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Isolated by an alternative reality
Erratic behaviour can lead to longer periods of incarceration than those handed to violent criminals
This article was originally published in the Vancouver Sun on Sunday April 19, 2013.
Last month Joe Segal, whose philanthropy is helping to make possible a new $82-million mental health and addiction treatment centre in Vancouver General Hospital, put an unerring finger on one of the most dreadful aspects of mental illness: loneliness.
The occasion was the official announcement that demolition of the old Willow Chest Centre would begin later this year to make way for the new complex, named in honour of Segal and his family, and it was the usual fanfare with politicians and hospital executives making speeches.
Segal, when invited, made the shortest and most poignant observation of all.
“When you hear about people with heart and stroke problems you hear about something that is visible. Because when people walk around with heart problems they walk a little slowly, with cancer they walk around in pain.
“When you walk around with mental illness, you walk around alone.”
Listening to all this in the rotunda of VGH’s Blusson Spinal Cord Centre was Mel Ackerman and his wife Ellen Flanders, for whom those words would have resonated because not far from where they were sitting and in one of the secure wards reserved for the mentally ill in the Willow Pavilion was Ackerman’s daughter.
This was on March 15 and she would be released a few days later after being detained for six months.
LONELY JOURNEY BEGINS
Her illness began nine years ago and it’s her journey through the mental health system – the institutions, the lockups, some of which her parents describe as vile – that has made the couple such ardent supporters of and advocates for the new facility.
Ellen, her stepmother, is on a Vancouver Hospital Foundation fundraising committee that is attempting to raise the final $10 million of the $13 million it pledged for the new centre to complement the Segal family’s donation of $12 million. DONATE
The provincial government has committed $57 million and the new centre should be open in 2017.
“The mental health facilities in B.C. are aging and some of them are shocking,” said Ackerman. “We’ve seen firsthand how bad they are, which is why Ellen wanted to be involved in seeing the new facility get built.
“There’s a significant amount of mental health issues in society and people being hospitalized deserve a better level of facility. I find the doctors and nurses very good and they want to help, but they are handcuffed by the facilities and, in my daughter’s case, because she has been an escape risk, she ends up in the worst of them. Some have been horrific,” he said.
His daughter has been in just about every mental health facility in Metro Vancouver from Riverview and Colony Farm to her latest stop in the Willow Pavilion.
She is 37 and was a normal teenager, said her father. She is intelligent, ambitious, has a degree from Western University and has held a number of marketing jobs.
“We thought everything was going well until she became involved with a young man in a minor way nine years ago and that’s when the illness became apparent,” said Ackerman.
What followed has been a nightmare.
Ackerman’s daughter has been diagnosed as suffering from schizoaffective disorder.
Dr. Raymond Lam, medical director of the Mood Disorders Centre located at UBC Hospital, describes schizoaffective disorder as one of the “toughest diagnoses” to deal with.
“It’s an in-between diagnosis. We have schizophrenia, which is a chronic condition in which psychosis is the prime condition – hallucinations, delusions or false beliefs – while ‘affective’ is another word for mood.
“People with schizophrenia do not normally display mood symptoms and don’t have clear-cut depressions or manias. So schizoaffective disorder is a clustering of both conditions and is tricky to treat because patients often need a combination of medication,” said Lam.
At the core of the woman’s illness is the belief that her former boyfriend loves her and is waiting for her to create the perfect romantic moment for them to become engaged and begin life together.
The repercussions from her attempting to do this have resulted in her receiving a restraining order preventing her from having any contact with her former boyfriend and numerous arrests and incarcerations for either defying the order or attempting to carry out her mission.
She has a compulsion to board aircraft so she can meet him at some imagined location and this has led to many attempts to evade airport security resulting in her being stopped and arrested. On two occasions she was arrested for running the U.S. border in a car.
“She believes she is on her way to see him. She has this belief that he is running her life and that they will eventually get together,” said her father.
Once she got as far as France – on that occasion she had purchased a ticket – and was heading to the Beijing Olympics to meet him, but was removed from the plane in Paris when her father cancelled the ticket.
“She has been taken off several planes in Canada because of bizarre behaviour, which usually involves her making rambling speeches, and has been hospitalized in Toronto and Winnipeg,” he said.
She is not violent and yet she has lost more of her freedom in the past nine years (being incarcerated under the Mental Health Act) than many criminals who have committed serious and violent crimes.
Because she is intelligent she finds it easy to escape from mental health facilities, even those supposedly secure.
“When she’s in locked wards she’ll find ways to go out with kitchen staff, the cleaners or the painters. At Riverview they took away her shoes. She was there for months wearing just socks. She still escaped.”
“Eventually she was in a locked ward with no balcony, no windows that would open and, because she was such a flight risk, they didn’t know how to control her. It took three months of us campaigning to get them to let her have some fresh air and exercise, which she craves.
“So they would tie her in a wheelchair, take her down to a small garden area where she could kick a ball around with one of the attendants, then tie her up again and take her back. It was brutal. She’d say ‘why wouldn’t I want to escape from that?’ And from her perspective you could understand it,” said her father.
“We don’t want to antagonize her but we can’t support her delusion,” he said.
She is resistant to taking medication for her illness.
“The medication doesn’t take away the delusion but it gives her pause when she’s considering acting upon it,” said Flanders. “But as soon as she goes off her meds the cycle will repeat.”
Doctors want her to use a “drug of last resort” – clozapine, said her father- but she refuses to take it.
“They feel it might be helpful. But unfortunately it needs to be taken orally daily and they won’t force people to take it,” he said.
Ackerman’s daughter (her name is being withheld at her request) was interviewed a few days before she left hospital to live on her own.
The arrangement was that members of the ACT – Assertive Community Treatment – team were to come by each day to see her and ensure she stays on medication.
To understand what Segal meant about loneliness consider this: There are seven billion people in the world and not another single person shares this woman’s view of reality.
The world she’s created she occupies alone and when it begins to tilt, she can’t go to the police for help, or the medical profession, or a rabbi – and most searing of all, she can’t find solace in her family.
All the props that keep other people afloat are denied her.
As for her family, they, too, are denied the consolation of being able to offer sympathy and comfort, as would be possible if the illness were purely physical.
Her world became chaotic, she said, after she met her former boyfriend.
Asked if she was ill before then she replies: “I don’t believe I am ill now.”
Her life deteriorated after he said they should “slow things down.”
“It really confused me because he seemed to be giving me both sides of the story and I didn’t know which one to believe,” she said.
She would eventually believe that this was all a ploy and that he wanted her to meet him in some exotic location for the perfect ending to this period of turmoil. Then they could look back and remember a story they could tell their grandchildren.
In 2004 when the delusion became manifest, her father took her to a psychiatrist and she was committed.
How did that feel?
“Horrible, I cried right off the bat.”
The doctors and her family were telling her she was sick. What was she telling them?
“It was just a crazy love story, that he was in love with me and he believes confrontation brings people closer together and he wants me to confront him.”
YEARS OF LIFE LOST
Since 2004 she has spent four years of her life – on and off – locked away in psychiatric wards.
“Of all the things I’ve done, I’m a misdemeanour at worst. I’ve never done anything violent and yet I’ve lost years of my life being locked up doing nothing, just waiting around to see doctors every two weeks. I mean, I was in Riverview and I didn’t even get fresh air and if you cry or get upset that you’ve lost your freedom, they lock you in a seclusion room. It’s just a jail cell with a mattress on the floor and a stainless steel toilet and they strip your clothes off. I’ve had it happen to me and it’s horrible.”
When the police came to her third-floor apartment last year, she was so scared of being confined again she fled through a window and attempted to climb down the vines attached to the outside wall, but fell, broke her arm and injured her back.
As for all the treatment and medication she has received “it hasn’t changed my mind one iota in nine years.”
“I feel exactly the same way, in fact more strongly than ever before, and it’s no way to treat a human being. It’s inhumane.”
However, she knows that if she wants to retain her freedom she must conform to what society in that other reality demands.
“I want to protect my freedom. I don’t want to get into trouble again so I don’t want to do anything crazy.”
Does she feel lonely?
Because nobody believes her?
“Yes. I’m the only one who believes what I believe or admits to it. I know other people agree with me but they are not sharing that with me yet.”
Two weeks after being released from hospital she sent the following email:
” … Unfortunately, I’m back in hospital as I tried to get onto the landing of the Helijet (in Vancouver Harbour) on Monday. They have me trying the wonder drug clozapine, against my will. If I don’t take it they’ll lock me up in seclusion room indefinitely. I am not happy but thought I’d give you the update.”
Make mental health matter
March 22: Community leaders and fundraising. Realtor Bob Rennie is the most recent donor to the VGH & UBC Hospital Foundation
March 29: Post traumatic stress disorder (PTSD). Carolyn Cross survived the Richmond plane crash in October 2011 and now helps citizen first-responders deal with the emotional aftermath of accidents and tragedy.
April 5: A Vancouver broadcaster and a young Victoria musician share their personal battles with depression and suicide.
April 12: Mood disorders. The symptoms, impact, science, advances in treatment, and tips on how families can manage it.
Today: A patient’s perspective. How a patient’s environment plays a vital role in the therapeutic process.
April 26: On the street. Mental illness is the single biggest problem facing police on the streets of Metro Vancouver.
May 3: In the workplace. Mental illness is now the leading cause of workplace disability claims.
May 10: New drugs and therapies. Successes over the years and what looks most promising in the pipeline.