13 April 2006
[In 2004], a [city council] worker found my son lying almost dead in a park, and took him to the [hospital], for which I am eternally grateful. Our son woke up in the cardiac unit relieved to be alive. In subsequent months we have struggled to get him the help and support he needs to rebuild his life and could have got him appropriate help a lot faster if there were some agency and help given on discharge from the [hospital], outlining the formal and informal avenues of help for young people with mental health issues. What has saved our son has been the help from non-government and private individuals: his mental-health savvy friends who are not afraid to admit him to hospital when he is unwell again; his brother who having done a Red Cross Mental Health First Aid course, got him help before things went bad; ARAFMI for telling me what’s out there; and the newly-opened Aspire Pathway to mental health for suggesting ways to involve his GP.
The [hospital] seems to be able to do nothing but keep young people in a holding pattern until they are well enough to go back out into the community that they are disengaged from.
Psychiatric medicine in total isolation from community support is worth little when the community into which one is discharged for ongoing care and treatment has no coordinated services to serve that vulnerable person. On discharge one would expect some kind of
leaflet or typed list of community services to go to or a list of crisis line phone numbers at the very least. Not just a barren bit of cardboard with a list of phone numbers for diabetes and veterans affairs and the pencilled time of an appointment with a doctor in the distant future.
In the past year thank God we have been lead to find grass-roots support services by sheer perseverance. In the process months of our son’s life have been wasted and more damage has been done.
“Please will you write to the papers about all this?” said a
psychiatrist to me when I told him some of our previous experiences of the lack of joined-up services here.
Early intervention is something lavished on cute babies, but it seems our youth are expendable in the eyes of policy-makers: federally there is no minister with portfolio responsibilities for youth affairs; and to my mind, youth are discriminated against and feared, ignored and blamed, and left to manage as best they may in a health system that at pays no attention whatsoever to the mental health of youth beyond a certain age.
Listening to my story, a specialist commented to me, “Your son would be OK in this State if he were a horse ...”
4.1.2 “The clinical gaze”
Foucault refers to the “clinical gaze” (sometimes to an “observing gaze”) explaining the fairly recent belief in its power expose a hidden truth, a belief which has become a myth, or a metanarrative, one that has allowed for the birth of the clinic and for the way we regard the clinician as our forebears regarded the “seer” (adapted from Shawver, L. 1998. Notes on reading The Birth of the Clinic, retrieved 12/14/06 from http://postmoderntherapies.com/foucbc.htm).
We are sitting in a small office with three strangers, psychiatrists complete with clipboard notepads. Only one spoke, all three stare at my husband and me.
Frankly we are puzzled by your son. We cannot tell at this stage if he is schizophrenic or if he has bipolar disorder or schizoaffective disorder – these conditions take two years to diagnose correctly.
Throughout this interview the psychiatrists avoided speaking to our son, or even looking at him. It was as if he were not there. This distresses me and I try to include him in the conversation each time I’m asked a question. I’m at sea anyway: my son is opaque to me.
I used to think the word opaque meant transparent, and pictured “opaque” as a word based on opal, that you could gaze into. To this day, I find it hard to come up against the blank meaning of the word. Calling my son “opaque” serves to describe the huge ambivalence I felt towards his medical problems: I both understood them and was completely baffled at the same time. I could feel his discomfort and pain, and at the same time I was stumped as to what it was or what caused it or why.
He has had a psychotic episode, definitely, but we cannot work out why, continued the psychiatrist looking into my eyes for answers, as if I would know.
Please, speak to him. He is sitting right here, I burst out, frustrated at how my son was not being included in this conversation.
I think I have obsessive compulsive disorder, François said. He spoke out the words as if he were spitting out a bitter pill.
At our next meeting together with the medical staff, the atmosphere had completely changed.
Your son is very bright, the psychiatrist beamed at us. Yes, we know.
We asked him to give us a word beginning with the letter “C” and we had to use a dictionary to confirm the word he gave us even existed, he laughed.
But the really exciting news is that he has diagnosed himself! He is right: he has obsessive compulsive disorder – OCD – and this explains everything.
There was an air in the room of things having been done, accomplished now: he had a diagnosis, a label. The clinical gaze had performed its magic.
As the psychiatrist explained OCD and its manifestations, all I could do was go back over recent times when François had refused to go into the back garden or have anything to do with our dogs, and how he had insisted on repeated occasions, that we all take deworming tablets and how frustrated he’d be when someone in the family had refused to do so. We knew only too well his habit of throwing out any food that was past its use-by-date…
Where’s the cinnamon?
Mum! Its use-by date was years ago! The use-by-date police.
However his OCD was more pervasive than this, we learned now. Obsessive thought patterns played havoc with his own very beautiful maths mind, his music
mind. He’d see patterns everywhere, an ability aided by a photographic memory. Some of his obsessions were easy enough to understand: a keen observer might notice he did not step on the cracks in the sidewalk but the silent computations in his head were invisible. He was constantly scanning the landscape for numbers. Driving, he’d scan car number plates, adding up the numbers to see if they were divisible by 4 – a number he was obsessed with, and the square root of 2.
During ordinary conversations, François would count the number of syllables of words spoken to him as well as the number of syllables of the words he spoke in return. His taciturn manner on social occasions now took on a different meaning.
Artefact 8: “Two letters per syllable” (transcription of a hand-written note, circa 2004).
Two letters per syllable ve ti na ri an se cu ri ty am er ic an op er at or in ti ma cy ce re mo ny
For François, this slide into patterns was hard to counter, yet he would manage his OCD with a determined patience. If it got the better of him, he would come to me
and say, Please would you mind pandering to my obsession and buy some deworming tablets? I know it is irrational to ask you this, but it will help me cope. I would joke with François that if I did him this or that favour, he must remember it and pay me one extra visit in the old age home one day. We both found this funny – and easy to agree to, me knowing I would never go to an old age home, he knowing who knows what about his own intentions for his future life. If I complied with his requests, other family members would baulk at taking the tablets, having done so perhaps only two weeks previously. They also wisely suggested that accommodating François’
obsessive fear would only work to entrench it – a fact I now acknowledge is borne out by research.
By now, he was seeing a psychiatrist regularly, and he would try hard to practise aversion therapy by going outside to pat the dogs or take them for a walk. However there were subsequent hospital admissions: During a two-month stay in hospital in 2006, I would drive him to medical appointments. I came to see the car was a vehicle for conversation, even if it was also the way of policing our son’s freedom in these brief excursions from the locked ward. Sitting in the car, watching seagulls at the beach he talks of how he had thought of studying engineering. But he is looking forward too: Can you go the Co-op Bookshop and buy me the Dictionary of Philosophy please? I want to learn about Plato and Aristotle. They don’t teach us that at university…
I buy it for him – and take it to him in the psychiatric ward, along with a blue jacket.
A psychiatrist working on electroconvulsive therapy (ECT) and transcranial magnetic stimulation therapies that target specific areas of the brain advised us that ECT treatment was urgent, because François had such very severe depression. In the mid-2000s, such device-based treatments for affective disorders such as OCD were still relatively rare. Funding at this particular hospital for this treatment was about to be discontinued. An opportunity for François was lost. Ten years later, a randomised control trial by Feng et al. has shown that transcutaneous electrical acupoint
stimulation “can be considered as an effective adjunct intervention for OCD” (2016, p. 30).
François said his own informal research had shown which drugs, particularly opioids, ameliorated his OCD symptoms, that he knew the best way to cure himself was through the use of opiates. Covertly, François supplemented his medical prescriptions – antidepressants and antipsychotic medication – with his own concoctions of medications which he ordered online and without our knowledge. Once we discovered this, however we developed a habit of waiting for the postman each day to intercept any parcels from overseas. He avoided marijuana or any illicit drugs that were reputed to bring on psychosis, rationalising that opioids did no harm to his mind. So began his secretive and lethal dance with opioid medications. He began to buy over-the-counter codeine products available at that time as capsules coupled with paracetamol, and in the middle of the night while I slept, he spent hours making a deconcoction to get rid of the paracetamol and avoid kidney damage, he said later.