'The Red Tree' and M.E. - One leaf at a time

Images used with kind permission from Shaun Tan

As an educational psychologist working with children in care in the UK, I often used therapeutic stories in my practice. I especially loved The Red Tree by Shaun Tan, with some of my most effective casework being inspired by this gently powerful story.

In recent years, The Red Tree has become a profoundly personal narrative. Following COVID Pneumonia in September 2021, my teenage daughter (previously fit and well) became very unwell. Now bedbound and tube-fed in a darkened room, she is currently in the estimated 25% of people with Myalgic Encephalomyelitis who are categorised as ‘Severe’ or ‘Very Severe’ according to the International Consensus Criteria.

Viewing The Red Tree through the lens of a teenager whose life has been upended for three years due to Severe ME is poignant.

“sometimes the day begins with nothing to look forward to”

“and things go from bad to worse”

Albeit unintentionally, Shaun Tan’s artwork is an exquisitely crafted reflection of the lived experience of many with this illness and offers more than a glimpse into the world of many with ME. Feeling trapped, dealing with uncertainty, unpredictability, misunderstanding, and indifference are part of this strange world that no-one wants to inhabit.

Like many with this illness, my daughter is acutely aware that wonderful things are indeed passing her by and is frustrated by the delay for treatments and a cure.

“wonderful things are passing you by”

Despite the circumstances and with breathtaking grace, she is determined to hold onto genuine hope and has zero tolerance of toxic positivity. She has a rare gift of being able to find humour and hope in the most unlikely places. Amidst the disconcertingly dark imagery in The Red Tree, the recurring motif of the red leaf offers peace and assurance as it speaks to hope. My daughter is thankful for the red leaves in her life including: increasing awareness of ME, professionals who are starting to understand and trying to help, any glimmer of properly funded biomedical research and family and friends who ‘get it’. She is mindful that there are many people with ME who are less fortunate.

As a carer of someone with Severe ME, The Red Tree provides me with a helpful conceptual and therapeutic framework. I find deeper meanings every time I contemplate the captivating images. When my daughter first became ill, it felt like we had somehow inadvertently exited the train at the wrong station and were sudden reluctant arrivals on a strange and hostile planet where the rules had all changed and we did not speak the language. If only we could find our way back, speak to the right person, make sense of what had just happened. Weeks ran into months and now months into years. We can see you through a virtual window, but you don’t really see us.

Being unheard and misunderstood by professionals who for too long created additional obstacles and stubbornly relied on what they thought they knew, while we searched for sense and reason, all while my daughter was deteriorating was beyond distressing.

Trying to navigate ‘deaf machine’ systems, insurmountable barriers and weighty resistance while trying to prevent further decline caused me to identify strongly with the lost girl under the glare of the spotlight, in front of a packed faceless audience, unsure of the script, the routine, the next step, who she is meant to be or even where she is.

“or who you are meant to be”

And then there is the interminable, torturous waiting, false hope, broken promises where ‘Sometimes you wait and wait and wait and wait and wait and wait and wait but nothing ever happens.’

It would be so easy to be consumed by the darkness, overwhelmed by the isolation, silenced by the misunderstanding of others and disillusioned by the disappointments. However, in the midst of the chaos and confusion, we choose, as a small but significant act of resistance, to keep focused on looking for the ‘red leaves’. The tiny red leaf on each page of The Red Tree is often easily missed, where you least expect it to be but it is always there as a silent protest to the indifference and systemic neglect.

So, while waiting for the tree to blossom, we count the fragile, yet promising, red leaves – the small victories and glimmers of hope that can make the world of difference: biomedical research, meaningful advocacy, greater awareness, solidarity and kindness.

I reached out to Shaun Tan to request his permission to use some of his images for this piece. Not only did he kindly grant permission but also sent a red leaf in the form of solidarity and kindness:

“I do hope that she improves, one leaf at a time, and you are both able to find the clear understanding and support that every loving person needs during such a journey.”

This would also be my best wish for people with ME and their carers for 2025. Strength for today, hope for tomorrow – one leaf at a time.

“just as you imagined it would be”

Dr Jo Greer

Parent and Carer of teenage daughter with Severe ME

Educational Psychologist

Images used with kind permission from Shaun Tan.

Tan, S. (2001). The Red Tree. Hachette Australia. ISBN 978-0734411372.