Nancy lives alone. She has borderline personality disorder, which makes a group home unsuitable because among other social challenges her symptoms include paranoia: she thinks that random accidents or inconveniences are really deliberate offenses committed by other people.
When she lost a letter to a friend, housemate Alice must have taken it. When Renata in the room next to Nancy’s dropped a book, she must have been trying to disturb Nancy’s sleep. If housemates were whispering in the kitchen, their conversation must have been about Nancy.
In short, Nancy’s suspicions resemble some of my own, and probably some of yours. I don’t know how your family of origin worked, but when my three sibs and I were small, “Which one of you did it?” was always the tense Question Of The Hour. So my knee-jerk reaction when things go wrong is to assume there’s a perp. But Nancy’s suspiciousness, compared to yours or mine, is hugely magnified by the chemistry of her brain. Her brain chemistry also blocks self-awareness, while mine allows me the kind of commonsense insight that distinguishes between reality and delusion and makes me smile at my own silly tendency to give all the nuisances in my life a Me-centered cause.
Nancy dropped out during her sophomore year of high school because her mind wouldn’t focus. Now 32, stabilized by medications and regular meetings with her case manager, she’s made steady progress toward earning her GED degree with the assistance of tutors at LiteracySource in Fremont, and has passed the humanities sections of the exam. She’s also held part-time positions to supplement her disability payments and would love a job that involves caring for animals. At our coffee meetings we talk about misunderstandings with co-workers or employers, and about life in general. We discuss and sometimes laugh about guys and romance – Nancy’s blond sweetness can attract undesired male attention. Her hopefulness and her persistent determination to build a life for herself bring light and warmth to our coffee hours.
But while I was volunteering at a refugee center in Rome this winter, an email arrived from her saying that she had decided to stop taking her medications. Her message concluded blissfully: “I’m feeling so wonderful!”
I replied with a reminder of how proud she’s been of managing her symptoms for nine years by staying in treatment no matter what. I reminded her of her progress at work, in her studies, and in her relationships. “I’m worried that you might throw away all this progress,” I wrote. “Please think again about this decision?” I said I’d phone if she wanted to talk, but by the next day she’d changed her mind and written back, “Maybe you’re right. I called my case manager and made a new appointment. Maybe I got the wrong idea because I had a really bad cold and wasn’t thinking straight.”
Discontinuing medication is a wrong idea shared by more people than those who have mental illnesses. It’s why doctors and pharmacists have to add stringent instructions on prescriptions for antibiotics: even if we feel better after taking half the pills, we must continue until all are taken.
For people with mental illnesses the understandable wish to stop putting chemicals into their bodies is intensified by the extreme weight gain caused by many antipsychotic drugs, bringing along with it a high risk of diabetes. Worst of all is the stigma that society imposes on mental illness. Those who faithfully take their medications are reminding themselves with each dose that their brains don’t work like other people’s and that they have a disease most Americans consider deeply shameful and terrifying. Taking their meds, especially when their insight is blocked by their illness, requires exceptional grit and perseverance on their part.
It would be wonderful if Americans accepted people with mental illnesses as being no more dishonorable or frightening than people with cancer. Until this change in the public mind comes about, a friend outside the family and the health services system can contribute greatly to the stability of a person struggling to manage a psychiatric condition.
Nancy thanked me in her soft, musical voice at our first coffee hour after I returned to Seattle: “I like that I can tell you what I think. Even if it’s a really dumb idea, you don’t stop wanting to be with me.” And I like that Nancy can tell me what she thinks. Her trust in me makes me happy, and it’s a privilege to spend time with this heroic, gentle person.
More Freestyle Volunteer stories are at Get Started, tabbed above.