In this post I wanted to share with you my journey and relationship with Esme’s Umbrella. It has been a very interesting and supportive experience so far.
Esme’s Umbrella is an organisation that provides safe shelter for anyone suffering with Charles Bonnet Syndrome, their friends, family and colleagues. The campaign was set up in memory of Judith Potts mother. Esme (her mother) developed glaucoma in her later years which resulted in Charles Bonnet Syndrome. Judith like many other family members knew nothing of her mums suffering until it got to much for Esme and she shared what she was seeing with her. Judith was intrigued and didn’t think it was a mental health condition because despite her age Esme was in good health and completed the Telegraphs, cryptic crossword every day. So she went on a mission to get answers. She did not find many answers and the optometrists were less help. She found buried in articles a small piece about Charles Bonnet Syndrome and from that and her mums passing Esme’s Umbrella was born. Judith did not want anyone else to go through what she and her mother experienced, well to as much of her ability as possible. She starting writing about CBS in her health writings for the Independent and found Professor Dominic Ffitch the sole global expert in CBS., With him she started the campaigning and research into the condition, providing patient support days and speaking where she could to create awareness.
This is where I came across Judith and what a find.. Like Judith with her mum I went into full research mode when I came around from the shock of losing my sight. The research was not for living with sight loss but ‘What is Happening to me’. I started to see colours and shapes straight after losing my sight. I was convinced that they saved some of the vision. Having being unsympathetically told there was no sight saved and what ever I was seeing was just my mind playing tricks on me. As you can imagine this was not helpful at all and it quite frankly made my blood boil!
As someone who has spent her life in and out of eye hospitals, seeing several specialist ophthalmologists, it was disappointing to feel like they had just washed their hands of me because there was nothing they could no longer do. I was not getting answers from the NHS so I started researching and I was shocked to see that there was nothing much of use on the internet either. That was until I came across an article for CBS and an interview with Judith. This then led me to her website and I emailed her with the hope that she would be able to give me answers.
That she did and so much more! Judith invited me to her patient support day in York, I think only her second that far. I was blown away with the information shared, the compassion for what I was going through and the support from peers. I not only got to hear the science behind CBS, why it happens and what it is. I got to speak with people who have the condition and hear their experiences in real time. This gave me so much peace of mind, having confirmation that you are not going crazy and you are not alone was the most powerful thing Judith could have ever given to me and that I will be eternally grateful for.
With all this new found information and fire in my belly I wanted to help. I wanted to create awareness and share my story in the hope that it will help others going through the condition. I wanted to help those closest to people suffering as I know what it was like for my family and loved ones. Having no answers for them and them for me was turmoil and I didn’t want anymore families going through the same. This I had in common with Judith I think. I wanted to help with this, any way I could.
Going forward I offered myself as a case study as such. If Judith had someone approach her and wanted someone with he condition to talk to them, she called on me. From there we have developed a great relationship and continue to move forward growing with Esme’s Umbrella.
Esme’s Umbrella have been an amazing resource and saved me from the brink of depression and isolation. I am now honoured to be a special friend of Esme’s Umbrella and volunteer in my spare time to help her bring the support and information to those who desperately need it, allowing them to feel less alone. I look forward to lots of exciting new things to come, like their brand new website which is now fully accessible and the next online patient support day. I am helping with these projects and I also now facilitate the Esme’s friends network making sure all the group leaders stay in touch in order to share their tips, findings and share important updates about the work Esme’s Umbrella is doing so they can share it with their group members.
I have learnt so far on this journey that communication is so important. Should that be through a person suffering with CBS talking to their family or an Esme’s friends group. Then there is also communication through organisations and specialists because if there had been more of this then that doctor that day may have been able to give me answers and be more compassionate, making my shock and transition a little easier.
If you want to help create awareness either with your colleagues, local GP’s or family members who may know of someone with Charles Bonnet Syndrome then please do check out Esme’s Umbrella’s website. As I said it has recently been re designed and is now fully accessible with lots more information and resources on there. If you want to work with myself or Judith you can get in touch through the website or email me at Nina.firstname.lastname@example.org
There are lessons in life every day and opportunities to communicate with your neighbour allowing information to be passed on. That information no matter how small can change a persons life. So why not help me, help others and share this far and wide to help us get the word about Charles Bonnet Syndrome out there so no one else has to suffer alone. I know Judith would really appreciate it too.
Sending love always