Monday, December 9, 2013

I blog therefore I am

It's gray and overcast in the city today, the trees bare of leaves, everything leached of color. Last night it snowed, then rained and now the ground is a crust of ice. In our house, my son is quiet and pensive I wonder what he is working out in his mind. I can never quite get used to how unknowable our children can be at certain moments. There are times when they share what feels to me like their whole hearts, and times when they shut me out completely. This is no doubt normal but I don't have to like it.

In other news my niece is on the mend, responding well to treatments. She may well go home from the hospital this week. She has been there since before Thanksgiving. Her mother reports she is coming back to herself. Her mother is weak with relief, finally allowing herself to admit the terror she held at bay as she fought to get her daughter the tests and treatments she needed. There is a whole story there that I am not at liberty to tell fully. But I wonder how many people have been locked away in psychiatric wards when in fact their apparent psychosis was due to an underlying medical condition that might be entirely treatable if caught early enough but that many doctors don't even know to check for.

If you're curious, the book Brain on Fire by Susannah Cahalan explains more. My niece finally got the tests she needed because a nurse who saw her in the ER the night she was brought in was reading the book. That nurse called her mother at home the next morning to tell her to insist on medical and neuro exams looking into the possibility of an autoimmune encephalitis. That nurse went above and beyond and may well have saved my niece.

Here's a photo I found. It was taken on Thanksgiving a year ago, when everyone could be here. Looks like there was another paparazzi moment happening when I took this picture. We all brandish cameras around here. I adore these children.





11 comments:

  1. What a relief- the miracle of human caring combined with the miracle of modern medicine!
    Your son's probably worried about what color shirt he should buy. (Just kidding. But. Men.)
    Love you tremendously, woman.
    M

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    1. Ms. Moon, nothing beats human caring! And yes, men! Love you back!

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  2. So very glad to read about your niece getting better!
    By now I have read so many many many stories about various autoimmune diseases and how they are overlooked at diagnosis (it took me "only" four frantic months but then I had a hunch and I can be a bully) that I am beginning to wonder why. And on bad days I suspect it boils down to the costs and time involved in getting the appropriate lab work done. Regardless of where we are.

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    1. Sabine, i am glad you had a hunch and fought for it. I think the universe sends us the knowledge we need to take care of ourselves, and you are obviously one who listens. Nice to see you here!

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  3. I'm so glad it's working out well!

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  4. Thank goodness for the smart nurse who thought outside the box. My cousin too was recommended for psychiatric services sue to her weight loss and depression, when she actually had two serious medical conditions that almost killed her. She is home now as well, hopefully continuing to heal. It's crazy sometimes.
    I'm so glad you blog and that you are here. My kids do that same thing, open arms to let me in their lives, then a shut door and nothing. Another mystery. I try to remember how hard it was to grow up, sometimes they just need a nap and to regroup!
    Hope your weather is kind soon. xo

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  5. I'm so glad to hear this about your niece -- and find it wild and disconcerting that I now know of two people who've had this terrible disease (in addition to having read the book!). In any case, what a relief and not a little terrifying to realize how luck can go one way or the other --

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  6. Hooray for good nurses!!

    I love that photo. Pictures of pictures of pictures. :)

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  7. What a terrifying disease. I read an NPR interview with the author of the book, and it just sounds so awful. Yay for that nurse, and I'm so glad your niece is improving!

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  8. i'll have to read the book... in fear & trepidation. how terribly frightening. i can't imagine--and yet i can; we all harbor these numbing nightmarish thoughts of the things that can sneak up on our children. so glad for your family that your niece is healing. oh my, angella. life can be *such* a bitch, can't it!

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  9. I love that picture, your beautiful family. I can always see so much love and ease. I'm so glad your niece is doing better. I was telling Noah about her the other night and we were wondering the same thing about people being sent to psychiatric wards for curable illnesses. Thank goodness for these stories and our increasing awareness.

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