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families everywhere struggle to cope with mental illness

Story and photos by LIZ QUIRIN
Messenger editor

The candle was lit, and 23 heads were bowed in prayer and remembrance. This could have been a meeting of a parish council, a church task force, an outreach agency or a group of any kind.

But it wasn’t. It was a biweekly support group meeting for the family and friends of those with mental illness.
“An estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in a given year,” according to the National Institutes for Health web site. “When applied to the 2004 U.S. Census residential population estimate for ages 18 and older, this figure translates to 57.7 million people.”

Statistics can provide insight into an issue, but real people and real stories bring the message home in a very personal way.

For example, the Smiths — Tom, Fran and Kevin — direct the Karla Smith Foundation (KSF) to provide “hope for a balanced life to family and friends of anyone with a mental illness or who lost a loved one to suicide.”

The foundation was formed after Karla Smith, their daughter and Kevin’s twin, died by suicide in 2003. She had been diagnosed with bipolar disorder.

At the support meeting, the atmosphere in the room was striking, at once quiet and respectful with people straining to hear the almost whispered anguish as a family member struggled for control as a story unfolded. At another moment, far less solemn, welcome laughter was shared as pent-up trauma was seen from a different perspective.

People attended to find support, to develop strategies to live with a loved one with mental illness, to handle their frustrations and pain in a positive way, to cry, to feel angry, to be cared for as only those who understand could care.
Jeff and Anita Toth of Waterloo can’t go to every meeting. Their oldest child, Michael, almost 11, was officially diagnosed with early onset bipolar disorder, ADHD and Asperger’s at age 6.

While Anita Toth said the diagnosis of a child that young remains controversial, the family doesn’t “focus much on the label but keeps working on the treatment.”

The Toths home-school Michael and his four sisters because he doesn’t fit well into a classroom setting with other children. His aggressive behavior requires close supervision, his parents said. He’s unpredictable.
“Come to dinner,” can be a clarion call to arms, according to his mother. “You just don’t know.”

However, “most days it is a constant challenge living with him, but some days he is very charming, entertaining and helpful; he’s also very intelligent and creative.”

Like Michael, most people suffering from bipolar or other disorders are a puzzle — sometimes charming and other times out of control.

While the support group seated around the table came because of their needs, their stories were unique, and no one person or family stood in the same place: Some were there for the first time while others regularly attended the meetings.

When asked to define “where you are right now,” the answers varied widely. A few were on stable ground with their loved ones taking medication and working through problems. Others stood on the shifting sands of frustration and a kind of chaos that comes from knowing a problem is about to overwhelm them but having no idea what to do.
Nuggets of wisdom are sprinkled throughout the evening: “You can’t act rationally in the face of irrational behavior,” Tom Smith said.

And, “Part of letting go is the knowledge you did the best you could at the time,” Fran Smith said.

Tom Smith, who has written six books, uses his most recent one, “A Balanced Life: 9 Strategies for Coping with the Mental Health Problems of a Loved One,” at the support group meetings.

Chapters of the book become guides for action. Most recently, the group considered the need for “Intentional Networks,” people who can be counted on to help the caregivers.

The Toths said their network is small but reliable, giving them a break from the constant stress of caring for someone diagnosed with mental illness.

Other strategies in the book include medication, counseling, education, self-esteem, acceptance, self care, warning signs and faith.

Faith in the Toth family has been strengthened. “The incredible thing about Michael’s illness is that it has solidified our marriage and our faith in God,” Anita Toth said. “No one else can truly understand the roller-coaster ride we’re on (because every family’s diagnosis and symptoms are different), so even though we have a wonderful extended family and a great support group with KSF, we’ve learned to completely depend on each other and God for our source of strength and hope.”

Hope does spring eternal for these families, and it surfaced at the support group meeting as well.
One couple who had been absent from the meetings came and brought another couple with them, a new couple who needed to be wrapped in understanding and acceptance.

The original couple, relaxed and happy, said their daughter had been taking her medication and was doing well. They didn’t take this as a sign of cure but of stability for the time being.

Those attending the group have loved ones with a variety of illnesses and disorders. Their common bond: love of the family member or friend and a need for information, support and sharing.

KSF offers support groups, peer-to-peer coaching, education programs, awareness events and counseling assistance.

Breaking down the stigma of mental illness takes courage, but more people are stepping out of their comfort zones to talk about it, including people like the Toths among others.

When one couple began speaking about their daughter’s illness, they said others began to call them, to ask for advice because they had a family member who needed help.

These days those who suffer and their families have begun to speak out, locally and nationally. KSF has participated in an annual conference called “Erase the Stigma,” not only to dispel misinformation but to encourage those suffering to seek help.

The Toths attend KSF meetings as they can, and national conferences, seminars or workshops as well to keep abreast of the ever-enfolding information on mental illness.

“Our faith has grown so much through this experience and although we really pray and hope for a cure for Michael, we have learned that God always cares and provides for us while we wait.”

For more information about KSF please go to www.karlasmithfoundation.org.