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 12 a doctor wondered if she was suicidal. Our family’s story is not unique. According to
NAMI, about 1 in 5 people in the U.S. have had some degree of mental illness and 1 in 25 have serious disorders. When a mentally ill family member 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 animals, stars) 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: [pullquote]They loved us to the moon and back and struggled fiercely to weave the narrative of a balanced, normal family.[/pullquote] The fact that my mom was a school social worker 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. What was obvious was never discussed. We lived a life of pretense. Every week at exactly the same time, we pretended my mom would take Carla shopping in order to avoid acknowledging that she was seeing a psychologist. My youngest sister hid her stellar report cards at my parents’ prompting so Carla wouldn’t feel inferior and act out. 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. When Carla suffered an 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.
I Survived By Not Pretending
When the family mobile spins out of control, one sibling usually survives. Although I have had my own struggles with depression and anxiety, I was our family’s survivor. My solution was to leave, which I did at age 17, and rarely come back. Meanwhile, depending on whichever doctor Carla was seeing at the time, she was diagnosed 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 mental health labels she was also a drug addict. Eventually, 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 then-boyfriend, now-husband and I drove up to SUNY Oswego to see her once. I visited her at various rehab units and also in Creedmore, a psychiatric hospital in Queens where she was undergoing electroconvulsive therapy (which didn’t work). 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 [pullquote position="right"]our family system of pretense enabled her worst tendencies and hurt those who loved her most.[/pullquote] 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.”
Jonah, 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 other 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 [pullquote position="left"]when the sick person is smart, it’s harder to separate intentional behavior from symptoms.[/pullquote] 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 my husband and I are raising a typical family. We try really hard not to lie about hard truths. We try really hard not to cloak our differences with a false patina of normalcy. And our kids are OK. Better than OK. We eschew pretense. We seek it out and stomp on it.
Until We Confront Our Collective Pretenses About Education, Kids Will Keep Getting Hurt
I think that allergy to pretense explains why I react so strongly to educationally tinged charades, particularly in my home state of New Jersey—which is a reeling mobile unto itself, unbalanced by the destabilizing winds of adult-centric gamesmanship. I watch politicians and lobbyists cloak themselves in artifice by
scorning the state’s standardized test scores because they reveal unsettling truths about student learning. I watch higher-income parents, mostly White, demand a
“moratorium” on public charter schools serving mostly low-income families of color, while they simultaneously buy their own way into high-performing suburban districts without any awareness that it’s also “school choice.” I watch the unending
idolatry of local control, which allows schools to circumvent equity and accountability. Why do I break out in hives? Because I know that children are victimized when adults, keen to evade troubling truths, allow the mobile to spin in vertiginous gyrations. Our education system will lurch 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.
An original version of this appeared on NJ Left Behind as "My Sister Carla: A Personal Story About Mental Illness."