Every year in early July, my thoughts turn to a friend lost too soon. My childhood friend Holly passed away in July 2006. Whenever I hear about how important it is for special needs siblings to forge connections with other siblings, her face comes to my memory. Yet I don't imagine her face as it was in the last months of her life: covered by makeup, frequently elusive. I remember that face as it was when we first met: freckled and painfully shy, yet often alight with interest.
Despite our shared experience of being older sisters to special needs younger brothers and our natural affinity for each other's company, Holly and I grew apart. After years of close friendship, we chose different paths. Perhaps, however, it's more accurate to stay that we selected different disguises. As we made the transition from middle school to high school, I chose to play the role of “the quiet girl,” the one who overachieved scholastically to overcompensate for feelings of insecurity. I strove to be the best while, simultaneously, trying to stay invisible. Case in point: As a young teenager, I kept a calendar outlining the outfits I wore to school each day (because heaven forbid that I should repeat a clothing ensemble more than once every three to four weeks). It seems silly now, but the fact is that I was terrified of being noticed. Being noticed was risky. Being noticed meant stepping out from behind the wall of invisibility I'd cultivated so carefully. The closest I came to rebellion was the night that I tiptoed into my closet at 4:00 a.m. … to finish up some homework that I'd claimed to have completed the night before. (And yes, I felt terrible—and was punished appropriately for telling a lie.) Sneaking around for the purpose of doing homework, that was me as a teenager.
Holly did the opposite; she showcased her subversive, contrarian side. Though she had a brilliant and creative mind, she was unmotivated by school work, and generally unconcerned with scholastic achievement. She was more interested in taking risks and getting noticed. Though I'd see occasional flashes of the shy, reticent pre-teen I'd originally befriended, Holly's usual teenage demeanor evolved into one of audacity and wildness. While I dressed to fit in with my peers, Holly dressed to stand out from the crowd. She wore gigantic heels, eclectic, Goth-style clothes, and bold makeup on a daily basis. To this day, whenever I see Lady Gaga in one of her famously wild getups, I think to myself, “I bet Holly would have worn that. In fact, I bet she did.” In high school, we maintained a friendly connection and talked sporadically, but the differences in our public personas both indicated and increased our sense of separation from one another. When we'd exchange Christmas cards and gifts, I'd feel the loss of our former friendship; it was a faint foreboding of a much greater loss to come. Holly chose to take dangerous risks, and ultimately, the cost of that choice was her life.
From the perspective of years, I can see the ways in which our distinct disguises were shaped by our experience of being sisters to young men with special needs. I elected invisibility and perfectionism in part because, as Willie's sister, I was excellent at apologizing and deflecting attention away from “strange” behavior. Holly elected edginess in part, I believe, as a response to her brother's needs. More than once, I heard her use her bold defiance to defend him against bully's taunts.
When Willie began struggling with self-injurious behavior and aggression, I'd bury myself in homework and sports, squelching my anxiety in activity. Perhaps I failed Holly with my striving; perhaps she let me down by disappearing into drugs when I needed her most. But the last time I saw her, I felt nothing of failure, only a sense of compassionate connection. Despite our differences, we seemed to stand in solidarity with one another. And that feeling remains with me now—a specific grace that I hold to whenever grief draws near.