"Born Schizophrenic": Q & A with Michael and Susan Schofield

The Advice I Wish I'd Been Given...

"Trying to get a diagnosis is a long and arduous process," advises Michael. "Nobody wants to give that diagnosis. Schizophrenia is not a death sentence; it's a chronic illness like diabetes that has to be managed."

Knowing this, there two key pieces of advice the Schofields wish they'd been given.

"The first is going to sound negative: nobody's going to help you. Nobody's going to save you and ultimately you're going to have to do it yourself. We're so trained to believe that the medical community has the answers. We're in the process of setting up a non-profit to do that very thing. I've also set up an online support group. The help will not come from any government agency but from other parents going through the same thing. We're the only ones who are really able to see the child inside the illness. You have to be your child's biggest advocate."

"The second," continues Michael, "is more positive. No matter how bad it gets your child is still in there and however hard it may be for us as parents, it's a hell of a lot harder for them. And our children really do struggle. Life is a nightmare for them. I would also say, simplify your goals. For us, with Jani, it's been simplified down to: keep her alive, and give her as many moments of happiness as we can for as long as we have. Understand that there is no cure. But it is possible to have a life with this disease, you just have to refocus priorities. Your life as you knew it is over. You have to embrace it -- you have to accept as it is now."

Adds Susan:

"We hear from parents all the time: When we pass on, who's going to be there for our child? That's where it becomes different from a [mentally healthy] child who goes on to have a life and family. For ours it's about functioning, which is why we've created The Village Project -- a non-profit community, a family of people living with mental illness. It's not impossible to live with schizophrenia, but it requires creating an environment of people who are working toward a common goal. We need to break through the stigma. It's like being gay: We're out of the closet and embracing people who are out of the closet. That helps other people speak about it who maybe otherwise wouldn't.

"I feel very empowered here because we will make a difference, and that's how I keep going. This is our life -- when you have children your life takes on a path of its own. Part of the problem and part of the good thing is that Jani looks like a normal kid, but at the same time that hurts her. There's no visible sign that she's sick, so it's easy for people to blame parents for her behavior. I tell Jani, you're not blind, deaf or in a wheelchair. Everyone has a challenge, and this is your challenge. We're forced to live in the present. I found that very powerful and very true.

All we have is today. It makes us also move faster on what we need to do in life."

Read More about Jani's Journey at JanisJourney.org