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Or at least these are new to me since the last time I visited! I haven't read them all yet, but from the introduction to each story [below] they seem to capture discussions in HD families everywhere! To read the individual stories, go to the link and click on the story title.
Stories of HOPES
Stories of HOPES
Welcome to Stories of HOPES! The short stories of this section of HOPES are fictional accounts inspired by the experiences of real families living with HD. They are not meant to be instructive or prescriptive, but to serve as artistic impressions of the social and familial impact of the disease. We have found them a useful way to stimulate discussion of HD and its implications with others. As always, we invite your comments on these stories.
- The Staff of HOPES
“Bryan’s Dad Isn’t Who Lila Remembers”
In this story, we meet Lila, a loving wife who has become concerned for the well being of her husband. She no longer recognizes him as the man she once knew. Unbeknownst to her, Lila’s husband has HD and is becoming symptomatic. Through her eyes, we may understand the complexity of the family experience when encountering the signs of HD. Ben’s change in attitude represents how HD can alter mood and behavior, causing stress in the family.
“Bryan’s Dad Wants Ordinary Back”
In this story, we learn that Bryan’s Dad is neglecting the things he once loved: his pet dog, his son’s baseball games, and his job. Ben is dealing with the onset of physical and cognitive symptoms from HD and doesn’t know it yet. He feels that he is losing the grip on his old and comfortable life. This story touches on the day-to-day stresses associated with HD symptoms at home, in the workplace, and even while driving. Ben is in denial about many of these changes, and we learn information about Ben’s family history that psychologically impacts him. This story seeks to set the symptoms of HD in a perspective outside of a text book.
“Bryan’s Dad Visits Dr. Kealy”
Lila made an appointment for her husband to visit the family physician. It is difficult for Ben to confront his feelings and the truth, but during a “physical,” Dr. Kealy’s charm and listening skills manages to open Ben up. Ben talks about the changes he has dealt with and speaks openly about his mother’s mysterious condition. Dr. Kealy tells Ben that his preliminary thoughts are that he has Huntington’s disease, but Ben should undergo genetic testing to find out for certain. Ben takes the information bravely and Dr. Kealy suggests he should talk to a patient of his who has undergone genetic testing already. Ben realizes more than ever how much his wife, and family, mean to him. This story attempts to underscore the difficulty and the necessity of coming to terms, both medically and emotionally, with the potential of an HD diagnosis.
“Bryan’s Dad Plays the Game”
In this story, Bryan’s Dad comes to the conclusion that life is a game, and no matter how bad the odds, it’s worth playing. He begins to confront his fears about having HD and decides to meet with Dr. Kealy’s patient, Trisha, to get more information about living with HD and genetic testing. They become fast friends but spend most of their conversation talking about their histories with HD. Trisha gives Ben encouragement and advice, but also raises the question in Ben’s mind if his son, Bryan, will eventually develop symptoms for HD. With notably higher spirits, Ben and Trisha plan on having a family dinner at Ben’s house, strawberries included.
“Like Father Like Son?”
Ben and Trisha’s family have dinner together and discover that support and camaraderie go deeper than their mutual concerns about HD. Although the gathering ends happily, Ben is agitated by the thought that his son, who is like him in almost every way, might eventually develop HD symptoms. Ben’s all-consuming worry causes him to shower too much attention on Bryan, who begins to guess that something is wrong. Lila encourages Ben to tell her what’s on his mind, and Ben explains his concerns for Bryan’s future and how he feels that he is to blame for Bryan’s assumed condition. Although Ben wants Bryan to get tested with him, Lila consoles her husband and explains that he was given the time to think about getting tested and that they should give their son the same freedom. Despite their mutual worry, Bryan’s parents decide to preserve their son’s childhood and to not treat their son any differently than before.
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