“Hello”, Roger Stoddard answered the phone. It was the middle of the night, but the years spent parenting his daughter, Jilly, with schizophrenia had trained him always to pick up.

“We just discovered that your daughter is missing. We can’t seem to find her.” The voice struck him from the other side of the phone. It was his daughter’s care facility. These calls, though not infrequent, always carried a heaviness to them. This phone call came in decades after an ongoing, overwhelming bout with schizophrenia – a mental disorder characterized by delusions and hallucinations. The disorder creates a strong dissociation between reality and fantasy.

Roger recounted this memory to me, as well as dozens of other jarring moments he experienced throughout his daughter’s illness. His voice was kind and warm on the other end of the receiver during our interview.

She was his baby girl. Intelligent, poetic, hilarious, zany – a deep love of people and her church. In some ways, she was still his charming, energetic 13-year-old. In others, she was a bitter woman in her mid-thirties.

Despite some early indications, her illness ultimately flared when puberty struck when Roger and his wife began to notice extreme temperament changes. At seven-years-old, Jilly would pull her hair out and bang her head against the wall. Doctors left these symptoms untreated until the behaviour peaked with her continually washing her hands until they bled at 13.  It was 1993, and medical knowledge and resources were limited – furthering the barriers placed in front of two loving parents that were searching tirelessly for answers.

At this point, Roger was suffering from a chronic condition called Reflex Sympathetic Dystrophy (RSD). He underwent corrective surgery which led to complications, ultimately resulting in Restrictive and Obstructive Pulmonary Disease. In 1993, Roger spent months in the hospital receiving more life-saving operations.

“I didn’t have time to die anymore,” Roger described when he talked about his own illness. I was in sheer awe of his resiliency and strength, especially when I realized it had been 26 years since Roger’s close call. Twenty-six years that Roger has been speaking out in advocacy of his daughter while fighting his own disease.

Their constant struggle of being unable to heal, or at least help, their daughter had been met with an unequipped medical system, undeniable negative stigma and a severe lack of resources. In 1993, they were two parents diligently trying to help their daughter, but they were given no bridges to cross to find the help that Canada claimed to offer.

“I was traumatized,” Roger explained when I asked him what he felt, “It was PTSD.” Post-Traumatic Stress Disorder, or PTSD, is a mental health condition sparked by a distressing event or experience. Severe symptoms may include anxiety, nightmares or flashbacks. As I discussed this with Roger, I could feel the pain of a loving father penetrate my bones. I could only imagine the severity of the situation to result in such a strong interference with Rogers own mental health.

As her illness progressed, the roadblocks within the medical profession stood strong. Roger hung on to the moments of health and clarity in his daughter and advocated for her in times of her illness. At first, doctors believed she suffered from a neurological deficiency. Eventually, they diagnosed her with “behavioural disorders.” The blame was placed on her two biggest supporters – her parents. The system had isolated and betrayed both the ill and the worried.

In her care facility, she had been locked in a room with only a mattress, so she didn’t pose a risk to herself or others – a cruel, segregating treatment for somebody struggling with such a painful disease. Roger recalls often hearing medical professionals say things such as, “Get over it” or “Smarten up” – both inappropriate and uneducated phrases to somebody with a mental illness. Very rarely was she approached with understanding and support from people other than her family. Treatment wasn’t individualized according to the unique disorder that each person suffers. Instead, the treatment was a “cookie cutter” regime with a low success rate.

Alongside the Schizophrenia, once referred to as “Rapid Cycling Bipolar Disorder”, Jilly suffers from cognitive and spatial disabilities, furthering her struggle with the standard treatment plan. “It’s a square peg in a round hole,” Roger explained.

Schizophrenia taught the family the definition of “dichotomy.” The illness would be at rest before raging like wildfire. The failure of the medical system would result in new doctors, new care facilities, and new prescription drugs. Each change would produce a torrential downpour for the family.

At the peak of her illness, Jilly had lit herself on fire outside of her special care facility. She had spent fifteen weeks hospitalized as her injuries were treated. She had suffered full torso burns from her groin to her neck. Roger’s family, though heartbroken, stepped forward into advocacy against a system that repeatedly failed their daughter.

Jilly is now 37-years-old and living in a hospital due to the lack of appropriate special care facilities in the community. She is frequently visited by a family that has spent three decades advocating for her.

With every severe relapse, people who have Schizophrenia often resort to self-harm. Suicidal tendencies can be frequent. Canada’s social system responds to this by relocating their patients. Housing opportunities are averted, and case managers are switched. Roger states that it “feels like we’re starting over” with every speedbump and lack of support from the system.

Though the resources for mental illness have significantly progressed since 1993, there is still a long way to go. With social awareness on the rise with efforts such as “Bell Let’s Talk,” the stigma of mental illness is in a decline. However, stigma still paralyzes the greater part of Canada. Roger shares how he encounters this bias, even in the institution and mental health community. However, it stands most strongly in the individual suffering from the disease – fueled by the judgement of outside sources.

In response to his family’s continual struggle with an illness that lacks resources and understanding, Roger has become an activist. President of the Canadian Mental Health Association in New Brunswick, he is continuously brainstorming resources for other families in need. Despite every low, roadblock and trauma, he has managed to maintain his family dynamic and a healthy marriage.  Instead of silencing himself, Roger spoke louder and braver. He abolished the quiver in the voice of mental health. He became the face of change, support and tenderness for mental illness.

Before the end of our discussion, I asked Roger what advice he would give to somebody who has a mental illness, “Get active with your mental health. Exercise both physically and mentally,” he continued, “Seek help, become educated and find healthy human connection, and use the resources around you.” He made note that it is our responsibility, as humans, to check in with the people around us.

Roger is a true inspiration to get involved in making the world a better place, “I feel like private sectors, and non-profits can make a change quicker than the system. It’s our responsibility to get involved.” My conversation with Roger had left me inspired, pained, and ultimately honoured to hear his uncensored and honest story.

Written by Celina Dawdy