The Edge of Seventeen
My sister truly is a white-winged dove, much like the one Stevie Nicks sings of in her song “Edge of Seventeen”. And although her struggles began close to birth, seventeen is when things really went south. It was also when she began to learn strength and resilience far beyond what I can imagine.
Today, there is a name for the anxiety disorder that has plagued “Magg”, as we call her, since childhood: selective mutism. I had the same condition, but much milder. I was able to at least put my hand up in class or ask for help. My fear of having no friends was strong enough to drive me to talk to other kids, though I was still labeled “shy”. I hated being called “shy” for as long as I remember. In her relaxed, socially comfortable state—a state she was only ever in around me and our parents—Magg would confess to hating the “shy” label too. Yet she couldn’t talk to aunts, uncles, cousins, or even our Nanny with the same gusto I could. This created the illusion I was a show-off at times, even though I was merely being a typical little girl/teenager.
Magg is plagued with epilepsy too. Many children with selective mutism have epilepsy or migraines, and many have psychiatric conditions like obsessive compulsive disorder. My sister once knitted a scarf obsessively, to the point where it was taking up considerable space in the living room. She had to watch the show “Emergency” each night, and no one could say they liked Roy without inciting Magg’s rage. She always had to be Roy in our little “Emergency games”; others had to be John or Marco or Dixie or Chet. It got to be very annoying. She could somehow find the courage to defend her role as Roy among the neighborhood kids, something I never understood. And in between Emergency games and fury at the others who wanted to play Roy, Sis would have seizures.
Her problems didn’t stop there. A man targeted us once. We had met him the previous weekend when he was looking to buy an old car that was parked in our yard. No longer considering him a stranger because we’d met him before, we were happy to let him play with us when he showed up unexpectedly while we were playing in a nearby field. He was very friendly at first. Suddenly, he turned angry with me, calling me a loudmouth and an ugly child who no one wants to play with. The man must have figured out these were my fears while he was assessing and grooming us. I can see now it was his way of isolating my sister from me. He told her she was cute and had better toys. I ran home crying.
The man kidnapped Magg. And although he brought her back (or she was found…I am not privy to the details even to this day), the psychological damage he did was devastating and permanent. That night started a rift between my sister and I, where her life veered away from mine quite suddenly. We were never allowed to talk about it. All I knew was she was harmed, all she knew was I wasn’t (although it affected everyone in the family tremendously). Children with selective mutism are at greater risk for abduction because they appear vulnerable to predators like this man. My sister’s first real brush with death may very well have been this episode.
The epilepsy was a daily challenge through Magg’s tweens and early teens, the seizures being intense enough to warrant stays in the ICU on several occasions. Status epilepticus, which is a life-threatening chain of seizures that do not stop long enough for a person to get oxygen, was the norm for my sister. And in periods between grand mal seizures, she was plagued with petit-mal seizures. While in college, I witnessed her having ten one day.
In the middle of all of this, our father died suddenly, leaving Mom to bear poverty and my sister’s illness on her own, without her best friend and supporter. Our father was a hard working deaf man who was loving and funny and cared very deeply for my sister. I have no idea how Mom fared as well as she did over the following years. My sister cried so hard the day he died she was nearly writhing. Aunts and uncles catered to her, handling her gingerly and with great love.
I wasn’t privy to the details of the night the man took Magg, nor was I privy to the severity of her epilepsy. I am not sure if this was to protect me, her, or to keep me from being in the way. What I was left with was a vague sense of “something serious” that left me cowering in fear, or underestimating the gravity of what was happening. I was both sheltered and chastised when it came to my sister’s problems. I wanted to help, but wasn’t allowed access to her in the hospital and wasn’t given many updates. Even after I graduated from nursing school and cared for several patients with epilepsy, I was left putting pieces of the puzzle together (and still wasn’t allowed to be with her during a seizure).
When she was seventeen, my sister had a massive brain surgery done in Montreal at either McGill University or the Montreal Neurological Institute and Hospital, right before her high school graduation. She was gone for a month. I dealt with my subconscious worry by throwing huge, impressive parties with hundreds of drunken guests from all over Sydney. I was a heavy consumer of alcohol by that time and was still plagued with anxiety about not having friends. I achieved my popularity goals during that stressful time. Word on my sister’s condition was scanty and, looking back, I was in denial.
When Sis and Mom returned home, it was as if nothing happened in the house (thank God it didn’t burn down!!!) other than one cracked window from where a boy fell against it. My sister was bald, with a scar on the side of her head. I prayed she was cured of both her disease and her mutism. It was so much for her to go through.
She wasn’t. A few weeks later, while out for an evening drive, Mom and Sis drove near my sister’s high school. Mom was completely unaware it would have been graduation night, and all of Sis’s classmates were lined up in caps and gowns preparing to enter the gym. Magg freaked out. Mom immediately regretted going near the school. Magg went to school with those people her entire life, yet because of the timing of the surgery in Montreal, and because of borderline grades all year, she was unable to graduate. I was off at a party getting drunk when all this was happening, at what was an initially fun then catastrophic night from my perspective too. I had caught the boy I was in love with messing with another girl, and a boy who had been stalking me began to bother me again—things I probably would not recall if it hadn’t been for what happened to my sister the following day. I awakened, hung over, to hear the dreaded snoring breaths of status epilepticus. My sister had become so upset over the graduation that she brought on a seizure. I found out last year she might have had a stroke that day.
The scenario was repeated again after a John Denver concert. It was one of the most inspiring concerts I’ve ever attended; to this day I rank it in my top three. It drove me to pursue singing as a career. I wanted to make my living the way Denver did. I wanted to perform in that very spot someday, before all the people of my hometown. It set my life on a trajectory with success as a performer as the goal. My sister was very moved by the show too. She was all smiles afterward.
Whether it was the lights or the overstimulation of the crowd, Sis once again landed in the ICU with status epilepticus. It was so disappointing that her surgery hadn’t worked.
But graduation night was a turning point in my sister’s relationship with everyone. She strongly resented Mom for not waiting until after school was over. Her anger grew as the years passed, and she seems to have mentally become “stuck” at age seventeen. It seems to have trumped every other terrible experience she endured: the abduction, the death of our father, the surgery itself. Mom needed constant reassurance that she had made the right choice. I was, as Magg often points out, the “well child” who “didn’t have to go through anything and got to graduate with her friends”.
Over the last few decades, my sister has managed to live through a few more status epilepticus episodes, the loss of our mother, and rheumatoid arthritis. When I was diagnosed with my disease, Sis was concerned—I feel guilty for perhaps leaving her the “last one standing” while everyone else passes on—but immediately reverted to teenage mentality.
“Well it’s about time you caught SOMETHING!” she said. I spent so much time bracing myself, felt so terrible breaking the news of my shortened life span…and she says THAT?!?
My sister was merely demonstrating her resilience. I have to pat her on the back for it. Maybe she was the “well/strong child” all along and I have been the weakling. She is still selectively mute, and she is bound up with rheumatoid arthritis. As I type her story, it doesn’t even feel true, the kid’s been through so much. But she has overcome all of it. Margie Smith fights. Now I have to figure out her secrets.