Saturday, August 24, 2019

DANCING AT THE VATICAN

BRENDA LARA
From Buenos Aires. At 15 years of age, Brendae suffers from Juvenile Huntington’s (JHD). She lost her Father to HD on her last birthday after her Mother had left, unable to cope. She’s been cared for by her aunt Norma Lara ever since.

The subject of this week's arts and culture column is a documentary that addresses an especially cruel illness: Huntington's Disease.

Here's how the piece begins:

“Dancing at the Vatican,” a 38-minute documentary directed by Brian Moore and produced by Amanda Spencer, showcases the plight of those suffering from Huntington’s disease (HD), a progressive neurological disorder. A parent with HD has a 50/50 chance of passing it on to his or her offspring.

The film is narrated by Emmy award-winning former NBC-TV foreign correspondent Charles Sabine, an asymptomatic HD carrier whose two beautiful young daughters accompany him to Rome.

HD causes progressive degeneration of nerve cells in the brain. Its symptoms include uncontrolled movements (the accompanying jerking and twitching is known as chorea), emotional problems, and loss of cognition. The disorder is genetic and it is fatal.

HD can strike anyone and anywhere: Folk singer Woody Guthrie purportedly died of it. But in an even crueler twist of fate, it concentrates in certain places around the globe, and they are mostly poor.

Barranquitas, Venezuela, in the Lake Maracaibo region, is one such place. Chile and Peru also have dense clusters of HD. Dilia Oviedo Guillén, from a village in Colombia, watched her husband and five children die of the disease. She now devotes her life, 24 hours a day, to nursing four more adult children who suffer from HD.

READ THE WHOLE PIECE HERE.

5 comments:

  1. My best friend's father and grandmother died of HD in Finland. She was just married when the family found out that it was HD - and that she had 50/50 chance of also having it. She was advised to get a gene test, and if it was to be positive, she could choose to have children through in-vitro fertilization, where her fertilized eggs could be tested and only healthy ones be be then implanted in her womb.

    She refused both. She is in her forties now, with three beautiful, healthy children. She might have HD, or then not. But, like she says, you never know how your life will be anyway, or how it will end.

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    1. Beautiful, Hanna. Culturally we are so at pains to avoid suffering and imperfection that we instead have created a truly horrifying alternate "universe"...to see someone go down on bended knee and say, as your friend did, "Be it done unto me according to Thy word" is a beacon to the rest of us...thanks for letting us know of her.

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  2. I just tried to post a comment from my phone to this piece, but as sometimes happens, it didn't go through due to some de-fault between my phone, the www and your blog. So i'll try again, and if you don't see it soon you will know there are electric shenanigans...! Hope this and the next go through...

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  3. In the Fall and Spring of '89-90 i was in Innsbruck for a year as a visiting student to the Canisianum seminary there, a Jesuit one, and on the liberal spectrum of Catholic philosophy and theology. Shortly after arriving with two other American students, we began to notice that the discipline was extremely lax, to say the least. There were off-color jokes of a sexual nature that were both heterosexual and homosexual, and it wore upon us. And these weren't merely words and jokes, but practices. As time went by i would drink and travel more to escape the fetid atmosphere of that place, eventually becoming agnostic. I did have to return at least for tests and what not, and often during these times my friends and i would play ping pong with the Hungarian seminarians who were well balanced and a blast to hang out with, -and they had the straightest slams you could imagine when one or the other decided to teach us proud American a lesson. I have joyful memories, at least, of these moments and times of reprieve.
    And none of us understood these types of jokes we'd hear...not at all given the context. As time went by, and my agnosticism hardened via the likes of Camus, Russell, Nietszche, and Sartre, (is that how you spell those?) i drifted into a state of melancholy that was beyond words.
    But then something strange and wonderful happened. As i was sitting at one of the common tables for dinner across from an older woman who cleaned the place, and with whom my friends and i used to say the rosary, there was a fantastic miracle that was purely internal and silent between she and i, and my agnosticism ceased within the hour. She gave me chocolate (although it was lent) and told me that God wanted me to enjoy it, even though she mysteriously knew that i always gave up chocolate for lent, and was again a believer in God's love.
    I have since come to see with the passing of years and news and time that God really is in charge, and He is still the God of both Justice and Mercy. And it is still the Mercy i now get with every fibre of my longings. I have come to understand and cherish this good God, my God..., ...-our God!; but for the life of me i still do not get the jokes, and still have a rising anger for justice simmering beneath my skin.
    And i still pray and beg for justice and Mercy, and will continue to do so until my last breath

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    1. The older woman with the chocolate reminded me of this wonderful essay by Joe Hoover, SJ: "A Figure in Black and Gray." https://www.thesunmagazine.org/issues/411/a-figure-in-black-and-gray
      Cheers, Dave!

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