Friday, September 11, 2009

And I Thought I Was Done

I really did. I thought I was done. I wanted to be done. I was going to go back to posting about my crazy life with the disabled daughter, the absurdity of living with someone you love and not being able to really help her, fix her, make her stop having seizures. I was going back to posting poetry, idle musings about mindfulness, the beauty of the everyday, and yoga. I even started a food blog!

And then I talked, briefly, TO MY MOTHER. I love my mother, I really do. She was a wonderful mother, full of love and enthusiasm. I always felt safe and I always felt loved. But my mother is an ardent conservative and has grown increasingly so as she's gotten older. In fact, ardent might be an understatement. She listens to Rush Limbaugh and is, frankly, immovable (I guess the apple doesn't fall far from the tree?).  She is ideological to the core and such is the nature of our political discourse (think fiery, think pyrotechnics like you've never seen, think Civil War and brother fighting brother) that we're better off not talking about much of anything of substance at all. My father is a tad more moderate than she and a lot more reasoned, but I'd actually rather not engage him in political discourse, other than the sharing of articles that we read, because, well -- I'll boil it down to this: NEVER THE TWAIN SHALL MEET.

When my sister recently shared with me that our parents were going to be traveling to Washington, D.C. to pay her a visit and also go to a Anti-Obamacare Rally with a few other couples (and who knows how many other people), I brushed it off. I didn't want to think about it. In fact, I really blocked it from my mind and forgot about it. But tonight, when my mother called and started to tell me what she was doing this weekend, I had to hang up the phone. Even typing this makes me feel shaky and almost sick to my stomach, eight hours later. I know she detected something in my voice, because she's good at that. But I said my civil good-bye and hung up. It's difficult to parse out these feelings and make sense of them. I believe in honoring one's mother and father. And I'm bound to them, inextricably, the ties made of not just duty, but love and respect for who they are and what they've made of their lives. So much is at stake, I guess. This isn't just the usual disagreement about Republicans and Democrats, liberal versus conservative, etc. etc. For me, this issue is intensely personal and, while I don't expect the rest of the country to feel the same way that I do about what's happening with healthcare reform, I expect wish that my parents would, at the very least, be sensitive to what this means for us. For Sophie. Because the facts, for us, are not about Obamacare and the "slippery slope to socialism." The facts are that we have a daughter whose chronic healthcare needs have caused not only grief and anxiety and panic and devastation and depression and near-bankruptcy but that the healthcare industry, as it exists now, has contributed greatly and, in some cases, caused this. I am being intensely personal now, knowing full well that there are tens of thousands, if not millions of people like us, of children like Sophie. And more than half the reason I fight for healthcare reform and for healthcare quality for all is for those other children. But when I read that I might have to buy into a special insurance pool, run by private enterprise, to get health insurance for my daughter (one of the concessions made, under pressure by politicians under the stranglehold of private enterprise, namely insurance), I feel profoundly depressed and anxious. I think What is going to happen to us? And us, in this particular instance, means us,  The Husband, Sophie, my two boys and myself. I had felt a glimmer of hope when this whole healthcare reform initiative started, and let me tell you, it's the hope that can sustain you if you have a child with a disability and have fought some insurance battles before, if a bed for said child is taken away at a prestigious hospital because there aren't enough and the nurse who tells you this news answers your question If Madonna needed a bed for her seizing daughter, would she get one? and the answer is YES. You feel hope that there's going to be a change from the times you've had to fax prescriptions to Canada and London to get your hands on a drug that is too expensive for the FDA to look into approving but still costs you over $300 a month. You feel hope about a CHANGE when you hear that drug companies make grotesque profits marketing their wares on television, interfering with the sanctity of doctor/patient relationships, creating dependencies and, in some case, illness itself. I felt hope.

When I hear and know that my parents are going to support this kind of thing, the fighting of this CHANGE well, I feel defeated. And broken-hearted. And that, too, is an understatement. And that's why I can't speak to my mother, at least about her weekend rally. It's not about her right to protest something. It's much bigger because this protest is against people like me. Like my husband, like our sons. Like Sophie.

I now understand, a bit, the intensity of feelings that caused cousin to fight cousin and perhaps brother to fight brother during this country's terrible Civil War. It's a strange empathy and distinctly uncomfortable. It's horrible. It makes me wonder about the real power of love and family.

(I read THIS today and thought of the hecklers at the speech last night, the tight-lipped politicians, the rolling of the eyes, the shout "YOU LIE" with the finger pointed. Really. Really? There is nothing new under the sun?)


  1. You speak such truth!!- Please don't ever lose that -- and don't give up your writing on how you are feeling and how you take care of Sophie and your family because this is your release-- it doesn't have to be about all the good!!-- you need a place to vent!!-- thanks for having the courage to vent!!

  2. That was perfect. YOU know. YOU know why that half-a-room full of tight-lipped men whom you know really wanted to take on the president out back of the White House in a real fight can NEVER say they are part of a compassionate party, a big tent party. There is NO explanation for such bratty, tight-lipped (and tight-assed) behavior beyond the fact that they DON'T care about you and your family and the millions of others like you.
    And to know that your own family agrees with them must be heart-shattering.

  3. I feel so helpless in the face of all this. All I can really do is pray for President Obama.

  4. Oh, Elizabeth. It's hard to when the people you need to really see you can't or won't. I am sure they love you and your family fiercely, but sometimes that doesn't translate to action.

    Reading today's paper I couldn't help but be struck by the irony- articles about 9/11,a day that should have taught us the short and long term destructive power of hate, narrowness and intolerance along side articles about the narrowness, hate and intolerance of the anti-health care crew. Good god, the cost so many pay for the spiritual ugliness of the few.

    Here's to a kinder, more compassionate world.

  5. Well said, well said. I wish the "opposing" (uber-conservative) side would stop being so wrapped up in their "this will cause socialism" and other ideological nonsense and start thinking of human LIVES that are effectd by this decision. i loved the personal nature of your story. it rang with truth.

    i mean, has health care so far been so great that we're willing to fight against a change? no system will ever be perfect and everything has pros and cons... but, last time i checked, our current system in America has - um, sucked. now, everyones acting like its the greatest since sliced bread.... um, what planet have they been living on?
    man, ill take the risk of change and the opportunity for ALL people to have health care than continue doing something that clearly isnt working. its called progress. its called compassion.
    whatever.... the world is full of whacky people :)

  6. It's hard to keep spirits up. Often personal experience will trump ideology. I'm sorry this isn't the case with your parents. I guess all we can do is keep trying to bring the country into the modern era.

  7. Oh Elizabeth could your sister say something to her. 'Like Mom, this is about Elizabeth's family. This is about us. None some political bandwagon but something personal.'

    That is tough, very tough.

    Love Renee xoxo

  8. I admire your honesty. Have you sent your blog post to your mother ? Perhaps it will cause her to really THINK .

    I popped over to your food blog. Please keep it going, it is wonderful . I am going to try the peach crumble .

    You are a wonderful writer .

  9. Ugh. I feel for you. My parents are similar and don't seem to get that we -- as in, my family/their grandchildren -- do not receive the medical care they should because we simply cannot afford it. And we are in much better shape than many, many Americans.

  10. The words and actions of family members are way more devastating than those of strangers. I would think it feels almost like betrayal. Not that you didn't know her political stance, but to take such action, fighting against that which you need....well, I'm amazed that you were "civil" on the phone. I just wouldn't have that in me.

  11. After I watched the President's speech the other night, heard what he was proposing and tried to work out what the best possible outcome might be, I was devastated. I felt like I had emerged from my cynicism and put all of my hope and my passion into backing him so that he could enact universal health care and for me, just as importantly, end the war in Iraq. What I've seen from Administration's opponents since this election has stunned me. The hate and the lies and the subtext have knocked me off my feet, but to your point, I should have expected it. It's nothing new and it's only gotten worse with the instant communication that hate radio and the internet provide to fan the flames. I was devastated because I felt like the President and the Democrats in Congress had bargained away the two most important components of workable reform: Single payer and negotiating with the pharmaceutical companies.

    Over the last two days I've worked my energy back up. Our problem is that those of us who believe in social reforms have historically been bound to discourse and rational debate. What the far right is doing isn't how we operate. We don't know how to fight back.

    We need a mechanism to fight for Medicare for all (which is the only way universal health care is remotely affordable) and we need our elected representatives to give credible voice to this fight. We also need to find a way to pressure the media into focusing health care and how this can work and stop spending the entire news cycle on the side show.

    There were millions of us who mobilized to get this President and Democratic Congress elected and with the right leadership to support, I know we'll do it again. We're here and we're waiting, but we're not the kind of voters who take to the streets with signs to shout mindless slogans.

    With your parents, I don't know what to say. People who won't listen are impossible to reach. The calm, Socratic approach is the only thing I've ever found that sometimes allows another person to reach his own conclusion.

  12. One last goofy piece of trivia: I went to the Charles Sumner elementary school in 5th and 6th grade.

  13. That was great....Just blog hopping and enjoyed yours tonight...
    Stop by and visit my new Christmas blog. There will be a drawing on October 1st for a GREAT prize...all you have to do is leave a comment..

  14. oh man .... that is really heartbreaking.

    One of the reasons I love reading your blog so much is the reasonableness I find here .... I heard that same reasonable tone in President Obama's speech. Who can argue with you (or him) unless there's an IDEOLOGY working in the arguer .... it takes away all sense of logic. It turns civil debate into mindless ranting.

    Keep telling us about it .... I don't (currently) have the same medical needs in my family - but there are no guarantees in life are there?



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