Kids and the School Shootings: 7 Tips Left Out of EVERY Article I've seen

I couldn't keep silent.

Tell your kids you don't understand, either.

There are some VITAL points being left out of EVERY article I've read about "how to talk to kids about the school shootings in Connecticut." Yes, my heart is heavy; yes, it's terrible, and yes, many of us are having knee jerk reactions about gun control, religion in schools, and so on.

But, as a widow and parent of a sensitive, resilient 8 year old, this is in my wheel house, it affects you TODAY, and it's important. So I'm just going to write about those bits that have NOT shown up in the many articles shared by my more than 2000 FB friends, on my neighborhood, PTA, official school, and church list servs.

In general, these tips will help you with elementary school age kids but they may be useful for your own emotional health or with talking to older kids or even adults. Every child is different -- listen to your instinct and your experiences about your own individual child and do what works with your own parenting style. If you recognize something negative about your parenting style from what I say... well, crises can teach us things, and today is a new day. 

So listen up.

1. Make your words honest and age appropriate. DO NOT LIE to your kids and do not try to conceal what happened. You WILL learn a lot if you listen well to their questions FIRST and this in some way works best if you talk less, and if you don't start the topic. You do NOT need to give them more details than they ask for. Many articles have been saying, "don't bring it up" and I hear a lot of parental discomfort with this point. Well, this does depend on the context. You may feel the need to control the story -- and at some ages, in some school situations, this may make sense. I find if I keep in mind that phrase -- honest and age appropriate -- it helps A LOT.
2. Be honest about your own feelings. OK, this is mentioned in SOME of the articles but it's too important for ANYONE to skip -- and it is the one, that, in my experience, parents are most likely to be uncomfortable with. One of our most important tasks as parents is to demonstrate to kids that feelings -- sadness, anger, fear, helplessness -- can be overwhelming. It is not their fault, it's not only them, and it's part of being human. As they grow, they will learn (from you!) how to manage this sense of overwhelm... which is VERY scary, especially at younger ages. DO CRY in front of your kids. If they don't like it... help them understand it's natural and you can't control it (or maybe, you might say, "it's dangerous to cry while driving. Mommy's going to pull over for a minute." It is also up to you to model for them how to handle this intensity. 
3. Share also HOW YOU DEAL with intense feelings. Do you hit, clam up, try to shove it down? Your kids can tell EXACTLY what you are doing. My daughter notices from tiny movements of my eyes or lips when my thoughts or emotions have shifted. Don't think you'll be successful at hiding your feelings from your child. If you're in a bad mood, you can say so. If you're sorry you reacted a certain way, say so. DON'T apologize for your feelings or for healthy manifestations of those feelings. Play loud music, go for a walk, have a comforting snack. Drink water to remind yourself to take care of yourself. Breathe to calm down. These are sophisticated tools peddled by gurus, but you know them. SHARE your good ways of coping with your child. (If alcohol is part of your coping, you probably want to hide that, okay?)
4. Depending on your child's age, share your uncertainty. An important part of your message is that you, as parent, are not able to control what happens outside in the world but you will always listen and you will always (poof!) be honest. Caveat: this is less useful for younger age kids who may feel scared. You should reassure them that they are safe and that you and everyone (school staff, police, local and national government) is doing everything they can to keep kids safe -- and that these terrible things do not happen very often. A side effect of providing this reassurance is that it may remind you, too, of a larger perspective and your real safety.
   If your child asks a question you can't answer, say "I don't know" or "I wish I understood, too" or share something from your faith tradition. DO NOT TRY TO CONTROL THE STORY and do NOT force your point of view (religious, political, whatever) on your kids. This makes you look "shut down" to them when you MOST want to be open to their questions.
5. Give kids time to process. Understand that kids learn things AS THEY GROW. We often explain children's grief -- and many other topics in emotional and cognitive development -- as "like peeling an onion." Children's feelings and thoughts unfold in layers. You may have a concise and terrific talk with your kids and they don't ask questions. You may be disappointed or push them. Let them lead you -- they may just want to go off and play. They will ask more questions later IF you make it clear that you are listening, not terrified of the topic, not reactive, do not have an agenda, and that you are fine with them being "slow to understand." (They're not slow -- but parents are often impatient). Big topics tend to unravel slowly, to be understood over time. New contexts, other developments in their lives, and the cognitive growth that is the main quality of childhood, will mean that they ask you similar questions over time (take each one seriously... they are actually asking something different). It will mean that a question pops up when you least expect it or when some rigid family member is visiting. You can handle it by being....
6. I'll say it again: HONEST AND AGE APPROPRIATE. Keep this in mind, because every few months, as your kids grow and learn, and the new questions come up, the meaning of "honest" and of "age appropriate" will change, too. 
7. Respect your own feelings and understand that your experience of this may be completely different from your kids' experience. It's okay for you to take care of yourself, too. Get comfortable with the fact that you can't control the world and that our own feelings can sometimes feel like "too much." Your comfort level will enable your children to "hear" that you are open to questions -- even though we know you don't want to handle this terrible topic AGAIN. Dealing with "shit that happens" (in all forms) is part of parenting and part of our world and you can handle it.

Okay, end of lecture. No, not quite:

I learned this stuff from being a widow and parenting my grieving child. BUT, the more I learned... the more it was really about my own spectrum of emotions and accepting responsibility for parenting in an uncertain world. Parenting a child through this kind of crisis is not all about "grief" -- a topic that too many people find intimidating or frightening. Most of these tips are really about life. When you really think about it, there is very little in our kids' lives we can control. But we CAN help them through it, and we can learn from them.

I know these tips are not concise. I know there is a lot of intermingling and melding and overlap between them. I wrote this quickly and when have I ever done that?

And it's not complete. I'm assuming you've already read at least 6 articles. I still hope it is helpful.

Please, share. 

(Possible) Cover of the Rolling Stone: Old Beastie Boys Pix

That kid is so pissed.

Some more photos of the Beastie Boys from 1982... never-before-seen:

I remember when I took these photos, which were part of a long session we did for Cooky Puss, in Washington Square Park one late winter day. The boys (and girl) were in costume from playing modified Candyland at Kate’s place, and they had some concept that the park would be like the game board. They wanted pictures of them skipping down the asphalt paths in the park. Eventually one of these skipping shots was used, in silhouette, on the paper center label of the Cooky Puss 12”.

You don't see something boybandish?

I don’t remember if it was my idea or theirs to shoot them looking down through the monkey bars, and on top of a phone booth and in other silly places. But I remember that I was going for a certain Beatles-type cliche: 4 adults staring down through a network of handbars, and I recall vaguely that they did not particularly enjoy this. I had fantasies, somehow, that I was Annie Liebovitz, pushing her subjects a little too far for the sake of that perfect Rolling Stones cover. I was 15 years old.

Which makes it a little weird to be responding to both an editor and a photo editor at Rolling Stone about a possible, actual real life cover image.

HOLY SHIT.

(Visit my Flickr if you want to see all my shots of the early Beastie Boys in higher resolution.)

I’m sure talking about my photography seems off-topic for this blog, unless you’ve been reading for a very long time or dredged through the archives (poor you) to read the origin of the blog name. Which is:

Marcel Duchamp did a piece called “Fresh Widow” in 1920. All you really need to know is that it’s a French window. However it’s miniature, it was an open edition and almost a “ready made” except for black leather applied over each window pane so you can’t see through. The piece comes with a command that the leather be polished every day. There’s one in the MoMA (which I grew up with) and one at the Philadelphia Art Institute. It’s perverse in more ways than one; look up interpretations if you’re intrigued.

Duchamp, handsome American living in Paris and mingling with the mostests, has been one of my lifetime idols. Not least of all because late in life he insisted he’d given up art and was only working to play chess (though he was lying about it). He seemed gentlemanly and unsloppy in most every way, and he was always funny and upsetting. My man, right?

I thought, as a newly minted widow, that I might open that toy black window. I thought my hair would fly back in the wind. I thought of what you can see when your eyes are closed, or with the lights out, or when your own light goes out, and I knew there was an exhilarating truth to it.

I wanted to own that, so I took its name.

(The silly “Supa Dupa” part came when I added the Pillsbury Doughboy and Missy Misdemeanor Elliott to the mix. I thought you had to have a fake name in addition to your blog name, some kind of rule.*)

So although I have spoken only of my widowed life and grief and mostly closely related topics, I hope you can see I’ve been leaving stuff out. For various reasons… and this has never been a daily-life-as-it-happens blog, never been totally “the real me,**” never been my place to drop today’s dump. I do enough in social media I don’t feel I can do too much of that anymore, anyway. And I’ve tried to do a “real” blog for my professional life but that hasn’t been too effective because the community work I do with widowed people is the vast majority of the work and where I get most of my credibility.

The full picture of me includes not only today (remarriage and all), not only venting, but also my history as an artist and my future as whatever I end up doing for work tomorrow.

I am an artist at heart… I was raised by artists (wolf artists, apparently) and spent most of my time with artists doing art things. I have abandoned being an artist at least ten times in my life: for my mental health, for an education, for health insurance, for money, for a good marriage. I never went far… each job until the last one had a strong visual component, and my late husband was an artist. I felt close to working by supporting him in his work, for many years.

But it wasn’t the same. Though I’m still at a turning point in my professional life — how long has it been? — Creating and working with images will always be part of my process of understanding the world and my place in it, whatever form my work takes in the next few years. And even if I don’t actually keep MAKING stuff, saying “no” to it over and over again was pretty bad for me.

How can I encourage you to be true to your grief and your truth if I can’t even listen to that obnoxious little punk, my artists’ soul, screeching at me? She sings, lovely, if I listen closer.

So  I’m back to listening a bit more. Which is good, because the phone is freaking ringing about a whole nother set of photos that I took when I was a teenager before I considered health insurance, money, or true love at all.


And I gotta go pick that up.








* I am kind of famous for thinking life has rules for things that are simple and ungoverned.
** Though by now, anyone who cares does know my real name.

Camp Widow: First East Coast Event. A review.

This was the first time we held Camp Widow on the East Coast. It can be hard to explain what we do there, and the words "bonding" and "learning," while true and important, just seem so pale. To give you some idea of the impact of bonding and learning in real life, it might help if I tell you the most common phrases in the event reviews tend to be "life saving," "totally amazing," and "thank you." Or I could give you the numbers:

• Five: Camp Widow West this August will be our fifth event in 4 years.
• One hundred and nine: Camp Widow East was experienced by 109 widowed people, ages 23 to 82. Their losses were very recent (just a few months) ranging to 20 years ago. 
• Forty: This year Campers will choose two full days of programs from more than 40 presenters. These include experiential classes (yoga), creative ones (blog slam, writing intensive), and learning opportunities (childhood grief, dating, spirituality). Camp Widow programming evolves every year.
• Half: More than half of Camp attendees are also members of Widowed Village, Soaring Spirits' online community, which I founded. They entered the weekend with a few familiar faces already, and able to continue to share after the weekend ended.
• Fifteen: For those who enter "fresh," knowing no one, we now have two orientation events in the first few hours of Camp and our kickoff cocktail party included a fun "15 seconds" icebreaker event. (Not the "fun" kind you do at professional retreats... one that is actually fun). 

Me at the WidowedVillage.org booth

And what do you do at Camp? What does it look like? Maybe some pictures will help fill it out.


Camp Widow Snapshot: Here's me at the Widowed Village booth, with visual influences ranging from Lucy from the Peanuts comic strip and a bedspread hand-embroidered on the steppes of Uzbekistan.

We gave away chocolate and wi-fi (most of the time) and free bookmarks. (The kind you stick in books.) (Paper books.) 

A lot of what Camp looks like is like any event at a hotel, except: that a lot of people are crying, especially in front of their Tribute Tiles. Unlike events in the real world, no one is avoiding the people who are crying.

Some people are listening very intently... others are silent. Some stand around in groups. They laugh or hug... No one looks weird at the people who are laughing. Some sit down exhausted on a chair and check their phones.

There's room for anything, including skipping out for a walk on the beach or some time alone. But that is hard when everyone has something to share and the surprises of commonality are everywhere.

In the workshops (huge array, did I mention?) some cry, others laugh. Some people raise their hands and share. Others listen intently. This is a different environment. Since we've all had the air sucked out of us at some point in the not-too-distant past, since many of us have forgotten how to walk at least once, we're forgiven if we're wobbly or if we've forgotten how to breathe, again, for a moment.

It's not completely touchy-feely (and not at all earthy-crunchy) but the environment IS a new one and we are all getting used to it.

Photo by @Connie_UW

Camp Widow Snapshot: I stuck these red signs up in the bathrooms. They're derived from an Internet meme but I thought real life needed them.

And the ritual... our letters to the sea. There's a whole separate post on that.

The best thing as always about Camp Widow is the people and the amazing connections... and somehow (through an incredible amount of work by a small team of volunteers, one staff member, normal good-hotel procedures and a bit, I'm sure, of magic) the time and place becomes a home for everything that one could need.

Camp Widow Snapshot: I met someone special (a met a lot of special people). But I really like my new friend Betty, widowed a while back, who came to Camp Widow with her daughter, also widowed. All weekend Betty said "I'm just here to support her" and pointed to the smiling lady next to her... who rolled her eyes gently ... but every time I looked, Betty seemed to be having her own conversations and making her own friends. The very last event at Camp is the Sunday morning breakfast and Betty, after scouring the very well appointed buffets, asked me quietly, "Do you think I could get a cup of hot chocolate?" We called aside a gentleman in Marriott uniform and he assured us of course, he could.

Betty (r) and her daughter.

She shared why: When her husband died, it was a terrible car accident, and she was badly hurt as well. He did not make it, but she did. In her bed in that same hospital she was looking at a long recovery herself, and was in and out of consciousness. One morning the staff said she woke up hysterical, screaming, "Take it away! Get it out of here," over and over. They thought it was just hallucinations, but when they moved the coffee out of the room, she calmed down. And eventually she regained most of her health and came home, and years later, joined me at this breakfast buffet.

"You see, my husband used to bring me my coffee every morning. And I would make him up a cup of tea, just the way he liked it [I wish I could convey the proud ring in her voice as she told me this]. That was what did every day for all those years. And I knew the smell even when I was unconscious... I hated that the smell was here without him. To this day I cannot stand the smell of coffee, so I have hot chocolate every morning instead."

Her chocolate arrived and we smiled together at her "after" life and a simple need, satisfied. Her daughter shares with me via blog all the time... Betty and I had a few minutes standing at a buffet.

I think there must always be some kind of "hookup" at Camp.... any time you get a lot of big hearts together, a few will spark. But don't get excited (or worried)... there is no "pickup" energy in this space, only whatever is evoked by smiles, tears, and adding real bodies to connections made online. People are friends, and if they take it to another level... that's something that can happen. 

This year at Camp there was an extraordinary and special moment where a Camper offered a large financial gift if people matched it... and though no one expected this request, people (a lot of them) stepped in and fulfilled the grant by Sunday morning. I believe this type of sharing counts as "work" because it truly helps make the next event happen. For a small non-profit, on a weekend with such intense logistical and human demands, this generosity is tremendous. To have the enthusiasm come from within the community was perfect and validating, I think, for everyone who put their time into planning and creating the weekend. 

Silly me w/ Michele Neff Hernandez & KIM CATTRALL!

Camp Widow Snapshot: Of course -- in addition to the noble goals of being a place to learn to move forward in life and connect with others who've "been there" or are still right exactly wherever you are -- Camp Widow is also the world's largest widow party. At the end of the day, staff, volunteers, and helpers of all sorts shake off their high heels, enjoy a nightcap, and perhaps spend a little time taunting civilians in the hotel bar. See me (center) with red wine on my head.

About taunting: This year, SSLF board member Barbara Frova successfully masqueraded as Kim Cattrall to the coterie of a very young, very drunk wedding party. (It was one fellow's idea and she just played along). She didn't even mention, I don't think any of us did, that we were all widowed. We were all "mazel tov" after our drenching on the beach and far less confrontational, though equally playful, as the famous incident at a CW West afterparty (2010) when Andrea Renee wrote "GET LIFE INSURANCE" on an acquaintance's hat. Every year is wild in its own way. 

No snapshot can capture the experience of being together, of being understood... of having tears be not the sign of weakness, but of love and healing... of sharing our loves ones with one new friend. Nothing can capture the feeling of wet sand between our toes in our Saturday night ritual.

During the weekend, many of us may be stunned to receive a "thank you" from a new friend. We who feel we have done nothing but take, are thanked! What is up? This is a place where sharing is big, where if you give, you are enlarged and made stronger. At the end of the weekend, we realize that we each helped CREATE this new place, that we added to its different air and we walked in its strange gravity. We all helped AS we were helped.

We often say, "we laughed, we cried," but at Camp Widow it's bigger: we breathed, we wobbled, and while we're not exactly one uniform family (like any community, we are very diverse and our disagreements are full of heart), we are not alone. We take some of this home with us, like our love, and this connectedness (I hope!) stays with us and becomes a part of us.

Which is why we call Camp Widow a "self care" item. It's a boost toward the hard work of building a new life. Don't we all deserve that? 

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I serve on the board of Soaring Spirits Loss Foundation, the host of Camp Widow and Widowed Village. I receive no compensation for my service. You can read the rest of my disclosure statement here.  

Camp Widow East: I sent a note to the sea

We did a ritual at Camp Widow East 2012, for the first time. A secular, all ages, all stages participatory event that was like nothing I'd ever seen. This is after two full days of being among ONLY widowed people, learning, bonding, sharing, belonging. The ritual was late, transcendent, deep and full of surprises, an expression of love shared.

Here's how it worked: Everyone received a glass heart, a piece of rice paper, and a short bit of green raffia. At some point during our day we each wrote a message to our late partner on the paper and wrapped up the heart. Spit was better at holding the package together than raffia, but whatever. (Love always binds.) All day Saturday we thought about it, or held on to it, written.

Saturday night was a banquet, a super fancy meal with a crazy photo booth where we all took on new identities and some (many) felt like dancing with their new friends. I wrote my note nearly at the last minute:

• I forgive you and I forgive myself.

1999. Notice glow necklaces in hair.

This meant a lot because I wrote a similar note in 1999, when Gavin had a traumatic near-death event in our kitchen. I went to Burning Man that year and sent that note into the fire.

That was a big one, too. We could have broken up that year. Somehow, that year, "we" survived.

Now it's just me.

Last week, at Camp Widow East, late at night, in our fancy clothes, we all walked out, a bit uncertain, onto the short boardwalk ... yes, we left our shoes. There was a drizzle of rain, and, as we approached the shoreline, salt spray. We were each handed a glow necklace so that "no one would get lost." (Not the most confidence inspiring message when we are shoeless...)

In clusters, hand in hand, one at a time, in gaggles and lines, 100 widowed people walked into the edge of the foam, or deeper, and sent off our heart-message-raffia packets. Our words, our hearts. I've never understood so much about the word "release" till the moment before mine left my hand.

Self portrait by Tamara Hadji

Some of us fell in, or jumped (@Chris_NC took a bet and ruined a perfectly good necktie). Nearly everyone was crying or smiling huge smiles. We watched, re-clustered, and gave genuine hugs, deep ones, raising each other up or regrounding as we each needed. There were a few words... we thanked each other for being part of the amazing day. Exhausted and fulfilled, we said whatever we needed to say, silently, alone, and together. Our sequins, glow necklaces, wet ankles sparkled in the moonlight.

Then we found our shoes and regathered, party hairdo's damped down, smiling and refreshed, outside the tired ballroom, plotting one last party or too tired, perhaps to share any more, or taking what was almost the last picture of the weekend.  

It was gorgeous and we were all emptied out and yet very very full. This was what makes a good ritual and we need so many more of those in our lives after loss. How much of our time do we spend sharing via computer? What kind of "secrets" are we really telling in our blogs? The ocean can't read. We need to be alone together sometimes. We needed this. I was proud to be part of it and happy (and surprised) to participate with all my, yes!, heart.

Facebook, you can't beat the sea. 

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* I shot 30 minutes of video but I don't know if anything came out because the camera owner is in Turkey till this weekend ...

Camp Widow: Me reading at the Blog Slam (video)

I will have more to say about the first Camp Widow EAST, held this past weekend in Myrtle Beach, SC... but for now, here's this:

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...

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.