For my wife Terry and I, the holiday weekend in August of 2004 was probably the saddest one of our lives. Our son had had a very rough year at university in New Brunswick. His grades had nosedived, and campus life was increasingly a struggle. He had been treated for depression since he was ten. And no matter what medication our family doctor tried, there was never any real improvement.

When classes ended, our son decided to stay out east. So I took down a used car we had purchased. I’ll never forget the despair I felt after he dropped me at the train station for my return trip home. I called Terry and told her I had a feeling we had lost our son.

That summer, unbeknownst to us, our son started upping his antidepressant dosage. We later learned that he was also engaging in all sorts of other risky behaviours. Towards the end of July, it all came crashing down around him. He had lost his job, his money was gone and he had no place to live.

Luckily, he cried out for help and I rushed out to drive him home. While we failed to recognize it then — what did we know of mental illness? — our son was in the midst of a classic manic episode. He was unable to sleep. He was paranoid. Both his thoughts and his speech were racing out of control.

Our family was home for the holiday and we each took turns listening while our son ranted at us. Finally the penny dropped and we realized our son needed to be hospitalized. So we made the gut-wrenching decision to call the police and have him transported to Ottawa in the back of an O.P.P. cruiser.

Like deer caught in the headlights of an onrushing car, Terry and I came face-to-face with Ontario’s mental health system… a strangely twisted world we were ill prepared to navigate. A world where “patient’s rights” advisors could, and did, prevent our son from receiving the help he needed for six agonizing days. The diagnosis of Bipolar 1 was almost a relief. But it also brought grief. Our son’s dreams of earning a doctorate in science were smashed. As a result of what our son later termed his “brain attack”, he spent two years in his room. A young man who, until that time, had built his life around books, had effectively lost the ability to read.

As I mentioned, we knew zip about mental illness and realized, if we were going to be able to advocate for our son, we had to play some serious catch-up. Luckily, in the fall of 2004, the Cornwall branch of the CMHA started a family support group, which we joined. Two of the family members also volunteered to offer a Family-to-Family education course they had researched.  Terry took the course and credits it with giving her the strength to carry on. In fact, she was so impressed with its worth, she trained to be an instructor and then taught it for six years.

For my part, I volunteered to lead the Cornwall family support group; it was threatened when the agency funding it hit a budget crunch. Luckily, Marilyn Macaulay joined the group and the rest, as they say, is history. After years of hearing horror stories about the mental health services in this region, Marilyn and I decided to conduct a survey of family caregivers in Cornwall and the surrounding area and take the results to the hospital in Cornwall and the Champlain Local Health Integration Network (LHIN). Our report… Survey of Mental Health Services in the Cornwall Region and Glengarry Counties… was published in November 2013.

The report was well received. More importantly, Christine Penney, Vice President, Community Programs at the Cornwall Community Hospital helped us put it in front of the right people. She was also supportive of our decision to join the Family Advisory Committee and Addiction & Mental Health Network of Champlain in Ottawa… and the Ontario Family Caregivers Advisory Network. And she worked hard to help us realize our goal of a Mental Health Family Advisory Council at the Cornwall Community Hospital.

As I have travelled this road, I have been guided by something written by Carol Grogan, a support group facilitator from Wisconsin, entitled “Open Letter to Mental Health Professionals:”

We want you to know that, despite what may be expressions of anger and hostility, we care deeply about our ill family member, and feel as much a desire to get involved in the treatment as we would if he or she were suffering from cancer, a kidney problem, or heart disease. Above all, we want to have access to you… and for you to have access to us and listen to us. In return, we hope to exercise great care and honesty in our contacts with you.

By the way, if you are wondering what happened to our son… fourteen years after his first psychotic break, he’s in recovery. He has insight into his disorder. And most importantly (for him), he is realizing his dream of completing his PhD in Biology.