When Hidden Red Leaves Catch the Light: Illuminating the unseen and giving voice to the unheard

By Jo Greer, Sue Greenwood and Anita Wregor

‘Autumn Burn’ by A.Wregor

The Red Tree and ME project continues to evolve, and it has been deeply encouraging to see how people who have connected with the lived experience narratives and artwork have responded. Many have been inspired to create and contribute their own art, donate to the ME/CFS research led by Professor Chris Ponting at The University of Edinburgh, share information about the project online, or reach out with words of encouragement about how the project has resonated with them.

The recent installation at Chester Cathedral marked an important step in the project’s development as it brought the messages of hope into a public, historic space where visitors could engage with them directly. I understand it attracted a wide range of people and generated meaningful conversations about ME and the need for continued research and awareness. Huge thanks again to the small but incredibly dedicated team of creatives who made this happen and special thanks to Chester Cathedral for providing this opportunity.

‘Wonderful things are passing you by’ from ‘The Red Tree’ by Shaun Tan, (used with kind permission)

The ‘Wonderful things are passing you by’ image in Shaun Tan’s The Red Tree cuts in with a clarity and poignance that sting before landing heavy. The tiny figure who sees without being seen, rooted to the spot while colour, possibility, and life sweep past, captures something many people with ME, and often their carers too, know far too well: the ache of watching the world pass you by, the grief of desperately wanting to move forward but being held in place by an illness that refuses to let go.

The start of another new year without a cure or treatments for ME can bring a fresh wave of pain for many living with this illness. Christmas and New Year often amplify what is already hard, stirring up fresh challenges while magnifying the old ones. It’s a time when many feel especially unseen and unheard, their struggles quiet, private, and easily overlooked in the busyness of the season.

Holding onto hope

‘Holding Onto Hope’ by Lou and Al Macdonald

Carers also often feel unseen and unnoticed, carrying and holding onto so much -not least love and hope. Sue cares for a loved one with very severe ME and has kindly shared her poem with The Red Tree and ME. Sue’s poem speaks to this experience of being unseen. Huge thanks to Sue for sharing this very raw and moving piece.

Unseen

by Sue Greenwood

This is my life, that you do not see,

Why? I am asking do you not see me,

Years have gone by and I am still here,

But no one,but my carer is anywhere near,

Over the last decade my condition has got worse,

But where is the help? No NHS, no treatment, no specialist, no cure and no nurse,

My life is held in a motion so still,

My disease cannot be treated, or cured by a pill,

Little money for research, is ever given,

Years of government failure for recognition remain hidden,

For it seems that those who have the power do not care,

If they did, they surely would make the world more aware,

Instead, it falls on those who speak up for the affected,

To fight for the thousands of ignored and neglected,

For the desperation and suffering of those with ME,

Is something, it seems, the world does not want to see,

But let me tell you, it is real and by us it is seen,

Like a battle that you could only imagine in your worst dream,

By people like us, who care all night and all day,

Whose love and dedication will never go away,

For caring for someone that no one else sees,

Is just like a dandelion that disappears in the breeze,

Because gone are the lives, that we both loved and once had,

Replaced by a suffering, so terribly sad,

We wait for the day that the world comes around,

For the hope of a treatment to release us from our lives with no sound,

The disbelievers they couldn’t survive one day as we do for years,

It would, I know, make them drown in an ocean of tears,

To not ever, see the light, or dawn of the day,

For the constant loss of not knowing your way,

To not be able to swallow your food,

The continued question of maybe it’s your mood?

To lie flat on your back for years on end,

For the pain of touch, too severe to allow loved ones to tend,

For the sound of the birds to be too much,

For the thoughts of my past to be as such,

For years have gone since the memories of our last walk,

And for the conversations and loving to talk,

For I fear I am sinking into a pit of despair,

Along with my loved one, who I fear may be beyond repair,

I feel I no longer have the strength for the fight,

For gone are the offers of any respite,

But I’m not done yet, and neither are you,

For together forever, we will see this thing through.

Autumn Burn

‘Autumn Burn’ by A.Wregor

The stunning piece, Autumn Burn, kindly shared by Anita was painted long ago, and almost forgotten. Its re emergence now feels like its own kind of red leaf: a tiny glimmer of hope, a reminder that even what has been hidden can still offer warmth, beauty, and connection when brought back into the light.

Anita writes “I am very happy to share my painting for encouragement to as many possible. The title of the painting is ‘Autumn Burn’ - a little bit of double meaning as the word Burn here in Scotland is the name of a wee stream too.

The inspiration I got some thirty years ago being amongst the Highlands with its Glens and Bens is still there and I love to paint views from the West Highland Coast but unfortunately my health has lessened the ableness now.

My love for painting is still there and I feel the urge to put paint on canvas again growing inside again - this now being inspired by sharing Autumn Burn with you all. My heartfelt thanks.”

Thank you so much, Anita, for sharing your beautiful work.

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The One Red Leaf at a Time International Art Project is still collecting pieces for the virtual exhibition later this year. If you, or anyone you know, would like to contribute a creative expression on the theme of ‘One Red Leaf at a Time’, to support the aims of this project, please register your interest. If you are unable to access the form (e.g. if you do not have a Google account) please send an email to jo(at)theredtreeandme.com and we will send you the details for submitting your artwork.