Changing My Mind

Experience of severe mental illness in Canada and recovery in Australia — Chapter in 'Coming Out Proud to Erase the Stigma of Mental Illness'

Personal stories are an important way to try to reduce stigma, raise awareness of recovery, enhance self-efficacy and inspire hope to support better outcomes for people with mental health conditions.

I've reproduced my chapter from a book published a decade ago in the U.S. and added several links for additional information for anyone who is interested.

Reference: Mahar K. (2015) ‘Changing My Mind’ in Coming Out Proud to Erase the Stigma of Mental Illness: Stories and Essays of Solidarity. Corrigan P.W., Larson J.E. & Michaels P.J. Instant Publisher: Collierville, U.S.A.

Changing My Mind

For a number of years I wanted to hide that I was diagnosed with a severe mental illness and had experienced a traumatic life-altering episode of psychosis in Toronto. Fortunately, I changed my mind.

Today, I am a mental health advocate, social worker and activist living in Australia, where I am employed to assist individuals with their mental health recovery. Ironically, part of this support includes sharing relevant aspects of my own lived experience of bipolar disorder.

There were a number of obstacles that had to be overcome for me to rebuild my life, but stigma was by far the biggest one that I faced. To be more precise, internalized stigma was the most damaging. I was effectively paralyzed by shame. Furthermore, I was totally demoralized and felt hopeless because I accepted the false stereotype that people with severe mental illness cannot recover.

Upon reflection, my decision to stop trying to hide my experience of mental illness set me free to rebuild a satisfying life. However, there is no universal recipe when it comes to disclosure. I’ve learned that it is an individual’s choice whether to disclose, with whom to disclose, and also how much to share.

This is the part of my experience of mental illness and recovery that I wish to share.

Growing Up

I was born in Montreal in 1962, six months after my grandfather had died of pneumonia while being treated for mania in a psychiatric institution in the city. My father developed symptoms of bipolar disorder during my childhood, but he was not diagnosed for years, and my family experienced periods of financial hardship. I was tested for ulcers at age 11 but the doctor determined that my frequent abdominal pain was due to stress. Over time I periodically experienced symptoms of anxiety but I did not tell anyone. My parents' marriage ended while I was in Grade 9 and the following year my father was briefly homeless. However, I put on a brave public face which effectively hid my feelings of sadness, fear, embarrassment and anger.

From the outside, it was not obvious that I was having any problems. I had lots of friends, enjoyed playing baseball and football with them on weekends, and finished high school in 1980 without apparent difficulty. In fact, my teachers placed me on their honours list and my classmates selected me as the outstanding male graduate in the class. But at 17 years old I felt worn out and wanted to reinvent myself. Three months after high school graduation, I left my family and friends in Montreal to study business at the University of New Brunswick.

At university, I repeatedly earned a position on the Dean's List for my academic performance and was elected president of an on-campus residence, primarily for my ability to throw decent parties. During 3rd year I experienced a brief period of elevated energy, confidence and creativity, which was followed by a loss of motivation and energy. I dismissed the mild mood swings as being normal for someone my age and dropped out of university for a semester to recharge my batteries. Recharged, I returned to university and was awarded a Bachelor of Business Administration with Distinction, the highest academic category.

At 22 I was hired by a Canadian subsidiary of a Fortune 500 company, bought my first real estate property and started following a disciplined savings and investment plan. Two years later I started a corporate career in the Canadian broadcasting industry. Shortly after turning 31, I was hired by a broadcasting company for my knowledge of the cable television industry, to manage corporate relationships and negotiate distribution agreements for its specialty television networks across Canada. It was a wonderful job for me as I was part of a skilled and enjoyable team at a highly innovative broadcasting company.

At that point I thought I had my life all figured out. My plan was to remain with my employer until I turned 40 and was able to afford to retire from corporate life to an alternative lifestyle. I wanted a simple existence which permitted me more freedom to travel and join a group like Amnesty International or Greenpeace. But my plan for ‘Freedom 40′ was hijacked by mental illness.

Onset of Symptoms and Activism

In July 1994, three months before my 32nd birthday, I began to have difficulty sleeping properly during a stressful period. However, I did not go to the doctor because I felt fine otherwise. By mid-August I started to feel absolutely fantastic. Despite less and less sleep, my energy and productivity increased and I felt more creative and confident. Early one morning I erroneously concluded that sleep was highly over-rated.

In hindsight, this period was a window of opportunity for me to seek professional help before it was too late, but I was unaware of all the symptoms of bipolar disorder. In spite of my family history of mental illness, I somehow felt immune to the possibility of losing control of my mind, my primary asset. Nevertheless, by the beginning of that September, I was suffering from mild psychosis. My perception of reality had become impaired by highly seductive delusions of grandeur, that I was destined to change the world.

While in this mental state, I decided to fix the Canadian broadcasting system. During my career I had lost faith in the integrity of the Canadian Radio-television and Telecommunications Commission (CRTC) and the quality of decisions by this federal regulator. As a result, I quit my job to undertake this project in the public interest. In the process of conducting regulatory research, I discovered evidence that officials at the CRTC had adopted a scheme to unjustly enrich influential corporations by allowing several million Canadians to be over-charged for cable television service by close to $600 million over five years. After a couple of lawyers agreed to help me pursue the issue, things got really interesting.

In March 1995 I held a Parliament Hill press conference in Ottawa with three members of Parliament and my lawyers. The MPs and I called on the federal government to investigate the matter. As a result, questions were directed to the prime minister the next day in the House of Commons (Hansard 11255), but the well-documented case of wrongdoing was not pursued. It was abundantly clear to me that corporate power had silenced elected representatives and that the democratic process had been undermined.

After the federal government did not investigate the matter, I decided to try to personally resolve the legal right of consumers to rate refunds, and simultaneously pressure the government to democratically reform the CRTC. During May 1995, as part of the strategy, my pro-bono legal team initiated a lawsuit on my behalf against the largest cable television company in Canada, a company that was part of the corporate empire controlled by Ted Rogers. The billionaire was definitely not a soft target for such activism – some described him as Canada’s Rupert Murdoch. (Years later, journalist Caroline Van Hasselt wrote in High Wire Act: “Ted Rogers is like the great white shark, which tears into its prey until its needs are sated.”)

Mahar v. Rogers Cablesystems Ltd. became the front-page lead story in The Toronto Star, and a columnist for The Globe and Mail supported my challenge against the cable television industry and the federal regulator, writing that I was “charging head-long into battle with two of the most powerful opponents in the country.” It seemed as though I had finally found my purpose in life. I had become a social activist.

In response to my actions against the unjust corporate enrichment scheme, my industry opponents effectively undermined my credibility by initiating a smear campaign against me personally. Journalists reported that I had been described as a nut, fanatic, crank and fruitcake - despite my campaign being based upon documented facts that were simple to verify. The smear campaign was so intense that a couple of journalists felt it necessary to defend me in the press.

• “Keith Mahar is not nuts. Nor is he a fanatic or secret agent for the telephone companies, who are allegedly paying him to sabotage the cable industry.” (Antonia Zerbisias, The Toronto Star, 9 July 1995)

• “Predicatably, Mahar has been characterized variously as a “crank” and “a fruitcake” by his opponents, but I think he’s something much more rare, namely, an angry consumer who’s fed up with being victimized by monopolistic capitalism and a compliant, business-friendly government regulatory agency.” (John Haslett Cuff, The Globe and Mail, 11 July 1995)

Despite the allegations that I was “nuts” and my case had no merit, the corporation I sued retained a legal team headed by one of Canada’s top barristers. With this lawyer’s assistance, the corporation won a precedent-setting decision on jurisdiction in October 1995 that stopped the court from ruling on the merit of my legal case. However, weeks later I won a precedent-setting decision on costs. The judge designated me as a public interest litigant and determined that my lawsuit had been in the public interest and had “raised a genuine issue of law of significance to the public at large.” (Mahar v Rogers Cablesystems Ltd. continues to shape costs jurisprudence in public interest litigation cases in Canada and internationally.)

I was determined to pursue the case further in the Federal Court of Appeal and remember thinking at the time that I would never be in a bigger battle in my life, but I was soon proved wrong.

Depression and Psychosis

The legal issues that I raised in 1995 remain unanswered to this day because in May 1996 my campaign was rudely interrupted by a life-threatening episode of depression – the first severe depression in my life, at the age of 33. It came on really fast, and hit exceptionally hard. Feelings of courage and hope were replaced by terror, futility and pure misery. One day I found myself on the bedroom floor, curled up in the fetal position struggling to cope with the agony of the moment. That afternoon, I was diagnosed with bipolar disorder and felt ashamed. In addition, I was frightened that I would never be able to work again and my old fear of being poor resurfaced with a vengeance. During that period sleep was extremely difficult and thoughts of suicide dominated my waking hours.

A psychiatrist told me that it was impossible for me to resume my role as a social activist due to stress being a major trigger to relapse of mental illness. However, in the process of trying to hold powerful opponents accountable, I had discovered my own political voice, and I was exceptionally motivated to finish my campaign In fact, the struggle had profoundly shaped how I perceived myself as a person. The thought of stopping was heartbreaking, precisely at a time when I required a dose of hope. Ultimately, I ignored the psychiatrist’s warning.

Unfortunately, I returned to my campaign too early, pushed myself far too hard, and my mental health quickly started to deteriorate. Soon symptoms of both mania and depression surfaced and played a tug of war with my mind, dragging me to uncharted territory and resulting in uncharacteristic behaviour. I was lost and my life was rapidly unraveling. Making a critical error in judgment, I abruptly stopped taking my prescribed medication just as it was needed most – an incredibly stupid decision, born out of impaired thinking due to my illness, ignorance, anger and ego. In short order, my mind was racing beyond belief and I was propelled into the stratosphere of major psychosis where logic and reason totally abandoned me.

Loss of Self

On 14 November 1996, in the midst of this psychotic episode, I handed out hundred dollar bills to panhandlers in the city, convinced that I was somehow responsible for their plight. Though I am not a religious person, as I walked down Toronto’s Yonge Street that cold fateful afternoon, I thought that God wanted me to demonstrate my faith that the truth was the only thing required to change the world, by walking the Earth naked for the rest of my life. I thought that this action would eradicate poverty and end human suffering in the world. With this mission in mind, I set off to Ted Rogers’ office hoping to find a solution to the CRTC issue. Unfortunately, changing the world is not quite so simple. Furthermore, a Rogers Communications Inc. employee witnessed my ‘March for Freedom’, ensuring catastrophic damage to my reputation that same afternoon.

After being transported by police to a Toronto psychiatric hospital, I was treated with medication and discharged two weeks later. But the most damaging consequences of the episode were not readily visible. My prolonged campaign had placed considerable strain on my relationship, a situation that was made significantly worse by my symptoms of severe mental illness and uncharacteristic behaviour. By the time I was discharged from hospital, my long-term relationship was over and my reputation was destroyed. Furthermore, I was publicly humiliated, privately ashamed, and suffering from profound feelings of grief and loss. My self-esteem, confidence and self-respect were at rock bottom. In effect, I no longer knew who I was, and I had absolutely no idea how to go on. I was totally lost.

I wanted to disappear, so I did. I drifted for a period of time in a dark mood, spending that Christmas by myself in the Dominican Republic. I spent the next Christmas alone in South Africa. In between I travelled in the United States, Europe and Africa, thinking about life and death, while trying in vain to make sense of how things had gone so wrong. While I kept moving, anxiety always managed to find me.

During that time, I was unable to imagine a future that was worth living. I was convinced that I was never going to work or enjoy life again.

I was wrong.

From Canada to Canberra

Fortunately, I did not encounter any major drama while outside Canada (although I did come face to face with a large black mamba snake and a male lion over a 24-hour period, while on foot in Botswana’s Okavango Delta) and returned to Toronto in early 1998. Later that year, I was hesitant to accept an invitation to a friend’s party fearing discovery by strangers of my mental illness or that I did not have a job, but I forced myself to go anyway. That seemingly small decision forever changed my life, as it was there that I met my current partner Gail, an Australian citizen who was living in Toronto. Love, however, is not a cure for mental illness and I continued to struggle with symptoms of bipolar disorder and anxiety, in addition to intense feelings of shame and a loss of identity.

Furthermore, I was torn. I dearly wanted to revive my social justice campaign against the federal regulator and corporations, but did not pursue the matter because of the humiliation I felt, knowing that my opponents in industry and government, as well as journalists, were aware of my psychotic episode.

Defeated, directionless and extremely anxious that I might bump into someone from my former industry, I stagnated in Toronto. It felt as though I was stuck in my own Waterloo. My unhappiness was adversely affecting my relationship, so we decided to make a fresh start and moved to Australia in October 2001 - our flight landed on my 39th birthday. It was not an easy decision, as my family and many of our long-term friends live in North America.

One of my original objectives of immigrating to Australia was to hide my mental illness from as many people as possible. But of course the fact that you are now reading about my experience with bipolar disorder demonstrates that I changed my mind.

Benefits of Disclosure

Once again, a major shift in the focus of my life occurred from just one small step in the right direction. By chance, in early 2002 I saw a poster for Mental Illness Education ACT (MIEACT, with ACT standing for the Australian Capital Territory) on a bulletin board at the University of Canberra. The non-profit organization needed volunteers to share their ‘lived experience’ of mental illness with high school classes as part of its school education program. I found the idea of using my story of mental illness to try to help young people and reduce the stigma of mental illness appealing. I wish that I had known more about mental illness earlier in life.

I decided to become a mental health advocate. This was a decision which felt far more natural than trying to hide my experience, and which ultimately permitted me to rebuild my life as a person diagnosed with a severe mental illness.

Joining MIEACT proved an instrumental step in my recovery. Meeting other people with mental health issues who I respected helped me accept my own mental illness and put it into its proper social context. I also felt productive and part of the community again, while the reaction of high school students to my personal story helped me to feel more positive about myself.

All of this activity soon opened other doors. In September 2003 I was invited to be an inaugural member on a bipolar disorder reference group for “Beyondblue”, the Australian national depression initiative. Two months later I was elected president of MIEACT.

Momentum and Transformation

I finally felt confident enough to put together a resumé and search for part-time employment. Given the massive gap in my employment history, I struggled over how exactly to address the issue with potential employers. Finally, I made the decision to disclose my mental health issues and approach employers who might be less likely to discriminate against me. The strategy worked. I was hired for one day a week by the Mental Health Council of Australia in January 2004, at the age of 41. One day per week probably does not sound like much to most people, but I felt like I had won the lottery. It was my first job in years, and the psychological rewards of employment far outweighed the financial gain, especially in terms of the social interaction with staff and the benefit of working to my sense of identity.

Importantly, I started to feel more and more like my old self, only far more secure in who I was than before my mental health problems. No longer was I ashamed to be someone living with a mental illness, which had been a major barrier to my recovery, and my ability to dream of a satisfying future returned.

After careful consideration, I decided to become a social worker and in February 2005 started studying part-time for a Bachelor of Social Work at the Australian Catholic University, a public university that is open to students of all beliefs. I did experience a couple of anxiety attacks in class during my first month in the course, but I was determined not to let mental illness stop me from achieving my goal to be a social worker, so I persisted. Soon I felt comfortable. The staff and students were friendly, and the small campus was a perfect setting for my return to university after a twenty-year hiatus. The course proved far more interesting to me than business had been. I especially related to the profession’s commitment to social justice and social change. Since I do not possess a strong aptitude for writing, I adopted a policy of starting academic papers early to reduce their stress, which worked out well.

Later in the same year Gail and I bought a house in Canberra close to a reserve, a perfect location to walk our dog and watch kangaroos. After experiencing the stress of moving four times in four years, settling down felt wonderful.

During August 2006 I became an Australian citizen. The citizenship ceremony in Canberra was quite moving and my status as a citizen left me with a heightened sense of belonging, which served to cement the fact that Australia is my home. That realization was thought-provoking in itself, however, because the month before that ceremony I had become an uncle, and my nephew was in Canada. This reality made me once again acknowledge the ongoing cost of rebuilding my life.

On November 13th 2006 I completed a three-month field placement in case management at a youth detention centre as part of my university program. Before starting I was unsure whether I would be able to carry out a full-time schedule because I had not worked comparable hours in more than a decade. Nevertheless, it ultimately proved to be an extremely positive and rewarding experience, highlighting the possibility of a future career in a challenging and important field. Moreover, the comments and actions of my clients and colleagues convinced me that I had made the right career choice to become a social worker.

The day after that field placement finished was my last day of university for the year; it was also the tenth anniversary of my episode of major psychosis in Toronto. I reflected on my battle against severe mental illness, coming to the conclusion that I had finally made peace with my mind. I also realized that I had never felt more satisfied or content in life. At that moment, I made the decision to start celebrating my recovery from bipolar disorder each year on November 14th, my former day of shame.

I completed my degree a year later, earned a position on the Dean’s List, and started working for the territory government in February 2008 as a case manager in youth justice – after disclosing my mental health issues during the interview process.

At my request, I was employed three days a week. The main reason that I wanted to work part-time for the statutory agency was to reduce the risk of relapse, while increasing my capacity to work more hours in the future. In addition, I did not want to reduce my involvement in mental health advocacy. In fact, I actually wanted to increase the amount of time that I was able to commit to mental health advocacy.

Consolidation and Contagious Recovery

While at university, Professor Albert Bandura’s work on human learning and the ability of ‘social models’ to enhance the self-efficacy of other people caught my attention. Specifically, I was inspired to consider ways to raise awareness of recovery and generate hope for individuals with mental health issues and their families.

At the International Initiative for Mental Health Leadership in March 2009, I launched a website to progress the creation of an online community channel for people with mental health issues: Mentalympians®. In its related press release, the Mental Health Council of Australia described my initiative as a “creative approach to promoting awareness of recovery [and] a world first website which is all about mental health recovery and resilience.”

Two months later, I had the opportunity to consolidate my passion for mental health with earning a living, which was simply too temping to turn down. As a result, I left youth justice to start working 4 days a week at Woden Community Service, as a peer support worker in a national recovery-oriented program funded by the Australian Government and delivered across the country by community organizations.

Hope has been identified as a catalyst for recovery, and a growing body of evidence suggests that it is possible for workers with a lived experience of mental illness to effectively assist other individuals experiencing mental illness in their recovery. I had a feeling that the role, program and community organization were going to be an excellent fit for me, and my feelings turned out to be correct. I am still employed in that same role, although I started working 5 days a week in 2011 (my first full-time employment since 1994). My health supports my belief that the job is a good fit. While I still periodically experience anxiety, I haven’t experienced depression since 2008, or psychosis since 2004. Moreover, in the first five years in my present role I missed less than two days a year on average for all types of sick leave.

In 2013 the Mental Health Council of Australia published a strategic publication addressing a range of issues, including an article I wrote regarding the peer workforce.

In that publication - Perspectives: Mental Health and Wellbeing in Australia - I describe the dynamic of peer workers helping to inspire hope by sharing their own lived experience as “contagious recovery”. I also note that a key feature of peer support is reciprocity, and that I am inevitably inspired by the people with mental health issues that I support. In short, it is a highly satisfying and rewarding job to help people with mental health issues in their recovery process.

Working openly as a person with a lived experience of mental illness has also given me more flexibility and freedom to try to raise awareness of recovery and reduce stigma. For example, I’ve shared parts of my story in the media (radio, television and in the press), as well as to public servants, mental health workers and a parliamentary committee examining education and employment.

To my surprise, I was acknowledged in the Australian Senate in 2011 by a senator who was at a function where I shared my story to help launch a resource to assist tertiary education graduates with mental health issues successfully transition into employment.

I turned 52 during 2014 and find myself far more patient than when I was a young man, which is reflected in my approach to Mentalympians. While I was able to establish an international advisory group for the project, including a number of prominent mental health advocates, I was unsuccessful in securing funding to progress the initiative. Although I consider that such an online community channel holds significant potential, I put the project on hold a couple of years ago. I decided to devote my spare time and energy to other areas in mental health, and to wait for a good opportunity to present itself in order to resume developing the initiative.

By adopting a longer-term vision for what I want to accomplish, the amount of stress is significantly reduced, thereby increasing both the sustainability of my efforts and the probability of success. It’s similar to one of Aesop’s Fables – The Tortoise and the Hare. I used to approach major life tasks like a sprinter, rather than a marathon runner. But I’ve learned that a slow and steady approach is far better for me in terms of managing my mental health, which, in turn, unquestionably helps me to achieve my goals in the end.

The Promise and the Present

There are numerous definitions of mental health recovery, but none have been more influential that the one penned by William Anthony, who defines recovery as “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”

I totally embrace the concept that recovery inherently involves a process of personal change and growth. However, I think that it is important to acknowledge that recovery can also involve a person maintaining some of their attitudes, values, feelings, goals, skills and/or roles. For example, at the same time that it is fair to say I’ve established myself as a mental health advocate in Australia, I am still pursuing the outstanding governance issue in Canada.

There is considerable interest in the increasing concentration of wealth in the world, including as a result of the recent publication of Capital in the Twenty-First Century by French economist Thomas Piketty. The CRTC scheme serves as a compelling case study of the democratic process being abused by government officials to unjustly enrich members of a powerful economic elite. But my interest in this particular case of wealth redistribution is inherently personal. I made a promise to myself during the depths of my severe depression in 1996 to not let go of my campaign, and that promise helped me hold on to life in those darkest days.

I successfully returned to the matter in September 2004, by sending then Prime Minister Paul Martin information and documents regarding the issue, on the tenth anniversary of my departure from the Canadian broadcasting system. While his government opted to not address the matter, I was satisfied that I had updated the issue and started a new paper trail for accountability.

More importantly, I adopted a long-term and sustainable campaign approach, reducing its priority in my day to day activities to a manageable time commitment — essentially conducting the campaign in parallel with my studies, volunteering, work and family commitments over the subsequent years.

As documented on my website onemedialaw.com, which I have created to support my campaign, I appeared at a CRTC public hearing in Canada on February 7th 2008 (official transcript 15234) and briefly addressed the outstanding affair on the public record. Hours later, my related press release was covered by several international online news sources, including Reuters, CNBC and Forbes.

As a result of my direct action, the following day questions were raised in the House of Commons (Hansard 11:30). Once again, the Canadian government did not pursue the well-documented issue. However, as a more mature, experienced and patient social activist, I adopted a different approach than in I did in the mid 1990s. Rather than putting my life on hold to challenge industry and government, I left Canada and started my new job at youth justice the following week in Australia.

My legal counsel in Canberra subsequently provided information on my allegations of government corruption and numerous related documents to Prime Minister Stephen Harper in 2010. This correspondence is also posted on my website, as well as copies of documents related to the unjust corporate enrichment scheme that were destroyed by CRTC officials several years ago - after my lawyer had first sent information on the matter to Mr. Harper.

While it is my belief that the CRTC affair warrants a public inquiry, my website permits others to review and judge the issue for themselves. This time I am under no delusion. It is entirely possible that the facts of the case will never be properly addressed by the Canadian government. On the other hand, I think a public inquiry into the affair might naturally and positively raise awareness of mental health recovery, if journalists report that my original opposition to the unjust corporate enrichment scheme was interrupted by severe mental illness and that I resumed my campaign after my mental health improved.

In any event, I plan to continue to pursue this scandal until it is logically concluded, or I am no longer in a position to address the matter. Furthermore, it is safe to say that I am not going to change my mind.

After all, I am a social activist.

“The two most powerful warriors are patience and time.” — Leo Tolstoy (War and Peace, 1869)