The first signs

The first signs of my son’s mental illness appear in my journal two years before he finally received treatment. During those years, the journal records the desperate attempts to get help, and the anguish, fear and confusion of watching my son’s condition deteriorate.

He was lost, alone, frightened, angry and very much at risk. My mornings began by checking his bed. So many mornings it was empty. He wandered the streets aimlessly, sometimes in the middle of the night. He slept in street shelters; he slept on the streets. He hitchhiked far away.

"I knew that my son could die because of this illness."

I knew that my son could die because of this illness. I was told, eventually, that my only recourse was to wait until it gets so bad that he would have to be taken to the hospital.  Finally, it happened. When that time came, my son recognized from somewhere deep within that he needed help and he accompanied me to the hospital.

When I finally returned home that night, I wrote in my journal: “Thank God. Thank God. Thank God. He is somewhere safe. He is safe. He is safe. He is safe!”

In the weeks that followed, he emerged dramatically from the depths of his psychosis. He smiled for the first time in years. His sense of humour, his unmatched sense of humour, returned. He was able to love again. He was able to see his family again for the first time in years and we were seeing him. 

It felt like a miracle, but as families dealing with a serious mental illness will know, our journey was just beginning.  There was to be no quick fix. There would subsequent crises, subsequent visits to the hospital. My son and the rest of the family had much to learn about living with a chronic mental illness.

But I keep with me always the miracle of that first visit. I hold the relief that it offered and the hope in my heart.

The bottom line

If someone asked me what advice that I would offer to other parents of a person with a serious mental illness, I would tell them about my bottom line.  It is a set of goals that constitute the very least that I expect for my son and for my family as we face the mental illness in our midst.

The goals, which provide me with much-needed orientation and perspective, are that my son, no matter what, will always know that I love him; that this illness will not claim more than one person in the family.

The first part is about loving and about letting go. I am learning, slowly, that I cannot control my son or his illness. I cannot fix this for him and I cannot guarantee his safety and security. I am learning, slowly, that, as my son himself told me one time: “Worrying isn’t loving.” 

My son may suffer in the worst way from this illness and I may or may not be able to help. But no matter where he is, no matter what is happening, he will know that he has a mother who loves him and has always loved him. He has that.

"...my son’s illness will not claim any more members of the family."

The second part is a determination that my son’s illness will not claim any more members of the family. I do not want his illness to be the pivot around which the family moves. I am determined that the rest of the family will be able to live our lives fully. We have that right. And we need to take care of ourselves if we are going to be able to provide support for my son. 

Step by step

When my son first became ill with a serious mental illness, I only talked about it with those who were closest to me.  There were two reasons for that: the stigma attached to mental illness left me wanting to protect my son and myself, and my feelings were still so new, so raw. I needed time.

In recent years I have been able to speak of it openly. It was not so much a decision to be more forthright as a natural evolution. The feelings are not so raw now and I find it more comfortable to be open. While there is still a long way to go, I have found that people have a better understanding of mental illness than ever before. 

The media, print and otherwise, need to catch up. I flinch every time someone or something is called schizophrenic (usually using the word incorrectly to describe someone or something with contradictory components). I once wrote the author of a book objecting to the use of schizophrenic in this manner. I received an immediate apology and a promise that he would contact the publisher (Penguin) and ask that it be changed in future editions of the book.

"...I flinch every time someone or something is called schizophrenic..."

Slowly, our society will come to recognize the prejudice faced by persons with mental illness. Step by step.

You are not alone

Unless you already know others who are dealing with serious mental illness in their families, the early days of dealing with it in your life can be utterly isolating. You feel cut off from the mainstream of society, stigmatized, alone. You feel shame without understanding exactly why.

There is no better antidote to this than others who share similar experiences. Seek out organizations, support groups and individuals who have dealt with mental illness in their families. There is no greater comfort than to know you are not alone. Listen to their stories. Listen to their advice. Acquire their knowledge. No one can understand what you are going through better than someone living with the same situation.

" There is no greater comfort than to know you are not alone."

Seeing the possibilities

I once asked the parent of a person with a serious mental illness what would be the first advice that she would offer to other parents. She replied very quickly that she would advise parents to change their expectations for their child. She said that we should let go of expectations that may not be realistic.  We shouldn’t burden our sons or daughter with them and we shouldn’t burden ourselves with them.

There will be new ways to measure achievement.  As time passes and as they witness their child’s journey, many parents begin to develop a deep respect for their son or daughter’s ability to live with profound barriers and to endure suffering that the parents themselves have never experienced and cannot even imagine. They wonder at their child’s resilience, endurance and courage. They treasure qualities like humour, creativity and times of affection and love.

There may be other times when our expectations are too low. Our need to protect our child may prevent us from seeing the possibilities. We need to know that our son or daughter will be safe and secure. We see their vulnerability, but maybe not their potential. Sometimes we are afraid to dare to hope. We need to protect ourselves from the possibility of disappointment. We yearn for stability and certainty. 

We need to recognize that these are our fears and those fears may create yet another burden for our sons or daughters. Many parents learn to show their love for their son or daughter by learning to live with their own fears and by helping their son or daughter live a full life, with all the risks that may entail.