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Sunday, Apr 22, 2018
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To know or not to know

Sufferers, caregivers and children of those affected by early-onset Alzheimer's disease (EOAD) share hardships unlike those of late onset. Yes, losing someone in this way is always difficult, but it's a difficulty not many of us face while we're still young. Who can really understand what it's like to be the daughter of a 50-year-old man who is tucked into bed at night by his 10-year-old daughter? And who can really know what a 50-year-old man feels as he is tucked into bed by his 10-year-old daughter? Young children of sufferers deal with this disease much differently than their adult counterparts. Anger, despair and confusion are the feelings of caregivers. And yet, as children, our feelings are often paired with even darker emotions — one of which is the feeling that weighs heavier and more piercing than the rest — the feeling of fear. Will I be next? Will my siblings?
Genetic testing can offer a glimpse into the future for children of EOAD patients like my sisters and me. According to the National Institute of Aging, most cases of EOAD are familial, or genetic. If my father did, in fact, have a mutated gene, which was responsible for the development of his EOAD, then my sisters and I would have a 50 percent chance of developing the disease as well. Will any of us take this test in the future? It would certainly erase any mystery we might have of developing the disease later in life. But do I want to know? Will solving that mystery make me any less fearful? Perhaps that is why I became obsessed with psychics a year after my father passed away. I could not stop reading one psychic's book that dealt with dying and claimed to know what it was really like when you died. She also gave hope that it was possible to speak to your dead loved ones — through her, of course. I bought a book of hers, and I was hooked. She would help me make peace with losing my father. Maybe she'd even tell me how my future looked. For some reason, I was sure of it. My mother knew of my fascination with this psychic, who often frequented the Montel Williams Show, and it just so happened that my mother was at an auction where tickets to the show were up for bids. And it just so happened she won two. I was so eager and so happy and so hopeful! I would be able to communicate with my father — or at least know how he really felt back then, during the years he couldn't speak to us any longer. Perhaps I could even have a bit of closure and be able to ask that dreaded question: Are my sisters or I next? Before taping, I was selected from the audience to ask the psychic a question. I almost passed out from anticipation as I waited for Montel to point at me and give me the chance to stand. But what I heard meant nothing to me. In response to my question of whether or not my dad had anything to say, the answers were, without a doubt, empty of any inkling of my father. "He felt you all near him," were the first words I remember hearing. Then: "He was met by a little boy with a mark on his face" was the steady mantra she kept repeating. As I was listened to her, realizing she was not going to give me what I wanted and what I thought I needed, I looked down at my mother, who quickly stood up. "Oh yeah, I think it was his uncle …" And then we sat down while I cried the rest of the taping. I was later edited out. Today, six years and zero stints with speaking to celebrity psychics later, it seems I can finally get at least one of my questions answered. Genetic testing affords me the possibility to sit as my father had years before, and hear my fate read to me from the other side of a desk in a doctor's office. Though I could opt to have this knowledge, I choose not to. I do not want to know if the disease will affect me. I will instead live the life my father showed me how to live, mainly in the ways of protecting myself financially should anything ever arise in the future. I need to save for that "rainy day," as though perhaps a torrential downpour could fall at any moment. In so doing, I know that even if I can't ever hear his voice again, I will feel it. In the peace I've found since losing my father to that terrible illness, I realize there will always remain that fear I've had since the day he began to stutter. It was, of course, a fear of losing him that settled first. Now that he is gone, I know life will continue regardless of any pain that was suffered beforehand. I cannot control how I will live or how I will die — nor can I do the same for my sisters. What we can do is laugh, cry, scream from the top of our lungs and hang up on each other when we start to bicker. Though the fear of one day developing EOAD is not a feeling I will every fully come to grips with, it will be a feeling I can learn to manage. I will not sit with my legs nervously shaking, my fingers deftly picking the same small section of my thumb — its sting I can already imagine — listening for the moment when my life as I know it will come screeching to a halt. I know that knowing or not knowing will not bring me any more peace than what I've already found in not knowing.

Stefania Silvestri is the recipient of Emerson College's 2011 Dean's Award for Best Thesis for "Beside the Mountain" and has participated in numerous charity events for the Alzheimer's Association. When she was 14, her father was diagnosed with dementia and she and her sisters and mother became his caregivers. She is an academic English instructor at Kings Colleges.
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