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My History with Huntington’s Disease: Writing From The Inside Out

May 2, 2017

Mom and me, spring of 1992, my sophomore year of college. Her decline had already begun, and this is one of the last “normal” photos I have of her.

As you probably already know, May is Mental Health Awareness Month.

I took this opportunity to rip out my own guts and wear them on the outside for a while, and I wrote about my mother’s decline into mental illness as she began to succumb to Huntington’s Disease.

To say I feel a bit exposed is a understatment. But, this illness, this horror, it needs to be brought out into the light. The world needs to know. The suffering has to stop. There are so many people still at risk. Some of them I love.

This post, The Story Of An Enabler, is running on the Redbud Post website this month. I hope you’ll take the time to read it. Take the time to share it. Take them time to spread the word.

The suffering has to stop.

 

An enabler is a person who encourages or enables self-destructive behavior in another. So often we think of enablers in terms of addicts and alcoholics or the mom who keeps feeding her 700-pound, bedridden son. People who keep hidden what everyone else can already see. We think of them with derision and judgment, as if they had a choice in their actions.

Perhaps, though, we, the enablers, are creatures just as broken and bereft as the individuals we try to protect. Desperate victims in a dark-shrouded world, who cannot see a way out of the darkness.

The beginning was subtle. She began to worry about strange things. She became convinced that odors of any kind would make her sick and refused to allow any cleaning products in our home—she even demanded that hotels we visited not clean our room with anything but water. If she encountered any kind of construction work or gardeners, she would flee immediately, running home to lock the house and close the windows lest the smells or the dust make her sick. Or worse, she would approach the crew and demand they stop their work, regardless of the circumstances or employer.

Late one night when I was a junior in college, she called, whispering into the phone that my dad had just tried to kill her…

Read More

 

If you’d like to read more about HD, or about my history with Huntington’s Disease:

My Story: Why I Write

On Death, Joy, and Tattoos

What Not to Pray (Unless You Really Mean It)

The Waiting: On Fear, Friendship and Snorkeling

Friday FAQ: Life After Huntington’s Disease

On Belonging, Friendship and Surviving Renae’s Hikes

Pray for a cure.

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The conversation continues!  See the boymom life in full Technicolor.  Join me over on Instagram.

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One Comment leave one →
  1. Sheryl Pasquinelli permalink
    May 4, 2017 7:32 pm

    Adelle,
    Thank you for sharing your story. I had no idea. My mother-in-law had Parkinson’s with dementia and we experienced a little of what you described before her death.
    Blessings to you,
    Sheryl

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