A dead car battery reminds my wife of how Huntington’s affects her
It's frustrating when your body doesn't work the way you need it to
It was 6 a.m., time for me to leave for work. I got into my car, pressed down on the brake, and hit the start button. The engine sputtered and then made no sound.
I repeated the steps, but again, there was no comforting “vroom” sound of the engine coming to life.
Sigh. I slowly realized my day would be much different from how I’d imagined it’d be.
After I called AAA to request help, I went back inside to wait. I woke up my wife, Jill, to let her know what was happening. She came downstairs and gave me an “I understand the car failed when you needed it most” hug.
Jill, who was diagnosed as gene-positive for Huntington’s disease (HD) in 2018, said some days she feels the same way about her body and mind. Ever since the diagnosis, her symptoms — including chorea, anxiety, apathy, and depression — have been progressing, so much that she knows it’s time to file for Social Security Disability Insurance.
Jill’s face was sad when she shared her frustration and anger about her body not working when she needs it to. “Problems like words disappearing in the middle of a conversation make me feel like my mind is betraying me,” she said.
The words are there. She knows she’s used them before, but she just can’t access them as she used to.
Jill feels betrayed by her emotions when she can’t control her anger. Or when she blurts out something she shouldn’t. Or when she can’t control her anxiety when she wants to leave the house.
“It’s not me,” she said. “It’s like something else is driving my emotions.”
She added, “All of that is topped off by my body deciding it doesn’t care if I want to sit still and have a conversation. It may decide I can sit down, but I’ll make weird, jerky movements. Or I can sit down for a few seconds, but then have to get back up for no reason other than my body hating me.”
Hearing Jill say “hate” was startling since she rarely uses the word, but her description of how HD has affected her gave me a deeper understanding of the day-to-day struggles she faces.
I love Jill, and I wish I could call an AAA-like organization for her HD. I wish I could just pick up the phone and request that someone come to our house and jump-start her body into a new, healthier version. I’d pay anything to see Jill “fixed.” For now, I’ll settle for loving her and, like AAA, being on call for her 24 hours a day.
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