May 20th 2022
Since Zoë’s book was published last May, it’s been well received and read all around the world and has really helped people find out more about TSC and how Zoë lived her life with it.
She always wanted to share her experiences and wrote several articles for the TSA Scan Magazine, and also a piece for the TSA 40th anniversary event at The Oxford Belfry in September 2017 which is shown above and a bit clearer here, below.
Zoë wrote about the difficulty of living with TSC when on the outside she appeared quite normal with a degree and a job, whilst inside, she was worried that society would try ‘to pick out something wrong with me’, like her imperfect complexion. She likened it to having a ‘double life’: the independent one of work and socialising, and the traumatic one of having TSC and clinic appointments. She said it felt horrible to to recognise that ‘I may not always be normal’, but she was grateful for all the medical support that she received.
However, she could see that this ‘double life’ meant that she could use all her skills and knowledge from both areas of her life and combine them into ‘something great’ in her work with Mencap. And she was so happy that they didn’t know there was anything wrong with her, she was ‘just Zoë, their support worker and key worker’.
Always optimist, she said that although TSC and LAM had resulted in some ‘tumultuous experiences’ for her, ‘many good things have come out of it’.
One of these things was the knowledge and experience that enabled her to sit down and write her book. The sad thing is that she never lived to see it published, although we edited it together and she chose the cover photos. I wish she could have seen it and held it in her hands. She would have been so very proud.
Rare: A Journey of Self Acceptance by Zoë Bull 