Huntington's disease, also known as Huntington disease, Huntington's chorea, chorea major, sometimes abbreviated as HD, is a neurodegenerative genetic disorder that is the most common genetic cause of repetitive abnormal movements called chorea.from wikipedia
today it was revealed that someone i know is leaving their career because they have been diagnosed with hd. there is very little i can actually say about the sheer incredulity that has shrouded my head and as well as the rest of our circle.
i have some experience with terminal diagnoses and yet the remain an enigma. there is not a concrete way that i am aware of to breathe in the toxic shock and shame that the words "you have ..... and the prognosis is negative"
i feel for my friend. i am at a loss for words. i cannot begin to understand how another with transmute this truth. but i am reminded of my helplessness and my own limits. and i more easily turn to prayer.
and there is more relevance to the phrase "one day at a time"
Helpless, helpless, helpless
Baby can you hear me now?
The chains are locked
and tied across the door,
Baby, sing with me somehow.
i just love the version of today's sound choice... patti smith's helpless
2 comments:
Dear friend, I cannot think of words to say that have any real significance. I feel for your friend because I know that you feel for your friend. I think that the best that we can do for someone who is dealing head on with mortality is listen when they need to talk, hold them when they need to cry, laugh with them when they find laughter, and love them fiercely.
I hadn't heard Patti Smith's vesion of Helpless; it's beautiful. So is the video. I never saw this film, only the American remake with Nicholas Cage as the angel who fell in love with a mortal. I need to rent the original.
How heartbreaking! I wouldn't know what to say, either. My thoughts are with your friend, and with you and your circle of friends as you all grapple with this difficult news.
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