Alive and Well - Just like life.

We were able to show the documentary "Alive and Well" at our local theater on Thursday night, February 27.   My thoughts on the movie - it was just like life.

Not knowing what to expect, I was excited and nervous.  I wondered where the silver lining was in all these stories of people who are living with, or at risk for, Huntington Disease.  Turns out, there isn't a silver lining.

It was a brutally honest film, which in a way was a comfort.  There were a couple of young people who had tested positive for HD in the film:  Young women who were frantically putting as much living as they could in the lives that were rapidly disappearing in the rear-view mirror.  There was the young woman who sobbed uncontrollably when she tested negative for the gene - perhaps the most gut wrenching of all since those of us who did not get that news wish we had.  A drummer whose wish was to have "just one day when I didn't feel this way."  A young woman who buried her son after he died from complications of Juvenile HD and was caregiver for her husband confessed with tears in her eyes that "the man I married is gone."

Such is the truth of HD.   It is cruel and relentless and there is nothing hopeful or comforting about its slow march of destruction.  Huntington Disease is truly "Alive and Well."

For Kenny and I and the friends we have met through our support group, the push to raise money for research, the desire to make people aware of the disease results in a hollow victory of sorts.  I find myself sadly let down after a successful walk.   The efforts we make today will not change our tomorrows.  Our loved ones will die.  A cure will be too late for them.

One of the folks who came to the movie offered his view that fundraising for HD was one of the purest acts of compassion.  To his way of thinking, all the money raised and the attention given to HD provided no relief for the activists, and so was a truly selfless act.

The movie did end on a note of hope for the future.  Research is moving forward.  There are scientists who have no connection to this disease that constantly work to find a treatment or cure.  And the story of the retired reporter, Charles Sabine, was upbeat.  His goal was to tell everyone about HD, and its effect on those who live with the disease day by day.  Although he is gene positive, he is not symptomatic.  For now, he is a voice for the voiceless.

Like the film makers we tell the stories of the people we love.  We want everyone to know how brave they are, how they hold their heads up high and keep their faith.

I am glad to have shown "Alive and Well" to the 25 people who showed up for the screening.  It wasn't pretty.  It was raw and painful and real.   Just like life.

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