The Death and Life of My Sister Lucia: Imagining an Alternate Timeline of Healing

I will never forget standing beside my sister Lucy as she was strapped to a gurney during an overnight stay in an emergency room in Cambridge, Massachusetts.

She was deeply articulate and convincing as she made her case, but by then she had been diagnosed borderline which, of course, meant that anything she voiced in her defense would be discounted as manipulative and messy.

I don’t remember what I said, exactly. What I wanted to do, then and always, was yell at everyone within shouting distance: Don’t you realize?! This woman is the sweetest, most caring and most amazing soul you will ever meet in your life! She is funny as hell! She is a pianist! She plays Beethoven as if she knew him! Treat her with compassion! Recognize her humanity! Listen to what she says!

This was in the late 80’s, shortly after I dropped everything and moved in with her. I will never stop dwelling on that moment and the system that failed my sister. I will never stop trying to process her suicide in 1992, just as I will never stop working to process my husbands in 2011. That’s the nature of grief after suicide: it never really goes away. Those of us left behind spend the rest of our lives trying to figure out why our loved ones were cut short and what could have helped them survive. We foresee 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 to life. In it, I convince an eccentric Harvard neuroscientist to put me into a coma, and I whiz to heaven to drag her home. It’s a quirky little book, probably unpublishable. But I don’t care. It was a way to honor Lucy, to visit her, to see her in a new light, to understand her better. It has been a stimulus and a platform to question everything that has happened to her and imagine herself in a different reality, a different realm, one where she is not drugged and damaged, one where she is not hospitalized, one where she carries joy to herself. and others through music and much more.

As it was, it could not. Towards the end of her life she could not concentrate. He didn’t know how to play the piano. She abandoned her dreams of becoming a concert soloist. She couldn’t work. She couldn’t live with hope. At the end of her ordeal she could not get through a day, or even a moment, without wanting to kill herself.

From the start, she also couldn’t get the system to take care of her. Once she started being hospitalized? Labeled as This, That and The Other Thing, doped up with X, Y and Z? Forget it. About Her His mad sense of humour, her deep musicianship, his fondness for tea and chocolate, her kindness to her silly younger sister: none of it mattered, because she didn’t matter. Not to those who were charged with helping her. Not like she deserved.

The long arc of Lucy’s story began at birth, when forceps crushed her temporal lobes and caused a form of epilepsy that went undiagnosed for decades but resulted in hallucinations and other extreme states from an early age. She later recalled seeing the grass swaying without a breeze. At Harvard, during her conversion to Catholicism, she saw and talked to God. But she had no idea at the time. Certainly not, as she hadn’t told anyone about her childhood experiences about her. If she, perhaps her temporal lobe epilepsy could have been identified as the cause of her and perhaps her course through health care could have taken a different route.

Instead, she was slapped with one psychiatric label after another. DB extension. Severe depression. Antisocial personality disorder. Panic attacks. Histrionic disorder. Manic-depressive disorder (now known as bipolar). Obsessive-compulsive disorder. The list goes on.

And even after they identified her TLE, she was diagnosed with further ailments and prescribed all manner of medications, including some to combat the buildup of side effects. In addition to the anticonvulsants, the extensive paperwork during her treatment included about three dozen prescriptions. Tricyclics. SSRIs. At least one antipsychotic. Several sedatives, including Xanax, which she quickly became addicted to. Oh, and lithium. Also Cogentin, a drug for Parkinson’s. Plus Cylcert, a stimulant, which carried the risk of liver damage. You name it, he was on it at one point, and I’m just exaggerating slightly.

You take so many drugs you could die of organ failure, her neuropsychopharmacologist said at one point. I didn’t like this guy. I didn’t see how everything he did helped my beloved sister. Instead, every time a new drug dropped, she took out her notebook and wrote her a script.

This is the same doctor who pushed her to undergo electroconvulsive therapy at McLean Hospital outside BostonAfter she had been diagnosed with TLE. There they rolled her into an eerily sunny room (or so my memory tells me) and connected her with electrodes. I wanted to stand by her as they blew her brain out, causing a seizure, but I wasn’t allowed to. Of course I wasn’t.

None of this made sense to me. Not the ECT, which put her on an artificial high for a couple of weeks before she collapsed and burned out, complete with memory loss. Not the multiple diagnoses. Not the steady cascade of drugs, then more drugs, then more. Yes, I knew Lucy was suicidal. We often talked about her, her pain, my fears. She made an earlier attempt before her final one, later writing an autobiographical account of her awakening from her three-day coma which I fictionalized and incorporated into my novel.

But I also knew that she hadn’t had active, acute, horrific, ongoing suicidal tendencies until she started seeing a psychiatrist. Her until she started being medicated. Before that she had struggled, yes, but she could make music. She could live without trying to die. In retrospect, after all I’ve learned in my years reading and working for Mad in America, I wonder what the side effects are. I remember some of the agonies Lucy described to me as aspects of her TLE and mental illness suicidal ideationTHE manic episodes when she escaped into the night, the depersonalization, the sensation of ants crawling up and down his body and I wonder, now, if he really suffered from it akathisia and other iatrogenic harms of the same drugs being given and withdrawn, often abruptly. Maybe she was also suffering from withdrawal.

But then we had no way of knowing. While psychiatric survivors had begun speaking out in the 1970s, there was no internet. There were no blackbox warnings about suicide risks, and the Hearing voices the movement was just seething. There were no universally accessible resources and information on alternative approaches. If Lucy had met someone in person, a doctor or a colleague, who would question the existing paradigm and offer another way, that could have changed everything. But she didn’t.

All this causes an inevitable and endless eruption of what if. What if my sister hadn’t been misdiagnosed repeatedly, her temporal lobe epilepsy not recognized until too late? What if she hadn’t gone on a bag of psychiatric drugs, taking damage that no one recognized back then? What if she took them but she recognized some of her symptoms as side effects? What if she met some other form of support?

Perhaps if Lucy had lived just a little longer or been born later, she might have found a way. In my crazy novel, I chew all of this: not just the what ifs but the powers. In an alternate timeline I imagine on my trip to heaven, she may have never been misdiagnosed and overmedicated. She may never have been drugged and harmed. She could have been treated with the utmost empathy and care. In another timeline, she could have kicked off all those drugs, recovered from all their damage, and learned to live with her TLE and hallucinations. Listen to them. Even grow up with them.

So she may have fallen in love, married, had children, and been a fun and quirky aunt to her sister’s brood. She may have resumed playing the piano. She could have performed Beethoven’s Waldstein sonata before rapturous audiences who swallowed her intuitions of her, who bathed in her warmth. Visiting her in the afterlife in my book, I can hear music coming from the old Mason & Hamlin in our childhood home. I can watch her at the keyboard, swaying, pressing, leaning into power and poetry with a weight and insight I haven’t seen or felt in 35 years. And I can imagine, as I do about her, a miraculous rift in the space-time continuum that allows her to go back. Playing music. Be with me. Take care.

I know things aren’t exactly perfect in mental health care these days. I know that psychiatric treatment continues to harm countless people. Looking at the critical psych movement and all that the personal stories told on MIAI know that Lucy’s saga of drugs, hospitalization, silencing and dehumanization is still too common. Consider the abuse of people being treated, the loved ones trying to help, the increased use of antidepressants among young people (most recently, in Australia AND New Zeland), or bereaved parents who ask for greater attention to the risks of suicide (in the UK).

They speak up because they have to because, again, grief following suicide is a forever proposition. There is no way to top it. It doesn’t make sense, not really. There is just the constant need to tell the stories of our loved ones who tried to stay, who tried to make things work, 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 are important to us and always will be. And the system must change.

In some other reality, Lucy would request it.