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Showing posts from January, 2014

Alive and Well

This last year, a documentary was shown during the Seattle Film Festival.  "Alive and Well" documents the stories of 7 people, 6 of whom are living with HD or are at risk, and one researcher.  The film highlights the joy and hopefulness exhibited by those who live with the effects of this terrible disease.

During this June's Huntington's Disease International Convention, the trailer for "Alive and Well" was shown, and attendees were encouraged to talk about the film to help raise awareness about HD and the fight to find a meaningful treatment and eventually a cure.

I was so excited about this film, I wanted to know how I could see it.  In fact, I was obsessed!  Thank goodness "Alive and Well" had a Facebook page, and I got on that page begging to find a way to get the film in a theater in our neck of the woods here in Northwest Arkansas.

I won a hoodie for posting a link to their FB page.  I kept bugging them for any information about distributio…

Light in the Lone East

Lots of posts of an excerpt from the poem "The Gate of the Year" by Marie Louise Haskins go up on Facebook at the end of December and the first of January.

And I said to the man who stood at the gate of the year: "Give me a light that I may tread safely into the unknown!" And he replied: "Go out into the darkness and put your hand into the Hand of God. That shall be to you better than light and safer than a known way."
There are two more lines that don't usually show up that have made me think about a scripture and our current experience living with HD and its challenges:

So I went forth, and finding the Hand of God, trod gladly into the night And He led me toward the hills and the breaking of day in the lone East.

Kenny and I went to see Lacy yesterday and he is not feeling well.  Although I might not have been too concerned with a bit of congestion and lethargy a few years ago, these symptoms worry me now.  I worry about aspiration pneumonia, as Lacy is h…

Another Goodbye

A dear friend whom I met in college lost her battle with leukemia last week.  D was a joyful, upbeat lady.  She loved Jesus, her husband, nieces and nephews, and animals.  D was young and had that positive attitude that gave her the ability to undergo a bone marrow transplant and find blessings along the way.

I have realized that we are at "that age" - the time in our lives when we begin to lose friends and colleagues and parents.  This is a time when at every turn we are reminded of our mortality.

D's death is another goodbye in a long line of goodbyes that will continue until we say our own farewell to this life.  Each goodbye is painful, every death tears at us.

D was a great friend.  She was funny and droll.  She adored her husband, and felt so blessed to have him by her side.  Her last email in October was positive as usual.  She hoped to come home soon, but was still weak and needed to be closely monitored.  Throughout her struggle, she felt blessed that she had…