When, at the end of his performance, he stands on top of a five-meter-high pole, and finds it difficult to keep his balance, the audience holds their breath. Just like Jesse herself, but she doesn’t do it voluntarily. We saw him struggle for a long time with oxygen tubes and blood pressure meters, pausing regularly to get some air again.
What if Jesse Huygh, the circus acrobat, has overestimated himself after all? What if this is the last time he does this act? Everything is possible, because we have just spent 45 minutes watching the struggle of this not so old acrobat with oxygen deficiency.
Jesse Huygh has cystic fibrosis (CF) or Cystic Fibrosis, a hereditary lung disease that has no cure, and that makes breathing almost impossible for the patient. His performance ‘A Deux Mètres’ is about it. He mainly plays it in hospitals and care centers.
We speak Tilburg. There he plays his performance, co-produced by Circus Festival Circolo, which starts October 20, in the garden of Het Laar, a nursing home. His audience is made up of seniors who are confined to wheelchairs and walkers, some of them equipped with an oxygen tank just like him.
Rare Mutation
‘They only diagnosed me with Cystic Fibrosis when I was 12’, he says afterwards, as his team packs the mobile podium with the famous ‘Chinese Pole’. “Before then, they just thought I was a little ailing. It was difficult to categorize me because I have a very rare mutation. That took time. Only six people in Europe had been discovered with this mutation. I wasn’t with it general package.’
Were you already involved with circus and acrobatics?
‘Not yet with circus. I have always done a lot of sport, with judo and gymnastics. I only started circus when I was 14.’
Why?
‘Why? Because it’s fun! In high school there was an option to do acrobatics two hours a week after class. Because I have always been very sporty, it was easy for me. I started doing it more and more.’
What did you know about the disease at the time?
‘You take it with you in everything you think. Especially in conversations with concerned parents: “Do you always work in those dusty theaters?” On the one hand, it is very positive, because exercising is healthy, it helps to increase your lung capacity. You get more space in your torso. It’s also a passion that gives me energy and drive to take good care of myself and go for it. On the other hand, I am often in an environment that is not positive for lung patients.’
25 years
The performance is a duet with acrobat Rocio Garrote and contains beautiful music and penetrating lyrics. Those lyrics tell about Jesse’s illness and the effort he has to make to have enough air for his act. But also for his life. People with cystic fibrosis do not grow old. One of the most impressive sentences was, “In theory, Jesse is dead.” That’s quite ingrained.
“When I was 12 and I was diagnosed, the average life expectancy was 25. Cystic fibrosis was long considered a childhood disease because no one grew old with it. When I turned 24 I went to a pediatrician, because there were no specialists yet who treat this disease with adults. Life expectancy is now 45 and continues to increase with improved medication.’
‘In my current reality it is no longer how I think about it. I’m also starting to think about retirement savings and jokes like that.’
He smiles. ‘Frustrating. I hadn’t counted on that. Who knows, what would I have done differently if I wasn’t in a carpe diem mindset was sitting? What if I had chosen a different profession? But, so far, so good.’
How long can you continue with acrobatics?
I know acrobats of sixty years, but they are very rare. People usually find their own way around forty. Besides performing, I also teach at circus colleges, so my most likely evolution would be to teach more and more.”
In this performance you play with the expectation of people in the audience, who think that you are on your last legs and could fall over for good.
‘I do that consciously. There is no danger at all. What you see now is all very controlled. My health has improved a lot since we made this performance thanks to new medication. Two years ago, when I started this, I had only 34 percent lung capacity. It was really, really hard, and I really needed oxygen and blood counts. I am now doing much better physically and I can do the performance without an oxygen tank and without breaks. The struggle is form. Now I can fully focus on the content. I’m playing with a memory now.’
‘We started when I was in the hospital myself. When, as a patient and customer, I began to feel the need to be able to see a performance from my room. For the umpteenth time in the hospital in that small room with those white walls, I could only draw something to see something different.’
Need for culture
Jesse Huygh at work in Tilburg. Photo: Wijbrand Schaap
‘I really just needed to see culture. I then chatted about it with Rocio, my associate, who called me like a good friend. I said, “how nice would it be to see a performance instead of just a few nurses and a parking lot.” She immediately came up with the idea that I should make a performance myself, but that I first had to make sure I got out of that hospital, as a lung patient with covid. She said: “If you manage to survive, we’ll see what we can do. But then we don’t do a solo performance, but we do something that takes that oxygen tank into account.”.’
‘The performance is conceptually entirely conceived for the healthcare sector. We can even connect the sound system to the hospital network via an Ethernet cable, so that bedridden patients can also experience it from their room.’
Tears
The music and lyrics are penetrating, making the performance so much more than just a circus act. A Deux Mètres is a clear example of the development of circus into a real art form, comparable to modern (dance) theatre. Exactly what co-producer Circolo has been showing for years. You can also tell by the reactions: the seniors and their supervisors in Tilburg are deeply impressed.
“It’s rare that we don’t see a tear. I get very touching messages from patients or from people who have lost someone. During this period, many people recognize the nasal goggles (the clip with which the oxygen tube is attached to the nose, probably), because respiratory distress is quite topical during the pandemic.’
‘When we played at Theater Festival Boulevard in Den Bosch (in 2021), there was also a muco patient in his forties who, after the performance, had finally been able to talk to his children about his disease cystic fibrosis, which had never been a conversation before. He had had a lung transplant and things were better now. Now he could really have a conversation with his kids about that part of his life.”
Is there a difference between a healthy public and this public in healthcare institutions?
There is certainly a difference. People who come to summer festivals have a different etiquette, because people are also more used to less self-evident art. In settings you have a different focus and also different conversations. I’m actually quite surprised how concentrated people look at my performance. In the beginning they are a bit confused and they shuffle a bit, but after five minutes you notice that they are completely in it.
The performance is very tender and vulnerable. With such a theme: how do you work on something like this?
“It starts with an idea. We started collecting random material: what can you do with that air hose, how does that influence my movements? You then put that physical material in a book bag, put it next to you and then you start thinking about what you want to say and how you are going to say it.’
‘I work with a dramaturge to make sure the storyline is right. I also chat with psychologists because we do approach sensitive audiences. Then you have to wonder if it’s okay for me to go on stage and say I should be dead. Are we destroying people who are dealing with this issue themselves, and who are suddenly presented with it in a blunt manner?’
What was it like for you to do this?
‘The creative process was not without emotions. Things weren’t going well for me then, and it was quite recently after a doctor’s appointment where a doctor had first talked to me about a lung transplant. As the next step if I didn’t get better. During an improvisation, Rocio said something about it and I was really blown away, because it came in in a completely different way. I hadn’t digested it enough yet.’
‘It was an intensive and difficult process, but also enriching and healing. I now feel very good about my illness. I have accepted my situation. I also consciously used that oxygen tank in the performance, because I noticed that I was very ashamed to wear it in public. That has changed with the show. If you need it but don’t use it because you’re insecure to put it on in front of the class during my classes, that’s different isn’t it? That’s why I chose to do it in one go for three thousand people. What would I care about putting it in for ten people in the class?’
Good to know