John, you are not forgotten

"The trauma survivor is silenced three times; firstly by their family, secondly by society and thirdly by bio-psychiatry. Wouldn't this make you angry?"

About This Blog

I wanted to create something beautiful for a passionate and soulful man who opened my eyes and my heart... because I wanted to celebrate our love with the world... a love so strong, a love denied, a bond that has survived the unspeakable; labelling, drugging and incarcerating. John reawakened my soul. I am gathering love for him. I no longer wish to be afraid of the trauma truth. I long to speak the poetry of my heart. This blog gives me and John's family and friends a voice in a legal system and a society that has taken our voice away and given exclusive rights and total control over John and his future to psychiatry. We live in an unenlightened world which translates "emotional distress" into "mental disorder". It's time to celebrate diversity and the normality of madness; visions and voices, fragility, sensitivity, passion, overwhelm, the language of the soul, the symbols of the soul and the mythic and metaphorical gifts from the soul. Each of our own unique and creative responses to trauma deserve to be honoured.

"Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
when the silence of absence deepens."

John O'Donohue

Free John

Free John
Five Long Years

Monday, August 8, 2011

Trapped in a System Without Hope

Irish Examiner
Friday, August 05, 2011

Grainne Humphrys has spent years fighting a mental health system that she claims is doing her former partner more harm that good

JOHN HUNT turned 30 recently, but spent his birthday — like the previous five — locked up in a psychiatric unit in Cork city.

A physically healthy man when he first went into the mental health system, he is now a shell of his former self due to the quantities and varieties of medication he has been prescribed over the years in an attempt to make him better. His teeth and gums are rotten, he gets the shakes, he is at times incontinent and his passion for life appears to be gone.

The story of John’s "incarceration" is a complex and heartbreaking one, and one to which there are no easy answers. But what is clear is that the medical model of treatment alone is no longer acceptable for cases like John — and for a modern mental health service.

Gráinne Humphrys, John’s former partner and the mother of his son Joshua, has also felt locked into this situation for almost six long years.

Campaigning tirelessly and employing powerful language to describe the "chemical restraints" used to control a non-compliant patient — as John is at times — she has garnered much attention for his case by conjuring up images of a lost soul imprisoned against his will.

Broken from the years of campaigning, battling and heartache, Gráinne recently reached her brick wall and, after much consideration, ended her relationship with John.

"The situation was making me unwell and holding me back," she said. "I had two opponents: the system and John. I need to focus more on our son Joshua and myself. It took me a long time and it was very painful, because I really did love him and still do. He is the father of my son and I will always advocate for him, but not at the same level.

"We had a telephone relationship for five years and he still rings. He is quite lonely at times."

The reality is far more stark, and far less simple. This is a man locked up 24/7 in a psychiatric institution because there is nowhere else to try and rehabilitate him.

He lives on a ward in Carraig Mór, a standalone unit on the outskirts of Cork city which was opened to facilitate patients who were moved out of the Victorian Our Lady’s Hospital. John’s home, the ward, is part of the Psychiatric Intensive Care Unit (PICU).

His family must visit him in a tiny room and are not allowed past the locked doors.

In its most recent inspection report about Carraig Mór, the Mental Health Commission said it was "obvious" that residents were remaining for too long in the PICU due to the lack of a step-down unit and adequate rehabilitation.

"This was despite [the] best efforts of staff to provide rehabilitation," the report says, adding that "the decision by the Health Service Executive not to have a psychologist on a forensic team and in a PICU where behavioural problems are common is incomprehensible and short-sighted and was not in keeping with best practice".

Gráinne firmly believes John is a victim of this "short-sightedness" and an old-school model of care.

"There are new ways of working with people, but it has not reached John yet. I know it will come in time, but for him, it might be too late. I wish he had had a different response to his distress than just to lock him up and force-medicate him. I feel John has become chronic, because of the response he got. I know he was pretty bad and, at one point, he was deemed a danger to himself, but that was a just a cry for help, but the problem is, once you are labelled, you are dogged by prejudice," she said.

"The way I see it, trauma and loss, amongst other factors, form the bedrock of John’s problems — his so-called attachment disorder and paranoid schizophrenia."

Gráinne believes the truth is more complex than the labels.

"Basically, he grew up with an alcoholic, violent father, and mother with little supports. His four-year-old brother drowned when he was 11 and, like many other troubled young men with low self-esteem, he ended up taking drugs and fighting. And as is classic with these things, the break-up with his first long-term girlfriend sent him over the edge.

"His experience of psychosis did not come out of the blue, there are deep-seated and very painful issues which have never been dealt with."

John’s journey into the abyss has meant five-and-a-half years detention in Carraig Mór. Only his doctors have the power to release him but, as he is not getting any better, this has not happened.

In a last-ditch attempt to get him out of this rut, Gráinne wrote to Carraig Mór at the start of the year stating: "I am unhappy that John has spent five years in Carraig Mór, but I know it is a complex situation. I do take on board that your lack of a step-down hostel and a psychologist greatly impacts on your ability to rehabilitate John. So I shall narrow my complaints down to more specific bullet points:

* "I am upset that John has been over-medicated for such a long time. I am worried about his internal organs, in particular his kidneys. I am also worried that he will develop diabetes and other well-known adverse effects from long-term drug treatment.

* I am upset about his teeth becoming rotten due to the continuous use of liquid largactil. I know his insistence of smoking endless cigarettes and drinking Coca-Cola and refusing to clean his teeth contributes to this too and I understand that this is John’s issue.

* I am upset that I had to go to the lengths I did of creating a campaign which involved media and politics in order to get a day out with John. That fight took so much out of me, and me and my children suffered as a result.

* I am upset that we have not been permitted any overnights for years. As a family, we have lost so much in terms of intimacy and time together. Joshua has missed out on a father and we have conducted most of our family relationship in a locked visitor’s room, which has been devastating."

Gráinne also wrote about her disappointment over the lack of feedback to a proposed solution.

Brian Hartnett, a well-known campaigner and founder of Hearing Voices Ireland (HVI), a group which provides support to people who hear voices, also wrote to Carraig Mór offering to work with John on a one-to-one basis and mentor him.

This was an attempt to prevent him from becoming further institutionalised and to look at his problems in a unique way.

Mr Hartnett’s proposal, however, was rejected and with that went Gráinne’s last hope.

She now feels it is almost too late for John. He has become entrenched in the system, the drugs, and a life of not having to face up to the deep pain that caused his problems in the first place.

"Yes, we need to hold someone in a safe space but that person needs to be guided through to the next step and shown they can cope on their own and take responsibility," she said. "Even if you opened the door for John tomorrow, he would be too afraid to walk out. And that’s the tragedy for us, for me and for our son and for John’s family. We feel we have had no say in what happens to John. The problem now is that he is totally institutionalised. He is entrenched."

Gráinne feels those who work within the system are entrenched too. "I know some of them are on the same page as me but their hands are tied too.

"It’s higher up that is the problem — the mental health law and the lack of resources."

Gráinne maintains emotional distress should not be defined as a mental disorder as this is an injustice to those experiencing it.

"If we view the individual in crisis and fail to see them in context of their situation we are failing them. We blame them for having problems but those problems have to come from somewhere."

There is another side to John’s story. And that is from the point of those who look after him in Carraig Mór. They know him as a difficult patient who can lash out for no reason. Incidents have caused staff to be out of work following his outbursts. There is a view that John does nothing to help himself and is uncooperative. This behaviour, of course, only serves to reinforce how the system views John — as someone who needs to be sedated and locked up.

But there are serious questions as to whether the system further damaged John, and others like him, who are on medication long-term, with little in the way of counselling or psychological interventions.

Mental health campaigner John McCarthy asks if it’s okay to lock someone up for five years and contain them on a cocktail of powerful drugs?

"John Hunt is 30 he has been locked up and force-treated ‘in his best interest’ for the past five and more years. I do believe if I was locked away at 24, without trial before judge or jury, from my family and friends, I would lash out at everybody around me.

"Imagine if you had never been allowed to run and play with your own son. Not been allowed to love the woman you loved — I would lash out. Not allowed to go for a pint. I would lash out. Not allowed to sing. Not allowed to live life. I would lash out. No matter how often they told me ‘it is in my best interest’.

"Who knows the real reason that John Hunt has for getting angry and is lashing out? Why he is so restless and discontented in his spirit? He is not a criminal, yet he is locked up.

"His family are tired and at their wits end. Those on the staff in Carraig Mór have no real answer. They can continue to pile on the medication, sedate him, control him, but they cannot cure him, they cannot bring peace to this man’s spirit," he said.

And sadly, although John’s story is extreme, its components are not unique.

Another similar case is that of 40-year-old Morgan Pritchard.

Mr Pritchard was detained at the Lakeview Unit at Naas General Hospital in May, after going through a heroin withdrawal.

He has since been diagnosed as a paranoid schizophrenic, which his family are disputing.

His sister, Sarah Duffin, who is campaigning to have her brother moved, maintains his condition appeared to deteriorate after being put on anti-depressant and anti-psychotic medication.

"There has been a change in Morgan’s behaviour and worsening of his symptoms since being put on these new drugs. There are many informed studies on this medication and it has very dangerous side effects, particularly when given in high doses and in conjunction with an anti-depressant," Ms Duffin said.

"We have nothing against Lakeview or any of the staff. But we do not agree with Morgan’s treatment and want him to be assessed by someone else.

Sarah says it is "astonishing" that Morgan’s family have no say in how he is treated.

"We have to speak out for Morgan and highlight these issues — what about all those who don’t have family to intervene or can’t speak for themselves because they are so drugged up on medication?"

For families like these, the system is not working. If they cannot get Morgan out of Lakeside soon, are Sarah and her family facing into a battle like Gráinne’s?

"I have gotten to know the nature of the beast and I see how complex it is," Gráinne says.

"But the system has worn me down and I feel very hopeless about his situation. I would hope to one day see John living in the community and that he will come to a place where he can slowly get off his medications..

"At the moment he is frozen, blocked and stuck and I can’t see that changing any time soon. I just hope I am proven wrong."

This appeared in the printed version of the Irish Examiner Friday, August 05, 2011

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Monday, August 1, 2011

Guan Yin Prayer for John

"More than I could stand... "

I am devastated by the death of Amy Winehouse. Amy's album 'Back to Black' has been a source of great comfort to me over the last few years in the unusual situation I found myself in with an incarcerated partner. Of course, Amy knew this terrain well.

Her music reminded me of the fragile yet fierce nature of love. Amy was not afraid to stand by her man and fight for her man, just as I had, through thick and thin; through drugs, infidelities, incarceration and assault charges. She gave me great strength and reminded me that the very love that had reawakened us could also destroy us and the part we played in that too. Great love was more than we could stand. When it comes to soulmates, the tragedy seems to be, you can't live with them and you can't live without them.

John introduced me to Amy's music with her album 'Frank' and with her death, it feels like the end of an era. 'Back to Black' was our album, the soundtrack to our passionate but damaged relationship that struggled to survive "over futile odds". Above all, Amy knew the loneliness of loving a man that your family and friends relentlessly dissuade you from loving. Feeling this prejudice, dissaproval and bad will was a painful and lonely place that I knew too. I've lost my gutsy and loyal soul sister.

Saturday, June 11, 2011

Mad Pride - The power of Love

Kila at Mad Pride Day in Cork, June 2011. Celebrate Difference, Stop Loneliness.

Sunday, May 22, 2011

The Love That Will Not Die

'Spiritual awakening is frequently described as a journey to the top of a mountain. We leave our attachments and our worldliness behind and slowly make our way to the top. At the peak we have transcended all pain. The only problem with this metaphor is that we leave all the others behind - our drunken brother, our schizophrenic sister, our tormented animals and friends. Their suffering continues, unrelieved by our personal escape.

In the process of discovering bodhichitta, the journey goes down, not up. It's as if the mountain pointed toward the centre of the earth instead of reaching into the sky. Instead of transcending the suffering of all creatures, we move toward the turbulence and doubt. We jump into it. We slide into it. We tiptoe into it. We move toward it however we can. We explore the reality and unpredictability of insecurity and pain, and we try not to push it away. If it takes years, if it takes lifetimes, we let it be as it is. At our own pace, without speed or aggression, we move down and down and down. With us we move millions of others, our companions in awakening from fear. At the bottom we discover water, the healing water of bodhichitta. Right down there in the thick of things, we discover the love that will not die.' - PEMA CHODRON

I opened the book at the very chapter I needed to read last night. This is why my love for John has been so challenging and so challenged. He remains one of the greatest teachers in my life. This is why he will always be the unforgettable fire in my life;

Sunday, March 13, 2011

Alchemy on the Wards

Lyrics: Gráinne Humphrys
Music: Mary Maddock
Vocals: Geraldine Byrne Harmony Mary Maddock
Backing: Kevin Foley: guitar; Mary Maddock: piano.

There’s alchemy on the wards
There’s a revolution in my soul
There’s a wolf in my doorway
And sand between my toes
And sand between my toes

We’re meeting at the frontline
Do we have to go to war?
All we want is change, a new way
All we want is love, not force

There’s a lover in my heart
And children at my feet
There’s a mad woman in every woman
And we’re taking to the streets
And we’re taking to the streets

We’re singing in the corridors
We’re hearing nature’s call
There’s a goddess in high office
Tearing down the walls
Tearing down the walls

She’s caught up in red tape
And she’s cutting through it fast
We’re dancing in the changes
And climbing up the mast
And climbing up the mast

We’re drawing a new map
From disorder to distress
Survivor to thriver
A language to undress
A language to undress

We’re throwing out the labels
We’ll throw away the keys
Chemicals, arrogant white coats
No more authorities
No more authorities

We’ll create a paradigm
Of heart-led evolution
We’ll dance in step, sing in rhyme
Our love revolution
Our love revolution

All we want is freedom
So we’re taking to the streets
Our last great mad movement
For civil liberties
For civil liberties