Sunday, November 26, 2017

This Blog Still Exists




In a 1984 Paris Review interview with the writer James Baldwin, he was asked whether he found it easier or more difficult to write out of anguish, specifically his utter despair after the death of Martin Luther King Jr.  Baldwin replied, "No one works better out of anguish at all; that's an incredible literary conceit. I didn't think I could write at all. I didn't see any point to it. I was hurt...I can't even talk about it. I didn't know how to continue, didn't see my way clear." When I heard that this morning as I listened to the Paris Review podcast of the interview, it shot right through me, a kind of bolt of recognition and affirmation. When Sophie was diagnosed with infantile spasms nearly twenty-three years ago, she was not even three months old and I not quite thirty-two years, and it would be more than ten years before I'd write a single word about the experience despite the nearly twenty-seven years that I'd been writing almost daily. I've never been able to figure out why, nor to explain it -- in fact, when I did start writing again, nothing irritated me more than the comment I received over and over that you must find such comfort in writing, that it must be so therapeutic.

Perspective. 

I thought about it today as I brushed my teeth, the whir of the brush in my brain a kind of provocation for thought, willy-nilly. My parents left yesterday after spending a few days here with us for Thanksgiving. It was a lovely time -- we seem to have figured out how to love one another despite our differences and perhaps because of them. My mother insisted a few times over the days she was here about a persimmon-colored blouse she wanted to buy me, something we'd both admired in a catalog, and I kept saying, no, I really don't need that or want it, and she kept saying, yes, I want you to have it, it's good to have nice things, but aside from letting her buy it for me because she wanted to and could, it occurred to me in my head, willy nilly, as I brushed my teeth this morning, after they'd left, that my perspective is profoundly different, that it's not just that nothing material really matters having gone through such anguish over so many years, but that having gone through such anguish over so many years, everything else matters. Do you get that?




Last week, the In Home Supportive Services worker came to our home to do the annual check-up. She was Armenian (the largest population of people of Armenian descent live in Los Angeles), and at some point during the mind-numbing process of signing papers and answering inane questions about Sophie's inabilities (I'm not saying disabilities because the questions are posed negatively), she looked into my eyes and said, Where are you from? and I told her that I had a Syrian grandfather, a Scotch English grandmother and two Italian grandparents. She nodded her head, said she saw it in my eyes and mentioned that Putin and Assad were together that day. I made a face. She asked, You don't like Putin and Assad? I said, Ummm. No. She asked, Why? I said, Because they're hideous people who have caused the deaths of millions of people. She said, Ah you would know, and I let it go, her perspective, as it was, focused on my very diluted ethnicity. I'm only telling you this, Reader, because that little exchange led to her telling me about her Christianity, about her worries as a mother to two grown sons, about her asking me whether I was happy and me replying that I was and her answering that I wasn't because I had Sophie and no one could be happy with a child like that




Pause.



Some of you out there will think that I should report her, that she was out of line, in the wrong line of work with such a perspective, but I only felt tired. 

It'll make a good story, is what I thought, even as I calmly gave her mine.

Here it is. I wrote it down.

28 comments:

  1. arrrrrggggh, these people. I don't know why they have the positions they do if that is how they feel. People say terrible things and it seems to just be the way it is...I have had my share of rude and insensitive comments. From "friends": "do you wish he had just died?" Or, "if he was my son, I'd kill him." Or, "You must have terrible karma to get a son like Ian." Or, "Ian must have terrible karma to get a life like this." From educators: "You just like to fight, don't you." Or, the worst of all (from an educator): "You need to get real about Ian's future." When I asked her what she saw as his future, she calmly answered, "I see him strapped to a bed and drugged." Oh, my heart...

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  2. obviously, none of that had to do with his ethnicity, just his "disability" --- as if somehow his disability was his fault. Or our family's fault.

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  3. Wow. So many good stories come from awful things I think. Bad things plus time can produce something beautiful and heart wrenching at the same time.

    I write better when I'm upset, or maybe what I mean to say is that when things are good, I don't find the need to write. When things are bad I need to write to sort things out. When all my thoughts are inside my head they go round and round. Writing helps me get them out of my head and then things start to make more sense. The big guy thinks I only write about bad things but that's what I need to do to work through things.

    I believe you can be happy with a child like Sophie. I believe you can be sad too. I believe that there is no sadness without joy and no light without dark. Life is a fine balance. Take care woman.

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  4. Jeez. I’d report her. What a thing to say. Sorry this rude dimwit was in your home.

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  5. I do not comment often. Living with my own 'inabilities' which silence me. I understand that you are tired. You speak when you must despite that. You are a warrior. Maggi in England bearing witness xxx

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  6. My heart just broke into a million pieces.

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  7. I'm sorry you got a remark like that. Shamed to say there was a time i felt that way too. I'd gone to a Children's Hospital memorial service that was held monthly in honor and memory of those children who had died the month before. As a mom of a child with cancer, I'd been to too many of them.

    But this time i found myself in conversation with a couple who had lost their profoundly disabled child with ever so many medical issues and disabilities. In my young and narrow mind, i could not fathom why they would not be relieved at that child 's passing. But then later that day, in brief contact with a mom with children with no current issues outside the band of normalcy made a remark that made it clear that she felt that it would be a relief for me to lose my child.

    And then the anguish when i lost my mother. No, i was not relieved she was gone. Yes, I was happier with her alive. As i was happy with my son.


    That woman has a lot to learn. You are richer to have learned this

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  8. Heart wrenching to read. And the idea that we can write when we're in the midst of those unspeakable experiences and that such raw can be cathartic is so unlikely as you say. But once you're a bit beyond even as you're thrown into more turmoil it's possible to find a way to speak about what was then. though for you and Sophie I imagine you never get close to to the end of it. The endless grind of survival even through all your love.

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  9. Yes, such comments are everywhere, even nowadays and even among professionals. Last week, a "well meaning" neurologist on the hospital team caring for C. asked us: "Why don't you put her in a medical facitlity?" which, as we all know, is the couth equivalent of "Why don't you just dump her?"

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  10. Perspective is everything... and thoughtless words are unfortunately everywhere... I'd rather write about the positive and uplifting things, but sometimes the negative and painful things need expression and a Voice too. Being Heard and just being able to release through Writing during anguish is part of my Process of coping I suppose. Big Virtual hugs.

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  11. Wow. While I can make room for various perspectives, I have to question why someone with THAT perspective is in THAT job.

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  12. perspective... this was beautiful writing, what is more complex than maintaining happiness when dealing with chronic illness? I was saddened to read negative comments about the way "these people" question happiness. When a woman compares worries about grown sons to caring for Sophie in a Christian context, she is processing information that is shifting her own perspective. Have we not all said stupid things?

    This blog is a quest for happier solutions. It evaluates the questions, the answers, the feeling of coming up empty and it records many of moments of joy. What I have learned from this blog is that when everything matters, happiness and despair co-exist--because of love. It is a difficult truth to express.

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    1. Thank you for your thoughtful words, Judy Kohnen. I agree (and noted) that what the woman said was really just stupid and only made me tired. And I didn't write it clearly enough, but she was in no way comparing her worry over her sons to mine over Sophie -- I think what was the most "bothersome" and wearying was that she didn't see any value in a person with such significant disabilities, that she could hardly believe someone could be happy yet have a child with such disabilities. What makes me weary is the constant work it takes for caregivers to fight for/maintain the dignity of our children to even exist -- that somehow we must prove their worth. Thank you for your kind words -- you last two sentences were everything to me. I am grateful.

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  13. It made a story that is simply stunning, less for what she said than for how you wrote it, a punch in the gut. Everything matters. I think James Baldwin with his usual piercing insight has explained why it's sometimes harder to post these days. And yet, when we do, we resist the hatefulness. This post, wrenching as it is, is a love story.

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  14. What about the parents she says these things to that don't have the strength, support or intelligence that you have? She is putting ideas in their heads and their kids at risk. Please report her.

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    1. Thanks, Anonymous. I doubt, though, that she’d share such things with everyone. I’m open — and find myself in exchanges like this. I disagree that she’s putting kids at risk or even “ideas in heads.” Were a strong bunch — even those without “resources.” It comes with the territory. I don’t think my caseworker was too bright, to tell you the truth. I had more of a “bless her heart” reaction than anything else. That and feeling tired ...

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  15. Fortunate for us, its existing (your blog). The tapestries you've woven together with words alone are breath-taking, worth lifetimes of waiting (but grateful for only 10 years). Though understandable, entirely, I was surprised to learn of the delay, given you seem to write as effortlessly as most of us are breathing. Yours is a golden thread. (Realizing, it must have taken hundreds of hours of sifting and dredging through others', and hammering out words of your own to create the brilliant strands you've spun. [Goddam golden threads tweaking funnybones and heart-strings, get me every time!])

    I agree 'nothing grows in anger', and maybe that's also true of anguish. Anguish might steel us once it's eroded bits away, but i think you and Mr. Baldwin are right that nothing thrives in it. Maybe it's like flooding or fire, that years down the road the life that's regrown is differently, and arguably more beautiful than it might have otherwise been. (But constant flood? and constant fire?) Well, nevermind my analogies.

    My mom said it's hard to be happy when your kids aren't. I believe that, however, she's also a cynic, and i'm pretty sure she didn't say *impossible*. Boo on the tactless, thoughtless comment by the "supportive" services worker.

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  16. Where to begin? I guess, first and always, with writing. When I'm anguished, my writing exists only for me, and only in fragments, bite-sized pieces that I can choose to swallow hard or spit out. It exists only after much walking and agitating and comes in flashes and feels very inarticulate. It is only later, when I've developed a different perspective, that I can begin to weave together the strands and turn them over in my mind and on the page to really look at them. Somehow, I feel like that is what you do with relationship - that you take it all in, from your mother, the caregivers, the bureaucrats, and turn it over and around and examine it and then decide whether to swallow it or spit it out. And when you spit it on to the page, we are all better for it. Not only your ability to hold it all without assimilating it, but applying your incredible perspective to it and sharing it with the rest of the world - that is your superpower. Thank you.

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  17. The things people say.
    I think maybe writing has helped my body. The pain inside of it. The way my body feels when I tell the story. But I get what Baldwin said. The literary conceit. And I get what you are saying. Your words that express your perspective are brimming with compassion and intelligence. Thank you. I'm so glad to know you.

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  18. Thank you for your words in spite of, or maybe because of, your "weariness."

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  19. This woman is missing out on so much. She sounds blind, to all of that that makes our lives worth living. Bon courage.

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  20. Yes, you learn as you stumble along, you learn that the world can be cruel and that there are people who are thick and in the wrong place. And along the way you learn that some thing are worth our feelings of being hurt and our energy to be invested in and others - are not. That some things are so undignified that we need to step over them like the turd they are on our path. That there are instances for which the words pfffft and pah have been invented.

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  21. I see, and honor, the shift taking place in you. 🙏🏻

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