I am a survivor, not a victim. This is one of the statements I have tried to focus upon. Through the darkest to the funniest experiences of adapting into this different, evolving version of myself even now almost three years on. Some days I have to tell myself these words on what feels painfully like a minute by minute basis. Other days it is hour by hour. Not one day Passes without me having forced myself to reflect, ‘ I am a survivor not a victim’. Reflection does not come easily to me now, yet inside there is a part of the old me that wants to reach out to the’ now version ‘ of myself to encourage me to reflect and also find ways however small, to hang on tight to life.
On reflection, I am a survivor and a victim at the same time. The brain bleed has resulted in brain injury. Having survived procedures and surgery, endless investigations and tests, the phenomenal neuroscience and ophthalmology teams at the John Radcliffe Hospital and the physio by a neuroscience-specialist continues to support me to adapt to a life where I look unscathed but have medically unrepairable damage to my eyesight and the label of ‘Tureens Syndrome,’ which a very small group of people share with me. The damage in the particular area of my brain has forced me to also deal with short-term memory loss, lack of concentration, fatigue, physical weakness in my left side and my inability to recognise body language and social cues. My language has become a little fruitier too.
For me by far the most challenging aspect of this version of myself is to learn to live with my visual impairment: the loss of the ability to read or have my eyes focus, an inability to have my eyes measure distance and depth correctly. The inability to see anything that is dark in colour whether that be clothing that someone is wearing, a car that is moving towards me along the road a building or the worksurface. It’s been a process of making myself open to the possibility of learning new skills, believing I’m capable of learning technological skills and ways of coping with my visual challenges. Finding myself housebound for the first year because I felt physically weak and scared of every shape in my own home Let alone outside. It has taken my ‘bloody mindedness’. as my Dad calls it, to feel that I am safe in my own home alone; to believe I am safe to leave the house on my own to walk buddy the rescue dog, who came into my life a year after I came out of hospital. In general, to fight tooth and nail to find areas of my life in which I can be as independent as possible. There’s no point denying that frustration continues to be an emotion which still has a negative Impact on me. However, to balance that out, every little step I’ve made for myself outweighs the frustration I live with.
Being offered one day a week placement at Headway Swindon was a pivotal moment in my rehabilitation, a process which still continues, through the sound of the voice of Sarah, my wonderful support person and the activities-offered now in a digital virtual COVID world. I was so desperately close to losing myself completely and giving up on myself when I went in to meet Sonia and discuss if Headway Swindon could support me. My brain injury challenges are dominated by my visual impairment, so I do not fit easily into the boxes that need ticked off on forms. Luckily for me, the lifeline of a place was offered to me and I began to tentatively join the Headway family of support friendship, tears and laughter, compassion and patience of staff, volunteers and clients. It has literally saved me and given me a safe place to cry, to try and express my feelings and gradually tipped the balance away from desperation to tentative optimism that overtime and this will take a long time. I will identify myself not as a survivor, but as a version of myself I am comfortable to be. She is in here and she is blooming into a warrior woman. Who can support others dealing with the challenges of brain injury. A warrior woman whose son and two daughters can recognise more and more of their pre-brain bleed mum. A warrior woman who this leap year asked her partner Jim, to marry her after living together permanently for six years. He said yes! Our family and friends said thank God at last what is taking so long so I am enjoying planning our celebration which will hopefully take place in Glasgow our hometown next summer.
Living in the moment, in the here and now was always something I thought I did. Now I know that this is what I do with my life. With this in mind, I have set myself a challenge to improve my physical stamina whilst raising awareness of homeless in Swindon. The challenge is to walk, run, or cycle …. for me it will be to walk outside a minimum of 1 Mile, building up to 2 miles throughout November: 30 Days-30 Walks. Fatigue comes with a brain injury but I want to keep evolving for myself and also support others. This is what the ‘NOW version’ of myself wants out of life.