Life After Brain Injury: A Personal Story

By Catherine Jessop  

I walk into a small, dimly lit room in St Paul’s Church Hall Hammersmith with a great deal of trepidation. My husband Alan is lying seriously ill in Charing Cross Hospital, following a week of violent seizures and then a diagnosis of auto-immune encephalitis; a rare brain inflammation that a month ago I had never even heard of. My children and I have all been capsized into a bewildering world and I am still in shock.

​Penny, the West London Headway representative has reached out to me in the hospital, and suggested I come along to this meeting for some support. A circle of sympathetic faces gaze back at me, and as I start to describe what has happened to us, I can feel tears rolling down my face. Everyone is incredibly kind, and overwhelmingly sympathetic. Just sharing my story is enormously helpful and seeing that there are many other people who have also experienced a traumatic brain injury, means that I feel much less isolated and alone. That first Headway meeting was back in 2017, and after 11 months, Alan was well enough to come home from hospital, so we could go to meetings together. However, the brain injury he has been left with means that he has no short-term memory (as well as many other processing difficulties) so he never remembers attending the groups! But I find the collective support as well as the information we gain, to be massively beneficial.

Coping with the colossal changes that Alan’s brain injury brought to our family taught me something new almost every day. There was plenty of help out there, but it often took quite a bit of searching to find it! I have brought everything I have learned together in a book which I’m excited to say is published this August! Pulling Through: Help for Families Navigating Life-Changing Illness clarifies the many issues that occur in hospital, such as communicating effectively with doctors and how to understand complex medical jargon, as well as confusing tests and scans. It also takes you through the practical issues of learning to live with illness, accessing benefits, respite care and other support. And, perhaps most importantly, it illuminates many of the emotional issues around illness – looking after your mental health and leading a full and meaningful life despite the many challenges.

Five key things I have learnt about life after brain injury are:

• Believe that you can thrive rather than just survive and that things will get better. You may not be able to change what has happened to you, but you can change how you feel about it.
• Connect. Give people the chance to be nice. You do not have a sign on you saying ‘fragile, handle with care’ but my experience has been that if you open up to people about how you are feeling, they are only too happy to be kind.
• Get outside as much as possible. Walking, fresh air and spending time in nature are all proven to improve mood and health – whatever the cause of your illness or injury.
• Do not spend hours on Google “researching” what has happened to you. It is likely to make you feel worse not better. Get your information from a more carefully curated source such as the Headway or Encephalitis Society websites.
• Be proactive. Find something to do that is unconnected with your brain injury. Whether it is baking, litter-picking, gardening, drawing, joining a gym, volunteer group or choir – doing anything at all, however small, will empower you to feel less like a victim and help you take back control of your life.

My book is available to pre-order from Amazon  or Waterstones and I’m planning to come along in person to a Headway meeting later in the year to talk more about it. I really hope that my family’s experiences will help others to live with brain injuries and other serious illnesses. I do believe that with the help of other people and organisations like Headway, you CAN pull through this, and live your best life.
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Professor Tom Solomon, who has just been awarded a CBE for Services to Neurological Research, said of Pulling Through, “Although I have met thousands of patients, I learnt a lot from this compelling narrative, about fear, hope, survival, endurance and above all, love.”