Category Archives: Schizophrenia

Excerpts From When Neurons Tell Stories – A Layman’s Guide to the Neuroscience of Mental Illness and Health

A new book coming soon from Erin Hawkes-Emiru

Many of you may remember Erin for her 2012 book When Quietness Came: A Neuroscientist’s Personal Journey with Schizophrenia. That book was published by me (Bridgeross) and is still selling I’m pleased to say. Her book on Amazon has 4.4 stars out of 5 from 27 reviews. In 2019, Erin was awarded the prestigious Courage to Come Back Award from Vancouver Coastal Health (my second author so honoured. The first being Sandra Yuen MacKay who wrote My Schizophrenic Life).

Erin has been a frequent speaker for various groups in BC such as the BC Schizophrenia Society, police, health professionals and others.

Erin has a master’s degree in neuroscience and was the recipient of a number of research grants including two from the prestigious Natural Sciences and Engineering Research Council of Canada. Unable to continue with her PhD because of her schizophrenia, she has been working as a peer counsellor on an Assertive Community Treatment (ACT) Team in Vancouver.

In her latest book, she states that:

“I’m hoping to bring you on a tour of the neuroscience of schizophrenia and other related topics. The people who will bring this neuroscience to life are my clients, people who experience mental health and addiction challenges. Their stories form the backbone of this book. “

I realize that the value of peer support can be controversial but when done properly and as intended, it can be helpful. This is Erin’s definition of her role:

“Empathy, the compassionate understanding what someone’s feeling, is what peer support is all about. Other members on the ACT team, while highly compassionate, cannot know what it’s like to live with a mental illness, as peer support workers do. True, no one can ever empathize with every person’s exact circumstances and past experiences, and I, compared to most of our ACT clients, have had a very different, privileged life. I do, however, draw alongside them in their frustration with symptoms, their intolerance of medication side effects, or their feelings of helplessness when certified to hospital. I can empathize with meeting these challenges at times with despair and helplessness, other times with the satisfaction of regaining mental wellness. I know how much someone helping you accomplish small goals can make you feel heard and validated. However, I cannot know what it is like to be very poor, addicted to street drugs, and/or “housed” in an SRO downtown. I feel my privilege acutely and ask for the humility to be quiet and listen when I cannot speak from experience. Somehow, sometimes, it works. As Miguel said, and as I quoted earlier: “We have fuck all in common, but you’re my best friend.”

I have no doubt that people will find Erin’s new book a fascinating and informative read. It will be available in print very shortly and, you can pre-order the kindle version now at https://www.amazon.com/dp/B092P7HCP9.

When Neurons Tell Stories A Layman’s Guide to the Neuroscience of Mental Illness and Health Erin Hawkes-Emiru, ISBN 978-1-927637-38-8, 281 pages, $19.95

And, in case you are wondering, Erin is now Hawkes-Emiru as she married since her last book and she and her husband and baby daughter live in Vancouver, BC

Excerpt From: The Autobiography of a Professional Schizophrenian, Artist, Singer, and Public Speaker

By Jude Mersereau

So I’ve been asked to elaborate on Schizophrenia and those waxing Schizophrenian. Keep in mind that this illness can be worldwide in scope whilst remaining comfy in somebody’s compact personal brain. A city within itself. Those who have been granted this unfortunate citizenship are members of an elite yet most misunderstood club in their cranium. This particular metropolis is uniformly a run-down unkempt ghetto with unseen stagnant thought poverty. Even if a schizophrenian is adept at expression, the echo sounds like “poor me” instead of “understand me”, and so all is interpreted as a climate of destitution. We just cannot win. Common belief concludes that we barely are able to scrape two thoughts together, and if we can…we are rendered delusional.

So what keeps us going? In one simple statement, “we exist”. It’s more akin to starting out by saying ”I AM” and then immediately shuddering with the stark conclusion “I am SCHIZOPHRENIAN” Pretty bleak. A lifetime of poverty: poverty monetarily, poverty of diet, poverty of living arrangements, abundance of rejection, poverty of thought and conversation, regulated supplies of cigarettes (up to 90% of us smoke) But in our hearts there is soaring of the mind with stubborn rejection of this outer world’s down pressing of the disabled.

We dream big. And since this wry condition cannot be pried away without medication, psychotherapy, and familial intervention, for example, since it cannot return to a happier past and still calmly reject the hopes permanently left behind, Schizophrenian becomes an elephant in the room. But there is hope for the burgeoning Schizophrenian. It does take something with the force of another elephant to clear the room of its elephant in the room(get it?) The problem is that all too often the second elephant is more resistant to vacate than the first. And so on. Perpetual perception problems. The elephant-filled room.

And what is this room?

It is a box where we exist. It is usually closed to the public until one of us citizens discovers a secret ceiling and escapes upwards for a time. When those guarding the box see this freed “clown” happy and bouncy, they frantically stifle and smother said clown down into the box. Again. Then, their particular job resumes, mindlessly cranking through life like a mass-lever round and redundantly round expecting no surprises. Alas.

Another nut gets out.

Okay. That actually is a Jack-in-the-box memory from my childhood.

Here is the precise allusion. Many of us earthlings can relate to this world as containing three “worlds”.

The first…that’s the number-one best… is specially for the rich, overdeveloped, overweight “countries” Although some patriots are not habitually fat during their daily skinny-money marathons.

The second world, sadly enslaved by chaotic hellish communism is poor but maintains the capacity to incinerate the entire planet several times over.

The third: world music, lots of love, and no money at all in their perpetual paradise. Yay

But wait—could it be??? A fourth world? A fourth one not made up of psychiatric patients, but maybe revering them in a way. You see, the Indigenous people worldwide: the first nations…and therefore the last, hold ownership of an invisible clime, unseen by those blinded by self. No wonder it is considered magical. Anyway, these natives hold mental types as harbingers of danger, sentinels to the wind’s whispers, and special with their unique gifts, even more completely unseen by other money chasers or nuclear bomb happy power mongers. But maybe observed by chance by those poor enough to relate in that third world aforementioned as poor.

And so…the Schizophrenian seen in greater accuracy by first nation ones, do really have a place to thrive and therefore are citizens by right on this orb called earth. Care to vacation in our “land?”

  • Jude.

What so Funny? An Autobiography of a Professional Schizophrenian, Artist, Singer and Public Singer, 2021, Published by Bridgeross Communications, ISBN 978-1-927637-37-1, $19.95 print, $9.95 e-book, distributed by Ingram and available from most retailers.

Nature and Nurture in Schizophrenia Etiology

By Marvin Ross

Nature versus nurture has long been an argument swirling around the causation of schizophrenia but a new genetic study moves that argument closer to nature. One of our readers let me know about a new twin study just published in Nature Genetics called Differences between germline genomes of monozygotic twins

Up to now, it has been known that if one identical twin develops schizophrenia, then the chances of the other twin developing it is about 40-50%. One study in 2017, however, suggested that the concordance is actually as much as 79% but regardless of the actual percentage, some identical twins escape and the question is why. There have always been suggestions that the environment and experiences of the twins has been somehow different leading one to develop schizophrenia but this new study demonstrates that identical does not mean identical.

What happens according to these Icelandic researchers is that one twin begins accumulating genetic variation from the earliest stages of development meaning that one twin harbours variants that aren’t present in the other. These mutations occur as or before embryos form from the mass of cells inside the blastocyst, a structure that implants in the uterine wall according to an interview with the researchers. Based on an analysis of 381 identical twins and their families, the researchers found a number of mutations during this period so that genetically, the identical twins were not really identical.

The researcher mentioned twin studies of people with autism who had been raised apart with the assumption made that differences were due to environment. That is not necessarily the case as the difference could be accounted for by de nuvo mutation. The study estimated that about 15% of twins have these early mutations. Of course, the anti-science deniers who form the anti-psychiatry mob will poo poo these genetic findings and claim that as geneticists cannot pinpoint one specific gene that is responsible for schizophrenia, there is no proof.

I do think this is a function of the lack of scientific literacy we give people in school. I recently saw an infectious disease specialist comment on this very thing when talking about the anti-maskers. They point to the evolving recommendations being made about covid as an indication that medicine and science is making things up. Science evolves as hypotheses are tested and are then either replicated or refuted in further studies and experimentations. Finding truth in science is a lengthy process that cannot be simplified. These elements of the scientific method really need to be taught.

For more on genetics, I found this interesting video which you might be interested in seeing.

Three New Book Titles on Schizophrenia for 2021

By Marvin Ross

Since 2008, I’ve been publishing books mostly on schizophrenia via my company Bridgeross Communications. The current titles can be found on the books page on this blog and I’m pleased to say that they have been well received by readers and reviewers and are still selling. I had no intention of publishing anymore but circumstances changed and I’m pleased to announce that three new books are coming this Spring. Allow me to introduce them to you:

What’s So Funny? The Autobiography of a Professional Schizophrenian, Artist, Public Speaker and Singer

Jude Mersereau, the author, I have known for a number of years as we live in the same city where she is an amazing artist. She was one of three artists with schizophrenia that were the subjects of a documentary film that Dr Dawson and I did of the art program she was involved with. This is the trailer for that film which does feature Jude who is also the singer along with her husband, George on guitar.

The book features a lot of her art in colour. Those who have read the draft are very impressed. Sandra Yuen Mackay who wrote My Schizophrenic Life which I published said:

“Schizophrenian Judy Mersereau writes with humour, poetic cleverness and lively originality. The book is beautifully illustrated with her art. The telling of her story winds and weaves with elements of joy in her memories. An entertaining read, written with honesty and insight, demonstrates Judy’s example of a full life despite diagnosis. She found ways to cope and give through her music, art and writing.”

Sandra is the recipient of the Courage to Come Back Award given by Vancouver’s Coastal Health and was named one of the five faces of mental illness in Canada to promote understanding of mental illness.

Kathy Mochnacki, chair of the board of Home on the Hill Supportive Housing commented that:

“Jude is a master at using literary tools. Her play on words can cause involuntary outbursts of laughter. But most striking is her use of juxtaposition which jars us into thinking from her perception of the world. Her artwork is original and enigmatic and is showcased throughout.”

Jude has spoken at Home on the Hill and she and her husband have performed for them.

When Neurons Tell Stories: A Layman’s Guide to the Neuroscience of Mental Illness and Health

By Erin Emiru (nee Hawkes) who is the author of When Quietness Came: A Neuroscientist’s Personal Journey with Schizophrenia. As the title of her first book states, Erin has schizophrenia and is a neuroscientist. She became ill while an undergraduate but managed to go on to complete a masters in neuroscience at the University of British Columbia and enrol in their PhD program while sick.

She managed to be the recipient of numerous prestigious awards and scholarships, including two Natural Science and Engineering Research Council’s (NSERC) grants and a Michael Smith award. Her papers were published in a variety of academic peer-reviewed journals in conjunction with her supervisors, colleagues, and fellow students. For several years, she attended and presented research at the massive (35,000+ attendees) Society for Neuroscience conferences.

It took years for Erin to find a medication that helped and, until then, had numerous forced hospitalizations where she was transported to hospital restrained by police. She has written a number of articles on how forced treatment saved her life. Unfortunately, Erin was not able to continue with her doctorate or to continue working in a neuroscience lab so became a peer support worker in addition to her many lectures to nurses, doctors and others on schizophrenia.

Her book takes you on a tour of the neuroscience of schizophrenia and other related topics. The subjects who will bring this neuroscience to life are her clients who experience mental health and addiction challenges. Their stories form the backbone of this book. She also describes her role as a peer support and how peer support should be done as part of a treatment team.

Her book will be an antidote to all the anti-psychiatry types who deny the existence of serious mental illness. Her definition of what recovery should be will be very enlightening. As a companion to that book is

Anti-psychiatry and the UN Assault on the Mentally Ill

This is my own foray back into book writing since my Schizophrenia Medicine’s Mystery Society’s Shame in 2008.

The book is an evidence based refutation of all the dribble spouted by the anti-psychiatry crowd which is becoming more entrenched. In my blog after the US election, I mentioned that I put anti-psychiatry in there with the anti-mask, anti-vax, alternative medicine proponents who are becoming more and more prevalent. Thanks to my friend Dr John Gray in Victoria, one of Canada’s leading experts in mental health legislation, I learned of their role with the UN.

This volume exposes the danger of the anti-psychiatry beliefs and their infiltration into the UN and that body’s Convention on the Rights of Disabled Persons. Many countries have signed on although a few like Canada and Australia refused to ratify the odious terms for psychiatry. The US has not signed but there is every indication that the Biden Presidency will sign it all.

This book and Erin’s book will provide the ammunition you need to counter anti-psychiatry’s arguments.

I will let everyone know when the books will become available and they will be available internationally in print and in e-book formats.

Schizophrenia Research Lost a Giant

By Marvin Ross

Dr Philip Seeman, the scientist who discovered the dopamine D2 receptor in 1974 and the basis for the dopamine hypothesis of schizophrenia, passed away at the age of 87 in Toronto. In 1999 he discovered that the atypical antipsychotics clozapine and quetiapine rapidly dissociate from D2, explaining why these antipsychotics are preferred by patients. This discovery led to the synthesis of new fast-off-D2 antipsychotics.

In 1963, he was a Canadian doctor, trained at McGill in Montreal, and doing research for a PhD at the Rockefeller University in New York City. His wife, Mary, was a psychiatrist and she took Philip with her to the Manhattan State Hospital. Dr. Philip stated in an essay he wrote in 2001 that the sight of 2000 patients with schizophrenia or psychosis was unforgettable. His wife said “why don’t you do something useful? Why don’t you find the cause of schizophrenia?”

That challenge set him on a lengthy journey to discover how the antipsychotic drugs worked which he did during his tenure in the departments of pharmacology, chair of neuroscience, and a member of the faculty of psychiatry at the University of Toronto. Quoting from my 2008 book on Schizophrenia (Schizophrenia Medicine’s Mystery, Society’s Shame), I had this to say of his work:

What Philip Seeman discovered was that antipsychotic drugs blocked a dopamine receptor that he called the D2 receptor. It was then discovered that people with schizophrenia have more of these receptors than normal. Psychotic symptoms are relieved when the drug blocks the receptor and prevents dopamine from binding. The longer an antipsychotic drug blocks these receptors, the more potent it is in reducing psychotic symptoms.

More recently, it has been discovered that in people with schizophrenia, there is a supersensitivity to dopamine. It was also discovered that the older antipychotic medications (the typical antipsychotics) blocked the dopamine receptors more extensively and for longer periods of time than the newer drugs called atypical antipsychotics.

The therapeutic action of the drugs occurs when 65% to 85% of brain D2 receptors are occupied. When more than 78% or 80% of the D2 receptors are occupied then the side effects associated with the atypical drugs occur. The atypical drugs occupy less of the receptors. The length of time that the drug occupies the receptor is also important. The older drugs stay on the receptor much longer than the newer ones thus these newer drugs have fewer parkinsonism side effects.

Haldol stays on the D2 receptor for 38 minutes, chlorpromazine for 30 minutes but clozapine for only 15 seconds and quetiapine for 16 seconds. This short time period is still long enough to interrupt dopamine but to then allow enough to get through to avoid the side effects. It is believed that only a few hours a day of 60-70% D2 occupancy is sufficient to relieve psychotic symptoms. Of course, these newer drugs do have other side effects. They can cause extreme weight gain, type 2 diabetes, elevated cholesterol levels and sexual side effects such as impotence and disrupted menstruation.

One of the criticisms of antipsychotics mentioned by Robert Whitaker was based on one of Philip Seeman’s animal studies on hypersensitivity to dopamine. These drugs induced an increase in dopamine receptors which then led to the antipsychotic effect becoming less potent. Whitaker referred to this as withdrawal psychosis. Both Drs Alan Francis and Fuller Torrey dispute this in their critiques of Whitaker and Dr Torrey suggests that the dopamine hypothesis is far more complex than Whitaker admits. I can’t find where I wrote this but at the time, I contacted Dr. Mary Seeman (as I had heard that Philip was not well) and asked her about Whitaker’s ideas. She e-mailed me back to say that Whitaker had misunderstood what the paper was about.

Mary Seeman has also been involved in significant research into schizophrenia as well and particularly into gender differences in schizophrenia and the impact of parenting with mental illness. She founded the first outpatient clinic for women with psychosis at the Centre for Addiction and Mental Health in Toronto. She has authored 278 articles on schizophrenia while her husband penned compared to 173 for Philip.

Guest Blog – Saved From Committing a Psychotic Murder

By Joseph Bowers

There was no one in this world I loved more than grandma when in my right mind so why did I try to kill her? By the time I turned 17 in 1964, I had become totally absorbed by psychotic delusional fantasies. I was living with my grandmother and she and my grandfather, who had died about ten months earlier, had raised me from the age of two. Also living with us was my Uncle Fred who was not home much.   

One evening shortly after my birthday, my brain became convinced that the devil had replaced my grandmother’s soul from her body with his own. He was doing this waiting for an opportunity to kill me. I don’t remember exactly who I believed I was: God or Jesus, a critical figure for good in the ongoing battle of good versus evil in any case.  

Alarmed as I was, my brain saw this as a great opportunity. I could kill my grandmother’s body whereupon the devil’s soul would be forced to vacate. At that point, my spirit friends would capture him and imprison him eternally. Without his leadership, the forces of evil would crumble and the battle of good versus evil would be over once and for all with good triumphant. I probably had a plan for restoring my grandmother’s body and reuniting body and soul. We would all live in peace happily ever after. 

Just after grandma went upstairs to bed that night, I took a single shot 16-gauge shotgun out of a closet, loaded it and started up the stairs toward her bedroom. As I reached the top of the stairs, looking in through her open bedroom door, I saw her kneeling by her bed praying. 

Confused, I hurried on down the hallway out of her line of sight. What was the devil doing kneeling in prayer? Surely, he had somehow become aware of what I was up to and was trying to fool me into thinking this was just my dear grandmother after all. 

Taking a deep breath. I went back down the hallway and entered her room. As she turned to me, I pressed the barrel of the shotgun against her chest and pulled the hammer back cocking the gun. At this point she reached out to me touching my arm and pleaded, “Joe don’t! You’ve never been mean to me!”  

Time seemed to stand still as I wrestled with my dilemma. Do I pull the trigger or not? 

I pointed the gun to the floor. With my thumb on the hammer, I pulled the trigger letting the hammer down gently harmlessly. Breaking the breach, I unloaded the gun, and we went downstairs to wait for Uncle Fred to come home. 

Nearly sixty years later, I still wonder what saved my grandmother that night. Was It the uncertainty caused by finding her in prayer? Did her reaching out and beseeching me somewhat reestablish our relationship and make it harder to believe her to be the devil? Did I have one of those brief lucid moments that sometimes come in the midst of psychosis? I just don’t know, but I’m thankful whatever it was. 

That night they took me to Middletown State Mental Hospital in lower New York State where I would stay for more than two months being treated for what they diagnosed as paranoid schizophrenia. 

At the hospital I received the best science-based treatment available in 1964. My family never got a bill. The state of New York paid for it. I was able to leave the hospital after about two and a half months reasonably stable. As a teenage boy from rural upstate New York and a family of limited financial resources, I didn’t realize how lucky I was to get this kind of treatment.  

There would be more than twenty years of struggling with recuring psychotic episodes. There would be more hospitalizations and a couple arrests. 

In time I was put on a medication that proved very effective without serious side effects, I’ve developed a solid support system of professionals, family and friends and I have learned effective coping skills. Working with a professional, my wife and I learned signs of impending illness which would alert us to take preventative action. I haven’t had a serious episode in more than thirty years now and have overall lived a reasonably normal and successful life. 

Never on any sort of disability insurance, I have held down many jobs. For two years I fought forest fires on a hotshot crew for the U.S.D.A. Forest Service, worked as a roughneck on oil rigs and retired from twenty-nine years helping produce low-cost electricity at a large power plant.  I’ve earned a B.S. degree from a major university and had a successful marriage. My wife and I have three grown children all healthy, doing well and contributing to society. 

I am truly one of the lucky ones. 

With the changes I’ve seen in mental health care in my lifetime, I can just imagine how things might go in this day and age. A teenage boy from the country and poorer parents developing serious mental illness would face a different scenario than what befell me in 1964. 

If he got a hospital bed at all, he would almost certainly be released way too soon and get little of the needed support on the outside. It’s not hard to imagine a life of homelessness on the streets in and out of jails and prisons. This happens all too often. 

The big paradox for me is that even as our ability to treat serious mental illness has increased a great deal in my lifetime, the likelihood that people will get the treatment that is available is much less.  

Joseph Bowers now lives in Colorado                

Financial and Housing Support for the Mentally Ill

By Marvin Ross

Poverty and homelessness are two hallmarks in the lives of the mentally ill in addition to what is often poor health care. The one thing that the Covid pandemic illustrated in Canada is the lack of a proper safety net for this group. The Canadian government acted swiftly to help support people who lost their jobs, small businesses and landlords as the result of the lockdown. The disabled have been ignored.

Ontario, where the monthly support for the disabled comes to the Dickensian amount of $1169 (barely enough to rent an apartment), managed to give some people all of $100 a month extra for four months. The Federal government promised an additional $600 one time grant but only to those who have a very hard to get disability certificate from the Canada Revenue Agency. That money has still not been allocated.

As a result, there is considerable talk of a guaranteed annual income for people to ensure that everyone can live above the poverty line. That is years in the future if ever. Spain was the only country to actually try to implement such a plan although recent reports suggest they are having problems implementing it. The logistics of such a plan are fairly basic and would do much good for many as I’ve discussed elsewhere. What is of immediate concern is that those with serious mental illnesses that come on in late teens and early twenties like schizophrenia live in terrible poverty and suffer from considerable homelessness or live in substandard places.

If the ill individuals are lucky, they have family who care for them at tremendous financial expense to the families let alone the emotional and psychological stress. An international survey conducted by the The European Federation of Families of People with Mental Illness (EUFAMI), paints a horrible picture of what families go through. In Canada, families spend an average of 15 years in that role and 1 in 3 are at the breaking point. Most feel stigmatized by professionals and ignored by doctors, nurses and social workers.

This is the reality which results in many with serious mental illness living on the streets, in shelters, begging for change at busy intersections, being arrested and transitioning into drug use. Thanks to Covid, there are now a couple of tent cities established in my own community because people have nowhere to go. The solution, of course, is long term and multifaceted. This is what is needed off the top of my head:

  • coordinated planning that involves families who today are mostly ignored
  • suitable medical services for the mentally ill which should include hospitalizations that are of sufficient length to stabilize patients. Too often, because of bed shortages, patients are discharged before they are ready and to little or no community supports or housing.
  • Adequate income so they may live with some dignity and not on a stipend that is about 40% below the poverty limit.
  • Affordable housing that matches the needs of the client (from heavy support to as much independence as required)

Adequate income can and should be achieved either by a sensible disability system or a guaranteed minimum income. A compassionate society should provide to those who are either born disabled or develop a disability with a reasonable income so they can enjoy what life has to offer – adequate housing, nutritious food, entertainment, clothing, transportation, etc.

Ontario has the most generous disability payments in Canada and yet the level is, for a single person, all of $1169 a month. If the disabled person lives in a full service group home (room and board), the money goes directly to the private operator of the home and the resident is left with a little over $100 a month for clothes, self care products, bus fare, entertainment, and other purchases. These are nothing but modern day versions of the Victorian workhouses. Is it any wonder we find many of these residents begging for change on our streets?

Supported and independent housing options vary where they exist but, in keeping with the current focus on combining mental illness and addictions together, some of these options combine both residents in the same projects. The characteristics and the needs of both clients differ so they should not be combined. Psychiatric facilities often separate the two into units for people with specific mental illnesses (schizophrenia, bipolar, etc), units for those with both a mental illness and a substance abuse, and units for substance abusers.

That separation does not carry over into community service and housing. One drop in centre that I heard of just recently combined the two groups and, as a result, were evicted from the church facility they rented. Seems that the neighbours were upset that the addicts were shooting up in the area. A supported housing complex that I am familiar with combines both and is a disaster. The mentally ill with no addiction problems are not happy. Drug use is rampant and there have been numerous overdose deaths in the past two years along with a number of overdoses where the person recovered.

The agency that runs the facility calls it a harm reduction building so ignore the drug use and supply naloxone kits for overdoses. However, the Harm Reduction Coalition defines it as incorporating:

a spectrum of strategies that includes safer use, managed use, abstinence, meeting people who use drugs “where they’re at,” and addressing conditions of use along with the use itself. Because harm reduction demands that interventions and policies designed to serve people who use drugs reflect specific individual and community needs, there is no universal definition of or formula for implementing harm reduction.”

I’m not sure how much of this the project does but I do know that the activity of those with addictions is disruptive to those who do not use substances.

If we are going to build more appropriate housing for people (and we should), it is imperative that we design for the specific needs of the people who are going to live there with appropriate supports and with input from families. It is, after all, families who support their ill relative and bear the burden of providing financial, emotional, and medical support. As mentioned earlier families are stressed out and need to know that their ill relatives will be properly cared for. To be somewhat blunt, they want to die knowing that all will be reasonably well.

I’ve just been looking at a needs assessment and action plan for what is called a justice focused mental health supportive housing project in Toronto. All involved in this are research staff from agencies such as the Canadian Mental Health Association, various corrections and addictions groups. No family to bring a measure of reality to the process.

I also have to wonder why they focus on those involved with the justice system. I’m not saying they have no needs but they point out that 25% of applicants for supportive housing in Toronto are involved with the justice system. Should supportive housing not start with the largest group who need the service like the 75% who are not involved with the justice system? They also point out that many in this group are discharged from jails or rehab facilities with nowhere to go making their need urgent. But that problem is the same as those without criminal or drug activity who are discharged from hospitals.

What made me chuckle was the suggestion that they might be able to rent units in regular apartment buildings for their clients. That naive suggestion took me back to my previous life as a government planner. I was on a working group looking at how to best deinstitutionalize what used to be called the retarded from institutions into the community. As I recall, that particular institution was for problematic people with serious behavioural problems. At the time, there was a glut of condos on the market in Toronto and one of the group thought it would be a good idea to try to rent or purchase surplus condos to be used as community group homes.

That person offered to go visit some real estate agents who specialized in condos to see if that would be possible. She returned to the next meeting to say that she was not greeted well by the agents who practically threw her out of their offices.

The other naive bit in this plan is that the housing “can be met with Housing First –i.e. direct access from homelessness to housing, minimal preconditions, no “treatment first” rule, independent tenancies, and de-linked supports.” I think this aspect of Housing First is absurd and the best example is the one I gave from my book in my obituary to DJ Jaffe. In that case of Mrs Brown, she was put directly into housing from living in the gutter at E 65th St and 2nd Ave and performing her bodily functions on the street.

It did not work and it won’t for most people.

What we need is rational planning for the mentally ill and the addicted but what we have is a hodge podge of plans and schemes that do little good. That is why we are in the mess we are in and few get any help.

A Huge Loss for Families

By Marvin Ross

I’m a little late writing this for a number of reasons but one has been shock. Many of my readers are already familiar with the fact that DJ Jaffe has left this world and left it very suddenly. DJ told very few people of his worsening leukemia and continued to work until almost the very end. In fact, a few days before his death, he sent me a note to tell me that he had removed one of my posts from his Facebook Page, the National Alliance on Serious Mental Illness, because it violated his policy.

I put it back and replied that I did not think I did violate policy. His reply was OK out of friendship, I will let it go this time.

Next, I heard he was gone. Like most people, I was shocked.

DJ first became involved in the business of advocating for the seriously mentally ill when his wife’s sister moved to New York to live with them. She had schizophrenia and he and his late wife found themselves embroiled in the politics of advocating for someone with a disease that has been and still is largely ignored by society.

He quickly learned that families are also ignored and often vilified and so this was the group he stood up for and tried to empower. DJ, over the years, has been involved with NAMI (the National Alliance of Mental Illness), the Treatment Advocacy Center and his own creation Mental Illness Policy Org. Thanks to his tireless work, he is responsible for the introduction of Kendra’s Law in New York State and the introduction in the US of the Helping Families in Mental Health Crisis Act

Kendra’s Law allows courts -after extensive due process- to order a certain group of narrowly defined individuals with serious mental illness who already have a past history of multiple arrests, incarcerations or needless hospitalizations to accept treatment as a condition for living in the community. Before Kendra’s Law, the law required people so ill they refuse treatment to become dangerous before they could be required to accept treatment. Families felt the law should prevent dangerous behavior, rather than require it. Kendra’s Law allows judges to order the recalcitrant mental health system to serve people with serious mental illness, rather than cherry picking the easiest to treat for admission.

Based on numerous studies, Kendra’s Law has:

reduced homelessness (74%); reduced suicide attempts (55%); reduced substance abuse (48%); reduced physical harm to others (47%); reduced property destruction (43%); reduced hospitalization (77%); reduced arrests (83%); reduced incarceration (87%).

If you are looking for research material, the Mental Illness Policy website is a go to source. DJ’s book, Insane Consequences, is another excellent source of material for anyone wishing to learn of the realities of serious mental illness. I reviewed the book when it first came out and pointed out that all the royalties he gets from the book are donated to Mental Illness Policy Org and to the Treatment Advocacy Center.

DJ was a friend who I talked to and exchanged e-mails with over the years but like many friends and colleagues on the internet, I never did get the chance to meet him in person. Something I do regret but long before I knew who he was, I quoted one of his advocacy issues in my own book on schizophrenia. What he had to say then is still relevant today so allow me to show you what I said back in 2008 in Schizophrenia Medicine’s Mystery Society’s Shame:

Harvard Law School or Bellevue Psychiatric – Which is harder to Get Into?

If you are mentally ill, the answer is easy – Harvard! At least that is the opinion of D. J. Jaffe, a spokesman for the New York City Friends and Advocates of the Mentally Ill as quoted in the New York magazine “Manhattan Spirit” in 1991 and reported in Torrey (Out of the Shadows). Jaffe was referring to the case of a New York homeless woman named Joyce Brown and recounted in the Torrey book. It is bizarre but a perfect example of the absurdity of the system.

Ms. Brown was a mentally ill homeless woman who resided on a steam grate at E 65th Street and Second Ave in Manhattan. She urinated on the sidewalk and defecated in the gutter or on herself. At times, she tore up money passersby gave her, ran out into traffic and shouted obscenities. Many times, she was not properly dressed for the cold weather. Five times psychiatric outreach teams took her to hospital but each time she was released by psychiatrists who deemed that she was not a danger to either herself or others.

On the Diane Rehm National Public Radio show after the Virginia Tech shootings by a mentally ill man who had fallen through the cracks and should have been hospitalized before he engaged in his murderous rampage, Torrey stated somewhat sarcastically that in order to be deemed a danger to yourself or others, you have to either try to kill yourself in front of the psychiatrist or try to kill the psychiatrist.

Ed Koch, the mayor at that time, saw the women and tried to have mental health professionals get her treatment. He was told that she was not deemed to be in danger or dangerous. Koch proposed new and less restrictive legislation that would make it easier to hospitalize someone. Koch referred to the civil libertarians who opposed hospitalizations as the crazies who deny people the right to treatment.

Under his new legislation, Ms. Brown was hospitalized but the New York Civil Liberties Union challenged that in court. In claiming that Ms Brown was not a threat they argued the following in her defense:

  • Other New Yorkers also urinated on the sidewalk
  • Defecating on oneself is not really a threat to one’s health 
  • Running into traffic was no different than jay walking 
  • Tearing up money was a symbolic example of the woman’s independence 
  • Her obscene language was no worse than what is commonly seen in movies

Judge Robert Lippman found for the Civil Liberties Union and stated that “the sight of her may improve us”. By being an offense to aesthetic senses, she may spur the community to action

Upon her release, Ms. Brown was invited to appear on the Phil Donahue Show and to address a forum at Harvard Law School.

And the legal situation has not improved.

Here is an older interview of DJ with John Stossel

RIP DJ. You’ve done well and both the families of those with serious mental illness will miss you as will the seriously mentally ill. And DJ would agree that this obit should be dedicated to the hard working and stressed out parents (mostly mothers) who struggle to help their kids when no one else will.

Premiere – My Name is Walter James Cross and I Have Schizophrenia

By Marvin Ross

walter

Premiering on Youtube July 30, 2020 at 7:30 is the latest production of Dr David Laing Dawson’s powerful one act play on schizophrenia. My Name is Walter James Cross and I Have Schizophrenia was first written about 20 years ago based on David’s experiences treating people with schizophrenia. That version of the film has been played at various conferences including the Annual Meeting of the American Psychiatric Association in New York and has been broadcast on TV Ontario.

The current video premiering on July 30 is a new production that was produced by the Artword Theatre in Hamilton Ontario and performed this past March before it was forced to close because of the Covid-19 lockdown. The March 12 production was filmed using three cameras in a performance described by the producer as “flawless”.

One review described the impact of the play as

“it’s the power of “Walter” that still, long after I’ve left the theatre, the way he experiences the world is very much with me — to the extent that I can understand it, and the play enlarges that extent.”

He goes on to say

“the remarkable achievement is that he (the actor) lifts our engagement with Walter beyond the stare of curiosity, albeit sympathetic, into a trance in which we begin to identify with the struggle of his being”

I have to confess that I did not see this production simply because I’d seen it so many times before and the original actor who played Walter was brilliant. I cannot imagine anyone doing a better job than him but I can’t wait to see. Where this production differs is that the soundscape allows the audience to actually hear the voices in Walter’s head.

Another reviewer commented that the play

“is a theatrical vessel through which we can all better understand our personal interactions with the mentally vulnerable. It’s impossible not be emotionally touched by his presentation and each and every audience member will be remembering their own Walter as the stage lights go down.”

Walter is an opportunity to understand and to sympathize with the life and challenges of someone with schizophrenia. I can’t recommend it enough. This is the link to the youtube channel where Walter will be live Thursday July 30 at 7:30 and where it will remain in case you can’t make that time. https://youtu.be/_CQadomWvUA You can set a reminder for the premier on the site.

Guest Blog Will the New Federal COVID Mental Health Funds Help Those With Serious Mental Illness?

By Home on the Hill

Prime Minister Trudeau has announced an investment of $240.5 million to develop, expand, and launch virtual care and mental health tools to support Canadians during the COVID Crisis. This action is laudable, however, will people with serious mental illness be helped with this money?

Many have symptoms such as “anosognosia” or lack insight that they are ill and will not reach out and ask for the help that they need. Home on the Hill has heard from a family where the telephone crisis service asked that the family member with schizophrenia, and in crisis, make the telephone call himself which he did not do.  When things became overwhelming, the family called the police which they had done many times in the past.. While the police do treat families with respect, their actions are not subtle and five police cars can land on your street which causes consternation and suspicious questions from neighbours.

Kathy Mochnacki, a family caregiver and Chair of Home on the Hill, attempted to communicate that  “anosognosia” prevented people from accessing care at the Service Coordination Council on Mental Health and Addictions of the Central Local Health Integration Network (LHIN) and felt uncomfortable with the response of some members who did not appear to understand this symptom. Over the three year span of this Council, she repeatedly asked that a psychiatrist attend the meetings but this request was disallowed even though psychiatrists play a significant role in a family member’s care.  This Council was to embed the patient and family voice and an Interim Report from the Centre for Excellence in Economic Analysis Research (CLEAR) evaluation group of St. Michael’s Hospital in Toronto recommended  “meaningfully engaging people with lived experience and their family members”.

Despite this, the family voice was not heard. Until it is, scenarios like the above described example will continue to happen.

Education to service providers about the symptoms of psychotic illness would help them understand anosognosia and other symptoms of psychotic illness which prevent the individual from reaching out.  Service providers would then understand that by not asking for help, the individual  is not expressing a choice but demonstrating a symptom of his or her illness. And families are not left with the only option of calling costly emergency services such as the police. (please see a training opportunity about anosognosia education by Dr. Xavier Amador)

The above mentioned family are grandparents with their own health issues whose grandson was finally taken to hospital by the police but was shortly discharged.  He walked all the way home from one city to another and arrived at the family home around midnight.  When we last checked, the grandparents said they are “practicing deep breathing and are saying prayers” and desperately scrambling for emergency housing.

Is this how our society should treat its most ill citizens and their families?

Is there a way that this new funding could lessen the burden of this family when the reason for their distress is systemic?  

And why does the current COVID pandemic garner a response of mental health funds, when the ONGOING PANDEMIC OF UNTREATED PEOPLE WITH SERIOUS MENTAL ILLNESS who lie abandoned on our streets, and in our jails continues to be ignored? 

Five thousand citizens live with a serious mental illness in the city of Richmond Hill alone. These citizens deserve appropriate hospital stays, education for them and their families about the illness, a psychiatrist, a family doctor for the many physical issues that they experience, rehabilitative supports, appropriate supportive housing and a mental health system which listens to them and their families with respect.

The COVID pandemic is an opportunity to draw the curtains back, and ask some hard questions. The family home, out of necessity, has replaced the asylum and until we get adequate and appropriate supportive housing, this will always be. Family caregivers perform most of the care tasks and ask that this fact be appreciated.. It is not a role that they chose. While families are included in meetings with the doctor when the patient has cancer, they are so often excluded  from the discussion if their loved one has a mental illness even when the patient has given permission.

Is it not time for mental health professionals to help mitigate the myriad of barriers that families experience like the unrealistic Ontario Mental Health Act and entrenched attitudinal barriers. Can we not streamline, enhance (like increase hospital beds) and coordinate services that work to make it easier for patients and families?. Is there an opportunity to evaluate services and not depend solely upon inputs like the number of visits or the length of the wait lists but study outcomes such as whether the youth suicide rate has gone down?.

Are there innovative ways to engage vulnerable people at risk as 50% of people with schizophrenia have the symptom of “anosognosia”.  Could service providers look at less stressful ways to deliver care such as the practice of visiting nurses who give injections now practiced by St. Joseph’s Hospital in Hamilton. Finally, many families who look after a vulnerable relative with no help from the system are bewildered at the costly bureaucracy which appears detached and totally removed from what they are experiencing.  Is there a way, instead, to spend our precious financial resources on these aforementioned much needed determinants of health for people with serious mental illness?

Home on the Hill is a supportive housing initiative in Richmond Hill, Ontario. For more information, visit http://www.home-on-the-hill.ca/

Addendum

A recent editorial in the Lancet points out that the one group that is not getting any consideration during this pandemic are those with serious mental illness. The authors suggest that:

Those who wish to build fairer societies and health systems after the pandemic ends must learn about and prioritise the needs of people living with severe mental illness as a matter of urgency.