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Joseph E Bird

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Huntington’s Disease

i touched her hand

Heather dropped by today.

I make it sound like it’s no big deal, but she drove two hundred miles. She’s on her way to Texas to fetch the old man and I’m in the general direction of heading south, but she had to veer a little east and tack on another couple of hours of driving time, so it’s something, even if it’s not a big deal.

She’s looking a little rough. Tired. She’s wrinkled around the eyes and her hair has lost its fire. But look at me. A little more belly than I ought to have and my whiskers come in with more grey than brown, and who am I to talk about hair? Then again, I’ve got twelve years on her.

She pulled into the driveway mid-afternoon. I’d been to the store that morning and picked up a couple of steaks, among other things, not because I was expecting company, but they sell them by the pair and that would take care of two meals for the week. So here comes Heather and I grab the steaks from the fridge and act like I’m Emeril and douse the steaks in olive oil and sprinkle on some salt and grind a little pepper and I can tell she’s digging this man-at-home-in-the-kitchen act. But it’s no act. I don’t have much of a choice if I don’t want to eat out every night. I scrub a couple of potatoes and wrap them in wax paper and put them in the microwave. I offer her an iced tea.

Tea?

Yeah.

That’s all that needs to be said. In the old days we would have shared a few beers. She’s probably a wine drinker now. I’m sober and aim to stay that way. Maybe if I’d quit ten years ago, things would be different.

I drop the steaks in the skillet and they sizzle and pop and release a faint cloud of steam that fills the room with the primal smell of meat on a fire and as I look at Heather sitting at the counter sipping her tea, I imagine we’re on the roof of that building on Westwood with the sun setting across the bay behind us. Me grilling and Heather reading a book, and I wish I had a beer. Funny how smells can throw you back in time.

Remember Westwood?

She smiles.

And she’s twenty years younger and her eyes look softer and her hair is smoother. I’m still in my thirties. And I really wish I had a beer. I’d give it all up, start over, just to go back in time with Heather.

He’s staying with Owen, she says.

Abrupt change of subject. She’s not interested in the way we were. Smart woman.

She’s talking about the old man. He’s been paroled. Going to stay with her brother, apparently.

How’s Owen feel about that?

They wouldn’t be letting him out if he hadn’t agreed to it. He’s an idiot.

I decide not to argue with her.

The boys have moved out of her house. Robbie’s got a family of his own. Micah’s finishing up school. I think, anyway. Don’t hear much from him. Don’t hear much from any of them.

Which is why Heather dropping by was as big a surprise as they come.  Good surprise, though.

The old man killed her mother. Mercy killing, though the judge didn’t see it that way, or if he did, he didn’t give a crap. She was suffering bad. Huntington’s disease. Now they’re letting him go.

Like I said, I’m older than Heather. She was a kid when we met. We ran off to San Francisco doing dope and drinking all the time. Then here comes Robbie. So we got married and tried to act like family, but we were still partying. When Micah was born we left California and moved back to West Virginia. Heather straightened up and I tried, but my roots were deeper than hers. It took me a while. She ditched me and I moved to Charlotte. And there you go.

I think Heather has Huntington’s. She’s never come out and told me but I can put the pieces together. Her hand was all trembly. Her right hand. Or maybe it was her left. And she looked so tired. I reached across the table and touched her. She drew back. I guess she thought I was making a move. She doesn’t know how much I still care about her. She told me she was seeing a photographer, but I don’t believe her. She’s driving to Texas. Alone. That’s why I touched her hand. She’s alone. I’m alone. I needed to feel her skin, feel her warmth. She needed the same thing. I know her better than she knows herself, even though we’ve been apart for so long. And I know we’ll never be together again. But she’s still my Heather girl.


copyright 2020, joseph e bird

Huntington’s Disease

It’s been described as having ALS (Lou Gehrig’s disease), Parkinson’s, and Alzheimer’s simultaneously.  There is no cure and the disease is fatal.

According to the Huntington’s Disease Society of America, there are currently 30,000 symptomatic Americans.  That’s less than 0.01 percent of the population.  But if you or a loved-one has Huntington’s, that’s a meaningless statistic.

My family has no first-hand experience with Huntington’s.  The wife of a former associate pastor at our church was my introduction to the illness.  When they came to our church, she was in the middle-to-late stages of the disease.  She was still able to walk and engage in conversation, though it was sometimes difficult to understand what she was saying.  Her symptoms at the time included chorea – involuntary and unpredictable body movements that affected her upper body, arms, and face.  Over the course of a few short years, her symptoms worsened.  Soon she was unable to walk and required a wheelchair.  Then a nursing home.  After a year or so there, she passed away peacefully.

She was fortunate in that she had a husband who loved her unconditionally and was by her side until the end.  I don’t really know what his life was like as the primary caregiver, but I have no doubt that it was unimaginably challenging on so many levels.  He leaned on his faith, as did she, with the knowledge that though in this life she was broken, in the next she would be made whole.

In my novel Heather Girl, Heather Roth has Huntington’s Disease.  I didn’t start out to write a novel about someone with Huntington’s.  My intent was to tell the story of a young woman with challenges, one of which was how she was dealing with a serious health issue.  As the story unfolded, I learned that Heather’s mother had Huntington’s.  It’s hereditary.  If one of your parent’s had Huntington’s, there’s a 50-50 chance that you will have it. As my story begins, Heather is becoming symptomatic.  And she knows where it leads.  There are other complications in her life and because her family is fractured, she doesn’t have the best support system.  She doesn’t always act reasonably and her decisions are not always the best.  But this story is fiction.

In real life, the effects of Huntington’s, like the disease itself, are varied.  Some, like the wife of our pastor, have love and support all the way.  For others, it’s a long, lonely journey.  If you know a family living with Huntington’s, you can be a friend.  Little things can help.  A Frosty from Wendy’s is always a treat and good for those with difficulty swallowing.  A bowl of soup for caregivers on a cold, winter’s day will mean more than you realize.  And a sympathetic ear is always appreciated.

Even if you have perfect health – and nobody I know has perfect health – life can be hard.  Be a friend, lend a hand, and help someone find hope in the compassion that we can all offer.

 

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