My Wife Worries About Only Being Remembered as Her ‘HD Self’
Personality changes are a concern for many people with Huntington's disease
Recently, my wife, Jill, and I were talking about a book I was reading. She commented that I don’t just read books, I devour them. As the conversation continued, we started talking about how both of our fathers liked to read as well.
Jill’s dad passed away in 2011 from complications related to Huntington’s disease (HD), but she has fond memories of him explaining his love for “Don Quixote,” an epic novel by Miguel de Cervantes. The book details the adventures of a delusional Spaniard who believes he’s a knight and fights injustice through chivalry. He spends his time fighting imaginary foes, which is where the phrase “tilting at windmills” comes from; he jousts (or “tilts”) at windmills that he believes are giants.
As Jill recounted the memory, she started to get emotional. I asked her why she was crying, and she told me that her dad was affected by Huntington’s for so long that it felt weird to think about him before that time — weird, but nice. And then she smiled at the memory.
But her smile was short-lived, as she realized that she, too, may one day only be remembered as her “HD self.” Because of her family’s history with Huntington’s, she knows it’s a cruel disease in many ways, including how it can severely alter someone’s personality, at times causing them to become angry, paranoid, or even violent.
I held her hand when she told me that she hopes our daughter and I remember the way she is now, before HD starts severely devastating her mind and body.
When she finished talking, I hugged her and told her that as long as I’m alive, I will never forget our life before HD. I won’t forget how she doesn’t laugh at my bad dad jokes — something I’ve never understood, as they’re all hilarious — and the way she smiles when she’s with family. The way she treats her loved ones. The way her mind works like a supercomputer. The way she loves to cook, and a million other things that make her the wonderful woman I fell in love with.
I reminded her that I often make mental videos of our lives because I don’t want to forget any moment where I experience her love or any of the times we share together. I hope researchers will develop a cure before her HD causes any major personality shifts, but if not, my memories of her will still be positive, because Jill is just that awesome.
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It's a weird thing to be grateful for having one's life affected by HD, but I realize that otherwise I would not have become familiar with this author. I always look forward to the next thing he has to say about his family. He is truly a loving man.
Thank you, Ken, for your kind words. I appreciate you sharing your thoughts with unexpected gratefulness. Some days we need a reminder that sometimes the thing in our life that we think of as negative, can get us to a better place. I am touched by your opinion of me and I hope to live up to your expectations in the future!
PLEASE make actual videos NOW of those special "mental videos" that you always want to remember! When life changes, gets difficult (or just the passage of time) those great memories will fade as human memory replaces old with new. Actual videos of happy times will be priceless to share during hard times, and help to restore the warm feelings from yesterday. Videos also reassure and guarantee that the person can never be lost, always there to remind them and you of the history you share. Don't wait; make videos!
Thank you for sharing your very wise advice. We are all very lucky to have the ability to make those videos so easily. You are right, watching those videos are a great way to remember the good times, and hopefully, we all have many more to come!
Please pass on to ‘Jill that she left some good memories with her memory. My dad was a huge fan of that book. And it was made into a movie in the 70s and we went to see it together. I was may be 15. I have a picture that was painted that my dad purchased staging in my bedroom. It was a picture of Don Quijote. It has sung in my bedroom for 28 years. And I feel just the way she does. What will they remember
Thank you, Kathy, for sharing your story with us. Jill says she is lucky for the great memories she has of her father and has made it her mission to make every moment a memorable moment with her loved ones.