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.

Blog makeover

How do you like my new look? (Be nice. Still needs a bunch of widgets.)

Wordless Wednesday: Of course he knew

Gavin took this snapshot on our next-to-last vacation, a trip we took to the mountains just before he found out he'd need spine surgery. This was after a fairly peaceful summer of chemo, opiates, and naps, before the catastrophic and fast and bumpy ride down.

He was known for drawings of chairs and tables with no people in them, and often worked from snapshots. This chair is looking out at the golf course, just off the lodge patio.

I found it after he died, and now, I think when he shot this, he must have known.

Veterans

How does Mr. Fresh feel about you calling yourself a widow? Other people ask me all the time, so one day I asked him: do you mind that I continue to do widow community activities and occasionally (when it’s appropriate) I still call myself a widow in public. We’ve already discussed his comfort at being surrounded by so many of Gavin’s things, including his artwork — he knows that stuff is never going to the Salvation Army — and about raising Gavin’s daughter. Those were dealbreakers early in our relationship.

But is my ongoing widowhood an irritant to him? Is it annoying to be married to someone who does widow things all the time? Does it bother him that most of the people I hang out these days with have shared this experience?

He hesitated just long enough to get the right relaxed confidence in his voice: “No.” It was going to be a man’s answer. “If you had fought in a war together, and twenty or thirty years later you mostly socialized with your combat buddies, the folks who’d saved your life, no one would think twice about it. If you felt closest to people who’d been in your division, if you spent afternoons at the VFW, and visited battlefields on vacation, we wouldn’t blink an eye. We’d call you veterans.”

So you really think losing a spouse is like fighting in a war?

“It’s pretty much like that, yes. For veterans, even after the war is over, it’s still a vivid series of events for you, probably the biggest thing that happened to most of you. It required huge adjustments and helped form who you are. Your loss is part of you. Just like with a veteran, your war years can be incorporated into your life without disruption. And if you were working in the field, you’d just be career military; many people are, our country relies on them.

“I have nothing to be jealous of.”

How grateful I am for a partner who takes life and loss seriously.

And thanks for fighting by my side, friends. Let’s raise a glass to many years of peace.

Shells

The little prince is walking towards the golden snake which he'd asked to fell him, trembling a little, and comforting his friend in the desert:

“You understand… It is too far… I cannot carry this body with me. It is too heavy.”

I said nothing.
“But it will be like an old abandoned shell. There is nothing sad about old shells…”

(St. Exupery) 

* * *

How can there be nothing sad about an old shell?

Or perhaps you hate and fear slugs -- you might disagree: an empty shell means another horrible snail has gone to feed a songbird. Old shells could make you pretty damn happy.

Shells totally make me sad.

* * *

"Art is the empty shells we leave behind," I wrote once in a fit of post-adolescent poetry. I was understanding for the first time in my life (How old?!?) how much more wonderful it is to love and listen to people rather than their creations.

Then I bound my life to Gavin’s, he was an artist, too. His works pale, scrubbed pencil, indelible and eternal despite ephemeral materials and their textures of shell, of egg and glass. Never of skin or soil, what I loved best: muskless but perfect, and kind, and thoughtful, with a calm clarity that warmed my every morning.

Art is always empty, and always “always.” Vita brevis, ars longa. Now I finally understand what Wallace Stevens meant: death truly IS the mother of beauty. The flower is only beautiful because it will fade and dry and return to the soil. I could stare at a dahlia forever, but it won’t let me. A wax one? A quick glance is all I need.

* * *

As I watched Gavin on his last day, on his way out, he was so clearly just a shell. It was quite a day. He wasn’t speaking any more. I’m not sure I saw his last really coherent words because as the only ride for all of his and my families, I was there late. They told us to get there as soon as we could.

“There are signs that he’s beginning the dying process, some changes in his body,” she said. The manager reminded me so much of our superthin, professional, pale fertility doctor. “… Color changes.” I could see what she meant: when we got there his hands were mottled with blue and black. He was half a corpse. The evening before I was feeding him lychee flavored ice cream for energy. I was holding the spoon. He got one or two little nips of it before quitting for the night.

NOW. What a word, now. It says so little a time like that, a time I would have had recede forward into the future forever and ever. This frail thing lying on the bed, blue hands, unresponsive, was all that was left of him. I flashed family pictures from my iPod in front of his now-sightless eyes. I played Appalachian Spring (I don’t know why I didn’t think of Patti). We applied wet Q-tips to his lips. (Q-tips were his secret drawing tool, the secret behind the light he gave to paper. Shhhh!!!)

Around noon one of his labored exhalations halted, returned and then turned into my name. “Ohh…. Supa…”

I knew right away what it meant, or what I thought it meant, even though he couldn’t say it. He was telling me, “I’m sorry. I don’t want to do this to you.” I knew he wished he could stay, but he could see at last there was no coming back to here. It was another seven hours before he stopped altogether, but there was nothing left. I didn’t want to stay, didn’t care if I was there for the “sacred job” of seeing him out. The vigil of waiting for the last breath… I’d heard of it. I had a kid in diapers. Once I knew there was no way out, or rather no way back, it’s not that I wanted to leave him, but I would have really loved to have an excuse.

And it wasn’t HIM any more. That body is not my husband. I’m not sure when he really left, or what it was that escaped, shaking, but that solid object there, porcelain and pure, is not him. I’d missed the ritual, invisible, secret, and private, of his passing. The last little bit wouldn’t be the hard part and wouldn’t matter, and definitely not to HIM. 

As it was, my little girl was sent home with my sister babysitting. My mother, his mother, one of Nana Margaret’s five adult daughters, who happened to stop by, and a neighbor couple, old friends, who had brought their dog by for “therapy,” craning around the bed like characters in some Dutch painting as his fate wound itself out. The air was tense and white; we were mostly frozen, some holding hands. There was no way out for us either.

I touched one of his elbows above the blanket we'd placed to conceal the macabre color of his paper-sensitive hands. At 7:07 he was gone. His noontime lament had been, or I read it as, an apology and a goodbye, a last call out to a partner who might or might not prove "stronger than you think."

The departure should have been a relief after the breakneck pace of deterioration we’d lived through since autumn.

The knowledge that my husband would die had been dawning for days. Even at that pace – 2 years since we knew? One? A month? (So many things happened those 22 months.) He was in hospice four days, not quite – at that slow pace I was too overwhelmed to even feel sad on that last day.

All there was to do now was to rest.

Untitled (Cancer Drawings), 2005

I didn’t want these works in the show, really. Please take something else, anything else.

They're just not representative of his work.
They were personal drawings, never meant for public exhibition.
I don’t think they’re really very resolved.

That’s not it.

I fucking hated these drawings.

Left to right: 1) With cancer, 2 + 3) getting better, making the cancer weaker, 4) without cancer.

Why?
They’re not successful.
How?
That fourth drawing. Maybe the cancer’s gone, but so are YOU. I can’t look at them.

He was doing meditation and visualization exercises. He conjured with line and color. He’s an artist, for chrissakes. And if this series worked? He would die. That fourth drawing doesn’t show a body any more. It’s a vapor, a wisp, a spirit. Perhaps something living, but nothing solid, not an ounce. And he was losing so much weight at the time. He was vaporizing in front of my eyes. At one point that winter he got below 100 lbs. He didn’t tell me till he’d gained it back, in the early spring. Sometime in January he’d lost the use of his right arm. AN ARTIST. He wasn’t writing me phone messages — he’d tell me, and usually forget to. I didn’t know that his actions were to prevent me seeing his handwriting. But that was it: tumors blocking nerves.

So I hated these drawings because they were a failure, they were supposed to show him getting better, but they showed him dying, and as art is always magic, they would work and I could at last blame him. I could relish my rage with him no longer around, but I couldn’t stand to see them. People saw them when they visited the studio those last few months, and at my Day of the Dead event. 

It was a year or two later when the curator mentioned he must include these moving, powerful pieces in this show, this big retrospective of the organization where we met — where I worked for five years, where Gavin had served on the board for six. I wasn't happy about his choice, but it was hopeless to persuade him to take something else. They gave him chills and he insisted they needed to be shown.

I had the better part of a year to get used to the idea of people seeing the four drawings, nearly the last ones Gavin touched. On the way to the loading dock I opened the portfolio and laid them out on my therapist's Aubusson. She looked them over with a gentle smile and a nod. “He knew he was dying,” she said.

The sky above the sea opened up. “Yes, I think he did.” The drawings had been a personal statement and his way of telling me, that I didn’t want to hear. The dance was over at that moment: the tension of what we couldn’t say, wouldn’t share, of his body departing. I’d been hoodwinked, but not really. He hadn’t LIED. He just didn’t say it directly. He didn’t push me. He didn’t want to leave. But he knew he’d lost power over staying.

I mean, why else a horizon line? There’s no horizon line if you’re going to live. It’s infinite, a glimpse of the divine, hope and hopelessness mixed up, but no joy, no physical body. The weather changes over this sea but there’s no sunlight. Gavin’s light always came from within. 

And he hadn’t said, I don’t think, that drawing four was himself, cured. It was the cancer, gone. He knew it before I knew it: of course he did. He had to. We couldn’t look straight at it. It was how we got by.

But knowing that he knew the end of his story, at least during the hours he worked on these drawings, makes it possible for me to see their loveliness and depth. Accepting what they were — how their failure was all in me, and not in his intention — enabled me to drop them off that afternoon, to look forward to showing them to you, to knowing I could tell this story without doom or pity, and that I could go back to admiring his eye and hand again, as it should be. The works were re-imbued with the normal mystery that it needs to hold your eye, once my rational distaste had left.

So I stood in front of them last night, in my Mexican shawl and good boots, and shared with strangers: “My husband the artist made these drawings when he knew he was dying. They were hard for me to look at for a long time, but four years later, I can accept them and understand what they were saying. I just didn’t want to hear it then, but denial helped me stay sane, and I’m okay now.

"Yes, I’m doing well, thank you.”

Grief, Loss, Tragedy and Community on the Internet: Audio from Panel @BlogHer10

Left to right: Cecily, Kim, Loralee, Anissa, and Peter

Finally, the audio file from the Grief panel that took place in New York at BlogHer10 on August 8, just a few hours before I did my presentation on online grieving at Camp Widow in San Diego. One of the goals of my show was to have a good back and forth on Twitter between the two panels, but spotty internet at both sites foiled my plan. UNTIL NOW!!! Well, if you have the proper equipment ... considering how hard it can be to get a lapel mike, time machine is probably going to be tough.

The panel featured Cecily Kellogg from Uppercase Woman, Peter and Anissa Mayhew from Hope4Peyton and FreeAnissa, and my wonderful friends Loralee Choate from Loralee's Looney Tunes and Kim Trimble from Live from the 205.

Don't call it closure.

I don't know if I've mentioned how similar Don, the fellow who just died, was to my Gavin. But he was. They were both artists, both intellectuals, both thin to the point of gaunt with angular faces and very short hair. And I found something rare, several synchronicities maybe, where these losses collided.

I drove up to Don's second memorial service last night, the art world one that he would have wanted, in the same city as the hospital, the hospital where Gavin was treated, and the trip brought back some memories and I got lost and it was dark and it's a fairly scary quaint little city. As I walked in late, a poet friend, who I'd reconnected with at Don's first memorial, was telling this story:

"A few years ago Don's good friend and mine, Gavin O'Shaunnessy, died, and at his memorial service, I wanted to read a poem, 'A blessing,' by James Wright. I didn't do it, because I thought I'd give other folks their chance, and they had other things to say, but after the service Don and I were talking and he mentioned there was a poem he'd wanted to read but hadn't [Don did get up and speak, but conveying a message from someone else]. The poem he'd thought of was the very same James Wright poem.

And I'd like to read it now for Don.

A Blessing
By James Wright*

Just off the highway to Rochester, Minnesota,
Twilight bounds softly forth on the grass.
And the eyes of those two Indian ponies
Darken with kindness.
They have come gladly out of the willows
To welcome my friend and me.
We step over the barbed wire into the pasture
Where they have been grazing all day, alone.
They ripple tensely, they can hardly contain their happiness
That we have come.
They bow shyly as wet swans. They love each other.
There is no loneliness like theirs.
At home once more, they begin munching the young tufts of spring in the darkness.
I would like to hold the slenderer one in my arms,
For she has walked over to me
And nuzzled my left hand.
She is black and white,
Her mane falls wild on her forehead,
And the light breeze moves me to caress her long ear
That is delicate as the skin over a girl's wrist.
Suddenly I realize
That if I stepped out of my body I would break
Into blossom."        

The crowd of art world people let out one of those fawning gasps they do, sated, like clockwork, after every profound conclusion. I might have let out some air too: I was being touched deep within.

What justice, what finality, that I was able to hear that poem last night at last, to eavesdrop on this distant conversation between two friends with whom Gavin had such rapport and such shared priorities. We never say closure, and frankly I don't buy it, but what a gift that was.

Then I got on stage and shared my own funny little memory of Don and how he tied his necktie one day (he and Gavin were both anal retentive, but Don would win in any showdown), and how kind he had been to Short Stack and I after our loss. How we stopped by once after seeing the Nutcracker nearby, and they'd connected, him looking so much like her Daddy and conquering a brief spell of fear of male strangers. How the last I remember of Don was my daughter's little feet padding after him down that long hallway. A fond afternoon at the time of day when a child can be so fragile, but she looked up at him with trust and interest.

The hallway where, three years later, as fate would have it but I didn't mention it, he lay alone, breaking down, for two whole days after a stroke.

Thank you, Don.

And when I sat back down the woman next to me mentioned she'd lived in the apartment just downstairs and had heard those small footsteps that day and wondered.

It was an evening of blessings.

* (Poem is totally copyrighted)

Wordless Wednesday: Our Day of the Dead ofrenda

The whole shebang

Gavin and his mother, Frances.

My Grandmother, who, at 103.5, outlived my husband.