The Moment of Empowerment: Thoughts from a Parent by Elizabeth Aquino The following is an essay written as part of a memoir describing the journey our family has taken since our daughter was diagnosed with epilepsy almost fourteen years ago. This particular piece describes the devastation such a diagnosis can bring, but also underscores the moment when my role as a parent became crystal clear. I knew that empowering myself with education, and the confidence that I knew what was best for my daughter, would enable her to achieve much more potential and help our family to heal. Fourteen years ago, when my daughter Sophie was diagnosed with a severe seizure disorder of unknown origin, I didn’t own a computer. When the doctor explained what was wrong with Sophie, I listened carefully but didn’t even take notes. I am a smart, organized person and I trusted that she would tell me everything I needed to know. “You shouldn’t really read anything about infantile spasms,” she advised. “It’s all very depressing.” One day after leaving the hospital, I made my way to the Barnes and Noble on Broadway and 84th Street. It was a spectacularly new and huge bookstore and had already squeezed out the more intimate and beloved independent booksellers in my neighborhood. But the immensity of the store, coupled with the bright lights and gleaming escalators was reassuring. Surely I would find some answers in these slick stacks of newness. I made my way to the children’s health section and promptly fell upon a book entitled, “Seizures and Epilepsy in Childhood,” by Dr. John Freeman. I flipped to the index and read “infantile spasms, page 109.” Turning to page 109, I crouched down on the gray carpeting to read. “Only 10 to 20 percent of children with infantile spasms will have normal mental function; the vast majority will have moderate to severe mental retardation. This is the only (their italics) seizure type where one can predict such a poor outlook.”1 I reread the lines, this time with my finger tracing the words, my lips moving—repeating the sentences over and over and over. A woman excused herself and reached around me for a book about colic. 20 Epilepsy: Insights & Strategies March 2009 On the other side of the bookshelf, toddlers raced around their strollers and nannies, city babies at play. I swallowed and continued reading, the letters black and pulsating, a perverse seduction. This was knowledge. About six months later, Sophie has already been on six drugs. Her seizures continue unabated and her development has plateaued. She is nine months old and spends much of her day moaning, which a new doctor assures us is plain irritability. A “side effect,” he says, “that you’ll have to figure out your tolerance for.” He recommends a new drug not yet approved by the FDA but available by fax through a pharmacy in London. “Wow,” I think, “Europeans are always so much more sophisticated. We’ll try it.” He writes us a prescription and gives us the fax number for the pharmacy in London. I imagine a small place on a cobble-stoned street, where the pharmacist still mixes drugs. I am in Atlanta with Sophie, visiting my parents for the Christmas holidays. The London pharmacy sends me the drug in individual foil packets. Each packet is a single dose. But, for an adult, I have to gently shake the contents onto the counter and split it in half with a knife. It doesn’t seem very accurate, so I use a credit card, like I watched cocaine users wield in college. The amount I give her could fit in a quarter teaspoon, fine white granules that appear smaller than sugar or salt. I lick my finger and place it in the powder and then gingerly on my tongue. It’s incredibly bitter so I spit it out. I have never been a drug user, so I am fascinated with the idea that such a minuscule amount can actually stop seizures. We add the drug to Sophie’s other two, a cocktail of the nonFDA-approved. And then we wait to see if it will work. On the third night, Sophie is awake all night. Screaming. She flails her hands and arches her back. She is a wreck. It goes on all night for several nights. Sometimes, she quiets unexpectedly and collapses, exhausted, in her crib. I go downstairs and walk into the dimly lit living room where my mother sits, shadowed, in an armchair. She has insomnia. I kneel down next to her, lay my head in her lap and weep. She brushes the hair back from my face and says nothing. The Moment of Empowerment Aquino When the wailing begins again, I climb the stairs and go in to Sophie. I pick her up and walk with her, clutched to my chest but unable to cry anymore. I whisper into her ear and to the air around us, “Enough. This is enough. We will stop this.” The next morning, I call the neurologist back in New York. I tell him that Sophie has been acting psychotic, if a baby can act psychotic. I tell him that her seizures have not shown any improvement and that she screams for most of the night and appears to be in great discomfort. The neurologist says very little. I say, “Do you think that maybe the two drugs that are non-FDA-approved are maybe interacting with each other? I mean, how many babies do you know on this particular combination.” There is a silence. I picture the neurologist with his hand on his chin, stroking it like Mrs. St. Andre, my third-grade math teacher, always did when she was thinking. “Hmmm,” he says, “that’s a very interesting idea.” For a second, I can’t breathe. His voice has traveled two thousand miles into my ear, but his words are black blocks in a cartoon bubble in front of me. I think, “Shit. I have a good idea. I have a bachelor’s degree in English and French literature and he is a neurologist, but I have a good idea. Shit. We are in noman’s land.” Aside from the initial diagnosis, I believe that conversation was the seminal moment for me, shaping my actions and forming who I have become. I find it unbearably difficult to describe the great loss I felt when Sophie was diagnosed with her terrible illness, but I know that in that moment on the telephone with the neurologist, I realized with stunning clarity that we were on our own in the care of our daughter and that no amount of scientific knowledge or experience would serve as comfort. In the space of a sentence, I felt, at the very least, that I was only shoulder to shoulder with the great minds of neurology. It felt like a crap shoot, and the only power I had was to stop. I stopped that particular drug and began weaning it from Sophie’s body that day. I began to look and listen for alternatives and eventually found my way to an osteopath in Southern California who worked primarily with brain-injured children. We would continue to work with traditional neurologists over the years, open to new drugs and willing to try treatments, but I would never regain a sense of trust that the land we were traversing was truly known to anyone. Today, when I get on my computer and Google any term of interest, I am far from the frightened reader in the Barnes and Noble on Broadway. The words are plucked from some noman’s land and assemble themselves on the screen in front of me, and for a while, I pretend that I have a bit more knowledge than before and that it’s so accessible, right at my fingertips. Recently, a woman contacted me regarding her six-month old baby, who had just been diagnosed with infantile spasms at a very prestigious epilepsy center. She is an educated woman who appears to be “together.” I felt as if I was talking to a person that might have been me over a decade ago. The neurologist told her NOT to talk to other parents because it would be too depressing. He did tell her to see information online about the side effects of medications and to figure out her “tolerance” for them. He gave her NO information about support, and nothing about early intervention services. I received much the same treatment over thirteen years ago when my own daughter was diagnosed with infantile spasms. I like to think that things have improved, but sadly, that’s not necessarily true. I urgently advised her to disregard the neurologist’s advice to NOT seek support, and to look for her own answers. Support systems are crucial to parenting a baby with seizures, and knowledge is power. Seeking more holistic care for my daughter became my mission in the moment when I realized the doctor did not know how to treat her. I truly believe that my daughter might be in far worse circumstances or possibly not even alive, if I had not empowered myself to act on her behalf and to seek alternatives. Elizabeth Aquino is a writer living in Los Angeles with her husband and three children. She is currently working on a memoir about raising her daughter who has a severe seizure disorder of unknown origin. Her work has been published in several magazines and newspapers, and she posts regularly at www.elizabethaquino.blogspot.com. Notes and Citations 1. Freeman, John M., Eileen P. G. Vining, Diana J. Pillas. “Seizures and Epilepsy in Childhood: A Guide for Parents.” Baltimore: The Johns Hopkins University Press, 1990. March 2009 Epilepsy: Insights & Strategies 21