Generosity in the Quiet

This week continues the pattern of quiet.  Many hours of resting, drifting, eyes opening to acknowledge who’s sitting with her, sometimes a smile, and always response to what’s funny. And the big blessing, much less pain.  Some discomfort, but usually shifting and adjusting this or that makes things ok.

BEllenut the real story I want to share is generosity.  Earlier this week, Ellen acquiesced to being carried downstairs in the wheelchair and joined the crew for regular Tuesday family dinner.  Even though we toned down the usual rowdiness, it was clear that it was all a bit too much, and she didn’t even want anything to eat.  But she did it as a gift to us.  When we left the table, I asked if she would like to go out to the porch: nod.  After wheeling her out and sitting there in beautiful moonlight and breeze, just the two of us, just gorgeous, I realized that I hadn’t done something for her, by helping her out there, but rather that she knew I wanted that moment and was giving it to me as a gift, as she was ready to be back upstairs, tucked into bed.

As you know from earlier posts, Ellen has suffered some form of cerebral damage, either from the various therapies (radiation and chemo) or from a tumor (14 brain mets) that makes sentence production difficult.  The first half of a sentence usually gets out fine.  Examples are “can you get me…”  or “we need to…” or “remember that we should…” but the clincher, the thing that would tell us what she wants done, or how make things better, just doesn’t come, or comes out wrong.  At first, this was deeply, deeply frustrating, but this week I see a generosity settling in, toward those of us trying to help by guessing and getting it wrong (which doesn’t actually help because more words in the space just confuses things, so we’ve learned not to), but towards herself too.  Here’s a quintessential example from yesterday:

She said: “Can you please get me,” pause, “a white,” pause, “tripe?” And then, almost immediately, this beauty: “Boy, it would be funny if you really got me that!”  I never figured out what she wanted me to get her, and when I’ve asked her again if she’ll tell me, she gives me a sly grin and a head shake.  Hah!  More gifts.

Here’s a picture from the archives (2012) that reflects a bit of that humor and generosity.

8 thoughts on “Generosity in the Quiet

  1. Shelly

    As always, thank you for sharing, Eric. Ellen always did have a great sense of humor, and it’s heartening to see her able to draw on that now, in a situation that must be terribly frustrating for her: losing her words. Words have always been so important to her. I hope she was able to enjoy the moonlight and the breeze, at least a little bit. Please tell her I think of her often, especially when I have my morning coffee–right by my desk, I still have the pin she gave me so many years ago (“Give me coffee and no one gets hurt”). She was really amused by that gift!

  2. Thank you, Eric, for your sweet words of positivity. I feel like the world is holding its breath…we at MANA all love Ellen, (and you and your kids too) so much…the generosity that you and Ellen have shown this organization over these many years is astounding…so we understand how generous Ellen and all of you can be. much love to you all, vicki

  3. Love love love your updates. Thank you Eric.

  4. regina walther

    much love and healing blessings all around, Regina

  5. Cricket

    oh what a lovely description, it so totally resonates with my experience of being with her– generosity and humor. Sending so much love to all of you.

  6. Mary Anne Davis

    Thinking of you all – I have some plates for you.

  7. Priya Morganstern

    Thank you for the beautiful post. You are all lucky to have each other.

  8. JD Paradise

    I’m glad there’s still beauty in the moments for your family, from time to time. Thank you for the updates.

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