Why I began writing about Max and Tsugi
I have always liked to write, though with my coordination it is hard work, and it tires me. My writing career began with a shortage of books. I took books from the library, they had to be given back, and I wanted to keep something for myself — so I needed some way of fixing what I had read. Fairly quickly, still a child, I understood: the only way was not to copy books out, but to write a story about books. I had a large Soviet calendar, three hundred and something pages, a page for every day — and in it I made my extracts and wrote that book of mine. Much later I learned that in the Renaissance this was called a commonplace book. That, I suppose, was my creative debut.
I always liked telling things. For my nephew I invented completely made-up fairy tales about whatever it was I wanted to get across to him. And out in the yard among the other children I was popular because I was forever inventing some game or telling some story.
And then I grew up and forgot all of it. Fairly quickly I turned into a big serious fellow who builds computer programs, architectures, and other tedious grown-up things.
I have been in therapy for a few years now. At some point in therapy I got as far as working through my traumatic childhood experience and became interested in the idea of the internal family. I began getting to know the children who live inside me — and there was one interesting eight-year-old there. Quite lonely: often at home, liked to sit on the windowsill and read books that had a lot of pictures and something interesting in them. And to watch people, invent stories about them, and weave those people into the books being read.
One day my therapist asked: what would you write to that child?
I decided that simply writing “everything in your life will be fine, you will have a wonderful wife, and somehow it will all work out” would not help much. So I decided to write that child an actual book: about a boy of the same age, living with the same diagnosis, and about how to live with it. And about a clever, kind helper cat — a little bit magical, who has a life behind him of his own and shares it. The characters of this book help an eight-year-old boy make sense of difficult things: how to live with anger, with sadness, with other people’s pity, how to fit in, how to meet other children. And much else, because every story in this cycle is there for a reason — each one is about something.
The first story grew out of writing for adults. I began by writing articles for adults about cerebral palsy: about how I live with it, what it is like. There were many stories and analogies in them. One of them was a child’s. I loved the radio, and my brother used to explain to me how all those circuits worked, those electrical signals, how the whole thing gets repaired. And somewhere in there he said that nerves are, essentially, wires with signals too, and that my problem is exactly there. That sank deep into me. In truth, all my life I wanted to become a doctor and somehow learn to repair that radio — to cure myself and others. Because I did not understand: if a radio is fairly simple to fix, why is it so hard to fix me?
That radio analogy, and my adult articles about living with cerebral palsy, were the beginning. Out of them came the first story of the first book, where Max and Tsugi repair that radio in the basement — and through the analogy Max understands a great deal about himself, learns a great deal about Tsugi, and says what it is like to be different. I thought I would stop there.
But then I wrote a second one — about coping with pain: how to hear pain, how to hear yourself, how it is possible to live with it. Formally it is a book about tea, because I am a great enthusiast for tea and found in it a method of meditation. In truth it is not really about tea — it is about having to know how to listen to yourself, signal by signal.
And then it went on, little by little. There was a story about how hard it is for Max to live with reading being hard for him. I remember it: I am eight, and I am deeply ashamed and uncomfortable. I tried to tell those feelings back in the first person — and how hard it is to write, as well.
Then came harder subjects: accepting yourself, unconditional love, shame, anger. How we fit into a group of friends, how we look for those friends, and how hard it is for children with disabilities to find them. And after that — how we learn to help other people, and first of all ourselves, so that there is something left to share.
The cycle ends with Max organising a club for children, teaching them the various things he worked out himself. That is part of my experience too: I volunteered a great deal, taught children the basics of computer literacy and programming, taught them a little about playing games. It was my mechanism for socialising and my way of coping with all those challenges — though by then I was clearly no longer ten, but somewhere near fifteen.
I shared these stories with my therapist, and at times they even became a bridge for communication in the therapy — there was a response to them. Later I began adding short notes and addresses to the adults. My therapist Olha, incidentally, helped me enormously, both with the work on the text and with the therapy itself. And so, working with her, over the course of my therapy, this cycle was born.
Obviously these are fairy tales. Obviously they are personal experience. Obviously they are a wish — how it ought to have been, even if in my own life it did not always turn out that way. But the strength of these stories is that they are in the first person, from a child with that experience. And the cat here is a character with a deep physical trauma as well: he learned to cope with it, went through a deep depression, and clawed his way out. So it is a very layered story.
And it began with a simple question: what would you write to yourself at eight, to help him?
This cycle of stories is the answer.
— Volodymyr