Jenny Downham: ‘I asked everyone I met what they would do if they had a terminal diagnosis’

Emily Jupp

NowisgoodBIKE 300x196 Jenny Downham: I asked everyone I met what they would do if they had a terminal diagnosisJenny Downham, the author of ‘Before I Die’, about a young girl living with a terminal diagnosis, has just seen her book turned into the new film, ‘Now is Good’, starring Dakota Fanning.

In preparing to write the book, Downham kept a diary for two years, writing as though she was the protagonist, Tessa. As part of our current series on Delayed Diagnosis, she now shares her insights into the thoughts of a young mind that knows its days are numbered.

You’re not a cancer expert, but did being an actress inform your ability to get inside the characters in the book?

As an actor I worked for seven years with Tellers Theatre, a community theatre company based in London. We used improvisation techniques to take stories to young people who wouldn’t normally have access to them – in prisons, hospitals, young offender’s units, youth clubs and housing estates. I spent many years putting myself in imaginary situations and playing all sorts of people I had absolutely nothing in common with and would never normally be cast as. It was a perfect apprenticeship for writing and I still use lots of acting techniques to get close to characters, researching them as if  might play them on stage –  from what they like to eat, to what their hopes and fears are. It doesn’t all get in the book but it helps me to know who they are.

I kept a diary for Tessa for two years and every morning I started my day by writing the previous day’s entry. Initially I wrote about things I’d done as if she’d done them. So, I’d be walking to the park thinking – how would it be if this was her last autumn day, or sitting in a café thinking, would this taste different if it was her last ever hot chocolate?

The one thing I kept coming back to was how concentrated life would seem – how even the smallest, most ordinary thing might seem beautiful. Then I began to do things she would do, so I began to live her life for a bit. I wrote in hospital waiting rooms for days on end. I found a hill I liked and made it the special place she went to with Adam and wrote there. I went to a small hotel in a seaside town and booked a room. I learned about motorbikes and begged a friend to take me to ride pillion very fast.

When I finished the book in March 2007, the hardest thing was not pretending to be her anymore. I stopped writing her diary.  I really missed her.

What research did you do?

I read a lot of books about terminal illness as well as fiction and poetry about dying and loss. Susan Sontag’s Illness as a Metaphor was very inspirational, as was Anatole Broyard’s Intoxicated by my Illness and Raymond Carver’s collected poems, All of Us. I didn’t talk to anyone with cancer as I wrote or to any parent of a sick child. The point I wanted to make is that Tessa can be all of us – looking at life with absolute concentration because she knows better than most that it won’t last.

Two oncology nurses helped me with medical detail over many months.But I felt it was really important not to get embroiled in medical detail. Tess knows she will die. She lives with her condition. I wanted the reader to inhabit her body (by using first person present tense narrative) in the hope that they would have both a visceral and an emotional response. If Tessa’s body does the talking – if the reader experiences a lumbar puncture or a haemorrhage with her – then it inevitably pushes the reader closer to the physical self.  I wanted to achieve immediacy between the body’s decline and the words Tess uses to describe what’s happening to her.

What did you learn?

If I learnt anything at all about terminal illness in my research, it’s that the experience is different for everyone. I do believe that life becomes concentrated when it’s boundaried and that death is the biggest boundary of all. When you can’t look into the future, then all you have is the present, and in the present, small ordinary things become rich. This impacts a lot on family and friends and is why I wanted to show that Tessa’s list can include something as simple as a cup of tea as well as something as encompassing as love.

The only other research I did was asking everyone I met what they would do if they had a terminal diagnosis. I got very different answers but they all had one thing in common – the first response was active and the second reflective. So get the parachute jump and rafting through the Grand Canyon out of the way, and nearly everyone wanted to sit down with their family and friends, hold onto them very tight and never let go.

What setting did you have in mind?

The book is set in a nameless English town. Clearly, when filming they actually need to choose a location. I had no problem with them choosing Brighton [for the film]. The scenes shot there are wonderful – they have space and light and add a lot to the ambience of the film.

In the film, Adam is played by heartthrob Jeremy Irvine. Did you imagine Adam to be beautiful (Zoey, Tessa’s friend, says he’s ugly)

Well spotted!  I was trying very hard to avoid Adam being a ‘romantic dream’ (he already lives next door, for goodness sake). I wanted there to be a question about whether Tess would ever have fancied him if she wasn‘t sick. I based him on a guy I once knew who had the most beautiful smile. It completely lit up his face. None of my friends fancied him but every time he smiled, I swooned! I think when you find someone atractive, it’s the ‘light’ that you fall for. It gets you in the end.

It’s lovely when Tessa licks Adam when they’re in the tree, which is also a scene in the film, as well as the book, what made you think up that moment?

She’s out of her head on shrooms more than anything else! And because she’s high, she looks at the world from a new angle. Throughout the book, she has no false expectations. She knows she‘ll die and she knows there’s no get-out clause. But when she’s up that tree, she allows herself to dare to hope that it’s the modern world with all its gadgets that’s killing her. That staying in the wood with Adam and building traps and shelters will mean she’ll live. Licking Adam is part of that primitive viewpoint. I also wanted her to do something that showed how much she fancied him without kissing him (which seemed too ordinary, given the situation). Taking drugs allowed a momentary chink in her armour.

Do young people with cancer contact you and what do you say to them?

I get a lot of letters, mostly from family members who have been affected by cancer, rather than young people themselves. I reply to them all. I recently met a young woman with an incurable neurological condition who’d read the book when she was in hospital having just received her diagnosis. She said she’d been behaving like a ‘saint’ up to that point but reading the book gave her permission to be angry. I felt both humbled and fiercely proud.

There is a dark side to Tessa’s character – like when she plays the death game (“I want black rain to fall and a plague of locusts to fall out of the glove box”). What made you come up with that idea and also why was is it important that Tessa had this dark morbid imagination?

I spent hours and hours imagining how it might be to be Tessa. Writing her diary every day, I was struck by ‘her’ response to news items – a real tension between wanting the world to be okay and wanting it to crash before she did. If there was a pile-up on the motorway, she might be cruelly thrilled that someone had died who wasn’t expecting it (proving her random universe theories), but she’d be wretched too because she’d begun to see clearly how precious life was.

Her journey towards death is difficult and lonely. She often feels alienated from the people around her and has to find ways of seeking comfort and warmth in a world where anything could happen next. If you have no belief system, how do you make sense of the world? Something as random as illness happens and you have to make sense of it. Why me? Did I do something wrong?  What choices do I have left? What actually am I in charge of in my life? This is why she plays the ‘death’ game, why she imagines sickness on healthy passersby, why she gets a bit ‘biblical’ with perfectly ordinary events like what might be in the glove box. In some ways it’s a distraction for her but it also allows her to find ways of making her experience manageable.

‘Now is Good’ is out in cinemas this week

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  • Janni Tor

    I’d write a bucket list of everyone I wanna do in before I snuffed it.

  • Sean Wallace

    Starting with the Tory cabinet! (go read the Crown-Chambers appeal court judgment before coming knocking on my door please Mr Special Branch :p)

  • Janni Tor

    Suedeblue and Sean…I’m sure that there are enough undesirables to go round and we won’t need to waste time fighting each other over who is gonna off who. My only disappointment is that,as much as I smoke and eat fried food,no terminal illnesses have beset me yet. God bless you guys,you crack me up!

  • Janni Tor

    Seriously,as I said before…I would love to petition for a legally binding party manifesto,so that if a party was to breach it,they could be sued. I think if the threat of impeachment was a real possibility,we would have more honest politics. Similarly,a way would be created for the general public to apply legal pressure to a politician if their credibility was called into question,as a civil matter,without hoping the CPS would step in. Say if a PM went to war in breach of a UN order (Iraq) they could actually find themselves in jail. If you agree,pls tell people,so that it may snowball into reality,so we can all hope for a day when we have confidence in our leaders again. Much Love

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