Follow us: hu Improving life after brain injury Need to talk? 0808 800 2244 Donate Home About brain injury Individuals Brain injury and me Clare Hull Share your story Share your story with us to help others affected by brain injury Clare Hull I got a standing ovation Clare Hull wowed delegates at this year’s annual conference, The Way Ahead, with her performance of her poem - ‘Welcome to my world’. After contracting encephalitis in 2017, Clare began attending Headway Gwynedd. It was her local group that encouraged her to attend the conference and perform at Headway’s Got Talent. Clare said: “I have no ‘stage’ talents so decided to write a poem about my life as it is now.” The poem had a big impact on both judges and audience alike and earned her 1st prize in the competition. Clare recalls: “I was amazed at the impact it had on the audience and indeed I got a standing ovation. “Numerous delegates came up to me after I had read the poem out and told me how much life was so similar for them and thanked me for putting into words how they felt. “One of the judges personally thanked me for writing the poem. Notably I did manage to make a large number of people cry, which was certainly not my intention. In turn I cried as I really appreciated that the audience had truly understood where I was coming from - this was, and is, important to me. Family and friends with the best of intentions often do not fully understand how brain injury survivors feel and it was a complete delight to me to have delegates come up to me to tell me how much my words reflected their own lives and how they understood what I had written. Welcome to my world My world – a confusing place where thoughts and moments blend into one and disappear in the living of life. My world – where close loved ones try, but do not understand. Often the words are released from my mouth but have no order and are frequently lost in the confusion of my mind. My world – the moments are precious, where I must say what I am thinking and feeling in such a short space of time – else they are forgotten and lost forever. My world – I am no longer reliable and not by choice. This hurts. I will say I am not reliable and for those who love me I am met with pitying eyes and am spoken to as a mother to a child. This hurts. I am not a child. Yet I know they mean well and love me – yet it still hurts. My world - where I criticize myself and strive to do better – but it doesn’t happen. I try and try and try – so much effort with minimal success and minimal reward. My world – my children nurture and care for me as I did them, so many years ago – I DO NOT WANT THIS. I am too young. I am not yet an aged person – the roles for me are not yet ready to be reversed. My world – moments of happiness and sadness are forgotten. My recollection is minimal and I am denied the ability to reflect as I have done my whole life. I miss the joy of reflection. My world- my state of being is subtle and difficult to have others understand. I look well and at times sound well. The crisis and often confusion in my brain is invisible yet it is very real to me. It is painful. My world – Mostly my pain and distress is in the moment and occurs every day of my life. From all of this there is one joy and bonus. I forget! I forget how I felt ten minutes ago – my distress, anger at myself and confusion is buried – lost in the deepest recesses of my mind. Or is it truly lost and not even buried deep? My thoughts are floating in the universe perhaps? My world – today, now and in this moment I have peace. There is no effort in this. It just is as it is. Who knows what the next half hour will bring? No worries for me right now as I know I will forget. I strive to live in the moment where I find peace. Back to stories index In your area Find brain injury support in your area by searching our directory of local Headway groups and branches, specialist solicitors, approved care providers and charity shops. Find out more Friends of Headway Individual membership Join/Renew Contact Us t: 0115 924 0800 e: enquiries@headway.org.uk Help us improve life after brain injury. Donate Improving life after brain injury 0808 800 2244 Call our free helpline 9am - 5pm, Monday to Friday. 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