Monday, February 22, 2016

In my dreams

I


In my dreams they are always waving their hands and saying goodbye,
And they give me the stirrup cup and I smile as I drink,   
I am glad the journey is set, I am glad I am going,
I am glad, I am glad, that my friends don't know what I think.

from Stevie Smith's poem In My Dreams


There's an article making the rounds on the internets about caregiving. You can read it here. It has provoked discussion, some of it contentious. Initially, the article struck me as comforting. It resonated with my own experience in that while I find being a full-time caregiver to a disabled young adult wearing, it's also an honor. Why wearing? You know why. Why an honor? I think to give of oneself, over and over, to take care of someone who is entirely dependent, is a beautiful thing and calls upon our best selves, my best self. Not all of the time but most of the time. Other people are vehement in their hatred of caregiving, would change everything in the snap of a finger. I don't judge that.  In fact, I understand that. They're not my people, though. Others see caregiving as a gift from God and the whole mess as a blessing. They find meaning in chaos. I don't judge that. In fact, I understand that. They're not my people. Where am I going? 

After mulling it over and reading the comments and discussion, I felt more conflicted. 

Even equanimity is unbearable sometimes.

I was feeling resentful this morning. I was feeling resentful that I must give up, give way, miss out, miss, because of this whole shebang. I feel a divide, a chafing from those that live typical lives. Even my friends. I know it's useless to make them understand. Perhaps it is a boulder on my shoulder.  I am glad that they don't know what I think. Or maybe I'm delusional, and it's they who are waving good-bye to me.

Resentment is ugly and weighs far more than accommodation. 

That underground bar, though, connected by tunnels, whiskey shots and empathy. I am glad the journey is set. 




To Christy, to Jeneva, to Heather and Claire, to Andrea, to Elizabeth and Mary Lou and Meg and Molly, to Susan and Phil and Sharon and Alison and Ray and Cindy and Dave and Ken and Michael and Lisa and Sandra. To Katy and Jennifer and Erika and Carolyn and Erik. Michelle and Meg and Shannon and Jay. Liz and Heather and Brandi and Denise. Carrie. Terri, Jackie and Paula and Shannon, Rebecca and Tricia. Elizabeth and Olivia -- to all those I missed.


25 comments:

  1. Can there be constant accommodation without resentment creeping in at some point? You'd have to be pretty damned Zen. We are mere humans. I am sorry this is so hard, and that you feel the divide right now. I am loving you from across it, and hope that is okay.

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    1. Thank you, Angella. You are comforting in the best way.

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  2. Just like the Peace Corp, it's the toughest job you'll ever love.

    I became a caregiver after retiring from my M-F job. I did it because I found great meaning and purpose in it. Because I would like to be cared for if I needed it. Because I find great moments of beauty and humanity at its best in it. It's also the toughest f*ing job on the planet. And you have to love it, and find balance with it. And go down to the bar when you want/need to.

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  3. I'm sitting in the hospital, looking at Michael all hooked up. Electrodes on head, IV line in. Docs have come and gone. We have a plan. Dear Jesus. I hope it works. I want to go back to where we were. It was far from perfect but it was good. Elizabeth---I hear you. I am with you.

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    1. Oh, Mary Lou. Jesus. I am sorry. It'll be over soon -- at least this part. You are an amazing woman and mother.

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  4. My experience is just a glimpse of what your life is, but I remember the years when I was a sole caregiver, and the only viable path was to become a better and better caregiver because there was no other choice. No choice means both acceptance and resentment. It wasn't a life that could be translated with any words to anyone outside of it.
    Baci.

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    1. Thank you for your understanding, Francesca. I know you know.

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  5. I love that you are so honest about it all. That you read and digest the article and the comments, that you allow yourself to feel the honor and the exhaustion, that you acknowledge that there are dimensions and complex feelings, that says to me that you are, above all, doing this work with your eyes open and your heart open. To me, that is the very definition of "best self." The mere idea that we can gird ourselves against feeling everything by choosing a side to be on is understandable to be certain, but the older I get, the more I believe that if we don't continue to evolve our ideas about the most complicated things in our lives, the harder it will be for us to support each other.

    You are doing an incredibly hard thing in the most authentic, real way. Thank you for sharing your journey and your drinks at the bar.

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    1. Honestly, Kari. I think I should pay you as online therapist. You always have the most cogent, sympathetic and wise things to say.

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  6. Well, you know me and my various disagreements with language. The word "settling" rubs me the wrong way on many counts. And, contrary though it may be to, say, the TED talk circuits, I respect ongoing internal conflict. It's not easy, it's not relaxing, but that roiling unsettled state is a primal soup of active awareness and seeking.

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    1. I've never felt like settling or even know what it feels like to settle.

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  7. I've already started digging the tunnel from SD to LA and have filled it full of vodka shots (cold this time).

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    1. I think those drug lords who order tunnels have nothing on us, Allison!

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  8. I was telling two of my daughters today about the plot of one of Ann Tyler's books. The one where the mother/wife just gets fed up with it all and while on a trip to the beach, just keeps walking right out of that life and into another one. Ironically, in that life, she is also a caretaker but a paid one. My girls said, "I can imagine you writing something like that." And I said, "Every woman in the world has had that fantasy. And that's just the "regular" women who have nothing more than the glorious "normal" people and things to tend to.
    No. I cannot understand. But I can say that you are one of my heroes and part of that is due entirely to your honesty, your humanness. Your frustrations and all of the messy reality of it. Are you a saint? Well. Maybe in my book, but mostly, you are just (just?) human and to all of the women and men who do what most of us can never imagine doing, I bow to you in humbleness.
    And I'd pour you a shot any day of the week and toast to all of what you feel as you do what you do. And to the fact that you do not just keep walking down the beach, even if you think about it all the time.

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    1. Oh, Mary, thank you. And for the record, I refer to that scene in the Ann Tyler's book all the time -- it's one of my favorite of Tyler's and certainly a fantasy of mine.

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  9. I cannot and do not know what it feels like to be you, but I am famous for trying to look on the bright side so when I read your post I thought, there is probably no one out there who wants to have a child with serious seizures, who needs full time care, but there are people who wish they could write like you, wish they could cook like you, wish they had handsome, kind and interesting sons. There are people who wish they lived in sunny, warm California. Who wish they had food on the table, health care, family, a car, etc. So while you may be living in a kind of hell on some days, you also seem to have many people who love you and a life rich in experiences that many people can't even dream of having. Sorry if my glass half full attitude is obnoxious (I've certainly heard that before) but you inspire people and that is worth something.

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    1. Hmmm. I'm not sure what to make of your comment. I appreciate the kind things you've said here, and perhaps I misunderstand you, but there seems to be an implication that I am, perhaps, not grateful enough for the things in my life that are clearly outstanding. With all due respect, though, I rarely shirk from expressing my love and gratitude for all those things. I know I probably sound privileged -- and that makes me wince. I AM privileged, and perhaps I should acknowledge it. Whether people envy me for what I have or feel relief that their lives are different is sort of beside the point, though. Comparing oneself or one's life and situation to others is a dead end. As far as having a glass half full attitude -- I'd never think it obnoxious. I do believe that everyone has a story to tell and should tell it how they see it. Thanks for commenting so thoughtfully, Elizabeth!

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  10. I found that piece both true and not true. Yes, I settled in. Yes, I chafed at the accommodations to my own life. Both happened. Caregiving ran the gamut of emotions for me. And one thing that consistently saddened me was my mother's pain. The medical profession had it's had in that pain--and that still makes me angry. I could have written that essay on a good day, and on a bad day written something else entirely. You're right about resentment though. It's ugly. And very, very heavy. Sending love, love, love.

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    1. Thanks, Denise. Your caregiving was extraordinary -- how you did it and how you told it.

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  11. I can certainly imagine the beauty and resentment in the situation you are in and yet it's easier to imagine than having to live it. I would think I'd need a shot of something multiple times a day to bear it. You are an amazing mother and Sophie is a lucky young woman to have you. I send you so much love and support.

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    1. Thank you, Joanne. I always feel your love and support. You are indeed a special person, capable of such great empathy.

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  12. If you should find yourself in Nebraska, perhaps on a cross-country road trip with your boys??? Please, please
    look me up! I'd so like to be one of your people!

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    1. I would love that, ilga. I have never been to Nebraska and would so much like to visit!

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