"Death and Life," by Gustav Klimt

This piece was mentioned in the Peter Saul TEDx Newy talk I referenced in the last post. I haven't looked at it in years but I see much more now that I've been at the deathbed:

"Occupy Death:" A TedX Talk

Peter Saul, an ICU doctor, delivers my spiel, with actual numbers:

 

Gavin's Final Valentine's Day

Dear Supa,

Tonight, I was browsing through Facebook and I noticed someone posted a picture of their kid making a valentine. I burst into unexpected tears as I was flooded with the memory of the valentines-making party you held in February 2006. I thought about a night I hadn't thought about in a long time -- how we made great art as expressions of love; how happy Gavin was. I wanted to share that memory with you.

(heart) (heart) (heart)
Nellie

I'd nearly forgotten too, so I cried, too. That last year, as things started more quickly to fall apart, I hosted a party. I invited everyone (not just artists... neighbors, and kids, and church friends) to come over and glue things together. I presented them with our dining room table, stretched to seat 10, covered with an array of blank notecards and pretty much everything red or white I could find (art supplies of every type, odd bits of fabric, beads) and every damn sticker in the house, including cows, tiny ants, and giant Hello Kitty decals. It was what we had.

We used to host collage parties once in a while; sophisticated and very drunken versions had been part of Gavin's bachelor artist life. They had an idea of "collage" as a philosophy of life, maybe the opposite of deconstructionism: find an object and put it with another, apply glue, smoothe the seams. There were quiet collages that called moods, and rowdy Mardi-Gras'-on-Bainbridge-board wherein the man (or woman) holding the glue would cut up and stick together pornographic playing cards, calendar pages, snapshots of strangers, candy wrappers, and their own discarded, preferably torn, drawings.

One of my survival instincts is: if you don't know what to do, invite people to be messy with you. February 14, 2006, was a day when we projected. We put our love down on paper and we used anything we wanted. My little girl, barely 2, created some notable compositions, quieter than I expected, each complete and clearly satisfying to her. Nellie, our beloved babysitter, came with most of her family. A few artists, a few beers, and we had a party.

That February was one of the months Gavin "lived" on the couch under the eroding spell of Nexavar... he was not happy most of the time. But that evening, he shone to see people. It was the right kind of energy to bring into the house.

I could not keep it together that February, as Gavin died, none of us could say the right thing, ever, but somehow, gluing things on paper and sharing our confusion with everyone I could find was the right thing to do.

(This year, we did a quiet celebration, Mr. Fresh and Shortie and I. We weren't fighting off any immediate disasters, but we could have ice cream with crumb cakes and I cut a few dozen strawberries into hearts to ornament the plates. Hence, the image above. This year, getting by, showing love, takes a different form. 

I have those valentines from 2006 somewhere, but I want to relish these cut up berries just as much because that's what this February has been about... plus they were delicious.)

The Hardest Words I Ever Had to Say

 
How do I even start to cover my biggest topic — the one which has covered me for so long? The subject of dozens of blog posts already: the relationship my late husband and I shared with Death. Cancer was the horse it rode in on, but cancer was easy. You can fight fight fight! There is research! There are communities. It’s engrossing, engaging, and encouraging. I can’t tell you anything about that that you haven’t already heard.

What I can tell you is, the most important thing I ever told my husband. After, of course, I love you. 

Gavin spent his four last days in hospice. He had been living with a terminal diagnosis nearly two years; he’d survived two brutal surgeries, including one which failed, and five (I have to write them down to be sure) drug therapies: injections, infusions, pills, pills, and more pills. The last two were the two latest possible, delivered in his last six months, at the cutting edge of treatments and not even on the market yet. (We were familiar with the code names for all the investigational drugs in all the pipelines). And he was getting an increasing number of what are humanely called “opportunistic infections” but would be called demons in earlier days: shingles. Candida. Pneumonia. An unspecified bacterial infection. An unknown fungal infection.

To paraphrase D00ce, that all sucked, and we had a kid in diapers at the time.

We never went to bed angry, but we had a lot of really bad days. Every day we said “I love you.” That was easy and it was important.

But the third day in hospice they told me: You have to tell him he can leave if he needs to.

Did I tell him? I don’t remember. I regarded it as a duty to tell the quiet parade of his closest and oldest friends visiting: Before you go in there, I'm going to ask you to do me a favor: please tell him you’ll take care of me and my daughter. Please tell him he can leave if he needs to.

Those were the hardest words I ever had to say. I said them over and over. It was almost as if I was hearing it, too… the repetition helped. We’d entered hospice saying “this is to rebuild your strength.” I hoped he’d recover enough that they’d let me take him home and I’d have lots of help and he could die, surrounded by his adoring family, in a bed in our living room. You know, a month or three later. After his birthday party, after fair goodbyes, after making peace and in a state of blissful acceptance.

Instead he died two days later, in a bed in that same hospice, surrounded by his adoring family and a few friends and a miniature schnauzer-dachsund mix.

“The end” had been so far away for so long…. We danced with it. I asked a close girlfriend if it seemed, when she visited during a very, very bad period, that we were ignoring death, like an elephant in the room. She said, No, it was more like a kitten in the room, and every now and then one of you would lean over and pet it to pay some attention. You couldn’t ignore it, but you didn’t seem afraid, and it wasn’t that large.

But we had ignored it at times: we'd done everything. We’d shaken our fingers at death, looked it in the eye and screamed, we’d tested it, we’d tried to push it around. We’d made allies against death, and we’d bargained. Bargaining is pointless when you have no idea that May 31st will be the day you have to say, “it’s okay to leave if you want to.”

We never said goodbye. That was hard. Not that I felt it until later… there was no question he was “gone”… but it’s a romance that’s unavoidable, and it stung only as I hit everyone else’s expectations of what “the end” might be like, repeatedly, in the months and years following. But small stings, nothing like those we endured when we were losing our fight against cancer.

When you’re still fighting, you want to know the names of that bacteria and that fungus. When the doctors tell you it doesn’t matter, you begin to hear it: this is the end.

Don’t get me wrong… this is not about Elizabeth Kubler Ross and the Five Stages of Dying (not "of Grief"… but that’s another post).

But I wish we’d accepted that death wasn’t a kitten any more. I wish we’d let hospice in sooner. We thought we would… when it was “time.” We had talked about hospice, earlier in his illness. We loved the idea of a “good death.” But doesn’t everyone just want to live just so, so much more? But the closer that “time” got, the deafer we became to its knocking. Who could live with that sound? We turned the Baby Einstein videos up louder. We stopped asking Dr. Google about symptoms. We got mad at the oncologist.

Now that I have met hundreds of people widowed after long illnesses, I see that the elements of my story are ridiculously common. Pretty much every single one except the exact details, the dates, the drug names. But the deep ones: the hard ones, the emotional scars and fights and invisible enemies. The damage done, not by not knowing (because there’s nothing we can do about that except yell at God and doctors), but by not talking and not accepting the oncoming end.

Cancer may be a battle, but life is not. Life is to be lived and for love, and that is hard to really embrace during wartime. By the time he died, it wasn’t cancer any more. It was pneumonia and our unnamed bacterial and fungal enemies, and organs breaking down, one by one. At any rate, our oncologist had signed off long before: that’s a sign.

That’s what I hear when I hear about fighting cancer on the internet. That’s what I flash back to when I know a cancer blogger gets an opportunistic infection. That’s what it was like, and I can remember the detail and the complexity, the numbness and intensity intermingled, when one of my closest friends tells me that her close friend’s family won’t talk about what’s next when her lungs are filling up with fluid. Not quite triggers… memories of deep and dark times, and I feel huge lightness after finally sharing my side of my part of the story.

That’s how much is still in my brain and body and heart seven years after diagnosis, five years after his death. And oh, how I wish I could change it for every single person reading this.

C.S. Lewis on Courage

By A. E. Brehm [Public domain], via Wikimedia Commons

I may be the only one who puts resolutions into place during the last few weeks of the old year, but I've committed to spending more time in my so-called "real life" and less time online. I've been reshuffling activity between my online identities, including one under my real name that's professional and focused, and this blog has suffered the past few weeks. I'm working on one very large project for widowed folks though, so have no fear: I'm still here. There's just more going on behind the scenes than any of us are used to. But here's one thought from the last few weeks that I thought I'd share.

My daughter and I have been reading The Lion, the Witch and the Wardrobe and C.S. Lewis is truly one of the great writers -- not just for A Grief Observed, to which nearly all widowed folks are referred -- a previous generation's Year of Magical Thinking, but one that endures. 

Lion is a vivid, brief, rich story, deeply moral, a highly original (even now!) illustration of the battle between good and evil, the one I *so* do not want to believe in. But this is the page that speaks to me as I am now, brimming over with the telling of Gavin's last months: 

Peter did not feel very brave; indeed, he felt he was going to be sick. But that made no difference to what he had to do. He rushed straight up to the monster and aimed a slash of his sword at its side.

Because widowed people -- universally -- complain about being called "brave." We have no choice about it, but are pushed by circumstances, sadly beyond control, to do what others see, perhaps, as exceptional. We'd so much rather not be brave that to be called brave is heard as an insult.

And caregiving a loved one -- for me, living with a husband who was literally dying before me, in front of my eyes, and twisting and turning together with the changes that were sent our way -- is an act of sickening duty. Yes, I'd take each step forward, quickly and from love, but as I realized what was required, any time there was a pause, I'd freeze and half-step backward. There wasn't any way to breathe as I lunged ahead. No way to say "yes" to the job, to being his companion, to finally, letting him leave me behind (or was it the other way around?).

No one volunteers for this. Those that do -- who work in hospice, who make a life from caring for humans in this stage of transition -- must not feel ill at it.

But the rest of us find our compassion choked, a bit, by the forward motion and how little resistance we're able to put to it. And we run through, because the only way out is through, perhaps sometimes we're ill as we go (does everyone puke while they're having a baby? I did -- it's not unusual -- why isn't it part of our image of this dramatic change of life?) but we can't stop for long, and most of us get through, and then, finally we can breathe once more. 

And then you get to grief. And grief, at least, is a part of life. But more on that anon.

Elizabeth Edwards (1): Talking around death

What a trigger it always is when a public figure battles cancer, especially when the cancer wins. It hurts less and less each year (each month even, moving at a fast pace as I approach five years after my loss), I'm less and less called to shout out to their partners, to cry in the streets, to feel it in my own bones that there will be another small emptiness somewhere in the world soon.

But I still feel it, and I still want to respond as an authority — to laugh like a disrespectful teenager when a newscaster asks, as above (earlier today, before she passed): "What does that mean, to say that 'further treatment would be unproductive?'" It means they're dying, you simpleton. Did you know, anchorman, that people are meant to age, to lose hair, to wrinkle? But we need an explanation. It's not enough to say, "they are dying," or as I would tell my child, "their body is starting to slow down and doesn't work as well any more." It's got to be concrete, physical, specific, and not use any trigger words like "death" or "dying." That's not enough: nature's not enough. We have to explain, and understand, and take it one step at a time.

So Dr. Gupta talks about fluids building up and so forth.

Why is it not enough to say, as they have, "she's at home among family and friends"? That would be enough to make me totally jealous, of both John Edwards (as myself) and of her (in the role of Gavin).

I didn't know any better either, though I wasn't on the news, and my crazy hair had nothing to do with that. I remember the last hospitalization — the week he spent in the CICU before "we" were sent to an inpatient hospice. Here are some ways the ICU doctors and nurses tried to explain dying to me in their own concrete, observable, ways:

• Yesterday afternoon he lost the ability to walk over to the toilet in his room [it was ten feet from the bed]. Sudden loss of strength is a sign that someone is dying. 
• He's getting discouraged. 
• From him: "Just get me out of here. Anything, just to leave here." 
• His body has been fighting really hard for a long time. 
• Actually, his heart function is higher — at 40%. This often happens as the other organs get worse, like a rallying. But the heart function doesn't change the picture at all. 
• So, he's been through all the treatments that are customary for this cancer? 
• Whole brain radiation is a brutal therapy. I don't think there would be any benefit to it in his case.
• I'm not his doctor any more. On this ward, we only supervise cases for 24 hours unless there is a positive change. Unless you want to start an aggressive treatment?… which I think I said I didn't recommend, when I was on his case…? 
• This is a bad ward to be in. More than two thirds of patients who are here die. You said you don't want him to die in the hospital… you have to get him out of this ward soon. 
• These infections he's fighting off… they mean he has no immune system left. [It seems so vicious, counterintuitive, petty, impossible to be felled by a fungus or a yeast infection after two years living with giant tumors!]
• More antibiotics wouldn't make a difference at this point. — His organs are shutting down. [I started to hear it]
• His body is showing color changes that indicate the dying process has begun.  [I got it.]

It's a damn good thing they don't keep bricks lying around in ICU wards.

I understand the need for science-based medicine, for diagnoses based on observation. I know I wasn't listening at all. I don't fault anyone for anything they said. I loved the care Gavin got in that CICU, as bad as the staff (wonderful people!) kept trying to tell me it was for him. I am even trying to forgive myself and my ears for trying to protect me.

I have a dream that I am part of a culture where we can hear the words, "he's dying," and not disassociate. Where science is wonderful, but the words "he's at home, among family and friends" send a clear undeniable message to us all. When I will be changed too, as part of this change; and I will be able to live and die in this brave and humble world.

But the newsmen still annoy the hell out of me. Just a little.

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.