Saturday, March 29, 2008

Thought it was time....

To start up some way to document/journal at least some of what's been going on in our lives on this strange journey we've been on since last summer when Xian first started showing the early signs of her as yet undiagnosed and seemingly rare neurological illness. I'll eventually post something about all that has happened in the meantime, to fill in anyone who's jumping into the 'middle of things', but that's one long post, so it'll probably happen in bits and pieces. I suspect that this is going to be a bit of a random/nonsequential sort of blog, aside from what may be in our future---and no certainty at all about that. However, the 'good' part of not having a diagnosis (and, truly, there's little that's good about it, since 'no diagnosis' doesn't get us very far in terms of treatment or services) is that no one can say with any sort of authority that she won't get better, or even that she won't return to her former sparky self--and no one can predict what her future will be. That gives me a lot of comfort and hope while we live in ongoing uncertainty and continue to 'collect' symptoms, appointments, tests, and doctors.

A couple of things in the way of explanation: the url "cleargrace" is the English translation, more or less, of her Chinese name Qing Xian. A good name, as before her illness Xian was a child who loved to move, never stumbled and could hear and perform the rhythm in any music, and while strong and active, she was a graceful girl. The "Bad Spells" in the title refers to how we've all come to explain/narrate Xian's illness. It was Xian herself, earlier on, who told me that "A bad witch put a spell on me" and that "Maybe a doctor will break the spell". Given the lack of any diagnosis or explanation, it seems as suitable as any and it's become how Rachel (3) and I tend to talk about some of the unusual things that happen---Rachel will often say, "Xian's doing ___ because of the bad spell, she can't help it." Or, "When Xian breaks the spell we can go to Chucky Cheese!" (Something she says pretty much every day---we visited CC for the first time when a friend and her daughter came to visit last summer and Xian and Rachel had the time of their lives. The CC 'event' also preceded the first definite signs of Xian's illness by a few weeks, so it's interesting that Rachel also marks it as something from 'before the bad spell'.)

Both girls have long been big fairy tale afficionados, they love everything from Dora's Fairytale Adventure to anything Disney, books, costumes (as you might tell from Xian's picture) and more. So, the fairytale images, tropes and metaphors are not a big stretch for their own sense-making, and it seems somewhat suitable given the lack of anything more scientific. Recently, Xian's been interested in watching the Disney version of Cinderella and is obsessed with the recent DVD of "Enchanted". For a long time---probably since early December or even earlier, she's been unable to tolerate watching any video/DVD aside from Dora for some reason---part of her complex set of symptoms has been severe auditory sensitivities. Something very odd seems to be going on with her perceptions of sound. She can't stand being in a store with 'muzak'--yeah, I know, neither can I, but the severity of her issues meant that for quite some time I could not even take her into a store because she'd get so freaked out. Recently, though, and I think it's because she's started to adapt to whatever odd thing is going on---she's been able to tolerate grocery shopping (all the while with her fingers placed firmly in her ears) and has renewed interest in few fairy tale themed videos, aside from the Dora versions. Her love of "Enchanted" seems suiting--maybe she identifies with Gizelle, sent off to a strange land (New York) by a mean witch, and who has her "spell" broken with a kiss by an unexpected love. While Xian's no longer having many conversations with us, she still occasionally mentions her spell, and wanting to have a blood test to break it. Who knows, maybe she's right. (She was certainly right about being in "doctor jail" -- her response to questions abot where she was when she was in hospital!)

1 comment:

Susan said...

Oh, Lila, I saw your post on the SMC board and just wanted you to know that you and yours are in my thoughts and prayers. I'd definitely have another brain scan done...this might prove more fruitful as they have a baseline to compare it to. Such scary symptoms, and until very recently, no help from the medical professionals. I am hoping that this week's appointment goes well and bears fruit. Hugs to you all, Susan.