“A Demon on My Life”: review of an online play about living with ME (myalgic encephalomyelitis)

Note: the disease myalgic encephalomyelitis (ME) is often referred to – inaccurately and confusingly – as chronic fatigue syndrome (CFS) or ME/CFS or CFS/ME. It is likely that there are many crossed misdiagnoses of both illnesses.

ME has been well documented since an outbreak in Los Angeles, California, in 1934 but, shockingly, is still often perceived as a “controversial” illness which was only “discovered” in the 1980’s. For more information follow this link. 

I have lived with ME in varying degrees of severity for nearly forty years. For more information see About.

“The Nightmare” by John Henry Fuseli – 1781. Inspiration for the concept of “A Demon on My Life”

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JB Bruno is a long  established film director and writer. In 2019, he decided to return to theatre work. A friend of his had lived with ME for many years. Mr Bruno began to research this disease and its background and realised that this was a story that needed telling.  As a result, he wrote and directed the stage play “A Demon on my Life“.

The play was adapted for online viewing and livestreamed via Zoom, free of charge, on 20 and 22 June 2020. The second performance was recorded and is available on YouTube here.  The full cast list, credits and other details are in the information beneath the video.

The storyline

Liz (played by Leigh Fitzjames) is a professional dancer in her thirties. She lives in New York with her husband, dancer/choreographer Mark (Darren Lee). Liz has lived with ME for some years already and now learns that the illness has reached a stage where it is unlikely that it will ever improve.

Liz and Mark are trying to make sense of the life-changing effects of the illness whilst also learning to navigate the challenges of the caregiver/caretaker relationship.  Their partnership, which began as one of equality, now feels very out of balance, especially to Liz. They have learnt that they must deal with an illness which doctors frequently misdiagnose and the world mostly misunderstands – including even close friends and family members.

Liz and her friend, Katie (Emmy James), communicate regularly via Skype. Katie also has ME and is even more severely affected than Liz. Katie’s story becomes an integral part of the plot and reflects some of the more extreme aspects of living with ME and it is she who identifies the “Demon on My Life” as a metaphor for the illness.

The play is interspersed with powerful dream sequences, filmed in black and white. They are haunting and reflect the sense of unreality which is often experienced by those who live with serious chronic illness.

Review

The presentation of this play presented an unusually complex logistical challenge. The actors were playing their roles from seven different cities in three different countries and from multiple time zones. However, as I wrote in an email to Leigh Fitzjames after I had watched it for the first time:

Obviously, there were some digital glitches but it was an amazing technical achievement to bring a stage play to screen from so many different locations and still retain both its message and its heart.  

In his introduction to the video, JB Bruno highlights the range of practical and social issues raised by COVID-19. He also considers how some of them reflect the isolation and other psychological challenges with which ME patients are all too familiar and from which, unlike the healthy population, they are unlikely to be released as and when the pandemic begins to subside.

The play explores themes which will be familiar to most ME patients – the stigma and disbelief surrounding the illness, the desperate search for treatment no matter how expensive or outrageous, the Herculean effort required to attend a social occasion and the payback afterwards, the crass comments of old friends and new acquaintances, the devastating consequences of the “push/crash” syndrome – and, inevitably, grief and loss. As the play moves into the third and final act, it embraces a darker theme, one which touches on our deepest fears and reveals the painful realities of living with this disease.

The more philosophical themes are addressed by way of dialogues between Liz and Mark and their mentor, Bonnie (Blanche Baker). It’s a somewhat contrived device but achieves the desired result of airing the less tangible aspects of life with ME, such as the ambiguous roles of hope and acceptance in living the best life possible. It’s a little confused and clumsy but it’s an honest attempt to initiate a vital discussion of painful issues and unanswerable questions.

The ending is, inevitably, unsatisfactory – which is as it should be. JB Bruno has resisted any temptation to provide resolution or closure, understanding that, in this context, such an imposition of order from chaos would be wholly unrealistic.

The final words of the play are spoken by Liz. Throughout the performance, Leigh Fitzjames’ portrayal of Liz is perfectly-pitched, beautiful and heartbreaking. The entire cast was superb throughout this extraordinary performance but it is fitting that the last word should emanate from Liz as the central protagonist in this nightmare existence.

Liz’s final utterance, “I can’t disappear“, is threefold. It is a simple statement of fact. It is also a cry of desperation from the depths of a shattered soul. However, above all, it is a rallying cry, an exhortation for the ME community to reject the cloak of invisibility invested by the illness and to continue to work towards changing its trajectory whilst living the best lives that we can.

Will this play change the course of that trajectory? Probably not – and it would be unrealistic to expect as much. Can it be used to explore the central issues affecting the lives of the millions who live with this illness 24/7 and stimulate debate and understanding both inside and outside the community? Yes, if used with discretion, it probably can.

Will you agree with everything in the play? Probably not: I certainly didn’t – but, for these purposes, that is irrelevant. First watch it, if you haven’t already, and decide how best you can make use of this unique contribution to the lives of the “Millions Missing“.

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Structure of the play: pace it to watch it

The play is about 1 hour 45 minutes long. It is divided into three acts of just over 30 minutes each in length. This makes it reasonably easy to watch in manageable chunks which is helpful for ME patients who may have difficulty with concentration and memory. I watched it twice, each time over several days. Splitting it up like this worked fairly well although it is still a huge challenge for the more severely-affected.

The technical challenge of this online performance was considerable. Inevitably, internet connections keep dropping, sound disappears, voices get out of sync and those unfamiliar with Zoom may find the shifting appearance of images on the screen slightly disconcerting. I can only say persist with it. Yes, some of the dialogue gets lost but the overarching narrative and emotions are still sufficiently powerful to justify the effort involved.

The second performance was followed by a one-hour discussion with the cast and led by JB Bruno. It also features a Q&A with Dr Courtney Craig, herself a long-term ME patient, and others who were involved in the production of the play. I was flagging by this stage and the sound quality was poor but it’s worth pursuing if you can.

Watch the online performance and subsequent discussion from this YouTube link.

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FUNDING AND FUTURE PLANS: from the original press release

The production aims to do a theatrical run in New York City when theaters are open again. At that time, the company also want to have the funds to livestream select performances to a ME/CFS audience that would not be able to make a trip to a theater.

10% of all proceeds will go to an Solve ME/CFS Initiative, an advocacy group for research, treatment and awareness.They and other advocacy groups will be sharing the link so that people with ME/CFS can join at no charge.

All performers will be paid a stipend out of monies raised as well.

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