It’s not an easy topic to talk about, but more awareness is needed concerning Huntington’s disease. Like ALS (amyotrophic lateral sclerosis), it’s a degenerative neurological disorder that offers no cure. It is fatal, and writer Emily Rekstis fears she or her sister could be next. Their father, Fred, developed the disease and passed away right before marking his 58th birthday. Her dad’s death has been tough to get over, but Emily is trying to live her best life and embracing it all regardless of how long her own time on earth might be.
Huntington’s disease is cruel to the human body. Some of its characteristics include uncontrolled movement of the arms, legs, head, face and upper body. The disorder attacks the brain, making it difficult to think and reason and can cause progressive dementia, depression and other features.
If one has a parent who suffers from Huntington’s disease, then, there are even odds of getting it. The Washington Post reports that these children have a 50-50 chance of developing it themselves.
For Emily, thinking about her Dad’s death has really made her mourn her own. There is a genetic test she can take that would reveal her chances of getting the disease, but Emily refuses to undergo testing. She believes that if tested and she does not have the gene that causes Huntington’s, she fears she would stress out over the possibility that her sister could develop it. On the other hand, if testing showed that Emily inherited the gene, she would be speeding against a ticking time bomb.
Her family has witnessed the brutal aspects of Huntington’s disease up close and how it robbed her father of a full life. She cannot help but mourn the man she lovingly remembers on her social media page at Instagram. There, she shares photos of his earlier years cradling her as an infant and spending happy days with his daughters.
Emily recounts that Fred couldn’t carry a tune but sweetly sang them nightly lullabies. Shortly before she graduated from high school, she and her family had learned about the cruel fate that would follow her father.
Swallowing becomes a challenge for those with Huntington’s disease, and he was brought to an assisted care facility to live.
Watching a loved one die makes one think about their own mortality, and Emily was no different. At one point, she began wondering if her accomplishments as a magazine writer and traveler would be useless to enjoy if the same fate were knocking on her doorstep.
Emily Rekstis, however, is now bravely facing her future and learning to define life the way her father so courageously did. Finding a balance, knowing what’s important, fulfilling one’s passion and taking on risk are all ways that people can exemplify life’s personal journey. Her dad’s death made her mourn her own, but Emily sees the bigger picture. She knows that the future is not guaranteed for anyone. It’s all about living in the moment.
