In August 2018 I was cycling with friends when a car pulled out in front of me. I hit it head first, sustaining a traumatic brain injury. In that moment my life changed, and the person I thought I was disappeared to be replaced this stranger who was easily confused, fatigued and cognitively overwhelmed.
To my family, friends and colleagues I still looked the same and for a long time I tried desperately hard to be the “old me” again, no matter how much that caused me pain. I wanted to do the things I used to do, and join in with my friends in the same way. I loved my job as a senior researcher working with others across the UK, along with being a keen cyclist competing in races across Europe, with a diverse and active social life. After my accident I tried to carry on working and to still be part of my previous social cycling groups, which was often agonising and overwhelming. But if I didn’t try to join in, I would feel left out and alone, watching others network, cycle and socialise as easily as I used to do. No-one could see the pain in my brain - it felt like there was an invisible impenetrable glass wall separating me from friends, and in trying to join in I would hit my head on it again and again.
Then along came Covid-19, galloping over the horizon like a viral version of an invading army.
It hit me at the worst possible time. I had just temporarily stopped work due to the effects of my brain injury, and my much loved disabled brother had recently died unexpectedly at an early age. Grief, loss, fear, and cognitive fatigue all combined and psychologically brought me to my knees. Instead of being able to draw on close in-person support from family and friends during this emotionally critical time, Covid drove a barrier of physical isolation between us all. The mantra of “anyone can catch it, anyone can spread it” meant that physically reaching out to loved ones became both a health risk and a moral crime.
However in those desolate days, other support networks started to grow - I connected with my neighbours, had daily phone calls with family, and my pro-active friends created new ways of connecting online. To my surprise, in many ways I was now able to join in with social activities again. The limitations of my brain, with its inability to cope with background noise and busy places, was no longer a problem when it came to “zooming from the sofa”. Long solo walks in the hills and beside the sea replaced busy cities, and I grew to have a deep connection with nature and the wonderful world that surrounded me.
When restrictions eased slightly, and social contact extended to include meeting people individually only outside, I discovered a new “TBI and Covid-compatible” life of “walks and talks” with close friends. These have become a much valued benefit from Covid, and I now wouldn’t swap these more personal in-depth conversations for light-touch chats in busy big groups.
For me, Covid has been a double-edged sword. It has been psychologically devastating to be so physically isolated whilst simultaneously coping with the loss of much loved family, adjusting to the implications of my brain injury, and struggling to manage my work. But Covid also stopped everyone’s world and in doing so it has allowed me some space and time to find my own approach to socialising again in a way that is compatible with my brain injury. Some of my friends have drifted away, but others have become closer and valued more than I can say.
As lockdown eases once again, and many friends are going out to socialise in groups, I would like to ask everyone to not forget this time. Remember how it felt during Covid lockdowns to be alone, not able to see your family or friends, to feel isolated and on your own. For those of us with a brain injury, social isolation will continue in many ways after Covid restrictions end, so please reach out and stay in touch.
Look around you and notice who is left out of larger social occasions and make time to still meet up with them in person at a quieter time. My top tip - see the value in the “quality not quantity” of family and friends.
Sue will be speaking at Headway's Coping with brain injury during Covid-19: Benefits and challenges conference in September 2021. Contact Ffion on Ffion.Jones@headway.org.uk for more details.
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