A SHORT WAY into Tell Me I’m Here, Anne Deveson’s magnificent account of her young adult son Jonathan’s catastrophic mental illness, she describes yet one more struggle to get Jonathan to agree to go to hospital. Her needs – like her assessment of his needs – are clear: he should be kept safe there for as long as possible and he should be medicated to subdue his rapidly accelerating psychosis. To say his behaviour is extreme at this point barely describes it. Anne takes up the story.
The policeman rings the hospital. I can hear a voice [at] the other end, a crackly sound. The policeman relays the medical message: ‘Doctor says, Why can’t he stay with his mum and come in tomorrow morning?’
I am dumbfounded.
The policeman answers for me: ‘Because he’s been frightening his mum and acting strange.’
The phone goes crackle, crackle. The policeman says: ‘Doctor asks, “What’s wrong?”’
‘Schizophrenia,’ says the policeman. He listens. ‘Doctor says, “There’s no such thing as schizophrenia.”’
A page later and she is writing, ‘I felt as if this was some monstrous endurance test, which would never end.’
As she gets through but not over another agonising night, we are with her. Witnessing that chaotic intensity, we discover that Tell Me I’m Here is more than a book. It is an intense revelation of profound inner fragility and psychosis, and the havoc it causes for sufferers and in family life. Through those intimacies, Anne Deveson shows us how urgent it is to understand and care about a common and commonly misunderstood illness, and – most of all – to care meaningfully about the people who have it. (One person in a hundred will experience schizophrenia, more males than females; it usually begins in late teens or early 20s; it has chronic and acute stages; it can increasingly be medicated but whether it can be cured remains contentious; it is worsened by drug and alcohol abuse.)
Tell Me I’m Here is a passionate account. How could it be otherwise when minds, hearts and lives are breaking apart? It would be neither possible nor truthful to discuss it dispassionately here. We come to know Jonathan both through and beyond his illness. We also come to know Anne both through and beyond her powerful narration. She allows this, and it’s impossible not to feel awed by the courage it must have taken to record, recall, analyse and tell. Her detailed, riveting, quietly insistent picture of what life with and also alongside schizophrenia really adds up to explicitly defies the stereotyping, prejudice, ignorance and indifference so bleakly demonstrated by many professionals in this 1980s period. Her storytelling skills mean that we cannot turn away, and nor do we want to.
Our effortless absorption into Jonathan’s story is in part because while Anne Deveson was, and is, an immensely accomplished researcher and writer, this private, highly professional woman also writes as and reveals herself to be a fiercely loyal, committed and sometimes conflicted mother. This offers a depth and honesty of insight that, as a writer and critic who is also a mother, I particularly value. Through the power of Anne’s maternal gaze, we never lose sight of Jonathan, the eldest of three children, as a complex, much-loved human being. We come to know him as a son, brother, friend. (His life as brother to Georgia and Joshua is especially poignant.) We see him as someone shaped by high intelligence, tenderness, playfulness and humour as well as by madness. When his psychosis is florid he is sometimes very frightening, and is himself often frightened. But Jonathan is always more than his illness. And, in the context of an inner tumult that in the worst phases strips sufferers of a familiarly coherent or predictable self, that is a remarkably moving achievement.
Such fragmenting of a once-familiar ‘self’ is one of the cruellest aspects of this cruel disease. It may even be the worst. Something more is lost here than what one might call a ‘sense of self’ that is, in late teens and beyond, still developing and often relatively fragile, even without a disease that from the onset of the first psychotic break robs sufferers of inner reference points. The foundations upon which we structure our vital senses of ‘self’ and ‘the other’ are shaken, sometimes fatally. Extreme sensitivity to sensual stimuli, loss of pleasure, flatness of emotional affect as well as rapid and escalating mood swings, a loss of ordinary motivation and judgement, cognitive confusion, loss of vocabulary and ‘sense of direction’ in conversation, and loss of tonal sensitivity are just some of the ‘negative effects’ of ‘schizophrenia spectrum disorders’. The better-known, more extroverted symptoms – called, confusingly, ‘positive’ – include hallucinatory inner voices that may be as hostile as they are persuasive, delusions, paranoia, and a devastating loss of clarity about what is ‘inside’ the mind and what is outside it.
Anne – Jonathan calls her Anne; we experience her through the intimacy of these revelations also as ‘Anne’ – is clearly loved by all her children, including Jonathan. Anne is Jonathan’s carer and advocate, as well as mother. She searches tirelessly for information and help, even the most partial ‘cures’. She sees the person, not just the illness. She loves him. He is rarely out of her thoughts or dreams, yet there are many times when she represents everything that horrifies him – when he is literally unable to see his constant ‘good’ mother for the wholly ‘bad’ one that his illness has constructed. In those times, when his mind is entirely colonised by illness, he is extremely frightening. Anne writes:
Jonathan came in through the windows in the downstairs front room. He was crazy… When Jonathan became psychotic, the level of discordant energy was so immense that I could feel him approaching minutes before he actually arrived. Several times I would wake in the middle of the night with the hair on my arms standing on edge and know that Jonathan was somewhere near. Here was Jonathan on this blue and white November morning, telling me that he had decided to kill me.
Days later, when all her attempts to get help for Jonathan have fallen upon willfully deaf ears, she writes: ‘I staggered back to bed feeling I was in the middle of some monstrous nightmare. How much suffering must we endure before we can get any help? Who is mad, I wonder? Who is mad?’
In 1991, when Deveson completed Tell Me I’m Here, she had not, to my knowledge, written any fiction. Her first and, to date, only novel, Lines in the Sand (Penguin), was published in 2000. But with striking deliberation she uses many of the fiction writer’s skills in this book, perhaps less to ensure readers’ interest – though she achieves that in spades – than to bring Jonathan’s life, and life with Jonathan, into full three-dimensionality. This struck me with particular force when I was talking about the book and about writing this essay to a much younger writer friend. I had been speaking about Jonathan and Anne and the poignancy and commitment of their relationship for several minutes when my friend interrupted to ask, ‘Is it fiction?’ My answer was rapid and possibly a little fierce: ‘No! It’s true, every bit of it.’ And perhaps that is one of the primary wonders of this wonderful book: that it is true; that Anne-the-mother could bear to tell it; that Deveson-the-writer could utilise a deceptive simplicity of language alongside tension, dialogue, ‘character’ creation, sensual recall, depth of enquiry, credible complex relationships – all the ‘tricks’ of the fiction trade – to demonstrate its truths and ensure that they would, to us, matter. As with all fine writing, there are universals here too, but we are left most markedly with the experience of being changed by a deeply personal, once-only story of one particular family, one particular mother, one particular son and brother.
It is clear that it would never have been an easy book to write. Its depth of thought and care preclude that. At one point Anne protests, ‘I do not want to write this book. I find it painful… It scratches old wounds so they have no chance to heal. I am sick of the word “schizophrenia”. I am sick of madness.’ Despite that, she does write. She does campaign. She does educate. She creates meaning where it may be tempting to see meaninglessness. She also repeatedly saves other families of schizophrenia sufferers from feeling that they may be the ‘cause’ of their loved one’s illness (a view promulgated for decades by many within and beyond the psychiatric profession), or that in their response to this illness, and the havoc it causes in family relationships, that there is a credibly ‘tough’ and correct way to respond.
Reading and re-reading her words, we see the authentic ‘toughness’ of any family that shows to their loved one on a daily basis a degree of loyalty, care and kindness that challenges and strains their every resource. ‘Tough love’ – meaning a hardening of heart, turning one’s back, urging self-responsibility onto those whose thoughts are wildly confused – used to be widely advised, especially by those eager to wipe their own hands of the chaos that mental illness brings with it. Anne’s bitterness about this is naked. For it is also this shallowness of judgment, barely masking indifference, that drives the inadequacy of much of what passes for ‘help’ – or excuses help’s absence. Addressing the issue of ‘tough love’ advice to other parents of adult children with schizophrenia, Anne writes, ‘You and I know about it …and all the other thousands of parents who are told to put their mentally ill children out of home, in the naive belief they will learn to cope because they have to.’
In 2007, Deveson wrote an afterword to her book in which she reflects with cautious optimism on improvements in the treatment and understanding of this complex illness. Yet a diagnosis of schizophrenia remains immensely serious. This is an illness that is extremely hard to bear. It disconnects sufferers from those they need most. SANE Australia reports that ‘people with schizophrenia are 12 times more likely to die by suicide than the general population’. Where treatment is inadequate or non-existent, quality of life is severely compromised. This means that all warning signs must be heeded. These can include a loss of social contact, poor self-care and hygiene, sleep difficulties, irritability and difficulty coping with daily problems, paranoia, excessive religiosity, grandiose or delusionary thinking, and talking aloud to oneself.
Early treatment makes a significant difference to outcome and to maintaining precious familiar vestiges of identity. Families may understandably hope that their adult child’s concerning mental state or behaviour is simply ‘adolescent’ or ‘a phase’, but when there is any chance that these symptoms are co-existent with alcohol and drug use then that wishful hope – as Tell Me I’m Here so graphically shows – must be faced so that effective help can be sought.
‘Help’, though, remains contentious in societies like Australia where funding for hospital and, especially, community mental health services is grossly inadequate. The florid, so-called ‘positive’ symptoms of the illness are now better treated pharmacologically than they were during the years of Jonathan’s illness. However, the social, cognitive, relational and deep-seated ‘self’ issues that radically undermine a person’s identity and, therefore, their capacity to feel integrated and effective in a world beyond their own, are much less likely to be adequately addressed. In many instances, they are not addressed at all. The costs of this are immeasurable.
‘Tell me I’m here,’ is a phrase first used by Jonathan. It’s the most poignant of cries for recognition of his reality and also, perhaps, for some semblance of that feeling of ‘solid ground within’, which Jungian analyst Marie-Louise von Franz identified as fundamental to an experience of safety that can arise only from the inside out.
From the outside in, Anne did all any person could to tell her son that he was here, that he was loved, that his life mattered: that he was more than symptoms, more than illness. Every page of her book is testimony to that. At one level, it was not enough. It was not enough to keep Jonathan alive to benefit from newer drugs that he might anyway have refused to take. Simply, it was not enough to keep Jonathan alive. And yet…through the telling of a son’s story, and through the sharing of her own story, Anne gives Jonathan a continuing, dynamic presence. She also demonstrates as convincingly as any writer could the power of story. Using their lives, circumstances, emotions, triumphs as well as sorrows, she ensures that we know, care and feel who was there, who is there. In doing so, she writes a tale that is theirs – Jonathan and Anne’s – but, in its richness and ripeness and in what it tells us about hope, love and life as well as illness and death, it’s also ours. A reader could not ask for more.
Center for Early Detection, Assessment and Response to Rish, <http://www.cedarclinic.org/index.php/understanding-early-psychosis/early-signs-of-psychosis>. This explains the early signs of psychosis with admirable clarity.
Richards, K 2013, Madness: A Memoir, Penguin Books, Australia. An award-winning account of living with a psychotic illness, written by a woman who is both patient and a trained doctor working in medical research.
Solomon, A 2012, Far From the Tree: Parents, Children and the Search for Identity, Vintage, England. A substantial section on families which have at least one member suffering from schizophrenia also brings readers’ attention to urgent questions of identity, prevention and treatment.
Jeffs, S 2010, Flying With Paper Wings, Port Campbell Press, Victoria. A personal account of living with schizophrenia by a published Australian poet.
Saks, E 2007, The Center Cannot Hold, Hyperion Press, New York. A widely-admired personal account of schizophrenia from an American writer and scholar.
Stephanie Dowrick has had a richly varied career as a publisher, social commentator, psychotherapist and writer. She completed a research doctorate on the visionary poet Rainer Maria Rilke with the Writing and Society Research Group at the University of Western Sydney, and has written two best-selling novels and two books – Creative Journal Writing (Allen & Unwin, 2007) and In the Company of Rilke (Allen & Unwin, 2009) – that reflect on writing, reading and literary criticism. She is best known for her books on how we might live with greater happiness, insight and social responsibility. These include Intimacy and Solitude (Random House, 1991; 2002), Forgiveness and Other Acts of Love (Viking, 1997), The Universal Heart (Viking, 2000), Choosing Happiness (Allen & Unwin, 2005) and Seeking the Sacred (Allen & Unwin, 2010). Her most recent book is Heaven on Earth (Allen & Unwin, 2013). She currently teaches for the Faber Writing Academy in Sydney. www.stephaniedowrick.com