Performance artist Brian Lobel has spent 12 years creating innovative work out of difficult personal experiences and tough topics. He's now joined forces with Bryony Kimmings and Complicite to create the highly anticipated new musical A Pacifist's Guide to the War on Cancer, which premieres at Manchester's HOME on 20 September, then plays Exeter Northcott and the National Theatre.

Did you do much theatre growing up?

I did some musicals, not well - I'm not a very good singer or actor. I can tell stories, just not in someone else's skin. I actually thought about being a theatre director, and then in 2001 I got diagnosed with testicular cancer while I was at the University of Michigan - I was 20. Being sick meant I transitioned from a white guy who didn't attract any attention to someone who understand what it was to be looked at - suddenly I was 6'1", 120 pounds, looking like death.

Solo performance seemed like a natural thing, because when you're sick you feel alone in the world. I met these amazing feminist lesbian performers, like Molly Hughes, Lois Weaver, Peggy Shaw, who were all in that same space of being looked at. Their work said if men are going to look at my body, I may as well get on stage and take control of it. That style of performance became hugely important to queer people too, people of colour, people with disabilities.

Does performance have a therapeutic element?

My projects are all quite different, but the unifying thing is they all try to solve a problem in my life. I was holding onto such a burden with my cancer story, so I felt I had to tell it to relieve a bit of that burden - to say "It's not just my shit, it's our shit." Also I was asked the same questions again and again, so this was the most efficient way to tell the story to everyone.

Were there misconceptions you wanted to correct?

I had testicular cancer while Lance Armstrong was winning all his Tour de France titles, so the biggest misconception was his style of inspiration - that "live strong", "be brave" ethos. Actually, people after this experience aren't bigger, stronger, faster, living more fulfilled lives. The more we bully them into being those things, the more they can't get back to feeling normal. My cancer is not a platitudinous inspiration for other people.

I give a lot of talks to teenage cancer trusts, and my goal at the end of the experience - whether you survive or die - is "I hope you're as mediocre at the end as at the beginning". If we set such a high bar, you fail. When I was diagnosed, I thought "God, do I have to fundraise? Do I have to join an Olympic team? What team could I even make - maybe fencing, America has a really shit fencing team." You can't put that pressure on yourself.

Bryony Kimmings in rehearsal

Did you find it hard to tell the people in your life what you needed?

My testicular treatment was successful, but very rough and very fast - I lost a lot of weight and lost my hair. People were really scared; they didn't know what to do. Luckily I was pretty outgoing about what I wanted, which was really helpful. "This is what I want to talk about; this is who I want to see."

Me doing that work has helped others. I had a friend email me recently to say she has cancer, another had a mastectomy last week, and all my friends have read about cancer. They talk to me about it - I'm a safe space - and also to each other. That's a really good thing.

How did you develop your innovative performance style?

I got bored of just telling my own story after a while, and started thinking about interactivity. I had audience members touch my genitals and write descriptions about what they felt - that was a late-night cabaret piece - and I worked with other people to tell their stories too. I'm still interested in cancer as a theme, particularly as there's still too much quoting of cancer books from the Seventies and Eighties - it's changed deeply in the past 40 years. So I'm doing lots of educational work as well.

How did A Pacifist's Guide... come to you?

Bryony and I have performed beside each other for many years in clubs and weird places, and we've become very good friends. She took a meeting with Complicite producer Judith Dimant, who'd seen Bryony in Credible Likeable Superstar Role Model, and the meeting was kind of weird. Then Judith told Bryony she'd been diagnosed with cancer, and Bryony said "Why not do something about that?"

Then Bryony got in touch with me. My job has always been to distil the noise of cancer. There's so much cancer everywhere - so many news stories. I wanted to help Bryony and Judith, and the cast and creative team, navigate the mess of it all, and find interesting voices we haven't heard before. Bryony's projects have such a unique perspective, whether on childhood sexuality or mental health, and we wanted to do the same here - not just have the stories you'd find in every fundraising campaign or Hollywood movie.

Tom Parkinson in rehearsal

What's the driving force of the piece?

We're really interested in talking about how one does this - how do you know what to do when the time comes? We're so bad about addressing illness, but one out of three people gets cancer, and when the shit hits the fan, it's too late to start thinking. So, how can we be more prepared?

The story of the show is about creating that pacifist's guide - figuring out the reality of illness, and how we can have those conversations with friends and family. It's something that's going to happen to all of us - if it's not cancer, it's mental health, HIV, diabetes, accidents, ageing. Something eventually makes us fragile in front of other people.

Are Brits worse at communicating emotionally than Americans?

I'd say we're less emotionally withheld - for better or worse, Americans get more in your business. That's sometimes helpful around illness, sometimes damaging.

What's it like working on this scale?

It's been so interesting creating the show. We've always worked with our friends - brilliant provocative artists, but getting to cast all these trained, beautiful singers and dancers who can communicate an idea flawlessly is so exciting. Bryony and I separately, and [composer Tom Parkinson], have been making things on a smaller scale for a long time, but we've been killing it, so now it's time to bump it up.

Have you had to adapt your working process?

It's been adaptation both ways - our performance art practices to musical theatre and vice versa. Complicite, as a producing house and a partner, has been invaluable at negotiating the space between. They create work that's not a musical but has music, grand spectacle and intimacy - making the form work for the stories they want to tell, and not worrying about definition. People are going to leave the show singing this music. It's going to fulfil what musical theatre fans want it to fulfil, but it'll do the same for performance art audiences.

What's the style of music?

The inspiration was less musicals, more building from reality - so instead of looking to Sondheim, Bryony and Tom looked to Audre Lorde and her radical point of view on breast cancer, Susan Sontag and her theories on the kingdom of the sick in Illness as Metaphor, and of course the patients we met. We always came back to them and how to honour those individual stories, rather than trying to work in one particular musical theatre style.

The company in rehearsal

Do you think it's a radical take on the musical?

It doesn't feel structurally like any musical you've seen before. It's not "Here's a big choral number, then a solo performance" - it's freeform. Tom's composition is so intensely designed and textured - it really feels like a hospital room, a garden, an MRI machine, where the banging of a bass could be the banging of an MRI.

The world of illness has its own music, its own strange sounds and feelings. And there's some banging tunes! There's one I can't get out of my head, where a woman's told she has to go to the hospice. I'm singing that wherever I go. And "Give me back my testicles, give me back my hair." I get some strange looks...

Has it been easy to divide responsibilities?

Bryony and Tom are fantastic at the detailed work, line by line, the precise movement of people, while I've had the great privilege of thinking more generally about the stories and themes, and how to give both people who are sick and people who've never been sick something to think about.

The wonderful thing is everyone's in the audience together - it's not segregated. So it'll be overwhelming for the performers, to look out and not know who's sick and who's healthy. That's good, as it's something that affects all of us - which is hopefully true of the best of musicals and the best of shows.

What's it been like for the performers to interact with the inspirations for their characters?

I brought in Gia, my friend from Michigan, to meet Naana, who's playing her. Watching them spend time together is lovely. The performer who plays Shannon got to meet Laura and Pippa, who both inspired her story on hereditary illness. One woman we interviewed, who had a terminal diagnosis, passed away last year. This research is hard to do - we feel that profound loss.

For the actors, it's both a happy and a sad experience. That's important. If you go home from Hamlet crying no one thinks that a bad thing. Very rarely do people with a serious illness get a chance to really hear their stories, or see art that's really about their life, not "inspiration" or weepy, but honest.

Gareth Snook and company in rehearsal

What would you like people to take from the show?

Gia has this great phrase called "giving grace". She talks about giving grace to people - really letting them do cancer the way they're supposed to do it. She has a chronic illness, but she doesn't want to wear pink or "feel positive", pick out fluffy bras or talk about what sponsored run she's going to do. Her strategy is "You do you, and I'll do me".

So, I want them to think they about how they shouldn't police other people's behaviour. Like Barbara Ehrenreich's Smile or Die argues, you shouldn't always have to look on the bright side - or worry about being judged by others if you don't.

Also, don't give people "the cancer face" - when I told people about my diagnosis, they'd squirm up like a raisin because they didn't know how to respond. I hope to give people more tools, so they don't default to that pity and uncertainty - which is tough to negotiate all the time. You've got enough to worry about with hospitals and doctors.

What do you think of the healthcare system in the UK?

I grew up in Albany, New York, and I moved here in 2007 - actually because of health insurance. This was before healthcare reform in the US, so it was legal for insurance companies to charge me 10 to 20 times more than my peers because of a pre-existing condition, which was cancer. I was a student for a year, then I started paying into the NHS - now, I'm proud to support it and it feels very near and dear to me. In America, it's a completely private market system, so it's impossible for me, as an artist, to live a dignified life.

It's really frightening hearing the debates now about the NHS. The questioning of whether smokers or the obese should be allowed - that's so dehumanising, as is the disability benefits testing. Cancer has the advantage in difficult times that people are used to giving money to it! But all these other areas will struggle. And cancer is best treated alongside other health conditions, physical and mental, so we can think holistically about what being normal, being healthy, being productive really means.

Finally, how you do you feel watching A Pacifist's Guide...?

I find the show very overwhelming. It really finds that truth about "I need to let this be shit for a minute before I can let it be better." It will be challenging for audiences. If you've never had an illness, you might think it feels difficult. If you have, you may find yourself in it.

Writing rather than performing, I really feel a parental love. I'm so excited for people to see it. It is, I hope, a chance for people who've experienced illness to feel their story is told in a way that's true and dignified and mind-blowing - and has banging tunes!

A Pacifist's Guide to the War on Cancer is at HOME in Manchester 20-24 September, Exeter Northcott 28 September-2 October, and the National Theatre 14 October-29 November

Photo credit: Christa Holka, Sarah Ainslie

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