Mental illness is a family disease.
It’s a crushing weight, a constant battle of distorted perceptions of need and the consequences of ineffective treatment systems, of fighting ridiculous policies.
But the unrelenting stigma — “we didn’t want to tell our friends about our daughter” — may be the heaviest weight to bear of all.
“You treat your dog better than our daughter was treated,” said Tim Woody, talking about an ER hospital visit. His daughter overdosed in April 2016 after a progression from pain meds to heroin on the street her freshman year at a UNC university.
The perception about substance abuse is that “you did this to yourself,” he said. “But the real root is the inability to handle certain stresses or anxieties, at least that was our case. It comes out in different ways. There’s no way it could be a choice to suffer through these situations, and detox is two weeks of absolute misery.”
We all have our breaking point. For his wife, Dawn, it was the overdose, when the hospital all but “dumped” their daughter, bipolar and battling severe insomnia and an anxiety disorder, with no place to go, no transportation to get there, no support and no plan for getting well.
A shockingly personal News & Observer article profiling the family’s struggle was blunt: Forcing families to go from crisis to crisis provides no continuity of care, wastes obscene amounts of money and makes recovery almost impossible. “If my daughter had been having a seizure or had been in a diabetic coma, or having a heart attack, her treatment and aftercare would have been vastly different,” Dawn said.
It’s a disturbing story. Some of the 22 facilities treated their daughter’s eating disorder and wouldn’t touch her substance-abuse issues. Others kicked her out when she forced herself to throw up. It took two years of this revolving door, often 30 days at a time, before anyone conducted a mental health screening and diagnosed their daughter with bipolar disorder.
For Tim, it was the insanity of driving from Raleigh to Wilmington and back every 24 hours to fill out paperwork. His daughter had walked out of a voluntary treatment center after an abrupt change in medication and was living on the street, and his only recourse since she was over 18 was to have her committed involuntarily for 72 hours of observation when she was found. The form was only valid for a day, so for four days he drove 120 miles after work to complete the involuntary commitment documents…the miles it took to pull his daughter back to safety.
Their individual breaking points inspired the couple to do something together bigger than the already monumental job of helping their daughter.
The two helped establish Stand by Me NC, a volunteer-based, non-profit organization that “believes in the capacity of our collective voice and our individual stories. We create change and combat social stigma, public apathy, and government inaction through sharing the stories of our personal pain and our dreams for what we know life can be for those who live with these illnesses.”
“I’m an educated person, and I didn’t know where to start,” Tim said. He’s “learning stuff everyday…it’s massive, it’s huge, it’s overwhelming.”
But he and Dawn aren’t alone. The mission resonated with the 87 people who showed up for the first meeting in late August. The group is finalizing its guiding documents, and electing officers for the five main areas of administration, family advocacy, policy, outreach and volunteer coordination. Dawn, and Donna K. Smith, are co-directors.
The website’s explanation of the organization’s vision and mission is powerful.
Determined to change a dysfunctional system, “scores of other North Carolinians scarred by our dysfunctional mental health care system have had enough. They are channeling their outrage,” and they vow Stand by Me NC “will not be ignored by those with the power to create a better system.”
“We are frustrated that we live in a world where mental illness serves as an easy point of blame – for homelessness, for crime, for violence. Where people with mental illnesses are blamed for the failures of our medical system in treating them. A world where mental illness is often misdiagnosed or attributed to persons without diagnosis, and where these diagnoses are used to label and marginalize individuals. Where the experiences of those being treated are discounted.
On a most basic level, no system can effectively act for those it serves when it begins from a position of hopelessness. When the future it envisions contains no possibility. When it fails to recognize that the people it treats are people who have aspirations and fears, desires, and relationships just as any person does – and for whom management of these conditions is not only a process but is one which is both personal and individual.
More often than not care for mental illnesses in NC is ineffective and a painful, damaging experience. On every level for everyone.
Until our community begins to see the people and the lives which lie behind the umbrella of mental illness, this situation will not change.”
They are seeking to validate the experience of those living with mental illnesses, and importantly to “correct the perception that mental illness is a terminal life-time sentence.”
October 9’s Walk for Hope is Stand by Me NC’s “coming out” party. An annual event hosted by the Foundation of Hope for Research and Treatment of Mental Illness, 100% of the money raised by participants directly funds local mental health research at the UNC Neurosciences Hospital in Chapel Hill.
All are welcome to join the walk, or get involved with Stand by Me NC’s efforts.
Their daughter is safe now, living in a sober community and working in Maine, doing well with little supervision, determined to be productive and supported by the understanding that she is “part of a bigger picture, that people are counting on her to stay sober,” Tim said.
Stand by Me NC is already making an impact, and it’s only the very beginning.