This evening on a stroll with my pup I walked past a man in a billowy handcrafted cape. Agony tarnished his youthful face, the warmth long gone from his emerald eyes. The man stood rigidly in an unnatural pose and shouted anxiously in a language with which I am not familiar.
A few minutes later I passed a woman with so much dirt underneath her fingernails it looked as though she desperately clawed her way out of the Earth. She sat on a bench in four visible layers of clothing and held a torn newspaper from 2014 in her soiled hands. I sensed that the woman genuinely believed herself to be reading even if her unfocused eyes and the newspaper’s upside down orientation indicated otherwise.
As an experienced social worker in mental health and homeless services and as an urban dweller, I am no stranger to schizophrenia and its presentation. Yet even with my considerable clinical knowledge about the illness– its etiology, symptoms, progression, treatment and prognosis— the only thought I could muster this evening is that schizophrenia really sucks.
As I walked I got to thinking about a brilliant, resilient and insightful man that I worked with early in my career, a man who had lived with his schizophrenia for 20 years. He once told me that there are only two days in the life of someone with schizophrenia that truly matter: the day sanity is lost and the day it is regained.
I asked him about the day he lost his sanity, though the descent into psychosis embodies a convoluted and tortuous evolution and does not belong to any single moment of time. He described a series of increasingly disorienting happenings that concluded when reason and madness became indistinguishable from one another.
The details he knew of his initial psychotic break were mostly pieced together with medical records that he requested years after the fact. His loss of sanity began with visual hallucinations so vague that he wondered if he had seen anything at all. A giant spider in the corner. A shadow where it did not belong. A melting nose that regained its integrity after he blinked. It progressed to auditory hallucinations so alarming that he wondered why no one else felt afraid. A radio commercial warning of an impending alien invasion. Internal voices insisting that he was followed, that the people around him could hear his private thoughts and wanted to kill him.
In the early years of his illness, the horrifying and malicious voices in his head were unrelenting. After ten years of tremendous suffering and turmoil, treatment providers finally found a drug cocktail that worked to quiet his symptoms. He took 11 pills each day—anxiety medication, mood stabilizers, anti-psychotics, anti-depressants and medications to counteract the debilitating side effects of these drugs.
Even with these medications, years of therapy and incredible insight into his illness, there were times when he vanished into his voices. Though the voices were not as merciless and pounding as they were in the beginning of his illness, there were still times when he convinced himself of their truth.
I did not know this man before he developed schizophrenia yet even in the hellish depths of his dark illness he managed to extend kindness, compassion and genuine interest to others. Inside his troubled brain lived a man whose spirit was beaten and trampled by a wicked force but his most genuine essence remained intact.
Years after I asked this man about the day he lost his sanity, I asked about the day he regained it. He was employed part-time, an active member in his faith community and heavily involved in advocacy efforts around mental illness. He had a life that he called happy and endorsed a sense of connection to his community. He said, “I’ll let you know when that day comes,” and shook his head dolefully.
I felt saddened in that moment and feel saddened tonight. My heart breaks for the individuals who are imprisoned by their own minds, who live with unquiet spirits, with anguish, despair or fear. I hold hope for a day when these individuals can shine as bright as ever, when their brains calm and their minds are restored to reason.
Schizophrenia sucks but the human spirit is remarkably resilient. It takes an astounding amount of courage to live with a brain that betrayed itself and in a world that feels unsafe. I am continually moved by the bold individuals who persevere, who wake up each day to exist, and who sit courageously with the debilitating symptoms of this torturous mental illness.