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Huntington’s Disease: Losing Karen, Part II

September 25, 2015

This post is part two of three. Read the first post, here.

 

Karen Gail Frank Stone, 1948-2005

Karen Gail Frank Stone, 1948-2005

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.

Mom and me, 1974.

Mom and me, 1974.

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.

Karen with her father and brothers, circa 1980. L to R: Gary Frank (now 69), Ben Frank (now 92), Karen Frank Stone, James Frank (died of HD sometime in the last 8 years, homeless. At the end, when he could not get enough food from panhandling on the street, he would deliberately seek arrest in order to get a meal). Two of her three children inherited Gene Frank’s HD gene.

Karen with her father and brothers, circa 1980. L to R: Gary Frank (now 69), Ben Frank (now 92), Karen Frank Stone, James Frank (died of HD sometime in the last 8 years, homeless. At the end, when he could not get enough food from panhandling on the street, he would deliberately seek arrest in order to get a meal). Two of her three children inherited Gene Frank’s HD gene.

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.

The happy family, 1983.

The happy family, 1983.

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.

Yet. 

Clickt to Tweet: Huntington’s has been called the most devastating disease known to humanity. http://tinyurl.com/ocq3n6b via @readygogetset #HDAwareness

Read the final post in this series:

Huntington’s Disease: Part III, Now You Know, What Can You Do?

Previous posts about my personal experience with HD.

On Death, Joy, and Tattoos

What Not to Pray (Unless You Really Mean It)

The Waiting: On Fear, Friendship and Snorkeling

 

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15 Comments leave one →
  1. September 25, 2015 9:36 am

    Thank you and your brother for being there and for trying to bear the unbearable with me.

  2. mtnmalou permalink
    September 25, 2015 10:40 am

    You showed God’s love in a way unlike any other family I have ever known. It was hard to pretend that everything was fine. I desperately wanted more for her, if it could be had. The one who had held me up during some of my difficult times was now the one who needed to be held, with dignity preserved, at all cost. Thank you for opening your heart and showing the under belly of your most vulnerable self, in order to help us all understand more about this horrible disease. May God grant a cure and help for all who are currently suffering…

  3. pastordt permalink
    September 25, 2015 2:31 pm

    Incredible – denial is such a powerful force sometimes. I am so sorry for all of this, Adelle. (Two of whose 3 children – your grandmother’s or your mother’s?)

    • September 25, 2015 3:00 pm

      Thank you, Diana! My grandmother was an only child, so she solely inherited from her father, who died long before he became symptomatic. My grandmother had three children, two now dead of HD. My mother, and her younger brother. The oldest is still living and appears to have missed the gene.

      • pastordt permalink
        September 25, 2015 3:02 pm

        amazing, amazing. And so sad and hard. These neurological diseases are the pits. My own mom, dear and lovely, now has pretty severe dementia, most likely Alzheimer’s. She is still beautiful and kind, thankfully. My MIL got combative, which was a total shock as she was as quiet, gentle and godly as they come. I am immensely grateful that you are free of this. Does that mean your sons are as well?

      • September 25, 2015 3:16 pm

        Thank God, yes. The gene does not exist in my DNA, therefore, it cannot skip a generation. My line is free of this hell, but sadly, my brother’s is not. One of the reasons why I’m trying to speak out. The more who know, the greater our chance for a cure.

  4. Jodi permalink
    September 25, 2015 3:09 pm

    Speechless, love you

  5. Ramona Snyder permalink
    September 25, 2015 9:15 pm

    Thank you for sharing your story. I remember this being a topic on the show “House”. The one doctor had a possibility of having Huntington’s. I had never heard of it before then but that show brought awareness to the disease. Awareness is key as so many people are unaware of the multitude of diseases out there. “House” brought awareness to my autoimmune disease Lupus. It brought awareness but most people still don’t know what it is. I”m sorry you lost your mom at such a young age. I”m sorry you had to see her suffer with this disease. I can’t imagine the hole in your heart that was left. I often wonder is it better to know you are going to die from something with a timeline or is it better to be in denial of when you’ll die. Will it change the way you live? I live each day fully because who knows what my future holds. I”m thankful for each day. Grateful for each day. Lupus and all it’s a beautiful life.

    • September 25, 2015 9:19 pm

      Ramona, thank you. I reneber reading about Lupus as a teen, but I’ve only known of one or two since who suffered from it. I know it’s extremely rare! Awareness is key.

  6. Beth Bartlett Long permalink
    January 29, 2016 6:07 am

    My daughter is 52 and getting so much worse with HD. She has problems now with walking and has trouble talking. Her movements have worsened and her anger is almost unbearable to tolerate. I feel so helpless; it’s so very hard to watch her suffer. She was such a hard worker and has a Master’s Degree in social work but no one could ever see that now. This disease is so terrible; thanks for making more people aware of it.

    • January 29, 2016 7:37 am

      I’m so, so, so sorry for your situation and having to watch your daughter suffer. I remember too well my great-grandmother watching her own daughter decline. So much pain.

  7. Ellen permalink
    February 2, 2016 6:30 pm

    So sad to read this but am glad you wrote it. It’s very eye opening to see what you and your family endured and what your beautiful mother went through!

Trackbacks

  1. Huntington’s Disease: Part III, Now You Know, What Can You Do? | Adelle Gabrielson
  2. Huntington’s Disease – Facts, Not Fiction, about the “Worst Disease Known to Mankind” Part I | Adelle Gabrielson

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