Friday, July 24, 2015

Where You Are

Sculpture Garden, Norton Simon Museum 


I've got a whole month of Sophie days ahead -- no school and no Communicamp this year. It's hard thinking up things to do with her, and there's some rigamarole involved given the stuff I have to schlep. I'm not complaining, but if I were a man I'd do some mansplaining. There are definitely days when I'd rather let her roam around her room, picking up toys to mouth, aimlessly, but those days leave me feeling not so much guilty, but rather inadequate. I know she needs attention and stimulation, but I don't feel like doing it. You don't need to assure me that I'm a good mother and couldn't possibly be with her constantly. You don't need to tell me that no one could possibly do that and do it for twenty years. I know these things. I just feel a bit querulous, and my sense of humor is elusive in the face of -- how do I say it -- the perpetuity of it all. I have this theory about our cellular/genetic makeup -- how as mothers we're made to withstand things like babies screaming for hours and pooping their pants for years, or needing to bathe and feed and entertain them, even when it's boring. Our wiring is beautiful in that we are able to do these things, sometimes very well and sometimes not so well, because we also know, on some deep cellular/genetic level that it isn't forever. Colicky babies eventually stop crying. Every baby eventually sleeps through the night. Toddlers get potty-trained, learn how to talk and eventually play by themselves. Ultimately, if all goes well, they leave you for their own lives.
The thing about caring for a severely disabled child is that the whole paradigm shifts -- we aren't so much wired to endure the necessary level of caregiving but have to figure out how to endure it for -- well -- ever. And no, it might not be forever, literally. Some of us fear that our children will die sooner rather than later. We also fear that they'll die later rather than sooner. Not a day goes by that I don't feel grateful for the time I do have with Sophie. I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor.

Equanimity.



At Hedgebrook I had the opportunity to share a bit of my writing with the other residents, and after reading a chapter about the early days of caring for Sophie -- the immense crisis, the hell of it all -- the writer asked for my feelings, for me in the events. Surely you felt something, she asserted, a writer needs to show those feelings, and I felt the tiniest bit defensive. I've been thinking a lot about that feedback and questioning over the last several weeks. I don't articulate myself during crisis, nor do I identify every feeling as it occurs. I am, rather, in it, doing it. When I write it I want that to be conveyed -- not so much the necessary dissociation that occurs but the attention to the present moment that leaves no room for analysis. Lorrie Moore wrote in her story "People Like That Are the Only People Here:"

How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.

 The trip and the story of the trip are always two different things. I'm trying to tie these things together -- the love and the loathing -- the present and the perpetuity -- the trip and the story of the trip -- and convey what it means on a cellular level, when all paradigms have shifted.

I've lost my thread.

I took Sophie to the Norton Simon Museum this afternoon with a friend of mine. I have lived in Los Angeles for eighteen years, yet I'd never been, and it was just fantastic. The museum is very small, but the collection is pretty amazing, and the sculpture garden was gorgeous. My friend and I wandered around and caught up with one another, and Sophie was fairly content, so it turned out to be not just a lovely afternoon but one that assuaged my needling thoughts of inadequacy and caregiver fatigue.



22 comments:

  1. What were the feelings in the beginning? This kept me thinking today about it today.

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  2. There's a lot I want to say about this thoughtful and moving post, but I have company here tonight and am on my phone. I'll be back. Love.

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  3. I can't edit my posts after I see my typos either.

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  4. And we do what we can and we do what we should and we do what we want and what we don't want.
    And somehow, it works out.

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    1. Yes. It's hard to believe, but it does somehow always work out.

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    1. Thank you. I always feel you there.

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  6. It's the forever part that grinds you down. Made me want to kill myself sadly. I just couldn't do it anymore. The constant stress was unbelievable. I wonder sometimes how we kept going, how I kept going. But I did. Every morning I would hear her feet hit the floor and the day began. It was kind of like "Groundhog Day" with Bill Murray, only not funny.

    Glad you had a nice afternoon after all.

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    1. Oh, lily cedar, you are always so true. I value and am blessed by our long blog world friendship. You are a good mother, and your daughter is blessed to have you.

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  7. I'm very attached to that museum. I'll go back with you guys anytime.

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    1. Come on up, Allison! I can't believe it was my first time there, and I will definitely go back.

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  8. One of my favorite lines : "I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor."

    Regarding the person at Hedgebrook who wanted more of how you felt in your writing - I have never found that to be lacking on your blog, or in your book. In fact, I would argue that the best memoir writing (Mary Karr, for example) doesn't explain internal affective states, but rather describes events in a way that allows the reader to FEEL something that YOU have stirred up in them. To allow THEM to feel, not explain how YOU feel.... and this is what you do so brilliantly in your writing. So, I disagree with that critique of your work, respectfully :)

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    1. Thank you, Alicia D. I really appreciate your thoughts on the critique. I generally take criticism all right, but at the very least I hope to get something from it, learn something about myself, about my writing, etc. I try not to take things too personally or to get defensive, either.

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  9. I can't imagine what it's like to live with that constant tension between wanting the best for your child and seeing your caretaking as an endless path. For what it's worth, I think your feelings come through quite clearly in your writing! The museum sounds (and looks) like a peaceful, interesting outing.

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    1. Thanks, Steve. And yes, that outing was a peaceful one. I think you'd love the Norton Simon --

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  10. I've been thinking a lot about the feedback you got, about writing what you were feeling in the midst of crisis. I'm perplexed by the advice, since in the midst of crisis one marshals all energies to just get through it, as you note, and the extreme terror or hell of it, evoked through "showing" is far more powerful and visceral than if the writer pauses to "tell" the feelings, especially since, as you also observe, there is no room for analysis of feelings in the moment of crisis, there is only the meeting of it, and it seems to me every reader can bring to that her or his own sense of the feelings that would accompany such a pass, without being told. I don't know if I am being clear, but I have read some of your writing about Sophie's early days, and for me, the gut-wrenching power of it was in the "showing," and in the fact that you did not get bogged down in "telling." I got the feelings; they were all over the page, bleeding through every word, so I am bewildered by the critique you received about that. Of course not every critique is on target. I generally weigh the feedback, try it out, and if it improves the work I take it, but if I find that I just don't agree once I've weighed it, I respectfully move on, appreciating that the other person cared enough to offer an opinion, but not being beholden to that opinion. In other words, the work knows best. Listen to that voice most closely of all. My two cents.

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    1. Thank you so much for this long and thoughtful comment. I have a hard time deciding if criticism is improving my work or not -- I struggle probably too much when it's "negative," get a tad defensive but am painfully aware of the my defensiveness. God. Writers like me can be ridiculously self-absorbed! I do like to be challenged, though -- thank you for what you said about the work knowing best. That's a very cool thought and good advice.

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  11. I absolutely agree with Alicia and paddington. In my life, one of the things I appreciate the most about my response to challenges and crises is my ability to just do what needs to be done. It is as though my focus narrows and my analytical brain takes the lead in a very crisp, functional way. I have often been told that I am the person people want around in a crisis because of that laser attention to triage. It is afterward, when I am alone and my perspective widens to encompass the enormity of the situation that I just dealt with when I get shaky and succumb to the overpowering emotion. I wonder if the person who gave you that critique doesn't work that way or hasn't faced situations like the ones you deal with on a regular basis and, thus can't truly understand what it's like. In any case, I echo the others who say that your writing conveys beautifully the vast swirl of conflicting emotions and actions that you carry with you. So maybe you have lost that other person's thread, but yours is still firmly tucked in your pocket.

    I wish you many peaceful days of exploration with Sophie this month, along with some where you lie around and read a book while she wanders in her room. That is what summertime is for, is it not?

    Love.

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    1. Thank you AGAIN for such thoughtful and supportive words, Kario. Your comments are always like rich treasures -- I feel like I should print them out and compile a book of them!

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  12. Agreeing with Karoi and the others above - I feel that you convey what you are feeling beautifully. Perhaps the reader/writer has no frame of reference for what you experience daily. And as you are still "in it," it seems (to me) tantamount to inviting trauma to pick it apart, looking for feelings. They are obvious in your writing. Any reader with any empathy will get it without you spelling it out. For heaven's sake, you have a poet's soul! Poets don't spell everything out!
    XO

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    1. Karen, that's exactly right (what you said about picking apart the experience and thus inviting trauma). There's a part of me, though, that wonders if I'm not FACING it and therefore avoiding it, but then I think that every reader is not going to "get it" or even have it resonate with them. And thank you for the poet's soul comment -- sometimes I think I should just hang up my nonfiction hat and write poetry only!

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