ysobel: (me)
[personal profile] ysobel
Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:



The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)
wychwood: man reading a book and about to walk off a cliff (gen - the student)
[personal profile] wychwood
55. The Interior Life, Dorothy J Heydt - DON'T JUDGE


56. The House of Shattered Wings - Aliette de Bodard ) Ultimately too dark for me, and for the plot to work for me, but I'm not giving up on de Bodard. This series, maybe.


57. The Young Stepmother and 59. The Carbonels - Charlotte M Yonge ) The Carbonels is not great, but The Young Stepmother is solid (for values of Charlotte Yonge).


58. Mortal Engines - Philip Reeve ) I've read worse; SFF-minded children might enjoy it, and there's definitely worse out there.


60. A Closed and Common Orbit - Becky Chambers ) Like the first one; entertaining, sometimes interesting, would probably read more, but I was not blown away.


61. The Art of Deception - Nora Roberts ) An acceptable-enough Harlequin, if you can get past the standard "consent is UNMANLY" elements.


62. Green Rider - Kristen Britain ) A solid fantasy - I want to read the rest of the series, now.


63. Too Like the Lightning - Ada Palmer ) A nasty unpleasant piece of work, with some potentially interesting ideas and worldbuilding that couldn't sustain my enjoyment in the face of the rest of it.


64. All the Birds in the Sky - Charlie Jane Anders ) Ultimately a bit unmemorable, although I enjoyed it well enough in the reading.


65. Words are My Matter - Ursula Le Guin ) Somewhat insubstantial, unfortunately.


66. The Geek Feminist Revolution - Kameron Hurley ) A much better collection - I like Hurley's nonfic much more than her novels!


67. Black Panther: A Nation Under Our Feet - Ta-Nehisi Coates and Brian Stelfreeze ) Definitely not your typical superhero comic, even your typical thoughtful superhero comic; I'm interested to see where they take this.


Four Mantlemass books - Barbara Willard ) Classic English children's books, and still well worth reading. I should make sure I get hold of the others.

Music meme and gaming

Jun. 26th, 2017 08:00 pm
liv: alternating calligraphed and modern letters (letters)
[personal profile] liv
Day 9 of the (in my case very slow-running) music meme asks for a song that makes you happy. And I have quite a lot of those, making me happy is a big reason I have a music collection at all. I think I'm going to go for Complex person by The Pretenders. The lyrics are not all that cheerful in some ways, but I love the bouncy tune and I always hear this as a song about determination and not letting things get you down.

video embed, actually audio only )

Also I've had a good week for playing games: mostly list with short comments )

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invisionary: "When I give food to the poor, they call me a saint.  When I ask why the poor have no food they call me a communist." (Default)
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