How the HD villain caused my wife to get locked out of the house
Battling the cognitive issues that accompany Huntington's disease
“Do you ever feel like Huntington’s disease [HD] is the villain in the movie of our lives?” my wife, Jill, asked me recently.
My wife and I live in a neighborhood with many trees and little light. As I arrived home after work one day last month, darkness greeted me as I backed into our long driveway. When I got out of the car, I was startled by something moving near our front door. My mind flashed to when our dog, Baby Girl, was alive. Jill would often pop out with the dog to greet me.
But this time, it was just Jill, who looked extremely tired. As I approached her, I could tell she was sad and angry. It’s rare to see Jill that way, so I knew something was wrong.
My heart stopped for a second as my brain cycled through all of the bad things that could’ve happened. Had there been a death in the family? Did Jill’s younger brother, Mark, have another seizure? Did Jill accidentally cut herself in the kitchen again?
I asked her what was wrong. Jill just looked at me and said she’d rather not talk about it. But I needed to know, so I asked her again.
“No and yes,” she responded, as she grabbed my keys to open the front door. After she unlocked it, I saw her keys sitting on a table inside.
I decided she must have locked herself out, but I didn’t want to push. I said quietly, “I’m here when you’re ready to talk.”
That’s when she asked the villain question. I took a deep breath and hugged her.
“What happened today to make you feel that way?” I asked.
“I locked myself outside when I went to get the mail,” she blurted, her voice breaking with emotion. For me, locking myself out is not a big deal. I’ve done it several times because of my ADHD.
Jill sat down and said, “This is because of Huntington’s disease. I’ve never locked myself out before. Never!” She didn’t want to tell me until I got home so that I wasn’t worried about her.
My dear wife was diagnosed as gene-positive for Huntington’s disease (HD) in 2018. In our 15 years of marriage, I’ve never seen her lock herself out. I tried to make her feel better by saying, “It’s not uncommon for people to do that. What makes you think it’s because of HD?”
She then shared a story from the first day after she passed her driver’s test. She was so excited to drive without an adult that she offered to run an errand with Mark to get some items their mom needed from the grocery store.
However, she’d left her wallet in the car and remembered it while standing in line. She handed the keys to Mark and asked him to run to the car and get it for her. When he came back, she asked him for the keys, but he’d forgotten them in the car, which was now locked.
She didn’t know what to do, and her parents were at work. They both worked an hour away, so it’d be a long time before they could pick the kids up. After Jill and Mark bought the groceries, they went back to the car, and, peering through the window, could see the keys sitting right on the front seat.
So close, yet so far.
Jill said she’d left the windows cracked while she and her brother went into the store. She borrowed a hanger from a nearby store, lowered it through the crack above the front window, picked up the keys, and was able to unlock the doors.
After that incident, Jill explained, she’s always made sure to have her keys in her hand before locking any door.
“In response to your question, yes,” I said to her. “HD is the villain in the movie of our lives,” referring to the negative effects of Huntington’s on the brain. But I added, “Remember, the villain always loses in the movies,” and then hugged her again.
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I have Huntington's disease. I found out I have the gene, the year 2000. I'm very glad Jill has a wonderful husband who's there for her, warms my heart but also brings tears to my eyes. My husband found out with me in the year 2000 I had the gene and told me he would be with me till the end of our days. He told all our friends and his family that he'd always be there for me and 3 years ago he found someone else to be with. I was blindsided and each and every day I'm still picking up the pieces along with being alone. It is scary as so many things are changing with me especially in my balance and dropping things. I'm affected more mentally I suffer from anxiety and depression and need strong sleep aids to help me sleep. I have cousins and a sister who have the Gene and are getting more progressed with symptoms. If you don't mind I'm going to use the HD villain with them when we're going through all the changes. Thank you for listening. My dream and prayers are for this disease to be wiped out for all who are suffering, like you Jill. 💞
What you shared was heartbreaking. I'm so sorry to hear that you are gene positive and that your husband has not stayed by your side. I have a family member who went through something similar in that she was diagnosed with cancer and her spouse left her. I witnessed how traumatic that was to my beloved family member, which is why I am committed with all my heart to stay with Jill. Not only is she the most amazing person I know, but she is patiently helping me become a better man, which is not an easy task as I am far from perfect. Her amazing commitment and love inspires me, and so I am beyond blessed that she is my wife. And, though I wish she didn't have Huntington's, her courage in facing it makes me realize (again and again and again) how special she is and the fact that she always remains by my side makes me the luckiest guy in the world.
I hope you get the love and care you deserve. You will be in my prayers.
I was diagnosed with HD in 2018. I removed the key locks from the doorknobs in my house, this way I need to have the key in my hand to lock the deadbolt. I learned this trick from my mothers senior apartment building. I got myself locked out a few years
back and had to get a locksmith to get me in.
Really smart idea, thank you for sharing it with us. It’s a great hack that can help a lot of people. I am sorry to hear you experienced the same problem, but I am happy to know you have handled it in such a positive way.