Our Journey to Hope
by: Joanne Halt, M.A.
In 1977 in Madison WI, Harriet Shetler, whose son suffered with schizophrenia, confided to a friend at church her challenges in caring for him. The friend suggested meeting fellow church member Beverly Young, who also had a son with a mental illness. The two began meeting for support and within 6 months had gathered 75 persons. This was the church-based grassroots beginnings of National Alliance on Mental Illness, started by family members seeking support. Today NAMI exists at local, state and national levels meeting the needs of individuals with a brain disorder and family members for education, support, research and advocacy. At St. John XXIII, NAMI volunteer family members are continuing this church based legacy with Our Journey to Hope support group (a Compassionate Ministry) and by participating in the first local 5K mental health awareness NAMIWalks on September 29th.DOWNLOAD THE BULLETIN
Journey to Hope (meeting at St. Columbkille until our parish life center is ready) started six years ago. Our core group listens with understanding and gives information and referral to NAMI programs or community based services. A mental health survey of family members found that it’s a median of 8 years from onset of symptoms to an accurate diagnosis and proper combination of medication. Eight years can mean school failure, incarceration for behavioral acting out, addiction to substances or suicide since most brain disorders manifest by age 24. Of adults diagnosed, 75% report that they experienced symptoms prior to age 24. Suicide is the 2nd leading cause of death for ages 15-24.
Brain disorders are mystifying because the symptoms are behavioral and our brain is the organ of perception. A person’s judgement is affected and time passes before families recognize that changed behaviors are symptoms caused by chemical imbalance in the brain and not simply bad choices. Denial and minimizing are usual reactions in family members. Fear, shock and blaming are common reactions when a psychiatric illness is chronic and serious. Fear of judgement due to stigma keeps family members isolated when they most need support. Insurance limits, low numbers of psychiatrists and beds dedicated to help, plus laws surrounding treatment create other barriers to treatment.
I clearly remember the psychotic break of my older brother Joe in 1977, and how my family responded. Joe was 41, married with four children and worked in the family business. He was president of the local Kidney Foundation since one son had a life-threatening kidney disease. We knew Joe and his wife were in marital counseling and we assumed there was a mid-life crisis. Diagnosed first with Major Depression, then with Schizo-Affective Disorder, Joe had both impaired mood and thinking. Joe went from productive and engaged citizen, husband and father to divorced, unemployable, and unable to function as a weekend parent. Medications back then just basically sedated patients. My father and eldest brother paid Joe’s child support. Brain disorders are the leading cause of disability in the U.S. Estimates are $193.2 billion in lost earnings per year from brain disorder disability. My brother’s illness was not typical since most brain disorders manifest by the early 20s but with enough stress, any vulnerable brain can break.
Family relationships can be damaged by mental illness. Personality gets swamped by symptoms. Joe’s contact with his children was lost, until as adults two came back to visit. I describe those early days of my brother’s illness as the equivalent of a shipwreck with each family member just trying to keep afloat. Along with financial stress, families experience increased anxiety, depression, and chronic grief. When my aging parents became Joe’s caregivers, we well siblings went into blaming mode. Surrounding Joe we said “pull yourself together, quit burdening mom and dad”. Blaming doesn’t solve anything, but so often is a first response. In this journey, families learn acceptance and compassion.
When folks come to our Journey to Hope group, their questions are many: Why him/her/me? Why did God permit this? What went wrong? What did we do or not do? What can we do now that will help? The mix of confusion, anger, fear, guilt and grief can give way to understanding, empathy and effective support. Today with newer medications, brain disorders are a chronic but manageable illness. Untreated, they become a community health issue.
On September 29th at 6pm, our middle and high school students will walk over the Edison Bridge to raise awareness and bust stigma. We invite you to support them with donations and/or sign up to walk at NAMIWalks.org/southwestflorida. Being a virtual walker is an option! I will be walking to honor Joe’s memory. Donations received this weekend and next will sponsor our youth who registered to walk as representatives of Journey to Hope. Our next support group meets at St. Columbkille at 6pm, Monday October 1st.