When our daughter finally got a diagnosis after eight years of hospitalization and unresolved mental illness, it was a huge relief. We were no longer going to be seen as terrible parents. We felt a flood of hope. Now maybe doctors could fix everything.
But it wasn't like that at all.
Our daughter was full of promise and joy – a witty honours student whose humour and love of language, music and the stage were pointing to a career in classical animation. She was 18 when the hurricane of mental illness tossed our whole family into disarray. Unable to communicate, she turned her empty eyes to us, her parents. Psychiatric hospital staff made assumptions and passed judgment without asking questions.
"It's your fault," they said to us. "She has a behavioural problem. You must practise tough love."
Desperate enough to concede they might be right, we rented a room for her in our neighbourhood. She was back in hospital within days. I apologized to her and never again doubted my motherly instinct.
Eight torturous years later she was still on an inpatient ward. An astute young psychiatrist referred her to a geneticist who diagnosed her with microdeletion 22q11, also known as velocardiofacial syndrome. She was checked for the associated anomalies of her palate, heart and other organs, and musculoskeletal system. Unlike most with VCFS, she had escaped physical and developmental problems. But she was among the 25 per cent who develop severe chronic mental illness.
For the next 10 years, drugs and electroconvulsive therapy stripped her of all childhood memories and did nothing to alleviate the disordered thinking or hallucinatory voices that convinced her she was less than worthless. The drugs numbed her brain, slowed her gait and gave her trembling hands that could no longer play Bach or create art. In the stigmatizing environment of a psychiatric hospital, she was traumatized physically and emotionally. She wanted only to die.
We parents were caught in a web of specialists who repeatedly told us that she was best suited to a permanently locked residential facility. Unconvinced, we negotiated her stay at community homes where staff had preconceived ideas of who she was. She fled, sicker than ever, returning home.
Within days another long hospitalization followed. We pushed for independent living in an apartment with intensive case management – a team of people who would ensure she was safe and supported. She moved into her new place, decorated the space and waited. Three weeks passed and the team never showed up. She was readmitted to acute care.
Over the years she was admitted repeatedly to five psychiatric wards and placed in the care of dozens of psychiatrists and health-care workers. We delivered home-cooked meals and took her out at every opportunity. We insisted on being team members at staff meetings, founded advocacy groups, read books, wrote articles, gave speeches, volunteered for mental health non-profit groups, gave up jobs and socializing, attended support group meetings and nursed our own wounds.
We spent every extra minute with her and made it our job to look for bubbles of wellness. When they appeared we cherished and nourished them and celebrated every tiny achievement. We loved her deeply and unconditionally.
In the early days following our daughter's diagnosis, a psychiatrist and internationally renowned researcher of VCFS at the Centre for Addiction and Mental Health in Toronto, Dr. Anne Bassett, came to Halifax and saw us all. We connected with her over the years, and of the hundreds of people who cared for us, she was the only one who consistently said our daughter needed the compassionate environment of a loving family in order to heal.
By November, 2008, our daughter's medications had been tweaked to the point where she could tolerate them and she was stable enough to come home. Finally, we could put our own ideas of healing in place on a 24-hour basis.
Today, at 37, she is enjoying a fragile wellness. She is back to making and sharing music and art and is exploring entrepreneurship. She reaches out to friends. She has her own apartment. She contributes to my public speaking.
Her humour and insight into her illness have come back. After her experiences in the mental health care system, she would not willingly return to an emergency room or hospital ward. Hopefully, she will never have to. There are a few exceptions but our memories are mostly painful: of crowded rooms, units intended for rehabilitation full of the acutely ill, inattention to emotional needs, staff shortages, overused isolation rooms and stigma.
She is teaching us now. We are finding our centres, appreciating our world and each other. When we are together, we take more time to sit and listen, to explore the wonders of our beaches and the woods, to enjoy slow and healthy meals, and to laugh a lot. The bubbles of wellness have expanded and are no longer fleeting.
As she settles into her life in the real world I am looking at mine anew. With the help of a psychotherapist we are learning to separate. I will always be Mom, but now I can also be other things. And she too is learning who she can be.
Sheila Morrison lives in Halifax.