Huntington’s Disease: Losing Karen, Part II
This post is part two of three. Read the first post, here.
I always knew my mother could inherit the same illness.
Hope and faith come easily to children, and with a childlike determination, I hoped and believed that she would be spared. I was certain she would be spared.
It was the day before my graduation from Pepperdine University that I realized my mother was dying.
My senior year was hectic, and it had been months since I last saw her. My parents pulled into the parking lot of my college apartment, and I rushed out to embrace them both.
Over the next twenty-four hours I noticed the changes. The telltale markers were no longer hints of unanswered questions; the signs were prominent. Holding hands with her in prayer at convocation, her fingers spasmed in my palm. Facial tics and twitches. A bobbing gait. Balance always a little off.
I moved home with my parents after graduation to work and save awhile, but the gentle, serene mother I grew up with had become paranoid and obsessive. Jealous and spendy. Preoccupied with her appearance, she bought makeup and creams from department store counters she’d never glanced at before. She ordered clothes from catalogs in multiples, more than she needed or wanted.
She once arrived at my office overdressed for lunch, unbalanced in her heels, her makeup smeared. Her fingers bit into my arm as she held on to me and her former life. Gold chains slapped against her neck — too many, a gaudy amplification of the person she once had been.
Once nurturing and supportive, she became angry and possessive, clutching, frantically on to me and our crumbling relationship.
We were not allowed to discuss her illness or even make mention of it at all. Ever. Not to her, to each other. Not to anyone.
I tried to be the good daughter. I tried to play her game, pretending nothing was amiss. Dad, my brother and I did what we could to preserve the fragile balance in her world, going to great lengths not to cross her or give her any reason to become hostile and angry. Like the shamed enablers of an addict, we covered up her mistakes and brushed off her balance issues, soldiering through church and other public events with smiles plastered on like nothing was wrong. It was all a comical charade. We couldn’t talk about what was painfully obvious to everyone else. She wouldn’t let us.
Huntington’s has been called the most devastating disease known to humanity.
Some patients endure primarily physical degeneration and dementia. Others, like my mother, suffer from mental illness — paranoia, schizophrenia — while also enduring the spasmodic muscle contractions called chorea, that twist the face and hands, constantly affecting balance and the victim’s ability to move.
My father, my brother and I walked around like the living dead, alive but not.
Trying to keep what life we had as normal as possible. But nothing was at all normal, nothing was the same. Through it all, our church and community loved her and us as best they could. Not every gesture of sympathy and support was perfect, but our family knew that we were loved.
Mom’s life ended abruptly with a sudden cardiac arrest one August day, just a year after she was entombed against her will in a convalescent hospital.
She was 57 years old.
Over the course of the next week I’m going to be sharing pieces of a longer essay I wrote about our family’s personal experience with HD. They are not cheerful posts. There will be no funny stories of boys and their shenanigans. But they are important stories, stories that must be told. For those who do not know, and should. For those who know, and cannot speak them for themselves. For those whose story has not yet begun, but will, because there is no cure for HD.
Read the final post in this series:
Previous posts about my personal experience with HD.
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