Six years ago, Martino Sclavi was given 18 months to live after a grade 4 glioblastoma brain tumour diagnosis. A side effect of his brain surgery left the film producer unable to read. Words had escaped him
Despite this, his book has just been published, The Finch In My Brain, alluding to the bird-like shape of the hole that's been left in his head.
Now one of our High Profile Supporters, Martino talks about dealing with his diagnosis, the effect on those around him, and the inspiration for others going through similar devastating experiences.
It definitely helped giving it an identity. On many levels I had this idea that the cancer was something outside of me, it was 'aliens' outside of my body attacking me. I played with a lot of fictions for myself and the diagnosis and I've learned through time that a lot of people who get these kind of outcomes from doctors do the same as a way to cope. Having these fictions and the process of naming, is part of being able to cope with everything.
People didn't freak out too much when it became known as a finch because it's not too scary, not too bad a thing to visualise. It's not a scary 'alien' in the end! About 75% of people, when they see the size of the hole in my brain, do just freak out. They don't know what to say. 'Oh my god!' is usually the first response. The last thing that comes to their minds is, 'is it a bird?'
Only a few people I know are able to engage in the humourous nature of it being a finch. People have very different reactions to images like that.
The hardest part is seeing the effect on those around me, my family and friends. They have to live with my diagnosis and it's horrible. For me, it was crucial to mentally stay positive because the people around me were very close to making the whole thing collapse around them with the shock of the situation. And I didn't know what I could do for them. In a way, there is a sense of guilt because it's me that has driven them into this dramatic place, so it's my responsibility to keep them positive in any way I can. It's hard to shake off this guilt.
There was a whole bunch really, considering that I couldn't' read it. The whole process was difficult and I had a lot of self-doubt about if any of it would be interesting for anybody to read. I had this sensation that I was only doing it for myself and unconsciously I didn't think it was ever going to become a book. It was definitely clear though early on that it was going to be therapeutic for me. Fortunately, I have very nice friends who I'd give parts of it to and get some feedback, which was usually 'this is great, keep going!'
The parts that were very difficult to write were the parts about my wife. After all, they were intimate and very complex as a narrative and that's why I included her many comments and observations as part of the book. It was important to acknowledge that other people around me were seeing what was happening to me very differently.
That's tricky but any kind of meditation or prayer of whatever kind of religious relationship they you have, really helps. If you pray or meditate for half an hour each day, like my grandmothers used to do at home, it empties your mind from stress. It's crucial to have that breath, to be able to cope with the feeling of waking up every morning thinking 'am I really going to die', 'is this situation real', 'is there nothing I can do about it' – you have to be able, if you can, to clear some space for those kind of thoughts. You have to make peace but you have to keep fighting it.
So, every day is a beautiful day, don't complain too much, and it's tricky but you have to surround yourself with people who aren't complaining all the time, not surround yourself with problems.
For the health of the individual person, the rest of the family must be strong and I believe they need some support, some sort of therapy to help themselves as a family. They need to recognise what everyone including you, is going through. They have to put themselves in a situation where they can heal themselves so that they can help you. It's a lot of work on both sides – it's tough to do but you have to do it.
It took about a year to get the book published but I do have ideas for another in the time that I have. That's the plan!The Finch In My Brain is out now, published by Hodder.