Category Archives: Schizophrenia

Debunking Another Anti-Psych Myth and Worthwhile Anti-Stigma

 

By Marvin Ross

Another myth claimed by anti-psychiatry advocates is that people with serious mental illnesses like schizophrenia have significantly shortened lives because of the pharmaceutical treatment they get. There is no doubt that psychiatric medications have bad side effects that result in greater susceptibility to physical ailments like diabetes and cardiovascular disease but there is another explanation that is largely overlooked – stigma by medical professionals.

Over the years, there have been a number of studies demonstrating that those with serious mental illness do not receive adequate physical health care. A 2018 study pointed out that There is evidence of inequitable access to and/or uptake of physical and dental health care by those with schizophrenia”.

A 2011 study suggested that there is sufficient evidence that people with SMI are less likely to receive standard levels of care for most of these diseases (Nutritional and metabolic diseases, cardiovascular diseases, viral diseases, respiratory tract diseases, musculoskeletal diseases, sexual dysfunction, pregnancy complications, stomatognathic diseases, and possibly obesity-related cancers) .

A cross sectional survey in 27 countries found that More than 17% of patients experienced discrimination when treated for physical health care problems. More than 38% of participants felt disrespected by mental health staff.”

the latest study published in January comes from Sweden where there exists an impressive database of patients to draw upon. What researchers did was to compare 4536 patients (cases) and 44,949 controls. Cases included patients with reported preventable harm in primary health care and emergency departments from January 1st, 2011 until December 31st, 2016.

What they found was that Psychiatric disease, including all psychiatric diagnoses regardless of severity, nearly doubled the risk of being a reported case of preventable harm. The authors pointed out that a significant reason for this is what is called diagnostic overshadowing. This is a process whereby physical symptoms are misattributed to mental illness and therefore ignored.

Most of us (and I suspect mainly women) have been told that our complaints are all in our heads when doctors cannot find a cause for the symptoms. When someone with schizophrenia reports symptoms, they are often overlooked because of the schizophrenia.

The most egregious example of that took place at the ER at St Joseph’s Health Centre in Hamilton Ontario in 2002. Rusty Potter, a 40 year old man with schizophrenia and asthma was sent to the ER by his family doctor because he had pneumonia. Randy was known to the ER staff because he volunteered at the hospital and his address was a group home for people with schizophrenia. As a result, they assumed his problems were psychiatric despite what he told them. When he was having increased difficulty breathing, a nurse handed him a paper bag to breathe into assuming he was having a panic attack.

Randy arrested and died in the waiting room.

I wrote about this in my book Schizophrenia Medicine’s Mystery Society’s Shame and quoted one of the patient advisors who wrote to the local paper and said that:

persons with mental illness do not obtain appropriate medical treatment. All too often, our clients don’t get access to medical services or their concerns go unrecognized because the symptoms are viewed as part of their illness or they are attention seeking by asking for help.

Dr Miriam Schuchman wrote in another Canadian paper (The Globe and Mail), that medical staff in doctor’s offices or in ER’s may be uncomfortable treating these people.

There goes another anti-psychiatry myth and a stigma that does need to be corrected.

And on another note, the world recently lost one of its key anti-psychiatry advocates in Toronto’s Bonnie Burstow who began an anti-psychiatry scholarship. Ms Brstow received numerous obituaries including the New York Tines 

Twitter, Thomas Szasz and the Channukah Attack

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Image by OpenClipart-Vectors from Pixabay

By Marvin Ross

At the end of December US psychiatrist Allan Frances tweeted that in 1977 he had dinner with Thomas Szasz (The Myth of Mental Illness). Frances reported that he asked Szasz if he would intervene were his child suicidal because of psychosis. He smiled/answered: “I am a father first, a libertarian second”.

Dr Frances responded that “Szasz could hold extreme views re meds/commitment only because he never once treated a severely ill patient”.

Dr George Ikkos replied that “In 1994 Szasz insurance paid $650,000 for negligence to widow of patient with “manic depression” who committed suicide following his advice to stop lithium. The source is a book called Mad Muses by Jeffrey Berman (P110).” Dr Ikkos is an “elected Honorary Fellow of the Royal College of Psychiatrists. The Honorary Fellowship is the highest honour the College bestows” (from his website.)

Also chiming in to this interesting twitter exchange was Dr Mark Ruffalo who provided a link to an interview that Szasz did with Jonathan Miller in 1983. He summarizes:

Szasz concedes that society should treat the gravely disturbed (“mad” or psychotic) person in the same way it treats the person who has been rendered unconscious by an accident, implying support for involuntary treatment in these cases.

The entire interview can be seen below and these comments are made around the 34 minute mark. Prior to that, Szasz states that psychiatrists either lock up the innocent or free the guilty and that no mental illness existed prior to the advent of asylums in the mid 18th century.

I’m not sure what provoked the initial tweet by Dr Frances but a couple of comments before transitioning to Channuka. The initial question asked of Szasz is something that I always ask of doctors when they propose a certain course of treatment or a medication. If this was you (or a spouse or parent) would you still suggest that? We should all do that.

The other comment pertains to libertarianism. Szasz suggests that libertarians would always propose no involuntary action. I’m not sure that is a valid position for libertarians and it is definitely not for a psychiatrist I know who is one. This particular Toronto psychiatrist once told me that no one is as libertarian as he is and he firmly supports involuntary committal and treatment. People have an absolute right to decide their own fate but in the case of someone who is psychotic, he said, their mind is incapable of making rational decisions. It would be wrong to allow them to make those choices when so impaired.

While this twitter feed was happening, New York State and FBI officials were declaring the attack against a Channukah party in New York State to be an act of domestic terrorism and that the perpetrator, Grafton Thomas, would be charged with hate crimes. Of course, we all now know that Mr Thomas is a man with untreated schizophrenia.

It is not a hate crime nor is he a domestic terrorist.

He is a delusional soul who has not been provided with treatment as the mental health advocate DJ Jaffe pointed out in his excellent assessment in the New York Daily News. Jaffe points out that Thomas’ long term pastor could not understand why he had never been institutionalized stating “There hasn’t been anyone who has given a real solution to deal with a grown man who is dealing with schizophrenia, other than ‘Go home and call us if something happens.’ ”

Situations like this are not unique to New York State or to the United States but to Canada as well. Every one of those jurisdictions has examples of crimes committed with and without deaths due to the failure to treat people with serious illnesses.

Of course, one of the key reasons that people do not get proper treatment even if it requires involuntary hospitalization stems from the works of Szasz and all the others who deny the existence of serious mental illness.

What is also equally galling is the rise of anti-semitism and other forms of racism in the world today. While US officials were quick to jump on the Channukah attack as a hate crime, they have seemingly ignored others. In the week before the holidays, there were 4 attacks against Jews in the New York City area plus the assault in Jersey City of a Kosher supermarket according to Bernie Farber. Farber is the Chair of the Canadian Anti-hate Network.

Farber also reminded readers of Trump’s anti-semitic comments at a dinner for the Israel American Council. Faber neglected to mention Trump’s comments after the White Nationalist march in Charlottesville or Rudy Guliani’s anti-semitic tirade as reported by CNN.

Attributing the violent delusions of a man with schizophrenia as a hate crime when the villain is our failure to treat mental illness while ignoring real acts of hatred is a travesty.

I never thought I would ever applaud anything from Boris Johnson or from a Chasidic Rabbi but both got it right. Johnson delivered a very forceful speech on fighting anti-semitism while the Rabbi whose house was invaded spoke out about the need for greater understanding and support between minority communities. “The Hasidic Jews of Monsey must ignore the outsiders who want us to take up arms and politicize our tragedy.”

Psychosis is Not Normal – A Psychiatrist Responds

By Dr David Laing Dawson

This morning I witnessed a taxi pull up to a doctor’s office stopping as close to the entrance as possible. The cabby got out, went around to the passenger side and gently helped an older woman ease her way to the pavement. He then took her by the arm and slowly helped her up six stairs to the front door. He opened the door for her and only left when he was sure she was safely inside. All of this in a cold rain with remnants of snow and ice on the blacktop.

My despair for humanity is momentarily lessened.

But I must go back to a brief history of mental illness treatment as a response to Ms Nanos’ guest blog and some of the comments that it received.

When Medicine had only a few potions and surgeries that actually worked on any illnesses (let’s start somewhere in the early 1800’s) the severely and persistently mentally ill were hidden by their families, left to die in the streets, jailed, banished, punished, or they found their way to Asylums created by religious groups (Quakers, Sisters, Brothers).

Though Medicine had little to offer at the time, doctors were invited into the Asylums to help. These doctors became known as Alienists. (I’m not sure if it was a term of endearment or prejudice)

Fast forward through revolutions, civil wars, the industrial revolution, urbanization, massive population growth, the State taking over the Asylums, and the age of science. Scientific medical advances (the disease model) eventually led to the successful treatment (more importantly the prevention) of many things, of many illnesses other than mental illness, though a scientific approach did lead to a delineation of specific mental illnesses still quite valid today. And of course the Asylums grew along with the urban populations.

All that was tried to treat severe mental illness (from rotating chairs and cold baths to insulin coma and numerous varieties of work, rehab and talking) failed. Though at least through this time (about 1870 to 1950) there were some kinder periods when the Asylums lived up to the meaning of the word, and other less kind periods (wars, economic depressions) when the Asylums (evolving through titles of Asylum, Hospital for the insane, Provincial or State Hospital, to Mental Hospital and Psychiatric Hospital) at least provided three square meals and a bed to sleep in for many who would not otherwise survive.

With so many advances in scientific medical treatment developing, academic medicine (with some exceptions) lost interest in the untreatable population inhabiting the mental hospitals. Religious explanations for their existence (demonic possession for example) no longer sufficed, so it is no wonder, through the 1930’s, 40’s, 50’s, and 60’s, a plethora of psychological, sociological, familial, genetic, and conspiracy theories developed to explain psychosis, mania, depression and insanity. The new Medical specialty, Psychiatry, remained aloof. Academic and private practice psychiatry focused on the worried well, the neurotic, the anxious, the despairing and moderately depressed. They stayed clear of the mental hospitals, with a few exceptions when they brought and applied a variety of psychological and psychoanalytic theories to some wards of these Asylums and failed dismally to make a difference in actual outcome of illness, though probably bringing some improvement to many lives.

But then quite suddenly (1950’s and 1960’s), and mostly accidentally, medications were discovered that actually work: Medications that calm severe anxiety, obsessions and compulsions, that overcome severe depression, that level the profound mood swings of manic depression, that quell delusional grandiosity, and that actually work for the most puzzling and debilitating mental illness of all, schizophrenia.

The second world war was over, good economic times had arrived, our medications worked and we all looked forward to an era when mental hospitals would no longer be needed.

Paradoxically as the medications worked, and many people who otherwise would be living within the shrouds of psychotic illnesses were now functioning as independent citizens, the causality conflict between nature and nurture intensified, as did the calls to abandon the disease model.

Now I should note that Medicine (Doctors) have always over reached. When we have something that works on one problem we try it on another. At least we do this until the studies prove that it doesn’t work for the second problem.

But I think the real reason for this intense anti-psychiatry movement is two-fold: on one hand pharmaceuticals that work to change mood and thought, plus more and more sophisticated ways of watching the brain do what the brain does, undermine that last vestige of hope and desire that each of us is more than “a sloppy bag of mostly water with a limited life span”.

And professional aspirations and jealousies of status and turf.

Fast forward again (2000 to 2020) and we find our fear of psychiatry, plus the aspirations of growing numbers of psychologists, plus politicians jumping on ways to save money, (or shift costs to other jurisdictions), plus identity politics, plus changes in societal attitudes that are hard to fully understand from inside…..have left us in the disheartening position of having a mental illness treatment system worse than it was 40 years ago.

Or, as a colleague warned 30 years ago, we are heading for a time “when the good schizophrenics will get good treatment and the bad ones get none”. By that he meant, if I must translate his words into today’s reality, people with mental illnesses that respond to medication and who remain compliant with treatment and develop enough stability and insight, and have sufficient family and community support will get good treatment and helpful counseling and rehabilitation services, while those who don’t will be left to the streets and the jails.

And he wasn’t even considering the “Recovery Movement” and the plague of euphemisms that give cover for this disgrace.

The other night we had an Opening at the gallery: Live music, glasses of wine, a table of food and a growing crowd of art lovers. Then two young men wandered in. The leader was bundled in bulky parka over a hoody, drooping pants, multiple sweaters of varying length, with wild hair flailing beyond his parka. He was also carrying a very large rock partially wrapped in plastic. The second young man was gaunt, undernourished, stiff in his movements and vacant of eye.

They gravitated to a sitting area and a small bowl of chocolate bars. Others left the area and I got them sitting on a couch and I sat with them, between them. They quickly demolished the chocolate bars, dropping the wrappings on the floor. The thin young man slipped in and out of a catatonic state staring blindly and hearing nothing, unaware his nose was dripping, his face immobile, flat and blunted. He did tell me when I asked that he lived on this same street many blocks away. The other man babbled nonsense, making connections between the glass shards embedded in his rock and insects, spirits, goddesses and aliens. I offered him ten dollars for his rock but he said he wanted a quarter million. He said he has a house in Kingston, another in Mississauga, and a car somewhere in Hamilton. And his grandmother’s name is Olanzapine.

I took them to the food table but the lean one stood immobile over the cheese tray dribbling from his nose and the other bypassed the toothpicks and forks to stick his hands in the pickle bowl so I sat them down on a bench and brought them a plate of cupcakes.

And then I saw them on their way. The gaunt one headed for the door but the other held him back to choose a coat off the rack. I was satisfied the coat they chose was theirs and not that of a guest because it exuded the same odour that they did. And I wished them a good night.

But, ahh I thought, how much they would benefit from a month or two at the old Hamilton Psychiatric Hospital, or any other 1985 psychiatric hospital, with a warm bed, food, shower, activities, routine, the right medication, good counsel, and seamless follow up with regular outpatient care.

And here are two women with schizophrenia who talk about their difficult journey

And these are families asking how to help their ill relatives

Psychosis is Not Normal – A Guest Blog

By Lynn Nanos author of Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry

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Image by 3D Animation Production Company from Pixabay

As I was selling copies of my book, Breakdown: A Clinician’s Experience in a Broken System of Emergency Psychiatry, at a National Alliance on Mental Illness (NAMI) conference in Albany, NY last month, I had an interesting conversation with someone which reminded me of the dangers of the antipsychiatry movement, which promotes the notion that mental illness doesn’t exist.

A man approached me at my booth and asked me about Breakdown and then shared his experience with bipolar disorder with psychotic features. He emphasized that he’s recovered.

I empathized with his experience and happened to mention “illness.”

Immediately upon hearing this, he interrupted me mid-sentence with “I do not have an illness. I don’t like the use of that word so please don’t use it. I have a condition. I’m not defined by my condition. We need to stop stigmatizing this.”

I thought, “I’m not sure how this conversation will end, but I have to educate this guy. Otherwise, he’ll continue to spread the façade that stigma is an enormous issue and the only way to mitigate it is by not accurately describing what he really has – an illness.”

So, I said to him, “According to several dictionaries, ‘condition’ means ‘illness.’”

His eyes and mouth widened with “What? That can’t be true. Are you sure?”

I’m sure. Check it out yourself. I’m sure you’re a lot more than your bipolar disorder, but not accurately defining what you have is stigmatizing, not the other way around.”

After a few more minutes of him working through his shock about my challenging him, he eventually said “Thank you for pressing me to change for the better. I’ll look this up.” Smiles and relief.

∞∞∞

Earlier this year, I attended the National Alliance on Mental Illness’ national convention in Seattle, WA. The event was kicked off with pomp and circumstance involving a ceremonial military march beside the United States flag on stage before me. As I looked around at a sea of thousands of guests, I couldn’t help but think, “NAMI is huge, important, and powerful.”

Most of the week was filled with lectures and workshops. The “Cognitive Behavioral Therapy (CBT) for Psychosis” workshop I attended reminded me of the benefits of this therapeutic modality for a variety of mental illnesses, but also left me alarmed at some of the messages NAMI has been sending to mostly family members of those with mental illness and some professionals. CBT teaches people to think about, describe, and respond to the environment accurately. It persuades people to behave in healthy ways in response to thoughts. The underlying presumption of CBT is that when either one’s thought, emotion, or behavior changes, the other mental components change.

As I vigorously took notes in the workshop led by psychologists Kate Hardy and Sarah Kopelovich, my review was mixed. Should CBT for psychosis be completely disregarded? No. I’m grateful to the late forensic psychologist Robert Powitzky who extensively directed services for prison inmates, for his educational reminders. He wrote to me, “CBT can have several benefits other than making observable changes in positive and negative symptoms…is often effective for patients with schizophrenia who are stabilized on medication in conjunction with supportive housing.” 

CBT for psychosis can be useful, especially once the psychosis has been stabilized and well-managed. The psychologists said that CBT has shown moderate effectiveness in reducing the negative symptoms of schizophrenia – social withdrawal, poverty of speech and thought, apathy, anhedonia, loss of motivation, and inattention to social or cognitive input. I credit the psychologists for pointing out, albeit briefly, that per psychologist Xavior Amador, one of the greatest predictors of successful treatment is awareness into illness. But this was as far as they got regarding insight.

On another note, I confirmed that NAMI was doing two dangerous things: marginalizing those whose psychosis interferes with the ability to engage or benefit from CBT and minimizing mental illness.  A mother stood up and said to the psychologists, “All I could think of while watching this was ‘bullshit!’ Employing these techniques was impossible when my son was too agitated and unable to listen because of his psychosis.” 

Below is a detailed account of exactly what these psychologists said in the “CBT for Psychosis” workshop accompanied by my impressions.

  • Psychosis is a temporary condition. It is usually permanent.
  • Everyone is susceptible to psychosis. Not quite. An extremely small percentage of the population is far more susceptible to developing psychosis than others.
  • Trauma and stressors make someone more susceptible to becoming psychotic than genetics. False.
  • There’s a correlation between creativity and psychosis. I don’t know whether this is true, but I’m not compelled to research it because it seems mostly irrelevant to treatment goals. Even if it were true, how could this possibly be used to help people with psychosis? Should psychiatrists and social workers offer painting materials instead of medication and psychosocial rehabilitation to people suffering from psychosis? Yes, this is a rhetorical question.
  • Psychosis is often part of PTSD and can be part of borderline personality disorder. Untrue.
  • It’s not helpful to tell the person with schizophrenia, “You need specialized treatment.” Psychosis is a special illness requiring specialized treatment. Treatment providers help their patients by telling them the truth.
  • Expect recovery. If you get good treatment, recovery is the norm. Hundreds of NAMI blogs are ridden with happy endings, but everyone with psychosis does not recover. Telling families that recovery is the norm inappropriately sets them up for huge disappointment when good treatment does not work. There are many factors that can interfere with recovery even when the best treatments are tried.
  • Intrusive thoughts, which everyone has, can be compared to delusions and hallucinations. Are you stating that psychosis is normal? It sure seems like it.
  • CBT inherently normalizes psychosis, because we all have negative thoughts, engage in unhelpful behaviors, and use unhealthy coping strategies. Thus, CBT normalizes psychotic symptoms. Psychosis is normal. The psychologists asked the audience, “How many of you ever felt others were trying to harm you?” There is nothing normal about psychosis!

With all of NAMI’s grandeur and influence, speaking out against its marginalizing those who are most ill and spreading the notion that mental illness is less than important is paramount if we want to alter the status quo. Let’s destigmatize mental illness by defining it accurately. It’s a condition, but more accurately, it’s a brain disease.

Schizophrenia and the Fourth Wall

By Dr David Laing Dawson

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When we sit on a couch in front of that high definition big TV screen and watch a movie or a series episode (last night it was The Shield) our human brains are uniquely equipped to maintain a foothold in two or more spheres of existence. I am aware of this planet earth, Canada, Hamilton, living room reality as I sit in my corner of the couch with its torn leather (my wife wants to replace), while she sits next to me, our dogs at our feet, ice cubes melting in my glass of bourbon, a large truck rumbling down the hill outside, while, at the same time being absorbed into a fictional version of the mean streets of Los Angeles, or a Boston Legal firm, or a colony on a distant planet. The film makers have done their best to hook me, to have me identify with at least one character, to feel sympathy for another, to experience a vicarious fear, apprehension, or pleasure in the unfolding events, to absorb my consciousness to the point I might duck from a missile, startle at a gunshot, verbally caution the hero, or shamefully experience the sweet pleasure of revenge. At the commercial break I refill my glass even while expecting to  be soon driving in a dangerous car chase.

When the car chase comes I can drive that souped-up Mustang experiencing all the chills and thrills of the experience, providing the actor portraying the driver does not speak directly to the other me on the couch, and thus break the fourth wall. At that point the illusion is shattered and I am back on the couch with its torn leather seam.

And for this reason it is a taboo for film makers and stage actors to break that fourth wall and talk directly to a member or members of the audience. Of course such a taboo encourages some to purposely do it, as in the opening sequence of Woody Allen’s Annie Hall. I, vicariously, have been standing in a theatre line with Dianne Keaton when Woody puts me back on my leather couch and speaks directly to me, and then, to add more disturbance in my consciousness, brings the real (within the film that is) Marshall McLuhan out from behind a billboard to refute the annoying teacher of media studies. Marshall speaks directly to the teacher and does not break the fourth wall, except for his little grin at the end. He is in on the joke, we see. That is, his little grin tells us this filmed Marshall McLuhan is aware at the time of the film making of the camera man, the crew, and the audience beyond.

What has this to do with schizophrenia?

Well, it struck me that “breaking the fourth wall”, especially in film, highlights the amazing sensory, perceptual, and interpretive apparatus that enables the healthy human brain to retain its footing in this real world, even while vicariously experiencing another. McLuhan’s little grin, Woody’s eye movements, his tone of voice, his cadence, his choice of words, his facial expressions all allow us to distinguish one reality from another, to understand the intent of the speaker even when that speaker is playfully breaking the fourth wall. When we don’t receive the signals of a broken fourth wall we can retain the illusion, vicariously remain part of this alternate universe on the screen, while still knowing that our earthly body is sitting on the leather couch with the torn seam. And even when Woody talks directly to me I know it is really to a collective, to a large audience now and forever, and that he will fall silent when I change the channel.

And Schizophrenia?

A very common symptom of schizophrenia entails the experience of “the television is talking directly to me.” Interestingly, at least from what I have seen, this is less likely to be experienced when the news broadcaster is talking directly to the camera, and more likely in a drama when the actors are not breaking the fourth wall. And this implies that the image of a full face forward newscaster and the information being delivered is being understood in its rightful context, whereas the conversation between two characters in a TV drama may not be.

For most of us, even when fully hooked and vicariously enjoying the drama, we hear, see, and perceive the characters as unrelated to our actual presence on the leather couch. But a person with schizophrenia may not. He or she misses or misinterprets the information that signals the difference, and that normally keeps those characters within their own world. For this person suffering from schizophrenia the fourth wall, in a sense, is always broken. The words spoken in the drama become directed at him, or are interpreted as being about him.

In a psychotic relapse, with the terror of disorganization coupled with the need for order, meaning and explanation, the words coming from the TV can become part of a delusion, either as instructions, commentary or condemnations.

For some stable well-functioning people with schizophrenia, otherwise quite well, this experience can be disconcerting and best avoided. They simply don’t watch TV dramas.

Treatment Resistant Schizophrenia and the Family – A Book Review

By Marvin Ross

book cover My Father Fortunetellers Me

My Father, Fortune Tellers and Me: A Memoir, is a book that should be mandatory reading for all counsellors in training, psychologists, social workers, psychiatrists and anyone who is working with or involved with families of those with schizophrenia – particularly untreated or treatment resistant schizophrenia.

Eufemia Fantetti, in telling the story of her family and her mother’s treatment resistant illness, has provided us with the full horrible extent of the complete destructive power of this illness. I can’t think of anything that depicts so vividly the impact on the family but the book also gives us more than that – family love and resilience. The book also demonstrates our total failure as a society to help care for people who are that sick.

Eufemia’s father had a pretty good life as a 30’s something Italian immigrant in Toronto – single, good job and living in a vibrant city with a large Italian subculture when he returned to his home town to take an arranged bride, a second cousin, years younger than him. Eufemia opens the book with a wedding photo of her parents in front of the statue of St Anthony of Padua holding the baby Jesus who, Eufemia says, is waving ciao to someone in the church.

Her father she describes as unsure of himself having only seen his bride twice before that day and he had never spoken to her. She points to her mother, Lucia, with Jordan almonds that symbolize health, wealth, happiness, fertility and longevity “My folks scored two out of five”. Married life continued in Toronto and soon Eufemia came along.

Lucia became increasingly more erratic as the years went on and so the family went for a long stay to Italy where it was hoped that she could get medical help. Once her treatment with an Italian doctor started, her father returned to Canada leaving Eufemia with Italian relatives. Lucia quickly stopped taking her medication and eventually, mother and daughter returned to Toronto.

Of course, the bizarre behaviour continued and often Eufemia was the brunt of the mother’s anger and physical abuse. At one point, a little girl in the neighbourhood had drowned in an accident and Lucia took Eufemia to the visitation against her father’s wishes. Visitations freak me out as they are not part of my cultural upbringing and I’ve never been comfortable standing around with a cup of tea making small talk while grandpa lies dead a few feet away. Imagine what it must be like for a young child especially when the departed is another child?

Lucia drags Eufemia to view the body and, if memory serves, makes her touch the little girl. She then gets in the line and introduces the grieving mother to her own daughter who she describes as the light of her life. This causes the departed’s mother to start howling in anguish and the two leave.

Later, Lucia goes to the factory where her husband works and takes his car in order to drive Eufemia to school. After dropping Eufemia off, she plows into the back of a truck and takes off, puts the car in the garage and says nothing. That evening, the damage is discovered and the father calls the police to report it. The police arrive quickly as they had been out looking for the hit and run driver but Lucia was in church so they come back later.

With all the times that Lucia spent in church, I have to wonder why no priest ever realized she was in need of medical help and suggested it. It was mainly the police who did and, after taking their report from Lucia, the officers parting advice to the family was to take her for medical help. It was because of that suggestion that Lucia was diagnosed with schizophrenia.

The diagnosis did not lead to any improvement and Lucia continued to terrorize the family often smashing the house and inflicting abuse on Eufemia. There were countless encounters with the police, charges, restraining orders and, at one point, a police officer arrived and gave Eufemia’s father the business card of an Italian social worker so that he could get help. The cop said “sir, you cannot continue to live like this”.

Eufemia regularly saw a counsellor to help her through and the best advice she was given was to graduate from high school and to go to university as far away from Toronto as possible. Eufemia moved to Victoria, BC and lived on the west coast for many years while trying to help her father as best she could. Eufemia’s father endured until the stress of his life took its own toll on him and he had his own mental collapse.

It eventually took him four years to divorce his wife in a proceeding that his lawyer told him was the most complex of his 30 years practice as a lawyer. Ten years ago, Eufemia moved back to Toronto and she and I  were introduced by our mutual friend, Susan Inman (and Bridgeross author of After Her Brain Broke). I was somewhat familiar with the story in the book but not the full details and always hoped that she would write of her experiences.  I’m delighted she has and the book exceeds all expectations I had for it.

Eufemia often posts conversations with her father whom she calls Pappy on Facebook and the love and affection shines through along with Pappy’s optimism and good sense:

My dad insists that the Lord watched out for him – is certain the biblical sky dignitary dealt the cards for the game of Scopa my father played throughout his life.

“And if I didn’t marry the woman who ruined my life” she quotes her father saying, “I wouldn’t have you. I got what I wanted in this world: someone I could talk to. I prayed for someone reasonable and I got you.”

Words escape me!

Going back to the police, Eufemia states that “in a fair and kind society, police wouldn’t be tasked with the role of front-line mental health workers. We wouldn’t close our hearts to the suffering of others. We wouldn’t blame people for their illnesses…..”

At one point after her return to Toronto, Eufemia goes to visit her mom who is under the care of the Provincial Public Guardian and Trustee housed in a nice one bedroom apartment. Eufemia notices that all her blister packs of pills are months out of date and so decided to take Lucia to the doctor’s office for her monthly anti-psychotic injection.

The pleasant nurse points out that “we have not seen you for awhile Lucia”. And my reply is why do they not ensure that she does get her monthly shot and make sure that she is taking the meds in her blister pack? Should their job not also be to ensure that the vulnerable patients under their care at least get the medication they are supposed to?

And a final word about Eufemia. Her story collection, A Recipe for Disaster & Other Unlikely Tales of Love (Mother Tongue Publishing) was runner up for the Danuta Gleed Literary Award and won the F.G. Bressani Prize for short fiction. A recipient of the Commonwealth Broadcasting Award, she is a graduate of The Writer’s Studio and holds an MFA in Creative Writing from the University of Guelph. Her work has appeared in the Globe and Mail, Event Magazine, and The New Quarterly. She teaches at Humber College and lives in Toronto.

I cannot recommend her book strongly enough.

My Father, fortune-Tellers, & Me By Eufemia Fantetti, Mother Tongue Press ISBN-13: 978-1896949758

Art and Schizophrenia Follow-Up

By Dr David Laing Dawson

Marvin’s recent piece and the comments that followed got me thinking about art and schizophrenia. There is a brief period in child development between the time a child can hold and manipulate a pencil or brush to make marks on paper and the time they begin to think and speak in symbolic language. That is the period, I think, Picasso was referring to when he spoke of retaining the gifts of a child to draw and paint as a child. For it is in that period that a child draws, perhaps with varying degrees of skill, what he or she sees or perceives at the moment, rather than what they expect to see.

With the development of symbolic language we begin to see what we expect to see and only in the amount of detail that we need. And the child then begins to draw not what is actually before their eyes but symbols. Hence a tree becomes a green popsicle on a stick, the sun a yellow orb in the sky with yellow rays, a house becomes a box with peaked roof, and humans become stick figures.

Generally we adults see what we expect to see but we can be persuaded to take a second look by others, by circumstances, by choice. In a delusional state the afflicted person also sees what they expect to see and they perceive what they see in a manner that supports their delusion. It is also impossible to persuade them to take a second look for to do so would shatter a conviction.

And that may be where the making of art and art therapy comes in. It offers the troubled, afflicted, delusional person a non threatening place to go back, back before symbolic thinking developed, and learn to see again.

And of course it also offers that which I think every artist pursues, and that is the possibility of reliving the moment when mother once took your childhood scribble in hand and exclaimed, “This is wonderful. My very own little Picasso. This is going right on the refrigerator door.”

Art Therapy and Schizophrenia – A Review of DrawBridge

By Marvin Ross
drawbridge Drawbridge, a book by Joan Boxall, about her travels in art with her brother with schizophrenia is a difficult one for me to review. Not because the book is bad which it is not and I do recommend it but because of my own problems with art and art therapy.

I am artistically challenged and can barely draw a stick figure. Art classes which were mandatory when I was in elementary school were torture for me so it is difficult to comprehend the enjoyment and benefit people get from it. David Dawson and I did a documentary on an art program for people with mental illness called the Brush, The Pen and Recovery and I did see the value that the participants derived from their participation.

The Home on the Hill program in Richmond Hill, Ontario does have an art program as well and I did attend a function where the art therapist explained the benefits but it was all over my head.

For those interested in the benefits of an art program, then I highly recommend this book. Written by Joan Boxall, a British Columbia based retired teacher, the book relates how she reconnected to her brother Stephen who had schizophrenia and developed a deep connection with him. As the book blurb states “Joan meets him (Steve) at the Art Studios in Vancouver, where he takes part in art classes for individuals with a mental illness in a safe, supportive environment. This marks the beginning of a remarkable journey into the healing power of art.”

Steve did attend art school in Vancouver in the 1960’s and has considerable talent evident from the drawings included in the book.

Explaining the role of art, Joan quotes from Picasso via Matisse that “painting is a blind man’s profession. He paints not what he sees but what he feels, what he tells himself about what he has seen.” And attending the classes at the art studio have resulted in Steve relearning how to focus and make good use of his time.

As the time the two siblings spend together and Steve becomes more involved with the art and the talent he left behind during his travels with psychosis, Joan comments that Steve is becoming unstuck and that he obsesses less and is lighter.

Soon, Steve’s work is displayed at the Art Studio and he has his first show called Dancing on the Interface. Of his 57 paintings on display, six sell along with cards of his images. Later, his paintings are accepted in the Art Rental Program at the North Vancouver Community Arts Council (now called North Van Arts). More paintings sell and his art begins to be displayed at some coffee houses in Vancouver.

Without wishing to give away too much of the book, let me just say that there is now a bursary given every spring to a student at the Emily Carr University in Art and Design in Vancouver to students coping with significant mental health challenges.

Aside from art, the book is a revealing look into the role that siblings can play in the support and help for those with schizophrenia and other serious mental illnesses. It is often not an easy role but in this case it was aided by their mutual participation in art classes (and bocce ball as well.)

It also made me a bit jealous of Vancouver in that the community supported the art program and people bought or borrowed the paintings. We have not found that in our own community of Hamilton, Ontario. I did manage to get our local hospital with responsibility for mental health care to put on a premier for our documentary which they used for fund raising. One of the esteemed guests at that opening is a major donor to the hospital and now to their mental health services.

But when David Dawson held an art show for the artists involved in the film at his art gallery when we did the film, I do not believe that one painting sold. And they were  good pieces of work.

Either last year or early this year, David held another showing for some very talented artists with serious mental illnesses and again I do not believe anything sold. For that, I notified the VP of mental health services at the hospital about the show and suggested they might like to obtain art works from talented patients for the drab, monochromatic institutionalized depressing walls of the hospital. No reply.

So kudos to Vancouver for the support they give.

DrawBridge: Drawing Alongside My Brother’s Schizophrenia, by Joan Boxall  (Author), Stephen A. Corcoran (Illustrator) ISBN-13: 978-1773860022 and available

 

More on What Families Need and Don’t Get

By Marvin Ross

This original  blog post on what families need and don’t get seemed to have touched a nerve with many as it was shared far and wide and received a number of interesting comments. I thought I would reply to some of them.

The first comment stated that family involvement that I wrote about bears no resemblance in the US because of the privacy legislation under HIPPA. That very same situation exists in Canada as each province has its own privacy legislation. Doctors on both sides of the border hide behind that as an excuse to avoid dealing with families but, if they do, they should be challenged. Any good psychiatrist will ask if the family can be involved but the problem arises if the patient gives a blanket no.

The doctor should not leave it as no and the family should insist that further questions be asked of the patient. Quite often, there are issues like drug use or sexual activity that the patient does not want revealed but is willing to allow other information such as diagnosis or treatment options to be revealed. A doctor who refuses to include the family some way even when the patient says no is, if I may, an idiot and it should be challenged by the family.

We only went through this once and the reason for the no  was uncharacteristic. The patient feared that if the family had information, the government would find out and steal all his money. Had the doctor asked why, he would have realized that the paranoia was extreme. The damage caused by this was rectified and the doctor was reprimanded by the hospital.

A retired psychiatric nurse pointed out that nurses today are inundated with paper work and reports that take time away from their ability to interact with patients. Bureaucracies are in the cover your ass mode and require that all this be done in order to defend themselves from angry family when something goes wrong. Nurses spend too much time sitting in front of computer screens entering data or, as I’ve often seen, wandering the halls with a computer pad recording patient activity.

They do their best to interact with their patients but the system is designed against that. As an older retired psych nurse trained in the UK pointed out, nurses in the 1960’s engaged with patients far more than they do now. Talking to patients, having coffee with them and walking with them can have a beneficial effect but there is just not enough time for them to do that. Hospitals really need to reduce the cover your ass paper work and get back to basics.

Another comment pointed out the propaganda that many health professionals spout such as the mentally ill being the victims of violence rather than being violent themselves. That is true for those who are stabilized and not actively psychotic but it is not true for those who are psychotic. Families want to know the truth and deserve to be told the truth and not lied to as if they were little children. Mental health staff need to be more honest with families and so families should question and press the staff on what they are told. Demand evidence and sources from what they tell you.

Finally, it was suggested that the family meeting was deficient because there were no patients involved as required by the Strategy for Patient-Oriented Research (SPOR) policy of the Canadian government. That policy pertains to identifying “gaps in treatment and care, provide the best evidence to fill those gaps and conduct new research when existing knowledge is incomplete”. This meeting had nothing to do with research but I do agree that people who are “recovered” are a good source for families to see and hear.

Families of newly diagnosed are raw and hurting with little idea of what the future holds for them or for their relative. Being able to see someone who has done well with treatment can give them hope and allay their fears. The family education program that I referred to in the original blog did have one session with someone who was doing well. The most impressive example we saw was that of a young mother who was hospitalized. The woman had schizophrenia and was receiving ECT in hospital when we met her. Some time later, I was in line getting coffee in the hospital coffee shop when this attractive and well dressed woman said hello to me. She realized that I did not recognize her and introduced herself as the woman from the inpatient unit who was undergoing ECT. “This is the post ECT patient you met before” she explained.

At that same time, one of the patients on the unit who was in and out of the seclusion room was a professor emeritus at the medical school the hospital was affiliated with. He would send the nurses to his office to pick up his mail as the faculty was in the same building.

So yes, families do need to see some successful people and to realize that mental illness is an equal opportunity disease. It does not discriminate based on gender, income, education or race/ethnicity.

What Families of Serious Mental Illness Need (and often don’t get)

By Marvin Ross

joanna cheung at panel event.
Joanna Cheung, art therapist giving presentation while Drs Lori Trianno and David Dawson look on.

I decided to write this after the feedback from an event in Richmond Hill, Ontario put on by Home on the Hill, an organization which serves families and loved ones affected by serious mental illness. On May 10, this agency north of Toronto held a luncheon in honour of Mental Health Week. In the words of the president, Kathy Mochnacki, “This event featured a panel consisting of a psychologist, psychiatrist and a social worker/art therapist and the goal was to give families information about schizophrenia and psychotic illness. Our panel was stellar with psychologist, Dr. Lori Triano (president of the Schizophrenia Society of Canada), psychiatrist, Dr. David Dawson and Certified Art Therapist/Social Worker, Joanna Cheung from Markham Stouffville Hospital’s mental health system. Our local MP Majid Jowhari (member of Parliament in Ottawa) was there as were Richmond Hill Councillors, Karen Cilevitz, Godwin Chan, and Tom Muench from our municipal council, the York Regional Police,” and various mental health agencies.

Both David and I have spoken to this organization on a number of occasions and David commented to me after that the families just could not get enough information.

Talking to Kathy after, I was surprised to discover that most if not all the families received nothing like the support my family has received over the years. I thought I would share what I think would be an ideal situation for a family learning that their loved one has schizophrenia, bipolar or some serious mental illness.

When the person is diagnosed and that is usually in a hospital setting, the family should be told in a meeting with the staff who have cared for and diagnosed the person. You should be given information about the condition, an idea of treatments, prognosis, and what to expect down the road. You should also be provided with resources like books, pamphlets, courses and whatever might be of value. We got most of this.

Discharge should involve housing if that is needed and referrals for follow up care to doctors and agencies that will continue with the care and the road back to what may be a new normal. Of course families should be involved with the follow up care. In my family’s case, appointments not only initially involved the psychiatrist but a nurse educator and referral to an excellent program called Family Education and Training.

I am not sure if that still runs but there are considerable resources for families at my local hospital. This is a link to those In addition to a library, there are programs such as family peer support.

Families should always be involved on any ongoing care and treatment unless there are unique circumstances that prevent that. We have almost always been involved and able to talk to doctors or others. There was one time during a crisis where this did not happen and the result almost led to a very disastrous outcome. Fortunately, this was overcome much to everyone’s surprise and relief.

The doctor and the staff whose stupidity caused that problem were all reprimanded by the hospital and I was told that the incident was recorded on their personnel file.

The young psychiatrist who was left to pick up the pieces and put them back as well (along with a young social worker) said that there are better outcomes when families are involved. He also added that he has many patients with no family involvement and that makes recovery far more difficult.

What I have described here are things that those with problems like cancer, diabetes, MS, and on and on mostly already receive now. There is no reason that psychiatric illnesses do not get those too. I can only suggest that all of you make those demands of your health care providers and be as insistent as you have to be. Don’t be afraid to threaten legal action or of notifying the press.  Never worry about what they may think of you but just do all you can to make them do the right thing. What do you care if they may not like you and not want to go have a coffee with you.

While I may be painting my own local hospital in a favourable light, it gets there partly because they get pressure from the community. A few years ago, one of the doctors leaked that there were plans to move a satellite unit servicing an area with limited resources to the main hospital. I wrote about it and others complained and the unit is still there today.

In April this year, three psychiatrists quit the local psychiatric ER and the medical school pulled their residents out. Four days later, the hospital announced major changes. The safety problems were pointed out to the hospital a few years ago but suddenly, they had a solution.

As the result of the overcrowding at the ER, Arthur Gallant was made to sit in the general waiting area, hands cuffed behind his back with a police officer on either side of him, He is suing the hospital for $25,000. I’ve corresponded with Mr Gallant over the years as he used to write a regular blog on mental illness for Huffington Post. Arthur was 1 of 5 Canadians named as a Face of Mental Illness by the Canadian Alliance on Mental Illness and Mental Health which is an initiative of Bell Let’s Talk. Arthur has been featured several times on TVO’s The Agenda with Steve Paikin and in The Toronto Star, CBC’s The National , CTV News Channel, The Globe and Mail, CHCH’s Square Off, and an educational video for the Canadian Mental Health Association (Ontario Chapter).

And I should mention that he was a member of an Ontario Government advisory panel on mental health.

If you want improvements, fight for them!

An Addendum by Kathy Mochnacki MSW RSW of Home on the Hill

I did attempt recently to have coffee with the President of the Board of an organization which appears to be positioning itself as being an example of “evidenced based community treatment” for mental illnesses.  I had hoped to make him aware of the 50%  of people with schizophrenia and the 40% of people with bipolar who have the symptom of “anosognosia” and therefore lack insight and cannot access the voluntary services of his agency.  There needs to be the political will to find innovative ways to help these individuals.

Perhaps there would be fewer  homeless mentally ill people if his agency was a little more flexible.  I was not upset that he did not have coffee with me, but very concerned. as a family caregiver and a taxpayer, that he and his Board are responsible for allocating millions of our tax dollars to his agency’s programs yet he does not appear to be interested in learning about the symptoms of these horrendous illnesses.

I later met with my MP, Majid Jowhari, who has arranged for  Home on the Hill to have input into his mental health platform for the upcoming federal election. We will be asking that there be more awareness of the symptoms of mental illness among mental health service providers and more effective mechanisms of accountability.

This short video (17 minutes) is of the Q and A with answers on how drugs work, dealing with lack of insight and cognitive remediation ( “Video by Billy Dennis”)