To Engage... or Not?

Click on the image to visit Engage with Grace…. But read the below first.
The other day I got an email from Christian Sinclair, one of my favorite people online. Dr. Sinclair (he is an MD in hospice) asked me to participate in a project called "Engage with Grace," which uses a simple set of questions to share your wishes on your end-of-life care with family and friends. The project includes suggestions on how to open the conversation and stories from families on why such conversations made a difference to them. As part of its focused strategy Engage with Grace suggests that families devote a few minutes of our holiday get togethers — while we're warm with gratitude — to the important, heart-strong topic of how we do — and DON'T — want to be treated when the time comes. It's simple, powerful, and I think it could be pretty effective.

Education (and appropriate paperwork) about end of life wishes is a cause I support 100%. When my husband was in hospice, unable to speak, I found out that advance health care directives (often known as "living wills") have their limits. While Gavin's documentation laid out basic guidelines on his eventual care, the number of medical situations possible was too complex to really use the paper as a strict guide. I was protected by the document but it was most helpful to also have had many conversations through the years — and to have been through many, many junctures with him where a decision in cancer treatment was necessary — to really interpret and make decisions on his behalf. (He also had a living will, which in our state is more limited in scope, and I was his health care proxy, which is a tool that gives me power to make decisions when he can't). (You can read more about the evolution and limitations of these very important documents on Wikipedia here).

(Which all maybe reads as pretty funny when you consider I've spent the better part of my time in the last four years bemoaning how little thought we gave to his eventual death: no paradox, he'd had all this drawn up when we got married because he had had life-threatening heart problems in the early 90s. The conversation post-cancer is the one I fixate on, for better or worse.)

And I loved participating in Engage with Grace, the "blog rally," last year. (Plus, there were jokes.)

This year I just couldn't.

My resistance made me stop. Why is this year different? I realized that what I do online has changed so much in that period. At Thanksgiving last year, I was just just a month or so into the support activity I do on Facebook. That community and its development is another long story, and one I intend to tell, but it's relevant here to say just: last year I didn't know how many people I touched. I was 3 years out from my loss, and my blog was all about ME. Yes, there was a community aspect, but it wasn't very… vivid to me. Today I've been through nearly a full year of hearing from widowed people — many fresh in the face of their loss — about EVERY DAY. About their hurts, their triggers, their traumas. Yes, it's wonderful to have created a space for them to share, to be validated, to find their own ways in helping others grow. But I never expected to be doing that type of activity on Facebook at all, and certainly not to devote so much time to it or for it to take the shape(s) that it has.

But the fact is that now, I know really vulnerable people are listening. They care what I think, and I hear that the holidays are the trigger and trauma to beat all others. I have heard them winding down as the light has fallen all autumn long. Through the interwebs I can smell their anticipation of the laden table, the loaded question, the family member who "doesn't get it" and wants them "to move on, already."

Widowed people are powerful advocates for Hospice, end-of-life planning, grief literacy, and other areas where our society is changing quickly. But most of the people who respond to my widows' activities online are just concerned about surviving the holidays. They are -- they need to be -- in one-day-at-a-time mode.

Many of you are scared and hurting. I just can't throw this in your face and ask you to participate this year. I can't avoid all triggers (I'm not really all that sensitive) and many of you expect me to handle tough topics, but it just didn't feel right to engage this full-on this year.

If you want to click through, you're welcome to. Engage with Grace is a loving and accessible way to discuss end of life care with family members at the holidays. I strongly recommend it.  And of course, I know not all my readers are widowed people. But the ones who are on the edge, ARE.

I still share my own experiences, and because I'm anonymous I can be uncensored in those. I believe you'll respect these horrors and delights as sharing.

This year this community is a different one than it was, and I am a different sort of advocate now.

And for that — and for all of you — broken wide open and present for each other EVEN NOW — I am so very thankful.


Marty Tousley, CNS-BC, FT, DCC said...

As one who's been companioning the bereaved in an online discussion group for several years, I so appreciate what you've said here ~ and I thank you for sharing your thoughts with all of us!

annie said...

It makes sense given what you do, but don't assume that everyone is too tender to hear this message. At four months out I hounded my parents to get POA's, Health Proxies and Living Will's. They balked and I informed them that I was not going to go through with them what I did with my late husband - we barely got things in place before his dementia claimed him and left the whole of decision making on me.

I was rather strident (how unlike me:) with my family and friends about wills, and making plans in advance and having adequate life insurance coverage. I had learned all of that the hardest way possible. I didn't want to see anyone else go through what we did.

Yeah, it's tough sometimes with the day to day, but most of us don't become so self-involved that we lose sight of those who are important to us. You might be surprised by the number of folks who've already had talks like this with their extended family and friends.

Supa Dupa Fresh said...

Marty, thanks for all that you do.

Annie, yeah, you might be right (which is why I put the links in) but it just didn't feel like part of the conversation I've been having lately. I don't object to it, but didn't feel comfortable raising the topic at this moment.

Anonymous said...

What you say at the end reminds me of this Martha Beck quote, which perhaps you know already: "Authentic grief has a strange and terrible sweetness....Even as real grief breaks your heart, something in you knows that you're being broken OPEN, and there is something profoundly hopeful at the core of that sensation."
Thanks for all of your words, Supa. xo Carolyn

Supa Dupa Fresh said...

I love Martha Beck's work, there is something quite true in that quote. We UU's say "broken open" all the time, so maybe that's where I got it from?

Thanks for your words, too, C.

Christian Sinclair, MD said...


Thanks for writing this unique perspective on the Engage With Grace blog rally. I think you honored your feelings while still respecting the place where Annie is. Sometimes action gives meaning and purpose that was hard to find.

One theme I have been 'trying out' with some families I meet with in hospice is what I call 'preventative palliative care.' I talk with families about understanding what is happening to their loved one and to reflect on how the decisions were made that led to this point, what decisions did they wish they had more information, how have they discussed this situation with people who may have to make these decisions for them in the future (i.e have you talked to your kids about how you made these tough decisions about their grandfather?) Thanks for the kidn words too.


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