My Sister Carla: A Personal Story About Mental Illness

I have an acute aversion to pretense. I think that’s why I react so strongly to charades like “New Jersey can remedy educational inequity by funneling massive amounts of money to poor urban districts”; or “98 percent of teachers are effective or highly effective”; or  “low student proficiency levels are the fault of terrible PARCC tests” or “charter schools cherry-pick students” (through anonymous lotteries!).

In honor of Mental Health Awareness Month I’ve decided to come clean about my allergy to fakery. After all, if I’m advocating for honesty, I’d best start with myself.

My parents, Jerry and Emily, had three daughters. I’m the oldest, followed by Carla two years later, and then my youngest sister. Carla, I’m told, was difficult from birth, more moody and unhappy than typical babies.

When  Carla was a preteen her difficulties escalated. She was impulsive, struggled socially, experienced periods of depression, and, while very smart, struggled in school, perhaps from some undiagnosed learning disabilities. She had a wicked sense of humor but could be mean and manipulative. When she was twelve a doctor wondered if she was suicidal.

Lots of families have members with mental illness.  According to NAMI, about one in five people in the U.S. have had some degree of mental illness and one in 25 have serious disorders. I’ve had my own struggles with depression and anxiety, including an episode of clinical depression.

When the patient is a child, the adults’ management of the disease has serious implications for siblings. Think of a family as a mobile dangling over an infant’s crib. For the mobile to work properly, all the hanging items (faces, baby ducks, what have you) must be balanced. If one item is too heavy or spins out of sync, every other item is affected. Either the mobile rebalances itself through a different distribution of weight or you’re left with careening chaos.

My family spun out of control. But no one knew, not even our closest relatives, because of a tacit rule that we unquestioningly  protect the facade.  No shade on my parents: They loved us to the moon and back but struggled fiercely to weave the narrative of a balanced, normal family. The fact that my mom was a school social worker and licensed psychotherapist made it worse for her. In those days mental illness was more stigmatized than it is now; how could my mom face the world with a problem she imagined she should be able to fix?

She couldn’t fix Carla and so what was obvious remained unvocalized. We lived a life of pretense.

In the driveway of my aunt and uncle’s house Carla punched me in the stomach so hard I had the breath knocked out of me but I knew to just get up and not cry so relatives wouldn’t catch on.

My youngest sister (who bore the brunt of the damage, only 18 months younger than Carla and malignantly intertwined) hid her stellar report cards at my parents’ prompting so Carla wouldn’t feel inferior and act out.

We pretended that every week at exactly the same time my mom would take Carla shopping in order to avoid acknowledging that she was seeing a psychologist.

When Carla suffered a accident — she and my youngest sister were taking a summer woodshop class at a nearby school and her hair got caught in a lathe  — I was fiercely instructed to go to the kitchen and have lunch with her while pretending she didn’t have a bloody bald spot.

There’s a fine line between appropriate levels of privacy and pathological pretense.

Carla was eventually diagnosed, depending on whichever doctor she was seeing at the time, with some combination of schizoaffective disorder, clinical depression, bipolar disorder, borderline personality disorder, psychosis, ADHD, panic disorder, anxiety disorder. Also, she was “dual diagnosis,” which means that in addition to her current labels she was also a drug addict. (Maybe she was self-medicating at first. Who knows?)

I was the one who survived. Typically one sibling does. My solution was to leave, which I did at age 17, and rarely come back. Meanwhile, Carla’s drug addiction took center stage, especially when she got hooked on heroin. I’d see her now and then, mostly at family holidays. My husband (then boyfriend) and I drove up to SUNY Oswego to see her once. I visited her in Creedmore, a psychiatric hospital in Queens where she was undergoing electroconvulsive therapy (which didn’t work) and at various rehab units.

Carla had a sad life that ended when she died in her apartment six years ago of a heroin overdose. No one found her for three days. Her life was sad for many reasons, primarily because endless doctors and medications were unable to ameliorate her illness, but also because our family system of pretense enabled her worst tendencies and hurt those who loved her most.

I struggle to find some redeeming aspect of her life.

I can only find it in my own.

Our three older children are what we in the special needs community call “neuro-typical.” Our youngest has Fragile X Syndrome, a genetic mutation that can lead to a constellation of symptoms, including global developmental delays. Ironically, one of the reasons I wanted a fourth child was to avoid replicating the literal dynamics of my original family but we ended up replicating a different sort of dysfunction due to Jonah’s extraordinary demands of time and resources.  We’ve gotten lots of things wrong. But at least there’s no pretense. We don’t try to be “normal.” We don’t make my kids pretend that Jonah, whom we all love to the moon and back, hasn’t cheated them out of opportunities, hasn’t made our world smaller, hasn’t perpetually altered our balance, hasn’t affected them all in negative (and, they tell me, also positive) ways.

Then again, it’s easier for us than for my parents because Jonah’s problems are unambiguously traced to that damned mutation I passed on to him.  Mental illness, however, is still stigmatized, still mysterious, still subtextually associated with shame. And when the sick person is smart, it’s harder to separate intentional behavior from symptoms. Did Carla beat me up because she couldn’t control her tendency towards oppositional defiance or because she knew there would be no repercussions? Did she emotionally manipulate my sister (to the point of cruelty) as an expression of borderline personality disorder or because she was just flat-out mean?

Carla, then as now, remains a mystery to me. All I can do is learn from my parents’ mistakes and not pretend that we’re a typical family. We try really hard not to lie about hard truths. We try really hard to not cloak our differences with a false patina of normalcy. And our kids are okay. Better than okay.

We eschew pretense. We seek it out and stomp on it.

Meanwhile, I live in a state where the education system is a reeling mobile unto itself. I watch politicians and lobbyists cloak themselves in pretense by scorning the state’s PARCC assessments because they reveal unsettling truths about student learning. I watch higher-income parents, mostly white, buy their way into high-performing suburban districts while demanding a “moratorium”  on public charters in order to deny the school choice they exercise to low-income families, primarily of color. I watch the unending idolatry of local control, which allows schools to circumvent equity and accountability.

Our education system will lurch in circles until we muster the collective will to confront our self-perpetuating pretenses. Sure, it’s hard, humbling work. But, trust me, it’s better than the alternative.

What do you think?

3 Comments

  1. Pingback: What the Heck Is Going on at the DOE's Special Education Division? Or, Some (Verified) Leaks from the Inside. - NJ Left Behind

  2. Carol Greenfield-Dubin

    Such an insightful and honest piece. Thank you for this, so we can all learn from yours and think of our own experiences. Beautifully written, as always. Carol

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