Death by a Thousand Cuts

How an army of mental health professionals let my daughter down

As a mother who spent several years tending to a daughter with paranoid delusional disorder, I have observed how Canadian attitudes toward mental health have evolved in recent times. Policy-makers are, of late, coming to understand that, clearly, our system needs more money, more doctors and more resources. Even so, and far too often, a patient can spend many, many months in the labyrinth of mental health care waiting to receive proper and consistent treatment.

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But one of the worst defects of our mental-health system—something that cannot be measured in dollars, or manpower, or waiting periods—is its astonishingly fragmented nature. To understand this, you have to experience it from the inside. Those of us unfortunate enough to have done so might describe it as death by a thousand cuts.

Of course, fragmentation is a common complaint in all sectors of our health system. A Canadian suffering from diabetes or cancer might be required to see a primary-care physician in one facility, be tested a week later somewhere else, and then receive treatment by specialists in yet another location—all the while having to record and recite one’s medical history to each new doctor like a broken record.

But this ordeal is especially difficult for the mentally ill, who, when in crisis, often are not capable of describing their condition in any objective way. In many cases, people suffering from a mental health illness find it difficult even to leave their homes, let alone make themselves vulnerable to a succession of strangers.

For my adult daughter, Tamara, all of this was complicated by the fact that she did not see herself as ill; her illness caused her to blur the contours of reality in her own mind. She could no longer discern who was “with her” and who was “against,” who she could trust to understand the fundamental workings of her brain that had come to make the world she loved such a dangerous place. At times, she believed that she was being bombarded by harmful radio waves, and that humans could communicate by telepathy with computers. Lying in a hospital bed, Tamara became convinced that all her bones had become broken, but that she could heal them by drinking milk. By her own admission, for protection, she could be evasive and manipulative. And so her need for an ongoing relationship with professionals who knew her, and could offer comprehensive treatment, was particularly acute.

I am a seasoned social worker and registered psychotherapist, and have observed human suffering in almost all its forms. Even so, it has been difficult for me to write down the story of my daughter’s long, slow descent to suicide. But I feel compelled to do so! If people like me do not describe what the system is like for mental-health patients and their loved ones, nothing will change.

Perhaps more importantly, this is what my daughter wanted. She didn’t want to die in vain.

There was no lack of trying on my daughter’s part. Though her illness was biologically embedded in her brain, she was no fatalist. She wanted nothing more than to be well and to claw back her life. The will to live—something that many of us take for granted—was something she had to battle for on a daily basis.

Tamara did many of the things we tell troubled people to do. She reached out to others constantly, exercised daily, enjoyed hobbies such as kayaking, biking and reading, and advanced her career as an international global-development consultant. (On the very day of her suicide, she received two new international job offers. Seeking to be professional to the end, she left me with instructions to tell all prospective employers that she was now “out of the job market.”) But Tamara learned that you cannot conquer mental illness by force of will. “I, who always rolled my eyes at the words therapist and mental health, have realized just how real mental illnesses are, and how little you can understand from a mental health battle from the outside,” she wrote in her last days. “I feel like my brain has been more damaged than some with brain cancer or physical head injuries.”

Tamara took herself to a hospital emergency department in early August, 2014. By then, her grip on reality was almost non-existent. While scanning headlines, she would imagine all sorts of international conspiracies that she feared would bring apocalyptic harm to everyone she loved. When her luggage was misplaced, or her car got a flat tire, or she had an allergic reaction, Tamara’s thoughts turned to dark plots.

“My delusions were similar to those of John Nash in A Beautiful Mind,” she wrote in a moment of lucidity. “But my mind was not nearly as impressive. Beyond imagining everyone following me, I [dreamed] that our eyes could be cameras, that we could instantly transmit images to each other or to people across the world, and that we could check in with each other just with a thought exchange.” Tamara hated that both her underlying condition, and the medications that treated it, sapped her ability to perform professionally. The ordinary anxieties of everyday life became hideously exaggerated in Tamara’s mind: She felt crippling shame that she hadn’t completed a work assignment, that she might not have a husband or children, that she wasn’t glamorous, that she lacked “fashion sense.”

My daughter spent 12 hours in her first ER visit. Doctors correctly identified her as delusional, and asked if she had ever thought about killing herself. Of course she had: Tamara was consumed by guilt, and felt an irrational sense of responsibility for every tragedy that occurred to anyone she knew. The doctors concluded, however, that there was “not enough evidence of threat to self” to justify her admission. She was released, and referred for an appointment at a mental-health clinic fourteen days later. That may not sound like a long time. But for someone in crisis, it is.

At the clinic, a doctor began the assessment all over again, authorized a brain scan—booked for several weeks out. Following that, Tamara met with another doctor, then had to wait seven more weeks for a complete diagnosis. At that point, she was told to return in two more weeks, this time to discuss meds, and then was told to return in yet another fortnight after she had tried the medication. At this appointment, it was agreed that Tamara should be admitted to hospital to stabilize the dosage. But there were no beds available—none—except in a six-bed lock-down unit that wasn’t appropriate for someone as “well” as she. She was sent home, with instructions simply to try her best, to persevere with the drugs, to just manage. The next appointment was two weeks on, and the following was three weeks after that. During this period, it was evident to most that Tamara’s condition was deteriorating.

Whilst this catalogue of medical appointments is tedious to recite, such details are important—because it was this repetitive cycling through new doctors, each one providing his or her own fragmentary take on Tamara’s condition, that explains why Tamara’s experience with our health system was so Kafkaesque. At each new encounter, she had to tell her tale from the beginning, build up trust with a new authority figure. At one point, she sought help through a family doctor to secure a referral to the foremost mental institution in Toronto; yet, once there, she encountered a doctor who simply did not have the information necessary to understand her, and suggested instead that she return to the same emergency department where she had started her odyssey two years previous, in 2014.

By this time, her skepticism of the system had curdled into outright distrust. The physicians, nurses and therapists who met with my daughter were skilled and well-intentioned. But the scattershot nature of her interactions left her alienated. When she became frustrated with a doctor whose appointment schedule was packed, or was away on vacation, or (as on one occasion) refused to treat her unless she was on medication, she would switch to another professional—and then re-experience the same frustrations. For a time, she became so exasperated that she opted instead for a regimen of simple exercise and herbs as a substitute for intermittent care. This didn’t save her, of course, but at least it gave her the sense that she was in control of her own fate.

Out of desperation, I sought help from the courts to have Tamara arrested, brought to “safety” for her own well-being. The image of her being taken to a hospital in handcuffs was horrifying to her loved ones, but also offered us a glimmer of hope, since at that point I was still confident that she would get the help she so desperately required. Once in hospital, the medications began to have an effect, and after a 2 week stay, she was deemed well enough for discharge. Alas, there was no robust plan for her follow-up care, no trusting relationship established, the only true safety net. She was given an appointment with a psychiatrist—three weeks hence.

Another downward spiral set in. Two months later, Tamara herself called 911. And it was back to the ER, but at a different hospital, with different doctors. As before, I switched into my role as on-site advocate—filling out forms, pushing for reports to be transmitted from other hospitals, filling in the gaps, advocating, insisting, encouraging, pleading, frustrated and fatigued. I am hardly alone. There are legions of Canadians like me: It is not just the patient who gets worn down by our fragmented mental-health system, but also the family members and friends who are on call 24/7. Sometimes, it feels like a full-time job.

Another discharge. More uncertainty. A referral back to a program at the hospital where her first in-patient admission had taken place—which was unfortunately further delayed because hospitals typically assign a lower priority to external referrals. At this point, we were dealing with the following situation: Tamara’s day treatment program was not offered where her psychiatrist provided services; the medicines she required could not be administered at the hospital where her psychiatrist practices; her case history was not readily available to the doctors who were tasked with medicating her; and her one-on-one therapy was restricted to thirty minutes every two weeks, predominantly a review of current activities and side-effects of medication.

By this time, Tamara had some intermittent success in conquering her delusions. However, when the delusions faded, the sadness set in. Pushed from pillar to post, she felt no solid, consistent bond with any one psychiatric professional with whom she could fully reveal her vulnerabilities. Human relationships lie at the core of psychotherapy. And this is what Tamara so profoundly lacked.

At 4 a.m. on the morning of November 18, 2016—following 27 months in and out of Ontario’s medical system—Tamara jumped off the 29th floor balcony of her Toronto apartment building. In her suicide note, Tamara said she wanted her death to help provoke an “honest open dialogue about her life and mental health.” Her family has taken those words to heart. The eulogy given by her brother at her funeral captured exquisitely not only Tamara’s extraordinary sweetness and generosity, but the brightness and brilliance of her mind and the dark, destructive facets of her character. In the end, the harsh distortions won; personal and professional relationships faltered, caring people pulled away, leaving only the soul-destroying loneliness to keep her company.

The complexities of Tamara’s illness, intertwined with her intelligence, inevitably outmatched an already flawed and fragmented system. It is not that we did not meet many smart, caring, committed professionals along the way; we certainly did. But the system intervened and always left us with less than what they really had to offer.

My daughter’s final message to her family, which runs to almost 11,000 words, is a very unusual suicide note. Tamara did not see her life as an unremitting series of horrors. “I travelled much of the planet, from the Nyae Nyae reserve in Namibia, learning to hunt with the Ju/’Honasi bushmen, to Pacific spear fishing, and discussing climate change with the President of Kiribatis,” she wrote. “I worked in more than 60 countries living in the UK for two years and Paris for almost four years while always proudly being able to call Canada home. I could not have had a more interesting career or life.”

Alongside heartbreaking descriptions of her anguish—“I no longer know how to be a fountain rather than a brain”—she provides surviving family members with prosaic details about the inner monologue that preceded her final plunge. At one point, she tells us that she was thinking of “delay[ing her suicide] another three weeks for mom’s hand surgery, but the reality is [that] everyone in our family is always busy and there will never be a time when a death in the family will be a good thing or when it won’t disturb a schedule.” She informs us that she chose to jump from her balcony at 4 a.m. because at that time there would be little traffic, and she would have little chance of “disturbing a neighbour.” Where Tamara describes the side-effects of her medications, such as akathisia and hormone fluctuations, she helpfully adds citations from Wikipedia. She also expresses disappointment that she will never be alive to witness “the clean up of oil in Ogoni Land and the Nigerian Delta,” nor “peace in Syria,” nor the creation of “a marine reserve in Antarctica.”

The mash-up character of Tamara’s writing reminds us that even those of us with serious mental illnesses often flit back and forth between delusion and lucidity, crisis and wellness. My daughter’s case might have represented an unusually complex case, but she is hardly unique in this respect. To understand and treat such individuals requires sustained interaction by trusted health professionals, not a constant swirl of anonymous interactions.

James Thurber once said, “do not look back in anger nor forward in fear, but around in awareness.” In the months since the death of my child, I have attempted to do that. I believe it is what my daughter would have wished. I hope that her story somehow will help to make this world a better place for others who suffer the sort of agony that marked her last days.

Carol Cowan-Levine
Carol Cowan-Levine is a Registered Psychotherapist.