The first time I met Jill’s father was interesting. I hadn’t met someone with Huntington’s before, but Jill had told me all about it. Huntington’s was a movement disorder, and she had a 50 percent chance of inheriting it.
I researched Huntington’s before meeting Jill’s father, but seeing the disorder in person for the first time was a bit of a shock. Calling Huntington’s a movement disorder felt like an understatement. Jill’s father moved constantly. He made noises, and his gait was herky-jerky. But the thing I took away from that meeting was that Jill’s family didn’t react to any of it.
His chair creaked every time he sat too far forward. He cleared his throat and made odd, loud noises, or would randomly get up and walk uneasily around the room. Nothing affected Jill’s family. They continued to talk as if they didn’t notice his actions. Huntington’s was their normal.
Some time later, I went out to dinner with Jill’s family. They were calm and relaxed. They enjoyed their time together, even though Jill’s father was behaving in a manner that society would consider abnormal. Later that day, I asked Jill whether her father’s movements ever embarrassed her family. Her answer was simple: “Why blend in when you were born to stand out?”
It was a funny answer, but the meaning was deep. Jill’s family didn’t care about his frequent twitching or noises. They loved him unconditionally and were OK with the world seeing him the way he was.
He was who he was. If the world didn’t like that, it could stuff it.
Her family even found black humor in the situation. Jill’s father used to hunt and owned several guns. He used to joke that if any of Jill’s partners ended up hurting her, he would shoot them … and get away with it. He’d say, “Who could prosecute the guy with Huntington’s who says, ‘I didn’t mean to shoot him, officer. I was just cleaning my gun, and my finger twitched?'”
Jill hasn’t experienced any major movements yet, but if she does, God help the person who hurts our daughter.
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