Mental Illness: A Parent's Journey
Submitted by Stu Ducklow, father of Stella Ducklow who is a regular #MindVine blogger and Peer Support Specialist at Ontario Shores.
Like most parents, we thought our first-born child was extraordinary, and we hovered over her as much as any helicopter parent.
She seemed to need more attention than most. When she nearly died of anaphylactic shock at age 4, we sought help from specialists ranging from a pediatric immunologist to Reiki practitioners. When eczema kept her from sleeping, we covered her with creams and dosed her with prescription meds. When she was hospitalized for asthma, we gave away our four cats.
When she had trouble in Grade 1, we enrolled her in a private school where students were expected to learn to read via the ‘whole language’ process which spurned phonics and spelling. When she still couldn’t read, we took her to an after-school program that drilled her in the very same phonics and spelling that we were paying the other school to avoid. Stella was reading above grade level in a few months.
But we couldn’t come up with a solution for the all-day crying jags, cutting and constant dieting that began at about the age of 16. We turned to the provincial mental health system for help. We had a lot to learn. While mental health professionals are nearly always kind and well-meaning, the system they work for seems designed to serve administrators more than the patients.
For example, Stella was confined to her unit during one short stay because staff was thinking of moving her to another unit and they wanted her available at short notice. This meant that our daily one-hour drive around Halifax, the high point of her day, was forbidden. Fortunately a good-hearted nurse bent the rules when I promised to deliver her within ten minutes of a call to my cell phone.
Over the next ten years we got used to waiting up to 16 hours in emergency wards when Stella felt suicidal or overcome with anxiety or depression. In contrast, she was seen immediately for a fractured ankle, though broken bones aren’t nearly as harmful as suicidal thoughts.
She was admitted at least ten times for short stays of about a week. Though she saw many psychiatrists, they confined themselves to adjusting her meds. Requests for some form of psychotherapy were met with blank stares. She was given a regular outpatient worker who she met with for about a year but that person was hostile to us as parents and dismissive of Stella’s chances of recovery once she was diagnosed with borderline personality disorder.
A diagnosis carries a lot of weight even when it’s wrong. Stella’s diagnosis not only called for meds which made her lethargic and sullen, it made support staff think she’d never get better because of their experiences treating borderline personality disorder.
But Stella is nothing if not stubborn. She researched her diagnosis and was able to convince her regular psychiatrist that she has bipolar II disorder. That led to different meds. Instead of lethargy, she now cycled between anxiety and depression. I’d meet her on the street one week to find her walking, head down, face concealed by a hoodie. The next week she’d be strutting along in a bright red skirt with black bustier and high heels.
Staff at the cafe where she worked joked about ‘Stella decorations’ the frequently smashed plates and glasses that she dropped because her hands shook with the effect of the meds.
In one manic episode she stayed up 24 hours colouring and gluing tiny paper boxes to serve as a personal organizer.
In a depressive episode she asked if it was okay to commit suicide. Twice she became unconscious after overdosing on sleeping pills, meds and vodka.
On a manic whim, she jumped from a wharf into the near-freezing water of Halifax Harbour. Police took her to the emergency ward where a young nurse helpfully warned about “suicide ideation”.
When a cutting incident got out of hand an emergency room doctor calmly gave her 20 stitches and told her to “try not to do this again.” She kept cutting and wore long sleeves even in the hottest weather.
“Stella, I don’t have a magic bullet,” said one psychiatrist during a hospital visit. It became clear to all of us that she would have to find her own way out.
She had always worked hard to build a good life. She’d gone back to high school, studied chemistry and was accepted into the nursing program at Saint Francis Xavier University before enrolling at the art school. She tried all the different meds that were recommended, and later tried electroconvulsive therapy, which had little effect beyond creating a few blank spots in her memory.
She spent one summer in a day treatment program and repeated it two years later. Aside from her earlier outpatient worker this was the first talk-therapy she’d participated in. Stella began to learn the skills to manage her mood.
Outside of her family, her main support was Laing House, a clinic for young people with mood disorders. Always articulate, she was asked to speak about her experiences to nurses and social workers. She was so good that she got a job as artist in residence at the Sun Life Chair in Adolescent Mental Health, a huge boost to her self-esteem. She ran photo workshops for young people at the same mental health ward where she’d been a patient years earlier. She started a popular coffee house for young people with mental health issues and worked as photographer and organizer on dozens of other projects.
By this time she was emerging as a talented photographer. She participated in a show at the Art Gallery of Nova Scotia. The National Art Bank bought several of her photos. Her first solo exhibit was hosted at the Nova Scotia Community College.
Stella moved to Toronto to continue her education and gradually began reducing her medications. Today she takes antidepressants when necessary.
I speak with my daughter on the phone at least once a week and our conversations have been gratifyingly ordinary for more than a year. How did this happen? Stella did most of the work herself. We take some credit because, as parents, we made her feel important. That may have given her the courage to stand up for herself. And despite the faults in the healthcare system she has got a lot of help.
One psychiatrist was in tears when Stella graduated from the child to the adult system and their regular meetings came to an end.
Her replacement psychiatrist once extended a meeting more than 90 minutes past their half-hour appointment because Stella needed to talk through an incident she found distressing. She also listened when Stella argued that she has bipolar, not borderline, and changed her meds accordingly.
Her boss Dr. Stan Kutcher, founder of the Sun Life Chair in Adolescent Mental Health, had faith in her and gave her a challenging job when her confidence was at an ebb.
Workers at Laing House provided a non-judgmental refuge that Stella found comforting at the end of many a long day.
A photo instructor respected her work and understood when she missed classes due to illness. In fact the whole administration at NSCAD University was helpful and accommodating.
Dr. Jackie Kinley who founded the day treatment program at the Abbey Lane Clinic provided an atmosphere where she could learn the skills required to manage her mood.
But most praise goes to an off-duty nurse who stayed by her side in the emergency ward of the Dartmouth General Hospital when Stella was overwhelmed with suicidal thoughts. At the age of 20, she felt she had no future. As far as we know this person had only one psychiatric credential: she cared, and for that we are forever in her debt.
Advice for parents? Be a non-judgmental, loving advocate for your kid. The healthcare system offers only limited help. The hardest part of raising a child with mental illness is giving them enough space to make mistakes and learn from them. Even when every parental instinct screams for you to rescue your child because the prospect of losing them is both real and terrifying; you eventually need to let them take ownership of their own recovery and find their own way out.