An ex-professional ballet dancer is using his art to raise awareness of a chronic disease. It’s one that affects around 17 million people worldwide, including him.
The Millions Missing
Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or ME, is a chronic systemic neuroimmune disease. But the disease has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or ultimately told it’s ‘all in their heads’.
- Increase funding for research.
- Carry out more clinical trials.
- Provide better medical education.
- Increase public awareness in relation to ME.
As #MEAction says:
ME affects… million[s] around the world, yet this disease remains invisible and people are missing from their own lives.
Sri Lankan born and Dutch bred ex-ballet dancer Anil van der Zee has been supporting this campaign. After a viral infection ended his career in 2007, van der Zee was later diagnosed with ME. But even though the disease has left him incapacitated for much of the time, he’s now using his love of art to raise awareness of ME. So, The Canary caught up with van der Zee, to discuss the millions of missing people, ME, and how one disease changed his life forever.
A debilitating disease
From a young age, van der Zee used art, especially martial arts and dance, to express himself. He told The Canary that he “always had energy spare”, and was constantly improvising and choreographing dances in his head. Eventually van der Zee turned this passion into a career, becoming a professional ballet dancer.
But ME ended all that. Initially, van der Zee was able to ‘still do his thing a bit’. But for the past five years he has been essentially bed ridden. He told The Canary:
Dance has been my outlet, my therapy. When I got ill I found some solace in teaching two and a half hours a week. Once I worsened again I had switched to outdoor photography and when that became too heavy and I became housebound I turned to studio photography. I can’t do any of these things anymore. I try to write but that’s really not my forte.
ME is a debilitating disease. While symptoms vary for every person, people living with it often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance/problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
van der Zee says ME has impacted him heavily:
I’m someone who tries to accept adversity as quickly as possible. As a dancer I was prepared that I might break my leg in an unfortunate way so maybe never being able to dance again. So when I became ill I tried to accept it as quickly as possible and look for ways to ‘fix’ it or move on. Sadly the fixing didn’t happen… The last five years since it has become more severe. It’s now a grieving process. I’m only upright for about 15 to 20 minutes a day and I spend my days in darkened rooms: earplugs, no social interaction, no music, no videos. Reading and writing is intense. A lonely existence of course.
But he refuses to let ME beat him down. This is why he’s launched his #Art2CureME campaign. It’s a diverse collection of photography, written and spoken word, dance, art and music.
The campaign hasn’t been an easy process for van der Zee, particularly as he’s included in the collection. I am still here is a compilation of his own work as a dancer, before he became ill. Set to music from the soundtrack to Jennifer Brea’s film about ME, Unrest, it’s a haunting piece of work; more so when you know van der Zee’s story.
I am still here is conflicting. On the one hand, it feels like a visual epitaph to someone who has died. But on the other, you know it’s not only a celebration of a person’s achievements, but also a reminder that despite the disease, they are still the same person they used to be:
van der Zee told The Canary:
‘I am still here’ is quite emotional for me to see. Movement used to be something enjoyable but as any over exertion can make me more ill movement has become my Achilles heel. I have to prepare every trip to the toilet or kitchen carefully not to become worse for the next couple of days. On good days that goes well: on bad ones I have to hold the wall and shuffle myself forward because I feel so out of it. It’s quite a surreal experience where I try not to remind myself of what I once was.
Watching myself in the video was of course painful. I blocked that part of myself out of my daily routine. I’m too ill to have time to think about it, it would drive me mad really. On the other hand it was amazing to feel that enjoyment again. It felt like it was yesterday really. It reminded me that this active dancer – he’s still here.
The power of art
Art has the power to deliver strong, emotional messages, and this is what drives van der Zee’s #Art2CureME campaign. He believes art can “convey emotions or tell a story that normally wouldn’t reach a person”. The beautifully shot and directed Unrest by Brea is one example of this. Another is the reimagining of the Bob Dylan standard Blowin’ in the Wind by Robert Saunders. Taking people’s talents and turning them into a force for change is a crucial element of Millions Missing. As van der Zee told The Canary, his #Art2CureME campaign is:
A great way to demonstrate the contrast between the lives of the 17 million patients worldwide suffering with a severe energy deficiency versus the lives of artists dancing, singing or pursuing any of their desires without having to worry about the dire post exertional malaise crash that we ME patients are always suffering from. A grand gesture made by them by expending their energy on this project in order for us to hopefully regain ours at some point again.
We are still here
I am still here encapsulates the essence of the Millions Missing. ME grabs people and kidnaps them from the lives they used to know, from society, and often from their loved ones. But even though the disease is holding them against their will, they are still the same person they were before ME snatched them away from themselves.
As van der Zee points out, the art-like iconography involved in the Millions Missing campaign is a powerful statement:
He told The Canary:
The empty shoes with a little note attached to them one after the other it almost feels a bit like a graveyard from the lives that once were.
But Millions Missing is about more than just the people. It also aims to highlight the ‘millions’ missing in research into the disease. Progress on treatment for ME is painfully slow; not least because of flawed studies into the disease like the notorious PACE trial. But van der Zee is hopeful that a breakthrough will come soon:
In the meantime I can only hope that patients can at least get better treatments and basic care to help improve their quality of life. Right now these aspects of this disease are sorely lacking. I think the only way to achieve this is by us patients and allies to try to keep pushing to tell the right story about this disease. The internet has given this community of the Millions Missing a voice and our efforts to change the narrative is slowly being heard.
Time for unrest
Breakthroughs can’t come soon enough. ME is one of the most debilitating, yet under-recognised, diseases there is. As I wrote previously, people living with the disease have effectively been given a death sentence from those who should be supporting them. But no more. It’s now ‘time for unrest‘. van der Zee recognises this, telling The Canary:
My greatest hope is that even if I won’t get to see a cure in my life time that our efforts today will have paved the way for the next generations to not have to deal with this disease, the abuse and neglect that sadly comes accompanied with it.
I’ll be damned to see another few generations of promising dancers, artists, athletes etc. being wasted merely because of politics. It needs to stop. My hope is that patients and allies will have the strength to keep telling the truth about this disease until we need to do no more. We are making progress. We are getting there. Please hold on.
His message will ring true in the ears of at least 17 million people worldwide, their families, and their loved ones. The ‘millions missing’ are slowly but surely being found.
– Find out more about the Millions Missing campaign.
– Read The Canary‘s analysis of the PACE trial.
Featured image via van der Zee and additional images via van der Zee