I’ll never forget standing beside my sister Lucy as she was strapped to a gurney during a midnight admission to an E.R. in Cambridge, Mass.—one of 13 or 14 hospitalizations, I’ve forgotten which—and hearing her try to persuade hospital workers to release her.
She was profoundly articulate and compelling as she made her case, but by then she’d been diagnosed as borderline, which, of course, meant that anything she expressed in her own defense would be discounted as manipulative and disordered.
I don’t remember what I said, exactly. What I wanted to do, then and always, was scream at everyone in screaming distance: Don’t you realize?! This woman is the sweetest, most caring, most extraordinary soul you’ll ever meet in your life! She’s funny as hell! She’s a pianist! She plays Beethoven like she knew him! Treat her with compassion! Acknowledge her humanity! Listen to what she says!
This was back in the late 1980s, shortly after I dropped everything and went to live with her. I’ll never stop dwelling on that moment and the system that failed my sister. I’ll never stop trying to process her suicide in 1992, just as I’ll never stop working to process my husband’s in 2011. This is the nature of grief following suicide: It never truly resolves. Those of us left behind spend the rest of our own lives trying to understand why our loved ones’ were cut short—and what might have helped them survive. We envision alternate timelines in which they healed, recovered, perhaps blossomed, even thrived.
Right now I’m finishing a novel in which I try to bring Lucy back from the dead. In it, I persuade an eccentric Harvard neuroscientist to put me into a coma, and I zip up to heaven on a quest to drag her home. It’s a bizarre little book, probably unpublishable. But I don’t care. It’s been a way for me to honor Lucy, visit her, see her in a new light, understand her better. It’s been a prod and a platform for questioning all that happened to her and imagining in a different reality, a different realm, one where she isn’t drugged and harmed, one where she isn’t hospitalized, one where she brings joy to herself and others through music and so much else.
As it was, she couldn’t. Near the end of her life she couldn’t concentrate. She couldn’t play the piano. She abandoned her dreams of becoming a concert soloist. She couldn’t work. She couldn’t live with hope. By the close of her ordeal she couldn’t make it through a day, or barely a moment, without wanting to kill herself.
From the beginning, she also couldn’t get the system to care about her. Once she started being hospitalized? Labeled as This, That, and The Other Thing, drugged on X, Y, and Z? Forget it. Her nutty sense of humor, her profound musicianship, her fondness for tea and chocolate, her kindness toward her goofball younger sister: None of that mattered, because she didn’t matter. Not to those who were charged with helping her. Not the way she deserved.
The long arc of Lucy’s story began at birth, when forceps squeezed her temporal lobes and caused a form of epilepsy that remained undiagnosed for decades but prompted hallucinations and other extreme states from a very young age. Later on she recalled watching the grass wiggle without a breeze. At Harvard, during her conversion to Catholicism, she saw and spoke with God. But at the time, she had no idea. I certainly didn’t, as she hadn’t told anyone about her childhood experiences. Had she, perhaps her temporal lobe epilepsy might have been identified as the cause—and perhaps her course through healthcare might have taken a different route.
Instead, she was slapped with one psychiatric label after another. BPD. Major depression. Antisocial personality disorder. Panic disorder. Histrionic disorder. Manic-depressive (now known as bipolar) disorder. Obsessive-compulsive disorder. The list goes on.
And even after they identified her TLE, she kept being diagnosed with additional disorders and kept being prescribed all sorts of drugs, including some to combat the pileup of side effects. Beyond anticonvulsants, the long paper trail over the course of her treatment included three dozen or so prescriptions. Tricyclics. SSRI’s. At least one antipsychotic. Several sedatives, including Xanax, to which she quickly became addicted. Oh, and lithium. Also Cogentin, a Parkinson’s drug. Plus Cylcert, a stimulant, which came with a risk of liver damage. You name it, she was on it at some point, and I’m only exaggerating slightly.
“You’re on so many drugs, you could die of organ failure,” her neuropsychopharmacologist told her. I didn’t like this guy. I didn’t see how anything he did helped my beloved sister. Instead, whenever some new drug dropped, he whipped out his pad and wrote her a script.
This is the same doctor who pushed her to have electroconvulsive therapy at McLean Hospital outside Boston—after she’d been diagnosed with TLE. There they rolled her into an oddly sunny room (or so my memory tells me) and plugged her with electrodes. I wanted to stay by her side as they zapped her brain, prompting a seizure, but I wasn’t allowed. Of course I wasn’t.
None of this made any sense to me. Not the ECT, which rocketed her to an artificial high for a couple weeks before she crashed and burned, complete with memory loss. Not the multitudinous diagnoses. Not the nonstop cascade of drugs, then more drugs, then more. Yes, I knew Lucy was suicidal. We talked about it frequently—her pain, my fears. She made one previous attempt before her final one, later writing an autobiographical account of waking from her three-day coma that I’ve been fictionalizing and incorporating into my novel.
But I also knew that she hadn’t been actively, acutely, horrifically, continuously suicidal until after she’d started seeing a psychiatrist. Until after she started being medicated. Before that she’d been struggling, yes, but she could make music. She could live without trying to die. In retrospect, after all that I’ve learned in my years reading and working for Mad in America, I wonder about the side effects. I recall some of the agonies Lucy described to me as facets of her TLE and “mental illness”—the suicidal ideation, the manic episodes when she bolted into the night, the “depersonalization,” the sensation of ants crawling up and down her body—and I wonder, now, whether she was actually suffering from akathisia and other iatrogenic harms of the very drugs she was put on and taken off, often abruptly. Perhaps she suffered from withdrawal, too.
But we had no way of knowing, back then. While psychiatric survivors had started speaking out in the 1970s, there was no internet. There were no blackbox warnings about suicide risks, and the Hearing Voices movement was just bubbling up. There were no universally accessible resources and information on alternate approaches. Had Lucy met someone in person, some clinician or peer, who questioned the existing paradigm and offered another way, that might have changed everything. But she didn’t.
All of which prompts an inevitable and endless rash of what ifs. What if my sister hadn’t been misdiagnosed repeatedly, her temporal lobe epilepsy unrecognized until far too late? What if she hadn’t gone on a satchel of psychiatric drugs, suffering harms no one acknowledged back then? What if she’d gone on them but recognized some of her symptoms as side effects? What if she’d encountered some other form of support?
Maybe, had Lucy lived just a little longer or was born at a later time, she might have found a way. In my bonkers novel, I chew on all of this: Not just the what ifs but the mights. In one alternate timeline I envision on my jaunt to heaven, she might never have been misdiagnosed and overmedicated. She might never have been drugged and damaged. She might have been treated with utmost empathy and care. In another timeline, she might have weaned herself off all those drugs, recovered from all their harms, and learned to live with her TLE and hallucinations. Listen to them. Even grow with them.
Then she might have fallen in love, gotten married, had kids, and been a fun, wacky aunt to her sister’s brood. She might have resumed playing the piano. She might have performed Beethoven’s “Waldstein” sonata before rapt audiences who gulped down her insights, who bathed in her warmth. Visiting her in the afterlife in my book, I can hear the music coming from the old Mason & Hamlin in our childhood home. I can watch her at the keyboard, swaying, pressing, leaning into the power and poetry with a heft and insight I haven’t seen or heard in 35 years. And I can picture, as I do, some miraculous split in the space-time continuum that allows her to come back. Make music. Be with me. Be well.
I know things aren’t exactly perfect in mental healthcare, these days. I know psychiatric treatment continues to harm countless people. Looking at the critical psychiatry movement and all the personal stories being told on MIA, I know that Lucy’s saga of drugs, hospitalization, silencing, and dehumanization is still too common. Consider the abuse of people in treatment, the loved ones trying to help, the surge in antidepressant usage among youth (most recently, in Australia and New Zealand), or the grieving parents calling for more attention to the risks of suicidality (in the UK).
They speak out because they have to—because, once again, grief following suicide is a forever proposition. There’s no getting over it. There’s no making sense of it, not really. There’s only the constant urge to tell the stories of our treasured ones who tried to stick around, who tried to make a go of things, but couldn’t find any respite or recovery in the prevailing system. Not then. Not now. Not all these decades later.
Maybe they didn’t matter to that system. But they matter to us, and always will. And the system needs to change.
In some other reality, Lucy would be calling for it.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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