5 Lessons About Mental Illness: Grief, Gratitude and Advocacy

Shoulda, Coulda, Woulda...

Those of us dealing with mental illness in our families can't help but occasionally compare where we are to "what might have been." It's human nature, I suppose. While comparison can be inspiring, it can also lead to needless disappointment. And we have had quite enough of that, thank you.

In my most Zen frame of mind, I am happy for others whose children are on their way to six-figure-incomes and a life with a clear timetable for success, love, and growth. In my not-so-Zen moments, I allow myself that twinge of jealousy. For my son Ben can no more help his schizophrenia than I can stop a blizzard.

My mantra for returning to Zennish state, after processing human emotion:

"It is what it is."

But that is not so easy when the human emotion is grief.

I am in awe of Lesley and David Skelly, whose story so paralleled

[caption id="attachment_1381" align="alignleft" width="170" caption="Kit's Parents, Lesley and David"][/caption]

ours until the worst happened: Their son, Kit, lost his life when he fell victim to his voices and jumped off a bridge.

And still, they have the courage and purpose to continue to advocate. Wow.

I first met Lesley via e-mail, when she wrote to me after reading my book to say:

"I hope Ben is doing well. Our son’s journey has been much like yours and I found your book to be reassuring and helpful to me. I really want to become more involved like you have."

We wrote back and forth for awhile, sharing our hopes. Two months later, she wrote again, with "Sad news" in the subject line. Oh my God.

"I just wanted to let you know our sad news. Our son Kit took his life last week as his voices and delusions were just too strong. They were telling him to take his life and he couldn’t fight them any more…I hope you are doing well and I will continue to advocate for mental illness, especially schizophrenia."

And so, to honor their son Kit's life, and also to help spread the Skellys' messages about advocacy and mental illness, I reprint here (with their permission) the 5 Lessons they have shared with the Canadian media after losing Kit. They are just as relevant in the United States - and, I suspect, in many other countries.

Five Lessons From a Grieving Family About Mental Illness

1. Don’t keep schizophrenia a secret. That only compounds the stigma.

At her son’s funeral, Lesley Skelly pleaded: “Help us get our society to accept people with these devastating mental illnesses. Don’t be afraid of visiting someone in the psych ward.”

2. Hospitals and psychiatric organizations should coordinate care and support families.

“You are in a lather,” David Skelly says about when you first hear the diagnosis. “You’d think there would be a response team that could come to you after that first episode,” so you wouldn’t have to go searching for help. Their son was assigned a psychiatrist at the hospital where he was first treated for what his parents thought was anxiety. They have nothing but praise for that psychiatrist, but continuing with him meant they couldn’t easily avail themselves of programs and services at other facilities.

3. Accept that delusions are reality to a schizophrenic.

“We thought we could convince him that his delusions were fake,” says Mr. Skelly, “and this led to hours and hours of arguments to the point of screaming.” After two years, they learned to “go with him” and empathize with the fear the voices and visions generated, saying, for example, that it must be “tough” to see a pterodactyl flying towards the window. “Never validate the delusion,” adds Ms. Skelly, “but validate the emotions.”

4. Privacy protections are too stringent.

Kit Skelly didn’t attend any classes in second-year university, but nobody told his parents because, at 19, he was technically an adult. So they missed a warning sign that he was slipping into psychosis. The same privacy guarantees applied to shelter managers, so they often couldn’t find out if their son was “alive or dead.” The Skellys learned to beg and manipulate officials into giving them information.

5. Reach out if you know or hear about somebody who has a family member diagnosed with schizophrenia.

“Schizophrenia is everywhere,” Ms. Skelly says. “People need your support.”

Gratitude and Grief

So yes, there are those who feel sorry for my family, for Ben. There is a lot of possibility the illness has stolen from him, yes. But he is here, and it could be so much worse. The Skelly's story brings tears, not only for their grief but for the awareness that it could have been Ben, could have been us, still could be. So we try to always stay grateful for the good days - heck, the good moments. Ben is stable, studying, socializing. No small miracle.

The Skellys know. You do, too, judging by the comments here on this blog and e-mails from readers. All we can do is hang in there, do what we can, teach when we can, and support each other.