghen recently revealed he had suffered from an undiagnosed brain injury for nine months after a head clash, experiencing frequent bouts of dizziness and headaches. There are legal cases pending against both the FA and RFU from former pros over long-term neurological impairment; recently, the rugby player James Graham called for “brain MOT” in the rugby league.
Path to recovery
In my own experience with PCS, there have been times when I thought I would never write again, maybe never even think in the same way. Coming back has been a long process of remembering who I was and trying to rebuild it bit by bit. Stuck between the walls of my flat, I surrounded myself with books and music, creating a world of infinite space and depth to recover in.
Outside my four walls, many others suffering from brain trauma and cognitive problems are forced to turn to charities—such as the brain injury association Headway—for support. But the more we understand about the link between brain trauma and mental health, the greater the argument becomes for long-term recovery support—as well as infrastructure that can truly support patients.
