A demon on one’s life.
What a ripe metaphor for chronic fatigue syndrome (ME/CFS). A demon – a kind of slippery, malevolent, unearthly being – difficult to get one’s hands on. Difficult even to see… On one’s life. Not around one’s life but on it, pushing it, like the force of gravity, down.
And keeping the main character of the play, a dancer, from taking flight, from reaching heights, that perched up on her toes, few humans could ever imagine reaching … Being that athletic, that graceful, that strong. And now all that is disappearing.
It’s a Broadway play about ME/CFS. I asked the director, JB Bruno, how he came to create a play on ME/CFS. He reported that after years of producing films, in 2019, he decided to go back to his first love – the theater.
After directing a couple of plays that required some significant editing, he felt it was time to pick up his pen and write an original work. A friend from many years ago, who was dealing with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), piqued his interest.
“I started researching and watching documentaries. Three things struck me most about the disease that made it different from others: it was very much misunderstood, it was often misdiagnosed, and compared to other diseases, it was significantly under-funded. All this for a disease whose origins are still disputed today and that right now has no cure in sight. ”
“This was clearly the story I needed to tell. “
But how to tell it? His mind drifted to dancing. He’d spent a lot of time with dancers and knew how intimately they knew their bodies, how much they relied on them, how much they enjoyed them.
How wrenching to have such a special relationship with your body taken away – and not by something understandable – but by something mysterious and unexplainable. How much harder would that be? How much more difficult to explain to your peers? How much harder for them to understand, to empathize? How much more of a fall it would be?
What better vehicle, he thought, to explore the wrenching struggles associated with this disease.
Plus, as a bi-lateral amputee below-knee, he was also interested in exploring the caregiver relationship. “How do you provide”, he asked, “for a lover whose illness has no cure and for whom trying to get better only makes it worse?”
It took him a year of research and writing, including a staged reading in front of a live audience in January of 2020, to get to where we are now – a live online performance via Zoom on the 20th and 22nd.
JB noted how appropriate an online performance is “as for many with ME, the internet is their main, and sometimes only, connection to the outside world.”
The title of the play, “A Demon on My Life”, was inspired by a dramatic 1781 painting by Henry Fuseli called “The Nightmare.” The image recalls a kind of sleep paralysis that a character in the play has, but more so it’s about this mysterious demon hovering over and challenging two dancers, a husband and a wife, one of whom has ME/CFS.
“For us it’s a Demon on our life. They’re sitting on our whole life, not letting us get up, not letting us move, not letting us breathe free. Our lives are pressed down, and we can’t move from where we are.”
The actors are top tier. Darren Lee has been acting, directing and choreographing works on Broadway for 18 years. He’s worked in some of the biggest productions including Chicago, Guys and Dolls, Miss Saigon and Victor/Victoria (with Julie Andrew).
Blanche Baker won an Emmy Award for Best Supporting Actress for her work in the television mini-series Holocaust. She’s originated several roles including, as a 24 year old, Edward Albee’s adaptation of Lolita, and Shelby in Steel Magnolias. She’s played roles in dozens of TV shows and movies.
Leigh Fitzjames, a producer/writer/actor/singer plays the lead role – a dancer coming to grips with the fact that her fibromyalgia/chronic fatigue syndrome will no longer allow her to do what she’s been able to do. Knowing this is a difficult subject to get right, she stated: “we have done our best to research CFS stories and facts thoroughly”.
You’re invited to see a live online production of “A Demon on My Life”:
- Saturday, June 20th @ 6pm EDT
- Monday, June 22nd @ 4pm EDT
Use form at this link to RSVP – and get your free online ticket.
The company plans to do a theatrical run in New York when the theaters open again. At that time, they hope to have the funds to do another livestream performance for people with ME/CFS.
Donations to support the further production of the play are welcome. 10% of all donations will go to support the work of the Solve ME/CFS Initiative.
What? A stage play about CFS/ME? Fabulous! I’m in.
Woweeee! Fantastic. Can’t wait to see it!
Awww, just worked out the time zones to Australia and my schedule….does not work for me!?
Sorry you will not be able to watch live – but it will be recorded for future viewing!
Can this be taped for those who can’t see it as it is being performed. Giving others an opportunity to a glimpse of my world. Wow. Judy
It is being taped and will be available on Youtube.
Oh I have them same problem in Australia. What a pity.
This is fantastic news. Can’t wait to see it.
Yes, me too, I live in Australia…..fantastic to get recognition through the theatre.
This is Fantastic….our voices can be heard through this great production. AMEN !!
This is JB Bruno, the writer and director. We will have a YouTube link for those who are not available for these performances. No worries. You will get to see it in your own time.
Thankyou so much JB Bruno, so much appreciated, and shows you understand.
Thank you so much! I have two you g adult children with this wretched thing. We’re in Australia too so would love to catch up with this.
JB, gratitude for your artistic efforts. I will ask my primary physician to see it. Judy
Thank you. Sounds wonderful – look forward to seeing it, Jane
Fantastic! Many thanks from New Zealand!
Thank you. I am signed up to watch Saturday, but usually am not able to watch things for more than 30 minutes at a time and fully comprehend.
JB ~ How and where will I be able to find the You Tube link? Will it be available right after the online play? I have a doctors appt Monday and I know I will be crashing that night and the week following. I must stay completely quiet, dark and in bed Sat and Sun too be able to even make this doctors appointment. Being in the ‘severe’ ME group means that I have few times when I am physically and cognitively strong enough to watch or read anything. Will I be able to give this YouTube info to members of my family so they might watch this and give a contribution for this play?
I especially want to thank you for bringing this horrible illness to the light for many to see and learn, and for including the impact it has on relationships and the caregivers! My husband is my sole caregiver, and has been for my 22 years with ME.
I would ask that question as well, Katherine, how will we find the Youtbe
link? Also, like you, I have reached the 22 years mark, and understand
everything you have said.
Thank you so much for writing and directing this play and for putting it on You Tube, for those of us that didn’t get to view it! It is so appreciated!!
Thank you so much for doing this. Do you have an idea when it will be on YouTube?
Thank you, Mr. Bruno, for turning your talents on this misunderstood and
debilitating illness. Any light that’s shed on what we go through in our lives,
including ME/CFS effect on our relationships, is very welcome. Thanks again,
and eager to see your work!
This is amazing and so exciting. Thank you soo much for creating a beautiful expression of what it is like to live with ME/CFS. I love the name, it truly is a demon that steals our entire lives and slithers away with them. I can’t hardly wait to see this!
Am all signed up!
Yayyyyy! Love the arts and dance!
Thank you for being a voice for all of us suffers!
This is awesome…can’t wait to see it!
Eagerly awaiting the opportunity to see in Australian time zone too! Bravo ! Wonderful way to share our plight.
I often say, ME is like a beast sleeping with one eye open… waiting to put its paw down hard.
This is wonderful. Thank you x
I knew a dancer with CFS. Her final piece for her studies was a lying down dance that she choreographed herself.
That brings tears to my eyes!
This is exciting news!! I am signed up!! I feel this has the potential to inform the general public about this illness. I hope it wins a Tony!!
What wonderful news! Between this artistic creation and the Covid/CFS connection we won’t be known as the invisible disease much longer!
Signed up and donated! I’m very much looking forward to seeing this production.
I’m signed up and really looking forward to Monday ?
I found an interesting interview that JB Bruno did recently, with Dr Courtney Craig on Spoonie Radio.
I particularly liked his emphasis on trying to portray those characters with ME, as real people and not poor victims to feel sorry for or on the other hand, courageous heroes to admire…
Apparently he explores the attitudes of the medical profession, which is one of my personal nightmare scenarios.
To be seen and heard by another, I feel, is an absolute delight – it can open up all sorts of possibilities, release emotions, free up expression.
But to be blocked from simply talking about my experience – and I am acutely aware of when someone is unable/unwilling to listen to me – is for me deeply frustrating and demeaning. It’s something I avoid, if possible.
Cort – I think 10% of the money from the online performance is going to #MEAction and not Solve ME – maybe I’m wrong…
Anyway, thanks for bringing this online play to our attention. When I saw your blog early this morning, I thought Oh yeah, yeah, that’s great! – a play’s being put on in New York or somewhere and maybe it’ll turn up on TV or Netflix and I can watch it next year ? – and then I saw it would be online, affordable and I could watch it on Monday! ?
Cort’s right -10% is going to Solve ME/CFS Initiative
Just watched the Table Read and can’t wait to see it on Saturday,
Registered and donated,
I have Severe ME ()bedridden/housebound), Thank you so much for the play and raising awareness of Myalgic Encephalomyelitis
Just went to the App Store to download Zoom. I see there are 11 different ‘Zooms’ to select from. Which one do I choose?
Katherine, what device are you wanting to download Zoom on to? Can you Google your question? I had a look and there are Zoom downloads for Android and iPhones.
Unless you receive better information, I would Google it and see what comes up… ?
Google had me download one of the zoom apps for my iPhone 10. It looks like it’s an app only for meetings?? I’m not sure what to do. My husband is 70 and won’t mess with apps. I’m so upset I can’t watch the play
Hi Katherine, did you manage to see the play? I’m so sorry I didn’t see your reply until now.
JB Bruno said he would put it on YouTube for people who are unable to watch it, at the time it was shown live. So you should be able to see it.
Okay, so just watched. I won’t spoil it, but I will say……they tell our stories. They tell what we face and how life really IS! It’s a play about awareness. And they have shown many facets of our lives and what and how it affects us. We need our “purple bandaids”. Let’s HOPE and DREAM and also be PRESENT!
THANKS for a true to life representation to all in the play, the writer and those who inspired him!
Wow. What a play. This is a serious and thoughtful effort to protray ME/CFS – and so well acted. I don’t know how people get up on stage and do what these people do night after night. Very impressive!
Anyone happen to know the running length of this production? Really looking forward to seeing it Monday, and hoping my energy will last to see it all.. (but, if not, so grateful that it’ll be on youtube.)
I think its about an hour and a half with a short intermission.
Thank you, Cort! Very helpful.
Watching the play was such a validating and thought provoking experience.
I find there is a stark contrast between my own intricate efforts to navigate and survive my day and others perception of me.
I am generally trying to calm down and continually struggle with the necessity to relax and rest. Whilst I feel surrounded (and sometimes hounded) by family, friends/neighbours who strongly believe I need to be energised, get going, do more…
It’s a dream come true, to have people actually SEE and understand what we go through just to survive!
Thank you JB, and Cort. This will definitely get the word out about a “silent” disease that we are living.
I’m so sorry I missed it! I just saw the email today, 4 days late. Is there any way I can view it? I’ve had CFS for over 30 years. Thanks!
Kathy, JB Bruno said that he would provide a link to You Tube, when they put it online. Maybe you can ask for that link too?
Emailing them might be an idea. If you click on the link at the end of Cort’s blog – at this link to RSVP – under the times and dates for performances you can find their email address.
Here is the play on YouTube…
That’s brilliant Susan
Thank you all for being a part of this production, and your kind words. I cannot tell you how much the cast and creative team was moved by your comments in chat and your emails to us. Please keep those coming.
Thank you Cort for helping us spread the word!
Here is the YouTube link. We have taken out the intermission. This is from the June 22nd performance, and has the Q&A with Dr. Courtney Craig and Robie Robitaille at the end.
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