When, at the end of his performance, he stands on top of a five-metre high pole, struggling to keep his balance, the audience holds its breath. As does Jesse himself, but he does not do so voluntarily. For a whole performance, we saw him struggling with oxygen hoses and blood gauges, pausing regularly to regain air.
What if Jesse Huygh, the circus acrobat, overestimated himself after all? What if this is the last time he does this act? Anything is possible, because we have just spent three quarters of an hour watching this not even old acrobat struggle with oxygen deprivation.
Jesse Huygh has cystic fibrosis (Mucoviscidosis or Cystic Fibrosis), a hereditary lung disease that is incurable, making breathing virtually impossible for the patient. His performance 'A Deux Mètres' is about it. He plays it mostly in hospitals and care centres.
We meet Tilburg. There, he performs his show, co-produced by Circus Festival Circolo starting 20 October, in the garden of Het Laar, a nursing home. His audience consists of wheelchair- and walker-bound seniors, some, like him, equipped with an oxygen tank.
Rare mutation
'They didn't diagnose me with Cystic Fibrosis until I was 12,' he says afterwards, as his team packs the mobile stage with the famous 'Chinese Pole'. 'Before then, they just thought I was a little ailing. It was difficult to categorise me because I have a very rare mutation. That took time. Only six people had been discovered in Europe with this mutation. I was not in the general package.’
Were you into circus and acrobatics back then?
'With circus, not yet. I did always do a lot of sports, with judo and gymnastics. It wasn't until I was 14 that I started doing circus.'
Why?
'Why? Because it's fun! In secondary school, there was an option to do acrobatics for two hours a week after class. Since I was always very athletic, it came easily to me. I started doing it more and more.'
What did you know about the disease at the time?
'You take it into everything you think. Especially also in conversations with worried parents: "So are you always going to work in those dusty theatres?" On the one hand, it is very positive, because exercise is healthy, it helps increase your lung capacity. You get more room in your torso. It is also a passion that gives me energy and drive again to take good care of myself and go for it. On the other hand, I do often find myself in an environment that is not positive for lung patients.'
25 years
The performance is a duet with acrobat Rocio Garrote and features beautiful music and poignant lyrics. Those lyrics tell of Jesse's illness and the efforts he has to make to have enough air for his act. But also for his life. People with cystic fibrosis don't get old. One of the sentences that impressed me most was: 'In theory, Jesse is dead.' That kind of chops.
'When I was 12 and I was diagnosed, people told me that the average life expectancy was 25. For a long time, cystic fibrosis was considered a childhood disease because no one got old with it. When I turned 24, I went to a paediatrician because there were no specialists treating this disease with adults yet. Meanwhile, life expectancy is 45, and it continues to increase with improved medication.'
'So in my current reality, it's no longer how I think about it. I'm also starting to think about retirement savings and jokes like that.'
He laughs. 'Frustrating. I hadn't counted on that. Who knows, what else would I have done if I hadn't been in a carpe diem mindset sat? 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, 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 you are walking on your last legs and could fall over for good.
'I do that consciously. There is no danger whatsoever. What you see now is all very controlled. My health has improved a lot thanks to new medication since we made this performance. Two years ago, when I started this, I only had 34 per cent lung capacity. It was really hard, and I also really needed oxygen and my blood levels to be monitored. I am now doing much better physically and can do the performance without an oxygen tank and without breaks. The struggle is form. Now I can fully focus on the content. I am now playing with a memory.'
'We started it when I was in hospital myself. When, as a patient and client, I started to feel that need to be able to see a show from my room. For the umpteenth time in hospital in that little room with those white walls, I could only draw something to see something different for once.'
Need for culture
'I actually just needed to see culture. I then started chatting about that with Rocio, my associate, who called me as a good friend. I said, 'how nice it would be to see a performance instead of just some nurses and a parking lot'. She quite immediately came up with the idea that I should then go and do a performance myself, but that I should first make sure I got out of that hospital, as a lung patient with covid. She said, "if you manage to do that alive, we'll see what we can do. But then we won't do a solo performance, we'll do something taking that oxygen tank into account.'
'The performance is conceptually conceived entirely 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 rooms.'
Tears
The music and lyrics are penetrating, which also makes 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 also been showing for years. You can tell by the reactions: the seniors and their supervisors in Tilburg are deeply impressed.
'It is rare that we don't see a tear. I get very touching messages from patients or from people who have lost someone. At this time, a lot of people recognise the nose goggles (the little clip that secures the oxygen tube on the nose, ws), because breathlessness is quite topical during the pandemic.'
'When we played at Theatre Festival Boulevard in Den Bosch (in 2021), there was also a cystic fibrosis patient in his forties there who, after the performance, was finally 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 was now doing better. Now he could really have a conversation with his children about that part of his life.'
Is there a difference between healthy audiences and this audience in healthcare facilities?
There is definitely a difference in that. People coming to summer festivals who have a different etiquette, because people are also more used to less obvious art. In institutions, you have a different focus and also different conversations. I am actually quite surprised how concentrated people are watching my performance. In the beginning, they are still a bit confused and shuffling a bit, but after five minutes you notice that they are totally into it.
The performance is very tender and vulnerable. With a theme like that: how do you work on something like that?
'It starts with an idea. We started collecting random material: what can you do with that air hose, how does it affect 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 ask yourself whether it's OK for me to go on stage and say that I should be dead. Are we destroying people who are themselves grappling with that issue, suddenly being presented with that bluntly?'
What was it like for yourself to do this?
'The creation process was not without emotions. I was not doing well at the time, and it was quite recently after a doctor's appointment where a doctor had first talked to me about a lung transplant. As a next step if I didn't get better. During an improvisation, Rocio said something about that and I was really freaked out for a moment because it came in in a completely different way. I hadn't digested it enough yet.'
'It was an intense and tough process, but also enriching and healing. i now feel very good in the face of my illness. I have accepted my situation. I also used that oxygen tank very consciously in the performance, because I noticed that I was very embarrassed to wear it in public. The performance changed that. If you need it but don't use it because you are insecure to put it on during my lessons in front of the class, that's different, isn't it? That's why I chose to put it on in front of three thousand people at once then. What would bother me then to put it on in front of ten people in class?'
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