Hope Shines Through
A contribution by Joanne Kaye
The new UK Health Minister, Ashley Dalton MP, has recently indicated that there are currently no plans to allocate additional funding for the long-awaited ME/CFS final delivery plan, nor to establish a centre of excellence for care and research for post viral or infection associated conditions. Unsurprisingly, these words have dealt a sharp blow to many with Myalgic Encephalomyelitis and their families, and strongly suggest that the impact and extent of suffering, especially by the most severely affected, have not been acknowledged.
Despite the numerous disappointments and decades of neglect and oppression, many people with ME in the UK, their carers and allies across the globe choose to hold onto hope as the ultimate act of resistance, not least as we call on Wes Streeting and Ashley Dalton to be #ThereForME and to #FundThePlan.
Please support the #FundThePlan campaign organised by #ThereForME however you are able, whether you are a person with ME, a carer or an ally.
As we prepare to launch an international art project ‘One Red Leaf at a Time’, members of The Red Leaf Creative Collaborative have been sharing some red leaf interpretations inspired by The Red Tree and ME. Here, Joanne shares her delicate and thoughtful piece along with a timely reminder that our hope is ‘for better understanding, funding for research, treatments and a cure’. Let hope shine through!
Joanne writes:
I remember ‘Grace’ (not her real name) being born. The much-anticipated arrival of a first child, first grandchild, first niece, was obviously a wonderful time for all involved.
I was recently reminded that I was the first person to babysit Grace. These milestones are all part of the checklist of family life – ‘first times’, which can be both nerve-wracking and awe-inspiring moments. Reflecting on this, I cannot imagine how difficult it must be to watch your child lose so many of their other ‘firsts’, as Grace and other Myalgic Encephalomyelitis (ME) sufferers have.
Despite the many frustrations, challenges and obstacles posed by ME, and all of the ‘firsts’ that may have been lost, hope can bind us together: Hope for better understanding, funding for research, treatments and a cure, hope for a future and hope for more firsts for Grace and for others with ME.
Despite barrages of misunderstandings, misinformation and medical gas-lighting, the messages of hope and solidarity from the scientists, clinicians and advocates who have contributed to this project can reignite hope – hope that there will still be ‘firsts’ for Grace, those who love her and for many others. With the support of dedicated medical professionals, funding for research and health services that are #ThereForME, hope can still shine through.
I am from a textiles background and chose to create a red maple leaf using thread and water-soluble fabric. The result is a delicate, yet surprisingly strong, skeletal leaf structure following the washing away of the water-soluble fabric. I then punched holes through the paper mount with the word ‘hope’, allowing light to shine through. My response is my interpretation of Grace and her family’s journey with ME. The strong delicacy of the leaf’s structure represents Grace, and her strength and determination to fight each day. The interlocking web of the leaf’s veins represent the connections within the ME community that she and her family have built. The background of stark white paper represents the blockade of medical gaslighting which so many ME sufferers face, pinpricked with the small, but tangible, lights of hope.
Let hope shine through
That was really beautiful reading. I'm glad it was the first email I read this morning. Tender, thoughtful and sensitive, all wrapped in hope. Thank you.