I’ve had to explain to countless friends and relatives lately that you can’t force someone to take medications or see a doctor. Federal and state laws protect the right to remain untreated, unless and until a person becomes a threat to him- or herself, or to another person.
These are the rules of the game my sister plays.
She’s not a celebrity, but her most recent spiral into darkness has been public all the same. Over the past few months her delusions and paranoia have been chronicled in a way that, just a few years ago, only her closest friends and relatives might have seen.
She recently re-emerged on Facebook after years of inactivity. “Miraculously, I have woken up, and puzzlingly I find myself in Kansas,” she wrote.
The “feds” were after her, she said. Luckily President Obama was on her side, and Larry Page had her back. But assassins were everywhere, and the attempts on her life were almost daily.
Soon texts and emails from concerned friends and family began to flood my phone. I cringed when I checked her Facebook profile. Almost 400 friends. Elementary and high school friends. Work friends. Former teachers. Ex-boyfriends. Extended family. Over the past few months her posts have been constant. Hundreds of them, all set to public.
Sure the fog of paranoia would lift eventually, I tried to save her from herself. She wouldn’t talk to me on the phone, but I attempted to reason with her via Facebook instant message.
“I want you to know your posts are causing a lot of concern and worry,” I wrote. “I know you feel the urge to write but Facebook is not the best place. At least not anymore.”
But she felt compelled to continue the prolific posts for her own safety.
“Facebook’s not the best place when it is the ONLY reason I am alive?” she responded. “You are going to get me killed.”
Only a few years ago, things were very different. My beautiful sister made friends quickly, laughing easily and often, her bright brown eyes and long brown hair shining. Despite struggling through grade school and graduating from high school with a solid C average, she managed to rack up some impressive life achievements—a prestigious scholarship abroad, a graduate degree at an Ivy League School, a marriage to a handsome, well-respected professor and author.
It was during her grad student years that we first started to worry. Graduate school can be stressful for anyone, and though she made some close friends, her experience was marked by strife and controversies that seemed too personal, too turbulent.
Her personality seemed to change. She fought like a teenager with our mother. Long the closest person in my life, she didn't seem to care that I was getting married. She was distant and mistrustful toward my fiancé. She made odd remarks about people we’d known all our lives, telling stories about them I had a hard time believing, and labeling them jealous or cruel for reasons I couldn’t understand.
Things began to deteriorate the winter after her graduation. Her husband called me with panic in his voice. “She really needs her family right now,” he said, desperate for someone to do something. “Call her.”
He stuck it out for a while, but in the end it was too much for him, and he finally asked for a divorce.
She lived with us for a few months when she moved back to the United States, alone. She was depressed, understandably, but we hoped that with the help of therapy and medication she’d pull out of it eventually, meet someone new, and get a job. Ideally one with benefits. Her husband was in no rush to finalize the divorce, so she could continue to access his health care benefits, but that couldn’t last forever.
Eventually she moved to San Francisco, renting a big room in a shared apartment. She worked part-time at a yoga studio, took dance classes, wandered the streets smoking cigarettes, attended daily support groups.
When she came to visit her nieces and nephew, she was an adoring aunt but not always a kind sister. I had to explain to my kids. “Your aunt is sick,” I told them one day when she suddenly exploded at me after hours of nursing a perceived slight. “Her brain tells her things that aren’t true, so she doesn’t always act right. She can’t help it, and she loves us." I needed them to understand that this wasn’t normal adult behavior. They nodded and asked questions, sad but understanding.
She became increasingly delusional and paranoid. I emailed her doctor many times, a well-known psychiatrist and professor at a world-class university. Usually there was no response at all. When there was, it was just a brief statement: “She has yet to give me permission to speak with anyone.”
Privacy laws prevent doctors from discussing treatment and diagnosis with family members unless the patient specifically grants them permission to do so. Often the onus is on the patient to call the doctor to grant that permission. And it can be rescinded at any time.
I began hearing about a boyfriend from family members and mutual friends, but she never mentioned him to me. Then one day she sent me an angry text. I had confused her about which train station we were to meet at. He was going to be there, and I had sabotaged his attempt to propose.
I denied it, but for almost a year she wouldn’t talk to me. For almost four decades, I had been the closest person to her in the world, but suddenly she no longer trusted me. Though she was less than 40 miles away, I didn’t know what or how she was doing. She ignored my calls and blocked me on Facebook. I realized eventually there was no boyfriend.
Though I was now cut off, she would occasionally talk to other family members and a handful of friends. We emailed each other frequently to find out if she had been in touch, grasping for clues about her mental state.
At one point, she moved out of her apartment, telling no one where she was going. Though we knew she worked part-time as a receptionist at a yoga studio, we weren’t sure which one. She had stopped checking her email and responding to text messages long ago, and wouldn’t answer her cell phone, if she even had one. I filed a missing person report.
Our youngest brother, who lived in her city, was finally able to find her at the yoga studio. He started coming around to her apartment and work to check in on her. Usually she was receptive to his visits, though not always.
One day she walked out of work and checked herself in to an emergency room. We learned, when she finally called her ex-husband, that she had been transferred to an in-patient psychiatric ward. The hospital had put her on a “5150” – an involuntary psychiatric hold.
I went to visit the next day, armed with magazines, candy and cards from my children, hoping to regain her trust. To my relief, the “gangsters” were now the enemy, not me, and she let me back in, even agreeing to let her doctors speak with me. But she refused to give the psychiatric ward doctor permission to talk with her “regular” psychiatrist, who was as frustratingly impenetrable as ever.
She felt safe in the psychiatric ward, but she couldn’t stay forever. The next step would be a partial-hospitalization program, and she would be on her own again after that.
Her doctor did not want her to continue to live alone—she would need someone to support her, make sure she got to her appointments on time, help her get to work, and generally take care of her. I spoke with the social worker at the hospital. The news was not good. Options for group homes ranged from depressing to expensive.
After a brief stint back in her apartment, she accused one of her roommates of spying on her, and had frequent visits from the police prompted by our calls of concern. The landlord called to tell me that we would need to get her to leave.
She agreed to move to Kansas, to live with our parents, who could make sure she was fed well and taken care of. We had to call the police in the Denver airport to make sure she’d get on her connecting flight, but she made it.
Eventually she stopped taking her medication—around the time the Facebook posts began, I’d guess. She started staying out late, hanging out at college bars. The police were called on more than one occasion. Recently she spent a night in jail. My parents bailed her out with the promise that she would see a doctor, a promise that, unfortunately, she did not keep.
They woke her one morning to take her to an appointment made on her behalf. She refused to go. When they insisted she became violent. My parents called the police, leading to a trip to the hospital and then another psychiatric ward.
They discharged her after two weeks. Though she agreed to continue to take her medication, she stopped almost immediately. She missed all her follow-up appointments, sure that the doctors harbored ill will.
She hasn’t forgiven my parents for calling the police, so she spends most of her days out of the house, wandering the street or using the library’s computer, coming home late at night to shower, eat, and sleep.
And the Facebook posts continue. Almost daily. Sometimes hourly. Sometimes every few minutes. Arguing her case against the assassins and “the feds.” I know more about the inner workings of her mind now than I have for a long time. And I miss her every day.
For now we pray, and we wait. For my sister to realize she needs help, on her own, or for things to get worse. Again.
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