September 27, 2012

Let us be persistent in hope

As published in The Erin Advocate

I am not comfortable in the role of victim. I would rather be known for the things I do, rather than the things that have happened to me.

After the death of my son Thomas last May, I was determined to generate more public discussion about mental illness, which led me to speak at McMillan Park, on World Suicide Prevention Day (September 10). Here is the text of those personal reflections:

Thank you to my wife Jean for her strength and patience, and to my son Michael for his courage. I think this ordeal has brought us closer together.

Thank you to everyone who has reached out to support us. Not just those close to us, but remote acquaintances, total strangers, and those whose job it is to comfort the afflicted. It is not just a job though, when you have to confront life and death issues, it is a special calling. All that reaching out makes us a strong, caring community.

If we are going to fight the battle, to prevent suicides, then we need to know our enemies. And death is not our enemy. We know that death is certain – we can only delay it. And we know that our species is weak, vulnerable to illnesses.

We can't change the reality that suffering is part of the human condition. But we can improve the quality of life for those with mental illnesses, whether it is a brief crisis or a struggle over many decades. And we can also change the way we think and behave about these issues.

With so much suffering, and over 4,000 Canadian lives lost to suicide each year, it is unacceptable to sweep mental illness under the carpet, as a shameful secret. It is all around us, and we have to face it with courage.

Fear and guilt – these are our enemies. We cannot put them to death, since they are woven right through us, but we can put them in their place, and not allow them to rule our lives. There is healthy fear, the type that protects us from danger. But then there is unreasonable fear, blown out of all proportion to the actual threat.

When our children succeed in the ways of this world, we are tempted to take credit.  "We must have been doing something right!" But when they are crushed by the ways of this world, and their own fears, we ask, "Where did we go wrong?"

If we actually did something wrong, we might feel a natural guilt. But why are we tempted to feel guilty about things that are out of our control or that happen in spite of our best efforts. That guilt is not healthy.

We all walk through the valley of the shadow of death. Death is difficult, but the shadow that surrounds it is much worse. So we have to be brave. And we are all fortunate, because love does not come to an end – it is constantly renewed.

When Thomas was eight years old, he was diagnosed with a birth defect, a flaw in his aorta. He needed surgery, and had to understand the risk that he might not survive. He was afraid, but he was brave. The surgery went fine, but what if he had died then? Emotionally, it would have been more efficient for us. It was out of our control – not our fault.

When Thomas was 14, he came to us and said he had urges to kill himself. He was afraid, but he was brave. We scrambled to help him, and never gave up hope, but I wonder what it would have been like for us if he had died then. If he had been afraid to speak to us, and just done it. It would have been simpler, but it would not have been better.

For those with a loved one at risk, try to make a deal with them, to come and talk when things get bad, no matter what. Tell them you can handle it, even if you are not sure. We made that deal with Thomas, and he helped us understand his world. We helped him take responsibility for his own happiness and opened up options for him, and he helped us to be brave.

It was a privilege to accompany him in his struggles. Despite the frustrations and uncertainty, those ten years had many positive times, and he enriched our lives.

Eventually, Thomas could not keep up his end of the bargain. He was being crushed with pain, and he kept the worst of it away from us. He had decided to end his life, but he procrastinated for a long time, hoping for – hope. I don't think his final act was one of cowardice or selfishness. In his mind, it was an act of bravery.

The most difficult thing to accept is that suicide is a choice, a way to escape the pain of existing in this world, the result of a tortured reasoning process. If Thomas felt he had no chance of fitting in to this world, did he make the right choice? We don't think he did, because he had many options, but it was ultimately his choice to make.

Normally, humans are programmed to love life and fear death. But we are also programmed to avoid pain, and pain can change everything. When the socially acceptable treatments are not working well, self-treatment becomes a reality. Unfortunately, many self-treatments are destructive, and provide only short-term relief.

Patients need to take primary responsibility for their mental health, but they need a partnership with family members, friends, doctors, counsellors and the community. The goal is reduce sources of pain, and increase the capacity to cope with it.

This does not work well in an atmosphere of fear and secrecy. Being open and honest about mental illness will not cure it, but it will increase the opportunities for improvement. It is a tragedy that many families suffer in isolation, because of an illness they are not allowed to talk about.

Take all the help you can get from psychiatry, but do not put all your hopes there. Scientific understanding of brain disorders is very limited. The system is poorly funded, waiting times are long, and there is a heavy reliance on drugs. Educate yourself about different illnesses and strategies, and about the side effects and risks of medications.

There are no magic pills, and no special words from a trained professional that will make this go away. The best we can expect is some support for a natural healing process.

Don't let a loved one's illness drag you into despair. Get counselling for yourself and do whatever it takes to build up your strength for the journey.

Collectively, we can also be brave. It is estimated at least one in five Canadians each year will be affected by a mental illness, costing the economy $51 billion dollars annually. So it is encouraging that Canada this year has proclaimed a Mental Health Strategy, to improve access to support services.

We need to demand that this plan gets the funding it deserves. The same goes for the new Federal Framework for Suicide Prevention, now before the Senate. It will formally recognize suicide as a public health issue.

All the positive talk at the top end of the system needs to trickle down to the local level. We need support groups and access to treatment, close to where we live. Very close.

Most importantly, as individuals, let us be brave. Let us discuss the risk of suicide, as openly as we discuss the risk of death by cancer or heart disease. Let us be willing to ask for help when we need it, and accept it when it is offered. Let us reach out to those in need, and be persistent in hope.