A word about the project that gave birth to this book
Our books – printed and digital books in Finnish, as well as this English version – have been born as a result of coincidental meetings, without planning. There is nothing very usual in the way they have come about, which is exactly why our project has been so powerful and constructive. We are creating a new view that will empower trauma survivors on the long and demanding road towards healing.
I launched the project by hanging around in Internet chat rooms, asking whether there were people who would be willing to participate in writing a book about their traumatisation and dissociative disorder together with me. In the beginning, there was one other person who was daring enough, and, after a year, there were five of us who had managed to stick to the project, while many people had left soon after joining the group.
It’s not easy to write a book about your own dissociative disorder. We divided the writing process into parts, and set a goal for each month. is provided the necessary structure for our writing. We live in different parts of Finland, which means that we were physically alone during the writing.
At regular intervals, someone would disappear from the group, but was found or came back later, sometimes even after a period of several months. During the process, some people fell seriously ill or spent long periods on wards; there were suicide attempts and general dissociative symptoms. We did our best to care for each other genuinely and encouraged each other to keep fighting. “Don’t hurt yourself!” was a common wish expressed when we were chatting.
There were times when I didn’t know whether to cry or laugh. Since the memory of people with dissociative disorders works in an atypical way, the writers kept asking things like “Now where are those instructions again?” and “What was I was supposed to do now?” In the beginning, one of us might suddenly wonder who a certain member of the group actually was.
For me, the most important thing was to be able to push the project ahead by concentrating on the essential: the thought of how empowering it is for a traumatised person to write his or her own story and participate in con dential cooperation. Therefore, occasional phases of self-destructiveness or fading interest never became overriding issues during the project. We just carried on, and, after a few years, we had enough stories, photos, paintings and videos for an e-edition of our book. The title of our first book was Viisi naista, sata elämää (“Five Women, a Hundred Lives”).
For me, another important goal of our project from the very beginning was to create an ethical working culture: for example, we would never intentionally hurt each other. I felt that, to build up trust, we needed to be especially considerate towards each other. We also agreed that if anyone in the group was opposed to a new idea, we would not follow through with it or insist on discussing the issue in any way.
We soon realised that our group had a variety of skills: we had authors who wrote prose or poetry, artists who drew, photographers and video makers, musicians, dancers, language professionals and bloggers. With time, the authors began, quite naturally, to assume responsibility for the parts of the book that they felt they could work on. We had no funding, so making use of all our skills was both empowering and a pre-requisite for carrying out the project.
The book Five Survivors, A Hundred Lives is part of the second phase of our project. In this English version, we have a new author, Carita Kilpinen; Anssi Leikola, who participated earlier only as an expert on dissociative disorder, now also writes as a person who has himself suffered from dissociative disorder. Our aim is that our project will keep growing and changing.
We have built up new awareness among traumatised people by publishing our own website www.dissociation.fi , by writing a blog that is updated regularly and by having an open Facebook page. On these digital platforms, we have managed to engage many guest writers, from trauma survivors to health professionals. The most intense feelings I’ve had during this project of many years are feelings of success and gratitude.
For a long time, I have tried to find new writers and people who would be willing to share responsibility for the project. But traumatised people must find their own motivation for this kind of activity. Gradually, we are achieving our goal, and interest in our project is increasing. It’s delightful to notice that, for most of the survivors, it is important to be able to contribute to a change that will hopefully make the treatment of dissociative disorder in psychiatry more humane and the comprehensive treatment of trauma more common.
Seija Hirstiö, designer, documentarist, author
Watch the video
This video was first presented in ESTD - Trauma and Dissociation conference in Bern, Switzerland, in 11.11.2017 as a part of our presentation and Five Survivors, a Hundred Lives - book publishing event.