"Occupy Death:" A TedX Talk

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

 

Schedule A: The Anal Retentive Widow

Look what I found while hunting for this year's tax information.... Notes from the anal-retentive widow, who used to do her taxes herself. Wait, I'm talking about myself in the third person again... which, I suppose, is only appropriate? It sure feels that someone else prepared this spreadsheet....was I this organized once? On the other hand, this remained buried the past five plus years. (On the other other hand, that's what we DO with yesteryear's tax schedules, isn't it?)

Whew. Don't ever tell me that I underthink anything.

Category	Type	Description	Condition	Value	Quan	Ext.	Action
clothing	pants	linen or linen-blend	v. good	$6	4	$24	Value Village, July 2006
clothing	pants	lightweight, dress	good	$8	2	$16	Value Village, July 2006
clothing	pants	lightweight, casual	good	$6	9	$54	Value Village, July 2006
clothing	shirts	dress, l.s.	good	$6	7	$42	Value Village, July 2006
clothing	shirts	dress, l.s.	okay	$4	5	$20	Value Village, July 2006
clothing	shirts	casual, s.s.	good	$5	5	$25	Value Village, July 2006
clothing	shirts	linen or linen-blend	v. good	$6	5	$30	Value Village, July 2006
clothing	shoes	brown leather	good	$5	2	$10	Value Village, July 2006
clothing	shoes	athletic	good	$5	2	$10	Value Village, July 2006
clothing	shoes	sandal	good	$5	1	$5	Value Village, July 2006
clothing	shoes	white canvas	okay	$3	1	$3	Value Village, July 2006
clothing	shoes	black plastic sandals	okay	$3	1	$2	Value Village, July 2006
clothing	shoes	black leather velcro	okay	$3	2	$6	Value Village, July 2006
clothing	coat	khaki windbreakers	v. good	$10	2	$20	Value Village, July 2006
clothing	coat	black wool	almost new	$4	3	$40	Value Village, July 2006
clothing	shirt	black hoodie	good	$5	1	$15	Value Village, July 2006
clothing	shirt	sleeveless gray hoodie	almost new	$5	1	$5	Value Village, July 2006
clothing	shoes	black high boots	good	$15	1	$15	Value Village, July 2006
clothing	shoes	brown ankle shoes ll bean	good	$20	1	$20	Value Village, Aug. 2006
clothing	shoes	painty black shoes	bad		2		tossed
clothing	jacket	wool tweed blazer	v. good	$18	3	$36	Value Village, Aug. 2006
clothing	misc.	wool hats	good	$5	8	$10	Value Village, Aug. 2006
clothing	misc.	wool scarves	good	$5	2	$15	Value Village, Aug. 2006
clothing	misc.	warm cotton socks	good	$1	2	$8	Value Village, Aug. 2006
clothing	misc.	wool socks	good	$2	1	$4	Value Village, Aug. 2006
clothing	misc.	sets thermal underwear	good	$10	1	$20	Value Village, Aug. 2006
clothing	pants	ll bean flannel lined chinos	v. good	$12	1	$12	Value Village, Aug. 2006
clothing	misc.	set high tech thermals	okay	$5	1	$5	Value Village, Aug. 2006
clothing	shirt	flannel shirts	v. good	$7	4	$28	Value Village, Aug. 2006
clothing	pants	wool dress pants	v. good	$10	3	$30	Value Village, Aug. 2006
clothing	misc.	red wool skirt (Supa's)	excellent	$10	1	$10	Value Village, Aug. 2006
clothing	misc.	gray synthetic tunic	excellent	$10	1	$10	Value Village, Aug. 2006
clothing	shirt	lt blue velour shirt (Supa's)	excellent	$5	1	$5	Value Village, Aug. 2006
clothing	pants	green khaki pants	excellent	$3	2	$6	Value Village, Aug. 2006
clothing	shoes	ll bean loafers	okay	$5	1	$5	Value Village, Aug. 2006
clothing	misc.	leather belts	okay	$3	5	$15	Value Village, Aug. 2006
Total	40					$445

So there is your answer to what I did all those lonely nights... a piece of my bureaucratic trash, and one even ABOUT what I threw away... Somehow I have a feeling this will resonate with some others, too, as one of my most popular posts (which I also thought was a throwaway) did.

It does make it easier, as housekeeping guru Don Aslett says, sometimes, to write it down before you say goodbye. I'm a born pack rat: this stuff is hard work. I read his books, including Clutter's Last Stand, multiple times to gain the strength (and techniques) to get rid of hundreds of pounds of stuff, and I'm still awful. (I'm fine, of course, with other people's stuff... which you might THINK this was... but no.)

The feelings I must have had as I put these items down in rows and columns... so much of that is left now as I review this. I am surprised to see that I really did give away so much of his clothing within a month or two (he died 6/2). The spreadsheet makes it seem "verified."

The brief descriptions are so evocative... some of the items reappear in my mind as I skim the list. I remember in vivid color, for example, the day we bought the "gray sleeveless hoodie" at H&M after a long search (it was from the women's department). Others are like-Gavin by their non-specificity: 9 pairs of "lightweight, casual" pants. I always teased him about his affection for his khakis, he was a little obsessed with finding ones made of really thin, sharp cloth. One year I'm sure I gave him a pair of chinos for Valentine's Day. What a picture of the two of us that tells, eh?

I'm shocked I had the pride to itemize socks at $1 a pair and at the same time, the disregard to throw away precious "painting shoes." I can still see their shape in a white plastic trash bag, like everything that leaves the house. Well, nearly everything.

This stuff talks. It really does.

And I only have about 40 boxes (and 200+ drawings) left...

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.)

Sh*t People Say to Widows (Video) is DONE!

Here, at last, is the video we created together: "Shit People Say to Widows." Guaranteed 100% authentic quotes from (mostly) well meaning friends, family, and colleagues. Featuring comments submitted by a few dozen widowed people from my community, WidowedVillage.org.

Share it as much as you like... please! It was a lot of work and many, many people contributed.

Thank you!

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.

"Sh*t people say to widows:" Please participate!

The video is DONE! Check it out!

This is the old post with the instructions... skip it!

We are making a group video called ""Sh*t people say to widows" based on the "meme." If you're not familiar with them, here's a list (Watch out…some of them are pretty offensive and some of them have commercials). If you wish to watch only one, this one is very good ("Shit white girls say to black girls"):


This is a group project and we have to work FAST. Please read all the way through. I would love to have all submissions by next Tuesday, 1/24!

Between the thousands of widowed folks who read this blog, are in WidowedVillage.org and my FB pages, we will have TONS of insensitive comments that people say to widows and widowers. Want a taste of the material we've lived through? Read this, this or view this adorable and nasty video. There are also two threads on my FB timeline, each with more than 100 comments. We haz steam!

Want to participate?

You can contribute a quote or a video.

-- To contribute a quote, just fill out the custom form I created.

-- To contribute a video…… 

Email me your SUPER-SHORT videos. They should be less than 5 seconds each! If you want to do more than one, that's awesome, but make each video separately.

Tips:
    •    JUST perform the quote… don't explain it, don't tell us background or who it was. JUST THE WORDS.
    •    Yes, you can film it on your phone.
    •    PLEASE film it in LANDSCAPE orientation (sideways). Try not to be so close that you can eat the camera, and I'd rather you weren't looking down at it (less flattering position anyway). If you think it might be too dark or there's too much background noise... do a test film first.
    •    You do NOT have to use HD video and if you have the option, turn OFF HD video.
    •    You can use any background including your regular old house BUT make sure there are no identifying details like family photos or street signs or anything.
    •    As for attitude: You want to be imitating someone. Pretend you are the clueless or rude person.
    •    You can wear a wig or schmatte on your head, or a costume, if you like, but that's not important. Doing this FAST is important!

If one of you would take a bunch of short videos of yourself eating a bag of chips while looking away from the camera, in different settings, that would be very, very awesome too. Somehow that flavor is part of the series. I nominate Robin Craig and a bag of Beanitos!

When you send your clip to me, tell me in the email if you wish us to use your name in the credits… or a pseudonym, or nothing. Make sure you use the email -- if you post it to YouTube I can't use it!

Email me if you have any questions. Comments are great, but please use the form or an email if you have a question about the project that needs to be resolved quickly -- I will get those sooner!

Deadline extended due to your awesome response!!

Don't forget -- Send your 5-second (or shorter) video clips to me by Tuesday 1/24!!!! Thursday 1/26!

Thank you and yaHOO!!!

ISO: A miraculous birth

Since this request crossed my “desk" just before Christmas, and I am a bit nativity-crazy anyway (the above image is of one of my molded guest soap sets, “No Room at the Inn”), and even though IVF is not really (quite) immaculate conception, I couldn’t resist this metaphor. Not that I am known for my restraint anyway.

But, here is the situation: A U.S. non profit organization is looking for a woman who conceived a child *after* her partner’s death. This would involve (one imagines) using banked sperm. They’ve asked me to ask my communities for help.

And this isn’t going to be easy. Out of the several hundred stories I’ve heard from widows, I have only known of one family in this situation, and she (the Mom) has shut down her blog and completely disappeared under what I recall as very tense circumstances.  I know dozens of women who were widowed while pregnant and many widows (and a few widowers) with banked sperm or eggs, and even embryos from prior IVF attempts. I know scores of widows who had children with new partners after being widowed, and as huge a joy as each of those births is, it sounds positively Mayberry compared to the rare situation we're looking for.

There must be thousands of cancer patients (including teens) who store sperm or eggs before undergoing treatment, and we know that not everyone survives cancer. (Well, I know that pretty well. Overall 5-year-survival for all cancers, without respect to age or patient’s interest in having children, is something like 60%.) Things change rapidly: services for young adults with cancer didn't exist ten years ago, and IVF is not only more common, acceptable, and accessible than it ever was when we were seeking conception, but loads more successful as well.

So I'm hopeful: If you are this Mom, or you know this Mom, please contact me and I will connect you with the folks who are seeking this rare and — you have to admit — at-least-a-little-bit miraculous family.

Is it better to give than to receive, or am I crazy?

Is it really better to give than to receive?

I have come to think it is, for me, at this time in my life. Why and how is a complicated alchemy of heart, mind, and science.

For one thing, by being in a position to give, you are inherently doing okay. Giving forces you to see that you HAVE. This awareness is itself a kind of gift.

Giving encourages you to be intimate with need -- to direct your gaze at a gap. You might become aware of the sting of your own emptiness; you might see how easy some needs are to fill, which might (for just a moment) make life seem just. Often, when we give, we see that others have needs greater than ours. In our own needy places, we have closed our eyes.

Always, when we give, we know we are not alone. We find we can make a difference.

Science shows us that altruism feels good: performing a good deed, volunteering for a cause, or even the abstract and removed act of writing a check has been shown to release endorphins, the body’s natural feel-good hormones.

It was hard for me to get comfortable giving away, of all things, MONEY. I have always been a tightwad and for most of my life, I've had to scrimp just to keep my own interests alive. But when I started to share my income with projects I believed in, when I sent my money out beyond my household, my brain started to process just HOW money gets things done. In my heart, I felt that I was engaging in the world again, just a bit, after a long period of isolation.

All of a sudden, I wasn’t just USING. I was PART of whatever it was. Take my church. By making a decent sized gift each year — giving a portion of my income, paying the church FIRST, not some bit when everything else was left over — I became an investor. And “investment” refers equally to having a financial stake in something and keeping your heart there.

Giving enabled me to connect in a different way, one that I had never had. A peculiarly ADULT way. One with not only dreams, but also responsibilities.

I give as generously as I can because honestly, it does feel good to me. I give to a few organizations that do things that I feel need to be done. I give because I want them to keep going. I don’t care if they spend what I give on boring stuff like copier paper, but that’s just me. I expect them to handle the money responsibly but I also expect “my staff” (see how that happened?) to be paid fairly.

The largest share of my “schedule A” giving goes to Soaring Spirits Loss Foundation (SSLF). I support SSLF because they are building the programs that I wish had existed when my husband died in 2006 (the first Camp Widow was held in 2009). SSLF shares my vision and they allow me to help (I now serve on their board). They allow me to help a LOT. Soaring Spirits was the partner that enabled me to create WidowedVillage.org, a dream that was too big for just me to handle. With them behind me, that small community is part of a much larger world of support and connections for widowed folks.

And I do all this work because peer support saved my life. SSLF is providing that same kind of comradeship and hope to thousands of widowed people every day. SSLF builds these connections in creative and important ways. If you’d like to say that SSLF programs are yours too, make a gift.


Every gift matters. It might be easy to feel that your individual gift is not the kind that will make a difference. It’s probably pretty easy to imagine that someone who’s doing a lot better than you can afford to give a larger share. You might think that lots of corporations and foundations are willing to fund SSLF programs right now. Would you believe me if I said that neither of those things is true?

But I know you recognize this story: the intense relief and gratitude in the face of someone who for the first time, meets another widowed person they can relate to. It's astonishing: you share one small experience or feeling with them and all of a sudden, they "get it" that you "get it." Their eyes light up. They don’t feel you made just a small contribution. For that person at that moment, the world stops being completely broken and becomes a world where a bit of light is visible through one of the cracks. These connections are our path to hope.

SSLF is lean and growing rapidly but dependent on individuals like you and me.

Our new site on StayClassy makes it easy to give once, or set up a recurring donation. If your gift means something to you, believe me, it will mean something to this organization and to all the people we will serve next year.

So think about it… and tell me afterwards if it was as good to give to Soaring Spirits as it was to receive.

You can make a safe, secure gift to Soaring Spirits programs at http://www.stayclassy.org/fundraise/team?ftid=4358.