My sister has gone off her meds.
My sister is twenty-nine, a certifiable genius, and a schizophrenic. Acting on the advice of her doctor, my sister stopped taking the drugs she had been on since October, 2001. She had developed a condition resembling the precursor of Tardive Dyskinesia, a side effect of anti-psychotic drugs where you lose control of your jaw and tongue. Your jaw clenches; your tongue moves like a worm, lolling around in and out of your mouth. Your face grimaces. Your arms, legs, fingers, toes, even your hips and trunk, betray you, doing a little Saint Vitus dance of their own.
So essentially, my sister, whom I’ll name Ella, has two very bad choices: go back on the medication and accept that her life of relative normalcy is over, or stay off her medication and accept that her life of relative normalcy is over.
Except that when you’re schizophrenic, you’re not really doing a whole lot of acceptance. If you’re anything like my sister, what you’re doing is marinating in a paradoxically anxious and ambivalent fugue, unable to think through any line of thought because you can’t hold it in your head long enough to see it, feeling a welling rise of paranoia and shame coupled with anger and weariness.
You enjoy nothing. You connect with no one. You exist in a state of near panic and near rage. You shut down, in short, because to keep on going is to run the risk of doing something that will hurt someone whom, in your memory at least, you love.
Which is what my sister did do, in the Fall of 2001, that got her on meds in the first place. Finally.
Ella had her first psychotic break at the age of seventeen. She was taking a year off from school, studying in a student exchange program. In Naples. With a family who had major problems. There was, apparently, a lot of stress. And Ella snapped.
My parents got worried when they went to Italy to visit her. Within a couple of months, Ella came back; she spent a night with me here in Gotham before my parents took her home to Vermont. She was a shadow of herself; she didn’t speak; she didn’t smile. She didn’t connect. At all.
Ella went into a locked ward, for the first time, but not for the last.
Over the next couple of years, Ella tried to take advantage of her scholarship to Williams College, but she couldn’t. She had another break and another stay in the hospital. I forget the exact chronology, but eventually she was put on some medication that made her fat and hairy, but nominally functioning, and she went to college at SUNY in Ithaca. She got very close to graduating, and then she freaked.
She went back into the hospital. In and out. In and out. I lost count.
She decided that she couldn’t go back to school, and my parents let her live at home. Ella tried to do…something. She volunteered at the PBS station. She did some kind of ecological job. She tried to work, but ultimately she almost always ended up being fired or quitting because of her anxiety and her tiredness.
My sister is eleven years younger than I, and she had many, many advantages that I did not. The daughter of my mother and my stepfather, she had two parents from birth. She had a mother who stayed at home and took care of her, who spent summers together with her on vacation. She had ballet lessons. Her parents, unlike mine, even though they were the same people, checked to see if she had done her homework, supported her in her schoolwork, and were proud of her grades.
I didn’t get that. For one reason or another, I more or less raised myself.
Ella was a gorgeous, smartass kid. She was precocious and she pissed off the teachers in our very rural grade school. She skipped ahead a grade, in part because she was just that smart, but also in part because, I think, they just wanted her out of there. My sister had a stellar high school career filled with accolades and boys and extracurricular activities. She sang. She ran track. She was a National Merit Scholarship Finalist. She was a Johns Hopkins gifted student. She was one smart, accomplished, composed, funny, pretty, witty, sparkly cookie.
After her first break, she became a ghost.
First she was a ghost in my parent’s house. Then she ran to Boston and just became a ghost. She lived in homeless shelters. She called when she felt like it. She was a lot like a drug addict—except she has never done drugs, but for the ones prescribed to her. My parents never knew when, or if, or how they would hear from her. She played one against the other, first preferring my mom, then my dad, always mad at one or the other, always able with a kind of emotional laser to inflict pain with fantastic precision.
For she is a genius, lest we forget.
Finally, my father gathered her from some shelter/bad roommate situation/fugazi living arrangement and brought her back to live with them in Vermont.
Then things started to really go bad. She became violent. My mother wanted her out of the house; my father stayed steadfast to his promise to Ella that she would always have a safe home with him.
She began acting out, running away repeatedly to have my parents collect her again and again. Stealing the car, going to Boston. Stealing money, hopping on a bus and coming here to visit me in New York.
I remember when I got the phone call from my father that Ella might be on her way to see me. It was just after 9/11, and the air was still redolent with the smell of smoldering electrical wire and bodies. I was in the midst of preparing for my Ph.D. comps. My sister had been on a rip of being particularly bitchy to me. I could feel for her, but I didn’t want to take care of her.
And I felt guilty.
I felt guilty because it had always seemed she had had it so freaking easy, and I had resented all that she had just…gotten. I felt angry at her for exhausting my parents, consuming their lives, requiring every moment of their attention, and I felt guilty for that anger too. I felt guilty for feeling she was an imposition.
I dealt with the situation, not well, but it’s tough to argue logic with a schizophrenic in full-on psychotic mode. My father came to New York and collected her.
A week later, she assaulted my mother. My mom watched her daughter being led away in handcuffs.
In many ways, it was the best possible outcome, and I believe that Ella in some unconscious manner had incrementally escalated the family drama to the point that my parents would have no option but to throw her out. And force her to get help.
Which is what happened. My father, a lawyer, made some phone calls and Ella got a conditional probation. She got on good drugs. She went into a halfway house. In time, she got a job and an apartment. She became lucid, happier, connected.
I got my sister back. I felt very lucky.
When I was home we did things together that normal siblings do. We went for coffee, we saw movies, we shopped. We talked about boys. It was good, and even though she sometimes found her hands pointing inexplicably, Ella seemed good. Happy, even. Or if sad, it was a garden-variety healthy sadness. She was no longer a fractured ghost; she regained her self, her identity, and she was in the process of coping with all that she had lost out on in her decade of illness.
And now…she’s gone again. When I called her a couple of weeks ago, I heard the old anxiety in her voice. She told me she was tired. I accepted the explanation. She may have been tired, but she was also relapsed.
Again.
May I hope for a small miracle? Something to steer my sister safely between the Scylla of schizophrenia and the Carbides of her medication? Something that will let her return to herself? To my family? To my anxious, wearied parents? To me?
Recent Comments