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Joseph E Bird

Let's talk about reading, writing and the arts.

Month

November 2018

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.

 

The Falling Man

New York, September 11, 2001.

It was journalistic instinct that pulled Richard Drew to the Twin Towers when everyone else was running away.   The veteran photographer did what he always did – take pictures.  And from the scores of photographs he took that day came the iconic image that would become known as The Falling Man.

It’s a disturbing image that is seldom published.  I know of it because of an article I came across in Esquire Magazine by Tom Junod.  Journalism at its best, even when capturing the most horrific scene you would never want to imagine.

The photograph is an anomaly, one frame of many in a sequence that shows the true horror suffered by dozens of victims forced to choose how they were to die on that sunny September morning.  The person in this particular photograph appears calm, accepting his fate.  An anomaly of a single click of the shutter.

The photograph is also an accident in symmetry.  The Falling Man is vertical, in line with the architectural lines of the Towers.  To his left, the North Tower, to his right, the South Tower.

It’s a controversial image, the discussion of which can quickly devolve into a bitter geopolitical debate.  Some think the photograph should never be published.  I understand that.  Some will say that Tom Junod’s article doesn’t tell the whole story.  Of course it doesn’t.  How you feel about the photograph, how you feel about the story, is your business.

But you will feel something.  You will feel something very strongly.

It’s the power of photographs.  It’s the power of words.

https://www.esquire.com/news-politics/a48031/the-falling-man-tom-junod/

 

Kimo

In my novel Heather Girl, there is a photographer, Avery Graham, who specializes in capturing the true essence of a person through real-life, gritty portraits.

Meet Kimo Williams, an accomplished musician, photographer, and Vietnam vet.  We like to say everyone has a story to tell, but in the case of Kimo Williams, I’m sure it’s true.  Probably many stories to tell.

Though his background is different than Avery Graham’s, their photography work is similar.  (Yes, I know Avery Graham’s photographs exist only in my imagination, but they’re very vivid to me.)

Despite being part of a brutal and horrific war, Kimo Williams was able to find beauty in Vietnam.  It’s what drew him back many years after the war had ended.  His photographs of the people of Vietnam, from his original tour of duty and his return trips, are featured in an exhibit he calls Faces of Vietnam at his studio in Shepherdstown, West Virginia.  There are lots of smiling people – kids and adults – but I’m drawn to those who aren’t smiling, those who seem to have something on their minds.  Like they know something.  Like they have a story to tell.

See for yourself.

Here’s the link to an article in the Sunday Gazette-Mail.

Here’s the link to his website, KimoPics.

Writing Tip – Slow Down

At a recent gathering of the Shelton College Review, three colleagues happened to be writing the pivotal scenes in their novels at the same time.  When submitted to the Review for critique, each scene fell short of the author’s desired emotional affect.

In each case, the advice was the same:  Take your time.  Let the scene develop.  Give the reader the nuances of what’s happening, both in the external environment, but more importantly, in what the characters are thinking and feeling.  The subsequent revisions proved the advice correct.

As the author, you’ve been building up to this moment for the entire book.  You feel it before you even write the scene. The temptation is to get right to the pivotal moment.  But the reader is probably not quite there yet and probably needs a little more time to catch up.  Slow down and embellish.  Let the reader steep in the moment and soak in the importance of what’s happening.  If you do, you’ll have a stronger emotional connection.

Ronceverte uncovered.

church 01An unusual church, perched high on a hill overlooking the small town Ronceverte, West Virginia.

IMG_0218The potential: Ronceverte’s version of New York’s High Line Park.

IMG_8198

A hundred steps to nowhere.

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