Tag: Mencap

Zoë at Mencap 2016 to 2021

~ jeanrareselfacceptance ~ Leave a comment

June 30th 2022

Zoë was so proud of her job as a Support Worker at Mencap, helping men and women with learning disabilities and empowering them to lead independent lives. This picture shows that even through Lockdown, when not only were the people she looked after shielding from COVID, she was as well, and although she couldn’t go in and be with ‘Callum’, the man she supported, she phoned him every Tuesday and Saturday afternoon to keep in touch. Here she is ready to make her call.

She was very keen to encourage all the people in the house to develop their independence, and do as much as they could unaided. One driving force behind this was the example set by her schoolfriend, Helen, who suffered from Cerebral Palsy, to achieve as much as she could, and of course, Zoë’s own determination to live her life as fully as possible.

In a letter to Mencap to explain why she couldn’t attend her second interview because of her lung collapsing, she wrote:

‘Paying attention to how the nurses work with the patients has inspired me even more to help others develop their independence.‘

She was offered the job, giving her a ‘small glow of happiness inside‘, and then returned to Guy’s to have a planned pleurodesis to stick her lung to her chest wall to prevent it collapsing again. But, due to complications, she was in hospital for most of May, and on writing to Mencap again, they offered put her application on hold without affecting her employment.

Zoë’ wrote: ‘Considering I had that horrible trial shift at that café back in March, the situation now couldn’t have been more different. I felt supported and respected; that my ill health was being taken seriously and Mencap were being patient enough to wait for me to fully recover before they were happy for me to start work.‘

This shows how supportive Mencap were, not only to their clients, but also to their staff, giving Zoë the opportunity to get that job and be proud of herself as a member of the working world.

As she said, ‘The experience has helped me become more accepting of people with TS, who may have learning disabilities too.’  And it helped her to reach that self-acceptance that she was striving so hard to find.

1'

One Year Since the Publication of RARE

~ jeanrareselfacceptance ~ Leave a comment

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.