Zoë at Mencap 2016 to 2021

30th Jun 202230th Jun 2022 ~ 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.

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Zoë the Photographer

15th Jan 2022 ~ jeanrareselfacceptance ~ Leave a comment

January 2015 Cover Girl!

In the last months of Zoë’s degree in Photography, she realised how much of her work was psychology related. She was beginning to be fascinated by the mind, and explored that in her coursework, images and essays. She couldn’t see herself as a business woman and saw herself more as someone who helped people with their problems. Her problem, though, was telling us! But we have always believed that our children should be encouraged to pursue what they wanted; not to be forced into anything, so she was surprised when we said it was all right not to become a photographer after all.

In 2014, just after her 21st birthday, she wrote her story of living with TS, and sent it in to Share Your Story on the TSA website. She wrote in her diary about how she hoped to use her normality to create a bridge between TS people and non-TS people. ‘I just hope it inspires’.

But the months went by with no response, and she considered becoming a TS volunteer instead. Perhaps she could make use of her photography skills there? Her first assignment was to take photos of all the staff on the TSA Staff Day to use in the TSA Scan Magazine. She wasn’t used to taking photos of new people, but when some said they didn’t usually like having their photos taken either, she realised that they had their insecurities too, and she felt better.

After several months coping with her first lung collapse, she was cheered by being asked to do a telephone interview about her story by Isobel, the TSA magazine editor, who also requested a photo of her for the front of the magazine!

Here it is. Her journey as a TSA Volunteer photographer had begun!

Harriet’s Journey

30th May 202112th Jun 2021 ~ jeanrareselfacceptance ~ Leave a comment

June 2019

‘Hi, I’m Harriet, 26, and I met Zoë through having Lymphangioleiomyomatosis (LAM). To rewind, I was first diagnosed with angiomyolipomas (kidney tumours) when I was 17, with no prior issues with my health. I had no idea what it meant and it was completely terrifying to go through this experience as a teenager. To make things worse, I had to go to the doctors EIGHT times before anyone would refer me for a kidney scan, bearing in mind I was suffering from flank pain and acid reflux. Many doctors told me I was a teenage girl with stress and anxiety, claimed I was gluten intolerant and also blamed it on my periods; one doctor even said ‘I’ll eat my hat if there’s anything wrong with you’. It was an extremely stressful time in my life. After I had the angiomyolipoma diagnosis, I had an embolization in the summer and suffered no more issues for a very long time. Seven years later, I suffered a severe pain in my shoulder and breathlessness, and after being admitted to A & E, I was confirmed to have had a pneumothorax (lung collapse). This required a chest drain with subsequent surgery to prevent the lung from collapsing again. After noticing cysts on the CT scan, doctors believed it was LAM, and referred me to Nottingham, where I was later confirmed to have sporadic LAM.

Thankfully, I was introduced to LAM Action immediately, and only four weeks after my surgery, I went to the LAM conference in Watford in 2019. This is where I met Zoë. Zoë was one of the only women there who had LAM who was also my age. I immediately noticed what a calm and gentle person she was, and I was drawn towards her as I felt comfortable around her. I was very anxious about the things I may have heard on that day, as I hadn’t done any prior research about LAM, even though I was just diagnosed. Even though Zoë also had TSC, we had very similar experiences, being the angiomyolipomas and the pneumothorax in our young adult lives. Zoë made me feel reassured that although we were very unique, being diagnosed with such a rare disease, that it was not all doom and gloom, and we must make the most of what we are able to do.

Before meeting Zoë, I was truly scared that I would not be able to go back to ‘normal’. I was always very sporty and active, and lived life to the full. After the conference and meeting Zoë, my confidence slowly began to build, and my recovery was made a lot easier due to the positive influences I received on that day. Shortly after, the COVID pandemic hit and we were unfortunately unable to resume any LAM meetings, with most of us required to shield. Thanks to Zoë, a young person’s virtual meeting was set up in order to provide support to those with LAM. This meeting was very successful, reminding us that we were not alone in our journey with LAM, and it was so good to hear that we were all there to support each other, with those truly understanding what we’ve all been through. It was so great to hear Zoë was so excited and driven to write her story, and I am looking forward to reading her book. She was always so kind, thoughtful, positive and there are so many more lovely things I could say about her. I was so sad to hear of her sudden passing and it has been hard losing somebody I have shared so much in common with, especially being so extremely rare. I know she will be truly thrilled that her book has been published.

I would say to anybody newly diagnosed with this condition to not believe everything you read online, and try to only look at reliable and recent information. There has been a substantial improvement in the way LAM is managed and understood. I would also encourage everyone to believe in themselves, I truly think keeping positive is so important in the way we deal with things and seek support if you ever need it. I know we have our bad days, our struggles and sometimes things feel so frightening and unbearable. But these days don’t last forever. I have achieved a lot more than I ever thought since I was diagnosed. I stay active, going outdoors and enjoying the fresh air. I also go to the gym and I am training for a 10km Wolf Run (https://thewolfrun.com) this July. Having LAM is scary and daunting, but I can assure you the good days outweigh the bad. Always surround yourself with positive people, and just keep taking a few more steps everyday. We are all in this together, and we must always support each other.

To Zoë,

I am so glad that I had the honour to meet you and to receive your positive influence. You achieved so much in your life despite all the challenges you faced and I can’t wait to read your book. I am so grateful for your contributions to LAM Action and the LAM community.

Harriet