‘I want to continue performing and doing work that lasts a long time, and now, thanks to Kaftrio, I can.’ Martin’s story

Can you tell us a little about yourself and your CF journey?

I was diagnosed with CF at six weeks old. When I was a baby, I was constantly losing weight, so the hospital started to do all sorts of investigations. Then they made the connection with cystic fibrosis after my parents told them about my cousin in Ireland who has CF. After that I was tested and then received my diagnosis.

I was very unwell as a kid, so I spent a lot of time in and out of hospital, but that got better as I got older, and in my early adulthood, I managed to get my health under control. Over the last 15 years, I've only had a few hospital admissions, which has been amazing.

How did you find starting Kaftrio?

It was incredible. My friends all notice how little I cough now, and to see the difference three little tablets have made to my life is amazing.

What inspired you to become a performance artist?

The enduring legacy of being brought up with CF is the idea of death. It's something I've always been so aware of. When I was a kid, the average life expectancy was 30, and the message at the time was that many people don't even live out their childhood years.

I really internalised my life expectancy and became so aware of the slow build-up towards death. But it's also given me such an amazing understanding of morality and my life in a way that 'healthy' people don't always appear to appreciate. And there is something quite poetic about that.

Spending long nights in hospital really gave me time to think about and contemplate my life. It felt like I became a baby philosopher. And then, as I turned 29, I realised that I wouldn't die at 30, so I came up with this tongue-in-cheek idea that I was moving into my zombie years. And that became a playful hook I use in my performances.

So now I make performances that explore the boundaries between life and death. While they aren't specifically about cystic fibrosis, my work looks at what it means to be sick and tends to use the physiology of CF - so a lot of what I do focuses on breathing and mucus.

How did you get into your line of work?

I was a total exhibitionist as a kid. I would put on shows in my grandma's house and get all the neighbourhood children involved. I was also a member of the local youth theatre groups.

At the time, I thought I wanted to be an actor, but then I attended this very experimental art school called Darlington College of Arts, which has closed down now, and it was at that point that I started to realise I wanted to create work that centred myself. I didn't want to perform or act as someone else. Performance art allows me to be myself but it is very physically demanding. 

What type of performances do you put on?

One of my earliest performances was called Mucus Factory. The aim was to make CF visible to people, so for multiple hours while I performed, audience members could come and go while I gave myself percussive physiotherapy and coughed up mucus into jars. So I was literally a factory producing mucus. 

The nature of all my work is durational instalments that go on for many hours where people can dip in and out.

Because my work is unscripted, there is some uncertainty of whether something might not go to plan, but a lot of it depends on the audience's reaction too. However, I like to think that whatever happens is meant to happen, so I just try to work with it and go with the flow. That's a huge part of the performance.

What has the response to your work been like?

Over the years, it has developed quite a big following, and my most recent work has been in the Tate and the ICA. I am currently doing a residency at the Whitechapel Gallery in London. My performances really resonate with people who have different medical conditions or have seen loved ones go through illness. I know some of my work can be hard to watch, but it's incredible that people can respond so emotionally to what I do.

How do you manage your CF alongside your job, and have you faced any challenges?

Definitely, I spend days preparing and gearing up for a performance, but I could wake up on the day feeling awful. However, my shows tend to be one-off, so I have to go and do it. I don't get paid if I cancel a show, so that can be stressful.

I also teach in the theatre department of Queen Mary University in London, giving me some rhythm and routine.

Even though there are more conversations around health and illness, I feel like many institutions don't really understand how to adapt, especially around invisible conditions like CF. There also aren't enough discussions about infection control in performance spaces, so I still can't have other people with CF come and see my work live.

In terms of managing my CF, I just make sure to rest around the time I have a performance booked. A huge part of the creative process is resting and caring for myself. I also thrive off routine, which helps when it comes to taking my medication.

What's next for you?

I currently have a residency at the Whitechapel Gallery, where I will be putting on three performances this year. The first one was in May, the second is in July, and the final one will be at the end of the year. 

It's a trilogy called Ambulance to the Future, that will focus on the idea of immortality and the legends of immortal people. The performance will incorporate film elements and live action showing the body's fragility.

What does an average working day look like for you?

While each day is so varied, on a typical day, I will head over to my rented studio and write the basis for my performances to help me figure out what will happen. Then I will look at visual elements like photography or videography to go alongside the live sections. 

Do you have any general advice for other people with CF?

Just try to be open about your CF. I know it can be hard to talk about, but allowing myself to have honest conversations with other people about my health has helped me to stay mentally healthy.

In terms of practical advice, try to find a routine that works for you so you can get all your medications done in a way that suits your life. I like having my medications visible around the house so I don't forget to take them.

What do you love most about your job?

The thrill, excitement and nerves that come from being in front of an audience.

What motivates you the most in your career?

The feeling of performing. No matter how physically demanding or gruelling the performances are, at the end, I feel ecstatic. There's no sensation like it.

What are your hopes for the future? 

In the future, I want to continue performing and doing work that lasts a long time, and now, thanks to Kaftrio, I can.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.