Trapped by Devils and Evil Spirits
The evil spirits are after her again, telling her she’s ugly and old, sabotaging her search for a job, telling her that she should kill herself. Sometimes the good spirits tell her to shop for food and encourage her to take her pain medicine, but until she receives their instructions, she’ll continue living in her son’s spare bedroom, turned away by community mental health services, misunderstood in the emergency room, and experiencing more and more severe delusions and hallucinations. Before this, she lived in her car. It was hard to keep a home as she’d cause problems by accusing neighbors of spying on her or breaking into her place.
“The evil spirits are after her again, telling her she’s ugly and old, sabotaging her search for a job, telling her that she should kill herself.”
Before the evil spirits, before her illness, before all of this, my mom worked for the state of California and raised two healthy, self-confident children who are valued members of their communities. But now that she has lived for years with schizoaffective disorder without ever getting treatment, her condition has worsened. It’s a daily struggle just to keep her functioning. Because she doesn’t accept that she’s ill, we face an uphill battle at every step.
She cycles in and out of medical facilities after psychotic episodes, regularly leaving against hospital advice because she believes she’s unsafe there. I’m starting to doubt how much an underfunded health system that prioritizes personal choice in the face of mentally ill patients’ distorted perceptions and obvious need for treatment can actually do. I wonder if health workers’ claims that there are no medically valid exceptions to the “right to refuse” aren’t just excuses for avoiding responsibility. I took a leave from my teaching job to care for her and started a crowdfunding page to help cover the lost resources and cost of her care. This lack of support from the healthcare system has cost my community not one, but two productive members.
If the threshold for receiving involuntary treatment in my state was more compassionate – if it did not require destitution and abject helplessness before a person could be declared incapable of self-care, my mom could have received help long ago to stabilize her mental illness and start recovery. Her experience and that of my family is evidence that the lack of access to inpatient care is as significant a barrier as a lack of capacity in mental health care facilities. You can read more about our story on my blog: https://benevolentneglect.com