Pet Peeve: Boundaries

I'm participating in the Widowed Blog Hop this month. Be sure to check out the other participants and leave them some comment love. For the largest list of blogs by Widowed folks, check my blog roll here. To add yours to the list, use this form.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

I have some pet peeves about the world of grieving people. Some of them are pretty popular misconceptions. Today's topic is the truism "no one understands except another widowed person."

Which might have a chance of being accurate if you didn't have the "no one" in the sentence. Because, seriously?

No one who's lost a child can feel as wracked with grief?
No one whose home was destroyed in Katrina or the tsunami has had as hard a time adjust as you?
How about someone whose arms were amputated by machete in Rwanda?

Really? NO ONE?

It's hard enough (and it could be true) to say that MOST of the people in our communities have not understood the grief and the tremendous life change that a widow or widower is going through.

People do say a lot of stupid things. A great many of very, very stupid things. Most of them mean well and are simply ignorant.

And yes, some people are scared of your loss or your intensity. We often feel we have leprosy. It's ridiculous. (I agree. I'm on your side.)

But that's not the same as "no one else can understand." (It's also not the same as us asserting that we will never be callous, insensitive, or dumb about what to say again, ourselves. But that's a pet peeve for another day).

Don't put up fences. Your community members may surprise you. Even if they have not been widowed, you may find that someone's empathy can affect you. You may find that a few people "get" it (at least in part). And they may not be the ones you expect.

Widowed people are GREAT company. Social connections with widowed people SAVED MY LIFE and I still cherish the friends I made during that period of rapid change. That support is why I am a creator of this larger global community of widowed people and why I created Widowed Village. It's EASY and NOURISHING to surround yourself with people who have "been there" and are okay with it all. We are TOUGH and wonderful.

But empathy is all around us. Do what you need to protect yourself. Find community and make friends. Don't shut the rest of the world out and for the love of Pete, don't create rationalizations to make it easier to close those doors.

After all, the world needs you, too.

Say his name: the #1 tip, and my reality

A long time ago, I wrote this post in draft. It didn't get very far.

But the topic is MY NUMBER ONE TIP for how to help a widowed person: SAY THEIR NAME. And it's also why I HATE that everyone ELSE thinks the number one topic on "how to help" is what NOT to say to a widowed person. Everyone publishes the list of what not to say. Because it's good SEO. People WANT advice. Magazine editors think it's "not as depressing" as the actual articles about our lives after loss (WTF?). Even grief counselors and "community leaders" dig into this topic with zeal.

Which SUCKS because it spreads the idea that you should be afraid of saying the wrong thing about a widowed person, when the chief problem of most widowed people after about the first two months is that NO ONE WILL TALK TO THEM.

In general, widowed people feel isolated. Sometimes, they feel they must have leprosy because so many people avoid them. (Don't think we can't tell. For a while we're in a fog, but we can be very perceptive, too, and more than a little paranoid.) I often hear from friends and neighbors who "would like to help" that they are sure the widowed person's close friends and family are in some kind of inner circle and stick around and support the widow. Sometimes, the closest people feel the most threatened or fearful. Widowed people describe their communities "disappearing" around them after the casseroles end. It's not universal, but in the U.S. and Canada, the rearranged rolodex is THE most common complaint by far.

Well, it underlies the most common complaint: people acting awkward and saying stupid things. But the lists of "what not to say" don't help.

I, for one, do not want to encourage people to be frightened of someone who has lost a partner. Many widowed people (not most) know that stupid things are not intended to hurt them, but they feel pretty damn alone when they hear "He's in a better place," or "At least you had a chance to say goodbye." (Let alone, "did he have life insurance?")

So why did I make the "Shit People Say to Widows" video? Because it does unite us as a community, because I thought it was a chance to see the topic through each other's eyes for 3 minutes, and because it was fun as hell and funnier than.

Back to the topic: SAY HIS NAME. I felt I couldn't blog in an honest way about it because I was a pseudonymous blogger.  (Maybe I overthink things a little? RILLY?) Plus, the tips are really part of another project that isn't public yet. :-) Now I have done enough for the widowed community that I have a name, a real name, as myself: not just as Supa. (Though many people call me Supa anyway.)

So I'm "coming out." My name is Robin Moore (for the few of you who don't already know me). My first husband was Kevin MacDonald.

So, SAY HIS NAME, or her name, a lot. Say it a week after they died. Say it a month after they died, and a year, and two years, and ten years. Say it when you think of it. Say it in front of the widowed person, say it in front of their children. It's okay; it won't "remind" them of the loss. No one loses a life partner and just tries to forget it.

When people don't say his (or her) name, it makes the family feel like they are the only one who remembers their loved one. (I'm going to stop saying "or her" but I hope you know I mean widow OR widower and him OR her, and they didn't have to be married or straight to have a similar set of feelings or experiences after losing their partner. Do don't back out on some legality.)

Write his name in a card and you share a memory, whenever you think of it, even if it's years later (it will be less likely to get lost than it would have been right away!).  Write his name in a card for the anniversary of his death, or on his birthday, or on their anniversary, or call and say his name. Most people like to not be the only one remembering these dates, and they can't help but recall the dates because seasons keep changing and other dates keep appearing and you can always smell and feel when it is in the year in some vague way. Remembering is not an act of will, or from the brain. Time and life are all around us everywhere and if we are well, they are in our bodies. 

So, share a photo if you find one while cleaning up. Share a song or a silly story on a holiday. Call, email, or write a real note. Even if you have been out of touch in a while. Even if you USED to be scared of the widowed person.

As time goes by (and when I say "time," I am specifically talking about periods of more than five years), the traumas turn to memories, the sad memories become fond ones, many details get lost, and with enough time, the widowed person might even forget the date of their anniversary. That doesn't mean they will think it never happened; it will not remove the events of their life "before" from their life. And every experience will include the absence of that loved one, even if it not quite the first thing to come to mind. And no -- these memories do not threaten my new husband, any more than his ex-wife's name threatens me.

So, say his name. Show your friend that you remember him, too. He's not just a loss. He was a person and a very big part of your friend's life for a pretty long time. He didn't just disappear when he died (though it can feel like a disappearance for a little surreal while). He changed the people he loved. (This is true in divorces, too. You can't just "un love" someone or "un live" the life you already shared. Let's be human, please!).  

I'm sharing, above, the memorial quilt from my church, on which I embroidered his name during support group one night. I thought I was doing a terrible job, and I switched the thread midstream because I thought it came out too lumpy. It looks fine to me now. Every time I'm in church the quilt faces me. His name is among hundreds of other names. Each quilt records decades of love -- fathers, mothers, lovers, grandparents, and children. We have a whole quilt devoted to children who died, and it's comforting to see the range, from newborns to M.D.s.

They can't be forgotten. They won't be forgotten. Don't you act like you forgot.

Say his name.

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. 

Dating a Widower, more thoughts

A while back, I published a whole post explaining why I typically defend widowers who are dating against the advice of columnists who specialize in the particular foibles and hazards of dating widowers.

HOWEVER.

That doesn't mean I think widowed people (men or women) deserve any kind of special consideration when dating, either.

Too often I hear young widows (we usually say "under 55" just to have SOME answer) speaking wistfully of dating someone who "gets it," meaning, in our code, someone who's also widowed. It seems like it would be easier than "cleaning up" one's grief for the dating market or dealing with divorced men (about whom we can be quite judgmental). We get misty eyed thinking that this widower would understand the troubles we've seen and that there would be so much less guilt involved in the new relationship.

Well. This is as Hollywood as it gets.

Widowed men are only human. They can behave badly when dating. Maybe not worse than other men, but if a woman enters the relationship with misty rose-tinted gaze, when she's most vulnerable (and especially if she's decided to short cut knowing whether she's ready and committed to dating... because after all he's "just like" her)... it can get ugly. Widows are vulnerable enough... don't make yourself MORE vulnerable by dating someone who you feel is owed any special treatment. His loss is no more romantic than yours, after all.

Yes, you can live happily after after (once per person). But don't overlook the practical aspects of your situation: there are far, far fewer widowed men available at young ages, and no matter your age, there will always be fewer widowed men available. Dating is -- for many of us, at many times -- a numbers game. You need to have the largest pool available... and the clearest idea of who you are (not JUST widowed) and the most critical perspective on who you're considering to share your life.

Don't get all fairy-tale on this... a widower is just another man to be considered for his own merits and flaws. I'm suggesting that widowed women are more susceptible to this, but Abel's column (and the other Dating a Widower sources) tell me that widowers are getting the same kind of affirmative action from single and divorced women in the marketplace. Preference that I doubt is ever given to widowed women when they date.

Everyone deserves love, but everyone also deserves the right partner and to be taken seriously enough that they can be seen for who they are.

Grieving Adam Yauch: An Inside/Outside Perspective

Because I was in the circle of the Beastie Boys early in life, I am in a few Facebook groups grieving the loss of Adam Yauch. I was not close to him, but we had several close friends in common, and I photographed the band at early gigs, backstage, in “photo shoots” and just hanging out. And as a widow, I know that when the time is right, our community can help support Dechen Wangdu, his wife, as she looks ahead as a woman and a parent. I am observing the grief from several angles because I am in several positions around it.

This time, I'm experiencing this loss in a different way than any of the others I’ve been through. I can see where the community and the widow diverge and why. It’s not what you think.

We widowed people, at first, are overwhelmed by the love showered on our loved one. We are torn open but we feel grateful for all this pouring in of feeling and sharing (and casseroles). And then after a year or two, we wonder: why did those jerks send casseroles? Why did they send a card and then do nothing else? Why have I been alone since the memorial service? And when is someone going to bring me dinner or ask how I feel? Are they afraid of me?

We figure that people are too afraid of death, our new status as single, or cancer or crying or whatever. We don’t need people like that in our lives anyway. And so the friendships are dropped, one by one. I’m not saying that isn’t true: to a large extent it is the reason for this perceived abandonment. But the end result is bad for us: more isolation, bitterness, the burden of building one more thing from scratch. 

Those factors of death-a-phobia and widow leprosy are real but they are not the only factors... These factors also present the most unkind perspective on the world. To look at it in a less loaded way, many people send a condolence card or food because they want to do something. Most people are compelled to and they know they "must." But it's a limited intervention because they know that the widow’s space is not theirs. They give these things from the heart, but they respect the most intimate, most strong pain and grief… they wish to give you room that you need. In the first few weeks, you can’t hear them if they do more. All you can do is to keep eating, keep drinking water, and try to get some damn sleep (or try to get out of bed. One or the other.). That space is natural and becomes part of your healing and anyway, it's all you can possibly stand.

I know that's not all the widowed person needs... the community doesn't know what you need either. That's another story. But doesn't the world look better if you realize that this simple space is not entirely cruel to you at this one point in time? 

I have been watching this dynamic in the private Facebook groups that grieve Yauch. For the most part, these folks want — desperately, kindly, generously — to cry on each other’s shoulder. They want to grieve their loss with others who knew him. Most of them don’t know Dechen. Of course they wish her well. But they know they are in a different department. Their need to grieve is also real, and it is also intense. They can still get together now and share without -- honestly -- burdening her.

In the big losses in my life — of course — I was at the eye of those hurricanes. When my father died, when my husband died, I didn’t notice or care much about what the community was getting out of the memorial service or out of supporting me with limited interventions (though I went to the mailbox compulsively [people still sent cards back in 2006] and greedily took any food that came by). Earlier losses I don’t think I understood at all… I was too undeveloped. And most of the losses I’ve been through since Gavin died, I’ve seen through my “widow” lens, which is invested in changing the picture and making folks aware of the widowed person’s real needs and real world in a real (and really long) timeframe.

Observing the grief and loss around Adam Yauch, in addition to that agenda (which matters!) I am also a member of the larger community. I’m not close enough to be overcome with my own emotion and sadness (though I am sad… but compare this to when Amy died, when I was cracked and off balance for weeks).

I think I’m getting closer to a healthy perspective on not only my own loss and grief, but what is really going on outside, without losing the benefit of my experience from the inside.

And I think that’s another new milestone. Next thing you know, I’ll start giving a crap about people’s kitchen renovations. (I might even get a custom tile backsplash!)

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.

Surviving the first year, with help from Buffy

When my husband died, I had no idea how I’d recover. After two years of nursing his terminal illness, our household was drained and I was just plain exhausted. As the breadwinner, I had worked full time through his illness; as the mother of a small child, I was desperately needed at home. 

Perhaps it looked to the world like I could make it. Gavin had told me, over and over, “you’re stronger than you think.” Grief was overwhelming, but I knew that would run its course in time. My therapist assured me I had all the right tools in place to build a path up out of loss, a new life, to get my mojo back. But I just wasn’t feeling it. I needed an image… a narrative… a mentor.

I also needed something to do after putting my daughter to bed. I had abandoned most hobbies (and been abandoned by most of my friends) after our long fight. My eyes hurt too much to read. I was doing all the work, in all departments: estate, job, home, self care. I needed a little time out, some escape.

And I found something passive that held tremendous healing power: the TV show Buffy the Vampire Slayer. I pledged to watch all 144 episodes, seven seasons in order, that first year, as part of my self care. I swore, too, that I’d always have the essentials, red wine and dark chocolate, on hand.

I was converted to watching Buffy late in its run when a friend revealed to me that the show’s setting — a high school — had been built on top of the actual gate to hell. The blond and perky cheerleader heroine was burdened with her duty to save the world, and she did it over and over. This scenario was familiar. Duh! The entire show was ironic.

I didn’t get that when I caught my first fragments of Buffy episodes while surfing through Saturday afternoon reruns. The show’s special effects were superior to those of Dr. Who, another cult favorite I never got into, but I couldn’t understand why vampires would be marked by forehead bulges. Were they supposed to be Cro-magnons? The other characters were cute teenagers living in an idyllic suburb. I’d been a city girl and a brainiac who barely survived high school. No way could I identify with this laughable show.

When I finally surrendered, I enjoyed the last 2 seasons, action packed and subtle, postmodern to the max, while completing grad school. The legion of Buffy fans will tell you it’s a deceptive show, deep and dark at times, with real heart and occasionally, silly as all hell. Vampires — ordinary vampires and spooks in film — have always seemed to me to have as little to do with death as an amusement park. Even when the sets, costumes, and effects are “convincing,” movie monsters don’t grab me. At their best, the creatures are metaphors, unconvincing and fleshless. Death in a movie is a fake climax guided by music and lighting, when real death is blank and empty. I’ll always favor Beckett over Hitchcock and certainly over chainsaws.

The writers of Buffy don’t make any of those easy mistakes. After my experience of watching my husband die, living in the warm lap of mortality as that event approached, Buffy’s world seemed important and worthwhile. I could feel her duty, her struggle, and her fight against evil and root — with relish, like a good cheerleader — for the right side to win.

So every night, I settled on my couch with a glass of wine and opened a Netflix envelope. I spent an hour or two watching a girl younger than me kick ass, make fun of goths, and kiss boys (Yes, there is sex in Buffy. Good sex. Talk about the teenage years I never had!). I kept an eye on her friends, even the goofy ones, as they helped out, sometimes haplessly. I sat through the blood and the imaginary monsters. I made friends with ambiguous demons of all sorts, because nothing is black and white in the show; bad guys become lovers and friends break into evil. Watching Buffy is fun, but it’s rarely simple. 

Over and over, the premise of the show, its characters, its choices and even a few of its conflicts were real for me. Two events in the series spoke out to me in particular as a grieving person, and they are both about the hurt of our world.

In one episode, the partner of teen witch, Willow, is killed violently before her eyes. Slowly, grief transforms her: after losing everything, she comes to feel all the pain of humanity. Overwhelmed, her eyes turn black and she knows she must end this unbearable existence for everyone. It is loss that pushes Willow to cross over the edge — not a will to power or any desire to join with dark forces.

Like Willow, I could feel cracked open to feeling too much. I didn’t feel so much like destroying things, but then, life as a Mom grounded me and didn’t have any access to the tools of black magic. But I was awed that the story presented by Buffy’s writers isn’t the fairytale vision of what pushes evil.

At the end of season five, I felt Buffy’s relief as she sacrifices herself for her little sister and the fate of the world. This death is oblivion, which I felt strongly from contemplating my own loss. When Buffy is brought back to life, I agreed with her sadness at returning to this plagued and difficult world. She’s in a funk most of season six, performing her duties with little zeal. She just doesn’t want to be “here.”

Like me working through that first year, Buffy doesn’t find any tricks for her getting her groove back. An episode called “Once More with Feeling” suggests that living through an all-singing, all-dancing spell could break any mood at the same time as it encourages the viewer to suspend a last level of disbelief, if she had any left. In the end, Buffy and her friends save the world one last time, not without losses and costs. Good men die, an eyeball is poked out (and shows no sign of magically reappearing), and the whole town collapses into dust.

During my most difficult year, Buffy the Vampire Slayer showed me that everyone hurts. The world of Buffy is tough and often painful, like that of a Grimm fairytale, but I felt, as Buffy usually did, that this world is worth fighting for. There are no superheroes, although you get points for agility and teamwork, and once in a while you find a magical talisman or a talking book. By being honest about loss, Buffy gained my trust so I was able to enjoy the relief of rescue at its conclusion. By being silly and exuberant, the show kept me listening and broke down my intellectual barriers.

Watching Buffy every night required me to rest. It gave me color and excitement in the comfort of my own home, and a role model par excellence.

Most of all, my year of Buffy taught me that my imagination is probably my best and most intimate tool, and one I can’t live without.

Someone gets it

May 26, 2011

Dear Supa,

It's almost the fifth anniversary of Gavin's death. In the past, I would not have sent a note. I would have thought, "Sending a card is superfluous and even presumptuous. Supa certainly knows the date. You only talked to Gavin a few times. And you're lousy at keeping in touch, so it's weird to send something now."

From talking to you and reading your blog, I've learned that these thoughts aren't meaningful. Even though they still crop up, I'm ignoring them. I want you to know that I am still sorry for your loss. I will be thinking of you and Short Stack, especially on the 2nd. And I'll be hoping peace will be with you, Shorty, and Mr. Fresh.

Rebecca

Turning the corner on grief

How do you know when you're turning the corner on grief?, they ask. There's hope and confusion in their eyes. And who wouldn't want the pain to end? But I can't lie and say, "On day one of year two, you will be all fixed up." I would never say that; they believe it anyway. (I believed it too. We must all make it up with our good imaginations.) And you can't tell them time makes any difference, even though it's totally true, because they will hit you. I might say, "give it time," and "I'm not sure there's really a corner, but you will feel better one day."

Here's what it felt like to be turning the corner on grief:

• I had more good days than bad days.
• I started to get ideas about things I wanted to do next.
• I began to feel that my loss was not the worst thing that ever happened to anyone.
• I had urges to see friends, exercise, clean up, and change things around.
• I started to be able to help other people.

Some people mention that they start to be able to see things in color again, or they start to taste food again (which usually results in their being disgusted that they ate Cheerio's for dinner 6 months straight, but whatever. Accept and move on!)

I think what's important is knowing that for most of us, it's not dramatic, nor even a single event. (We say "grief is not linear," but seriously, is anything in life linear?) For most of us, we say we feel like we're going "two steps forward, one step back," (often, "two back and one forward"). We say it's a bumpy road, or a rollercoaster. We say it's better when the peaks are higher and the valleys are less low. Most valuable is knowing that the time scale is incredibly long: no matter how long "grief" lasts, it's not unusual for it to take several years to get to a stable place where you smile a lot. But it's not linear: you're not inconsolable and disabled and an open wound the entire time. You keep changing and the world keeps moving too, and sometimes you are in sync with it.

Sometimes you can find a perfect metaphor even if it doesn't QUITE fit. This story about the wonderful Frog and Toad (by Arnold Lobel) captures at least one tiny bit of it perfectly: that progress happens when things just keep moving along, however they will, and whatever you think you're looking for, keep your eyes open to the world around you.

My daughter hates it when story time makes me cry but these gentle little reptiles always get me in the gut. Toad has been soaked in the rain, and Frog shares a story about how his father told him to buck up, "spring is just around the corner:"

"I wanted Spring to come.
I went out
to find that corner.
I walked down a path in the woods
until I came to a corner.
I went around the corner
to see if Spring was on the other side."
"And was it?" asked Toad.

"No," said Frog.
"There was only a pine tree,
three pebbles and some dry grass.

I walked
in the meadow.
Soon I came to
another corner.
I went around the corner
to see if Spring was there."

"Did you find it?" asked Toad.

"No," said Frog.
"There was only
an old worm
asleep on a
tree stump."

(I love that worm. I love Frog and Toad so much).

And so on. Four corners, and spring is not around any of them. Disappointed, tired, Frog heads home as it starts to rain.

"When I got [home]," said Frog,
"I found another corner.
It was the corner of my house."

"Did you go around it?"
asked Toad.

"I went around that corner, too,"
said Frog.

"What did you see?"
asked Toad.

"I saw the sun coming out,"
said Frog. "I saw birds
sitting and singing in a tree.
I saw my mother and father
working in their garden.
I saw flowers in the garden."

"You found it!" cried Toad.

"Yes," said Frog.
"I was very happy.
I had found the corner
that Spring was just around."

(The entire delicious story is online here.)

And why do I love this? Because what makes spring come... is not so much the effort it takes to look around all those corners (although doing so is unavoidable) ... but the work it takes to plant a garden.

So keep hope in your eyes... but keep those peepers open, peeps, especially when things are changing. Spring's a-comin'.

Parenting your grieving child, #3: Q&A with the founder of Rainbows, grief support for children

Most of my mission online consists of peer support: helping widowed people connect with each other, share stories, and find validation and new friendships. Last summer, as part of an extremely active conversation on my Facebook page, it became clear that widowed people with kids at home wanted more: you asked me for the comfort of an authority on what to expect in your grieving children as they grow. I posted a quick signup and got more than 100 widowed parents showing their interest!

This series is the first outcome of your requests. I asked my friend, Suzy Yehl Marta, founder of Rainbows For All Children (LINK), to answer your real questions. Suzy is the author of “Healing the Hurt, Restoring the Hope.” Suzy has been working with grieving children for nearly 30 years. Rainbows has programs for children and teens, ages 3 to 18, in all 50 states and many international sites. Find a program near you by calling 1-800-266-3206.

This is the third of four posts by Suzy – one for each Tuesday in October. Questions were selected from those submitted by widowed parents on my Widowed Village page on Facebook. You can “like” that page at right, and ask your own question here. You can read the first post in the series here and the second one here.

Please see my note at the bottom of the post for details on how you can take a minute or two this month to “vote” online and gain financial support for Rainbows.

* * *

At what point do you insist on making your child attend grief counseling? I never pushed it with my 18 year old and now am wondering if I am doing him a disservice by not giving him a safe place to express his concerns about our new family structure and his feelings about losing his ather. (Both he and my 14 year old son watched their father die of cancer 2.5 years ago).

I worry about their ability to form healthy relationships as adults now that they do not have a consistent male role model in their lives. I have no family where I live and my husband's family is absent. I am currently dating someone who has long-term potential but don't want to make this man feel obligated to help my sons. Suggestions?

This is a tough question because grief is a normal, natural way to process the death of a loved one. The death of a loved one impacts each family member differently. If the death was a homicide or suicide, other painful concerns and responses surface compared to the death of an elderly grandmother who was 90. Other factors that influence how a child is able to process the death is the age of the child, the family’s ability to talk together about the death and their individual feelings surrounding it, and the type of relationship to the deceased the child had. Most people do not need grief counseling, but rather need to learn more about grief and have the emotional support that enables them to grieve at their own pace, in their own way.

Grief counseling can be helpful but the best is if your sons and you to talk as a family on regular basis about the loss and actually take a “pulse” of how your sons are doing. Secondly, getting your sons enrolled in a grief support group with kids their age who have had a loved one die allows them an emotional safety to feel “ordinary”…their companions on the bumpy journey of grief. This support group needs to be led by a trained adult facilitator. Many communities offer such opportunities, as well as Rainbows for All Children, Inc which has programs in schools, churches, synagogues and agencies across the country.

You are wise to be aware that your sons need male role models/ mentors. As a single parent of sons, I sought out male mentors. The obvious ones were my Dad and brother, and you don’t have these options, I also enrolled my sons in sports (coaches), scouting (pack leaders) and asked husbands of friends to help me with teaching them things about being a man. Things from tying a necktie or shaking hands with a solid grip. Another great resource is Big Brothers. And lastly, I invited the school to be a partner with me… keeping me aware of needs or concerns that might arise that the teacher or social worker are observing. While your 18 year old is either out school or heading for college, your 14 year old has years left in high school.

I pushed myself to learn about the various sports and other interests of my sons. All three were so different which added variety to our family life and conversations. I learned over time while I could not fix their bikes or teach them how to pitch a ball, what sons need is a good role model of unconditional love, integrity, humor, consistency of values and expectations, as well as dependability.

You are prudent to not expect the man you are dating to be pressured into taking on this role. First, your sons may very well resent him for assuming the role of Dad or male mentor because he is not their Dad. This needs to develop naturally over time. Just having him around your sons and including him in family activities is a huge step. You did not mention if your friend has kids and if so, this may add more challenges -- and more opportunities -- to the situation.


Read the other posts in this series:
October 5, #1
October 11, #2
Or ask your own question.

* * *

Please help support Rainbows programs!
Rainbows For All Children is participating in the Pepsi Refresh campaign. From Oct. 1 to 31, log on to the Pepsi Refresh web site and vote for Rainbows every day. And please help spread the word! With $250,000 from the Pepsi Refresh Project, Rainbows will:

• Provide emotional support to 2,500 youth through 100 new sites nationwide
• Help children and youth strengthen problem-solving and coping skills
• Improve communication in their families and peer relationships
• Prevent destructive behaviors including violence and substance abuse.

Ham and Eggs, or, Why I just wrote my will

There’s an old joke, really more of half a joke, that we used to use when referring to having our child. Someone would ask Gavin how the birth had been, and I’d chime in with, “It was lovely, but it was like ham and eggs… the chicken (pointing at Gavin) is involved, but the PIG is COMMITTED.”

(Gotta tell you though, when Stalin said, “You can't make an omelet without breaking a few eggs,” he didn’t mean that the chickens would get off [or over] easy, either.)

Labor pains weren’t the half of it, really, when you think about the many years we spent living in the limbo of infertility treatment. Despite my body being directly involved, I was definitely the pig. I took dozens of shots in my pink thighs. I volunteered my breasts till they were raw. I gave it up and delivered. And I ate a LOT.

In the end, it was he who died (though we didn’t get any meat out of it, except perhaps for stories like this one).

So I wonder if I was getting him back by some odd, post-mortem, self-flagellating math when I didn’t take care of my own will for FOUR MORE YEARS. Gavin had received plenty of credit for our baby without doing the work, and damn it if I was going to commit to one more thing. It was his body doing the fighting, and therefore his decisions about treatment and endpoints, but I resisted wherever I could. It’s impossible to pull your own life out of the action, isn’t it?

So it was easy, after he died, to relish my role as the chicken for a little while. I told everyone how important it was to have an advanced health care directive and a will, and to talk about death with your loved ones. But I manifested that unique alchemy or oscillation between bulletproof and broken that a widow often does. As a single Mom, who would I tell my last wishes to, anyway?

I’ve been married a year and a half now and we still haven’t had “the talk.” I really AM chicken.

But I just made up my will. You can tell it’s mine because it has a juice ring on the front page. I had it witnessed at a bruncheon I hosted for local widowed parents about two months or so after preparing it using some cheap internet product. The bona fides might or might not be solid, but my conscience is clear. At least I’ve done one of the jobs I think you all should do.

And I remember that despite the pig’s great commitment, his dying for our breakfast, we do end up eating the chicken, too. It’s just later in the day, for the most part.

Parts is parts, right?


* * * Please connect! I love comments! * * *

Widowed from a May-December Relationship

Gavin and I had a “May-December” relationship. I always resented this term. It made me sound too fresh and green, when I was sticky, black and mean; and cast him as so close to the end of the story, when in fact, he was just out of a band and doing drawings that befuddled the critics. I’d think, couldn’t we at least call it “a June-October relationship?”

Not that I cared very much what anyone thought. We were in love. I was mature for my age, with a lot to learn in his strong areas: people, politesse, the power of listening. We surprised each other with our affection and our commitment, as it grew.

Sure, there were 20 years between us. I used to say, “our age gap is not quite up to Hollywood standards.” But it didn’t matter. We loved all the same bands. We both felt moved by minimalist and conceptual art (though he always accused me of spending more time reading the labels than looking at the art). Appreciated the splendor of the mundane. Alternated between goofy and overly earnest.

A few friends cringed, a little, at first. Those on his side could see, I’m sure, that I was ripping him from dotage with his elderly mother and the fate of dying alone, of avoiding fatherhood. Others saw Daddy issues. He didn’t really like having folks ask our infant daughter who her nice grandpa was. But it’s a post-Viagra world, people. Age is nothing but a number, or in our case, two of them.

We were happy. We had, for the most part, a good balance in our relationship. Our skills and strengths, to some degree, were complimentary. (I really wish he hadn’t been a pillbox about dinner parties. We were at our best as hosts, minglers.)

But one of the great lessons of widowhood, at least for me, has been that, fuck you, love is NOT enough. Maybe some people could see in us how we’d end up, that I’d be left behind, that it was inevitable he’d die on me.

Mr. Fresh says, “You didn’t ask to be widowed at 39. Maybe at 59, when he was 79, but no one would have expected it when you had a 2-year-old.” He has a point. As much as I’ve been an old soul, even as a child, I always felt I’d start life in a new, much better direction at age 50. I thought the most beautiful women always have silver hair. I do have several relatives who’ve lived past 100.

That doesn’t mean I had to find my match outside my peer group, but I did spend a lot of energy looking to a future as an old person. Would Gavin be part of that later life? I didn’t think we’d be the cliché on the porch in rocking chairs, but who was I to quibble when I loved him? “’Tis better to have loved and lost than never to have loved at all.”

I don’t feel the same way anymore. I’ve played out the endgame of the May-December relationship. I don’t really have much advice or anything profound to say.

I just don’t recommend it.

* * * I'd be honored to hear your response in a comment or through other connection (Facebook, Twitter, Formspring, at right) * * *

Et in Arcadia, Ego.

What do you say to someone whose spouse is dying? Of course she doesn't want to talk. Why should the wife of a cancer patient need to speak with a cancer widow?

I have this urgent mission to spread the word that we're mortal. But my tools are so primitive. My sharing is on the wrong damn side. There is no gentle message with the word "widow" in it. My very name spotlights the most fearsome, unholy, unhopeful state this wife, this mother, can imagine.

Don't get me wrong. If it were my body invaded by cancer, I'd start over at square one of "Fight, fight, fight." When would I stop? I don't know. But that's not me. And it's not you, either.

But I have worn your shoes. I was the partner, the one holding him up, framing the world for our friends, families, and our own dear child. How could I have explained it to her? She wouldn't have understood. Not any better than the rest of us did, even as we caught glimpses.

I wish I could build you an offramp, or at least draw one for you while you cope with a terminal disease and run, faster now, out of treatment options. I fired doctors. I wagged my fingers at them. Unlike you, we had no heroic measures left to take, but we wouldn't look beyond, couldn't see.

Can any of us look that loss in the face and say, "why, hello, old friend?" Because we've met. Otherwise we wouldn't be scared, except the children, who know what a primal, lizard-brain fear is and not the layers we've stuck on top of it. Layers of cake decoration, of gladiola and ivy.

A book about cake decorating is called, "If you make a mistake, put a rose on it." Are those flowers glorifying the hole or concealing it?

I am motivated to push ugly truth because we are all so grossly unprepared. But how to be any other way when we're in the middle?

All I can do is witness. I never understood this when we studied it in art history. What's written on the grave is not a judgment, not really a prophecy, but an observation. If the dead could speak to those in Eden, or on our green earth, what would they say?

"Et in Arcadia, Ego." It's classical culture, a later civilization's interpretation of the dead Greeks (in Latin, of course). "As you are now, so once was I."

I know, it's easy for me. I'm the one who lived. I hated having to do both at once: to lie about hope. But I had to have something left for the next job: my own and my daughter's survival. I hated the lurk of the dark trees on the opposite bank, far off but facing me.

Maybe easy is not the right word for being where you are now, on the near side of the river. Living must be easier than dying, no? I don't think so. Looking back on it, my job was harder than Gavin's, more complicated.

I wish I could help you ready your heart and soul, just in case, you know, on the off chance that a tiny bit of probability (let's just pretend) indicates that he won't pull through.

Because I so see myself in you. And I want you to be well. I want your heart to be full, and your family to prosper. I know I can't fend off your grief or the gray fog or the fact that (if it happens, or if it doesn't) you'll be changed forever.

But can I just hold your hand?


* * * I'd be honored to hear your response in a comment or through other connection (Facebook, Twitter, Formspring, at right) * * *

My Response to the Today Show, Part 1: The Baggage of Surviving a Happy Marriage

A young widowed friend of mine, Brenda Boitson, recently called in a question about dating as a widow to the Panel of Men who give women advice about men on the Today Show. The video is online if you wish to view about four minutes of embarrassingly shallow behavior, starting with “Why? We don’t want to become your next victim.” You’ll see that the response of this small group of 6 people illustrates the problem the stigma of loss brings to any social situation, without shedding much light on Brenda’s question of what to do about it.

First of all, I have to point out that the “next victim” comment, which annoyed so many viewers, is actually a prime cliché (it’s not meaty enough to be called a joke) and can be a little funny in the right situation. I use it. If I’d been the one calling in instead of Brenda, I might have said, “Dudes, why y’all afraid of widows? It’s not like I killed him.” I’m sure, in fact, that I did use that line sometimes. Possibly even in bed.

We widows are pretty used to feeling like we have cooties, and expressing this jokelet on our own time can cast folks’ hidden, negative thoughts in such a ridiculous light that it neutralizes the social situation.

Yes, it was a horrendous comment in the context of Today, and it may have hurt Brenda’s feelings (doesn’t sound like it), but mostly it just exposed panelist Chuck Nice as a man of weak humor and low maturity. (Later in the show he’d helpfully point out that he’s also shallow and not a very thoughtful husband). I’m not used to the low standards of morning television, but I’d have expected the producers of a national show to prepare the men (I can’t say “gentlemen”) better for her call.

Second, the responses of all the folks on stage can teach us something about why people have such a hard time dating, or rather, why it’s so easy for them to date and so hard to find a partner and live happily ever after.

Third, I have some words for Kathie Lee Gifford, whose incessant giggling is the prime irritant in that segment. I’d like to be constructive and compassionate even though she was neither. But I’ll make that a separate post.

So what can the response of these “boys” (not men) to Brenda’s question tell us? Their laughter and avoiding the question says they are scared of death and feel threatened that it would hit someone in their age cohort. (If you’ve faced a loss, you already knew that). Their words tell us that people who date are perfectly comfortable dealing with divorce. Above all, it demonstrates why marriages don’t work out and then the same people date and date and date: they have no fricking idea that they are looking for the wrong things.

Because here’s the thing: Everyone says widows have baggage. But by the time we’re ready to date, most widows and widowers have learned to stow it neatly under the back of the seat in front of them.

By age 40, everyone has some kind of “baggage.” (Often, it’s a code word for “kids.”)

Maybe a widow has the baggage of having fulfilled her vows, “till death do us part.” If she feels cheated, she’s likely to blame God for it. And we have some contempt for the polite world’s denial of death because we know everyone will go through loss sooner or later. We just had it happen earlier, when we were young and had many responsibilities.

As a widow, I often felt that if believing in your own mortality was “baggage,” I didn’t want to exist without it. After all, no one gets out of this life alive.

Divorced people enter the dating world working hard to get over their strong sense that they gave everything and in return, were rejected. The men’s ads often say “seeking an independent woman” and the women’s ads say “Looking for a man who MEANS WHAT HE SAYS.” Read between the lines and you’ll find that he felt milked by the divorce and she couldn’t get over a cheating episode. Sometimes the roles are reversed, but divorced folks feel BURNED.

If you haven’t lost a love you’ll think we’re crass and brutal, but every widow I know has said this statement: MY husband didn’t WANT to leave.

Don’t get me wrong. I love divorced people. I married one. But if you think I have more baggage from losing my husband than he has from losing his wife’s affections AND his children – you’re wrong.

Widows argue that we had good marriages, but they ended as we pledged they would. We’ve been through tough stuff too and we figured out how to stay together. While we may not be ready to get hitched again, as daters, we’re arguably the only ones on the field with great track records. I remember thinking: I had one good marriage, I can have another if I like. I know how to make it work.

So here’s what’s wrong with their response to Brenda: the expert daters were framing all the questions wrong. (Not their fault; everyone does).

If you are looking for a good partner, you should date someone who was a good partner. If you want to marry, date women who think marriage is a good thing and who are able to be fulfilled within the institution. If you want to be treated well, date women and men who expect to be treated with respect and who view you as a potential commitment.

Yeah, death sucks, but if it’s baggage, you still have to accept it. After all, why else do you date, if not because you don’t want to die alone?

(Go to part 2, an open letter to Kathie Lee Gifford.)

* * * Comments * * *

My Anissa Post: Prayer Isn't Enough

[Background on Anissa Mayhew here or here]

Leave it to the widow to say what no one else will: Prayer and love are great. But they are NOT ENOUGH. Whatever happens with Anissa, and I hope as strongly as you do that the outcome is whatever is best for her, things are NOT going to be okay.

So I’m going to give it to you straight: Send up those winged hopes. But plant roots, too, please: add something like this to your prayers and posts and intentions: "Whatever happens, I will help her family for the long haul." They -- Anissa’s husband and three children -- are going to ACTIVELY need your positive energy (and time and money) for at least the next three years.

Three Cliches, Including "Till Death Do Us Part."

Leave it to me to question the truisms that everyone says without thinking. (For some reason, I am still fun at parties…)

“It didn’t work out.”
I never understood why people would say this about a relationship after it was over. What was supposed to be the endpoint, which didn’t end up fulfilled? Is it that they didn’t “close the deal” by getting married? Surely they could enjoy their time together without having an end in mind. Did it “not work out” because they didn’t stay married until one of them died? Is a marriage that ends in divorce like the sound of a tree that falls in the forest when no one hears it? Surely those years together were worth something in this world, at least in the small sphere of your time in it.

Is it just that it’s one of those nonsense phrases that everyone uses, of which I have so little understanding or tolerance? Or is “it didn’t work out” truly contemptuous of time? Whatever it is, I always take a step back from any friend who says it. (Did I mention that I still have friends? ‘Cause I do. I’m not even lying.)

“Happily ever after.”
Who cares what it’s “after?!” Yeah, I get that you’re closing the book, so “after” the cover’s shut. What is it until?

On the other hand, we cynics today, we sophisticates, make so much fun of “fairytale endings.” What would be wrong with just plain being happy until we each individually (don’t forget, we all do die alone) fade out, hopefully in our sleep and at a good ripe age. So much contempt. Don’t you deserve to have joy? Wouldn’t most of us be happy to remember one moment of bliss at the end as the chapters shoot past our fading eyes?

“Till death do us part.”
How much do any of us really contemplate this statement? Gavin and I thought we were pretty serious about our love in the face of Death. We married in defiance of his heart problems and several near-death experiences. We requested that our friend Pat, glamorous jazz singer, sing “One Hand, One Heart” from West Side Story (“even death won’t part us now”) at our vows (and, um, “Like a Prayer”). And then we went to Mexico for the Days of the Dead (including a cemetery tour) for our lunes miel.

But seriously, who wants to fulfill those vows? We love to picture ourselves on the porch, white haired or bald in last year’s hiked-up pants giving lollipops to sticky grandkids.

But being the caregiver to a dying love, whether old or young? Recovering alone from the shock of a car accident? Romantic? Pfah! Research shows it takes 10 years off your life.

We cherish the Norman Rockwell picture of “till death do us part,” but none of us is ready for the Norman Cousins one.

Should I be pleased that death parted me from Gavin? I’m not sure. I did enjoy entering dating with a “successful” relationship (ah! There’s that endpoint!) behind me, and I certainly hold it over your everyday divorcee. And look, widowhood is a big part of my identity. (Today.)

But surely a marriage in which my husband died didn’t “work out,” did it?

Mr. Fresh says he hopes I die first so that I don’t have to go through this kind of loss again. I’m not sure how much of a kindness this is. I joke back, “Yeah, um, no thanks. I love you too, but be my guest.”

* * * * * *

* (I’m not endorsing divorce. I think it’s a grand waste and injustice 90% of the time. But seriously? Marriage and death? Not really on the same page for any of us.)

** (Is that time only valuable if it’s permanent? If we are mortal, shouldn’t our feelings be mortal, too?).


* * * Comments * * *

Really, Truly True Things: A Top Ten List

Perhaps these things are obvious to everyone else but it’s taken me 43 years.

1. You only get one body in this life.
2. If you don't talk much, people will think you are smarter.
3. Water is the best, but single malt Scotches rock.
4. True guru-style wisdom is always a surprise and it comes out of people you’ve started to tune out: Small children. Crazies. Your grandma who says the same thing over and over again. If you are paying for this kind of language (other than in books) or feedback (other than in therapy) you will not receive.
5. Fast music, even if you don’t like it, really does make you work out harder.
6. When you exercise, you will have more energy, yes, even that same day.
7. Caffeine really does make you smarter.
8. It is truly just as easy to fall in love with a rich man.
9. Driving and crossing the street are extremely risky behaviors.
10. April really is the cruelest month, but May, November, and January suck smooth red monkey hiney most years, too.


* * * Comments * * *

Cancer, Schmantzer. When Will We Market Death Awareness?

October’s over. The debris from the pink tsunami I see in every store I visit could be evidence of the recession or that people are as sick as I am of the idea that consumerism can heal our disease, which I suppose are the same thing. Or they could be evidence that this particular product push has had its day. Maybe it’s time for something new?

In October I got pretty hot in a debate on the BlogHer site on “Do we really need Breast Cancer Awareness month?,”  initiated by the great Denise Tanton. Suzanne Reisman followed up with her own piece, "Breast Cancer Awareness month is bunk." I contended that the pink has done its job, and it’s time to move on.

(I could also engage further in questions of how much funding BRCA receives compared to other cancers, the politics of cancer advocacy, the limitations of the American Cancer Society, the effectiveness of funding research versus reducing disparities in health care delivery and outcomes, how much money from these purchases actually gets to an organization, or how much each organization actually helps people with cancer. I could argue about the different types of BRCA, the ages they affect women, and the efficacy of mammograms for each type. I could talk about black women’s rates of death, which are much higher. Or about health care reform, pharmaceutical companies, and the changes that would make a bigger difference than mammograms. But I won’t do that here. [Do you like how I spent 124 words “not talking about it? Me too. Where’s a good editor when you need one?])

I do, in general, support medical research and public education about health. I have several friends who’ve lost loved ones to this deadly disease and I in no way wish to diminish their pain, or the courage presented every day by people faced with any cancer.

But I think it’s time for a change. (No, not that one, but thanks.)

See, we’re all going to die, right? No exceptions. And probably, we won’t be the first person we know who will undergo this fate, which many say is the only fate.

My public awareness campaign would encourage us all to plan for the inevitable. Here are the elements:
-- Discussion with your loved ones that specifically gives them permission to remarry and do anything else that’s important to them.
-- Write a will and make sure everyone knows it’s true to your intentions. If folks are going to receive bad news, might as well tell them now, or they will make life hell for everyone else. And for the love of God, put in a fund for a mediator in case of dispute so your family can avoid fighting in court.
-- Prepare an Advance Health Care Directive (I just preached about my experience the other day). Understand that this is a dynamic document, because you never know what the situation may be. Discuss it with loved ones but have paper to comfort and cover them in this most stressful time.
-- In some states, you may need a living will and some other documents. I’m not a lawyer. At least Google it, okay?

Naturally a public awareness campaign is necessary. People can be eased into the discussion. Just like “breast” 30 years ago, “death” is still a fairly dirty word and something most of us would rather not think about at the grocery store or in the garden products aisle at Home Depot.

But just think about the products in this campaign (of course everything is black):

-- Ribbons? Sure, what the hell, black ribbons. Satin, not grosgrain, those Swarovski crystals make a lovely accent and they get cheaper every year.
-- TV ads featuring famous actors: Don’t be morbid. Be prepared.
-- A panel on the bus: Talk about the end: it isn’t just for widows any more.
(and) How much do you love your family? Will love be enough? *
(and) Wow! What bargains! How much did you spend today to protect your family?
-- A frisbee: Life’s a breeze when your Advance Health Care Directive is in place. (Maybe we make a boomerang for Hindu outreach).
-- Bumper stickers: Shit Happens. That’s why I just updated my will.
(and) In case of apocalypse, I speak to Jesus. In case of cancer, I speak to Hospice.
(and) I wrote my will. What’s your excuse for driving like that?
-- Produce state-by-state kits of the necessary documents and sell at FedEx office, Target, etc. Cute designs for men and women, Gen-X and Gen-Y, Latinos. Lots of butterflies on the chick stuff, motorcycles for guys. (Yes, it’s all available for free, but to reach everyone you need a consumer option. As demonstrated by BRCA).
-- Partner with banks to produced branded kits to offer FREE when you open an account.

Yeah, I presented it as sort of a joke (sort of), but I do believe in this cause.

Don’t you think there’s room somewhere, somehow, for a more public discussion of what death requires of each and every one of us?

* Note the potential synergy with life insurance marketing -- we can learn from their successes and failures, and I bet they'd love to work with us. Win-win!


* * * Comments * * *

One of Many Shrines

I have a tendency to attack idols. Not too long ago Abel Keogh, the first widowed blogger I found on my first search just after my loss, advised a woman that her widower fiancee was "not ready to move on" because he had not yet dismantled the shrines to his late wife installed in his home. Ridiculous, I thought. There are good reasons for keeping visuals with the memories. And anyway, it’s rude to display family photos outside of intimate spaces in your home. I consulted important Miss Manners entries (Advice columns? Are those like blogs?) and drafted a forceful reply.

Then I looked around. Oy vey, are there shrines. Disrespectful as I am, I also pay obeisance to the vague spirit I’d like to have round me. Our old, tiny apartment had a milagro heart on every door frame in thanks for Gavin's surviving open heart surgery and its complications; those tin shapes are hung in this home too. And when he was very, very ill I did put together several shrines, even though none of them included his image until he died.

Here’s one that I set up next to the dresser mirror:
-- A thrift store porcelain saucer (in Japanese, cranes are often used on wedding kimono because they mate for life).
-- A blue and green glass heart paperweight, not my style, but heck, a heart.
-- One of Gavin’s many Ganeshes.
-- Two stones from our yard, which I saw as male and female: one, half grey, half white; the second, red and ochre, porous, with a hole in the top so you can see that it’s hollow.
-- A shrinky dink necklace I made for Gavin’s 55th birthday party: “55, still alive.” We gave these out, red or green cords assigned you to a team, and we planned to play “Survivor”-style games. More than 100 people showed up, the barbeque was about 8 pizzas worth of calories short, so we managed to judge the sculpture contest segment before we decided to just hang loose.

On the other of the mirror was a similar niche holding a virgin sculpture (from Oaxacan honeymoon), something paper, perhaps a ticket stub, and Milagros for whatever parts needed healing at the time (kidneys, heart, arm). After he died, I carefully stuck his boy scout compass there to help me find balance, or North or something. It's all packed up now for the move.

It makes you think about people's homes and faiths: how many shrinelets do folks really have in their homes? I'm always kind of spiritual, and as a UU I have room for pagan object faith, but if Abel Keogh addressed it, is it really that common -- not just a special spot for family pictures but a little haven for the household Gods?

* * * Comments * * *

My Testimony: Reforming End-of-Life Care

I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.

You can see the list of testimonials here and please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).

---

As for my experience -- I have a lot to say about health care in America, and how the system as a whole has served and failed my family. My husband and I were informed and intensive users of medical services for routine care, to manage chronic conditions, and in his fight against cancer. After 40 years’ experience in what I had come to think was a very “medicalized” life, I feel I can make the biggest difference by testifying about my experience with end of life care.

However: if you are interested in more evidence against the thieves and liars of the private health insurance industry, and their captive government regulators, I’m happy to provide the evidence offline. Just wink.

I’ll also say that a public option is a must: we were fortunate to live in a state that provided a way into private insurance for self-employed people with preexisting conditions. Despite its limitations, we would have been much worse off without it.

---

The real story here is about death. The inevitable. The universal. Americans don’t ignore it: it’s in the news every day, and gosh we just eat up those vampire books.

But here’s the rub: No one should receive a diagnosis of a stage IV cancer without entering into a conversation about their final wishes.

Yes, you can fight, and you must. Strap on your Bernie Siegel and visualize away. Get everything you can from conventional medicine and stimulate your immune system with herbs all you want. (Nor should anyone be set adrift in a sea of unbelievably expensive decisions. Choosing a path for treatment should not be like choosing an entrée. I wish we’d been assigned a patient navigator.)

But understand at the same time that we are all dying. Gavin and I had had experience already; we thought we were more aware than the average bear. Patients with terminal illnesses and their families lose sight only occasionally of the black wings hovering over our shoulders. We revel in the deliciousness of this day and in gratitude. But that doesn’t mean we’re really dealing with it. Denial is complicated, and honestly, not entirely a bad thing. It can be pretty useful if you have a life to live in the meantime, and don’t we all?

But once you get really sick -- particularly after a catastrophic diagnosis like ours (which can bring on symptoms of PTSD) -- you really won’t want to cope with your will, wishes about burial, or plans for those left behind. Thank God Gavin’s advance health care directive was already in place, because I don’t think we could have done it while he was sick.

Nothing stayed the same for more than a few months. One therapy seemed to push the disease back a bit. Recovering from surgery (Gavin had two big operations) is a hurdle that requires you to build up energy and fortitude. It’s satisfying to have concrete goals. It was easy for us to forget that every step was considered palliative care from day one.

Please don’t get so far into positive thinking and manifesting whatnots that you forget you’re mortal, like we all are. Yes, you might get a miracle; but have a plan B.

At parties, we used to say that Gavin was just dying a little faster than everyone else. When we’d get in the car I’d point out he was at more risk from the daily road risks than from the cancer (especially if I was driving. But that’s another story).

For a time, even on the downhill slope, my dying husband and I were able to adjust to each lesson or new fact or change. But the last six months were a decline of breakneck speed punctuated by the brightest rays of hope: two new drugs were approved.

It didn’t matter. The first miracle drug destroyed his quality of life with fatigue that he couldn’t tolerate, despite the fact that it was working. But it looked like he had a second primary. Then one titanium strut supporting his spine broke. Then, mouth sores. Weight loss. Planning more radiation. Candida. Edema. Shingles. BOOM BOOM BOOM BOOM. Whatever you do under these circumstances, you turn away from earth. We looked up, away from each other. And we got less and less able to talk about “next steps.” The wings were beating furiously, too close. Neither of us wanted to hurt the other.

I know his death would have been easier if we’d entered hospice sooner than 3 days before he died (even the experts didn’t think he’d go that fast). Maybe he could have been at home instead of spending most of the last 2 weeks in an ICU. We might have thought differently about the risks of that second, brutal surgery. I know that Gavin had interventions that were painful, destructive, and expensive – as well as pointless.

Studies have shown that patients have “better” deaths and families grieve differently if they have individual, realistic conversations about end of life care.

Yes, our medical team did the best they could reading our states of mind and the level of conflict -- with the end, with each other -- at each appointment for 22 months. I’m sure they intended to ease us into hospice. If only there hadn’t been so many twists and turns. Or maybe if we’d been more open.

It shouldn’t have been our choice. Maybe it sounds like “planning to die” to you but having this conversation is really the only way to balance your family needs, religious and ethical values, and the non-negotiable reality of biology.

I hope I’ve illustrated how often things can change: how mixed are death’s signals. You can’t really “plan” how it will work out, but if you have an existing relationship with a hospice counselor you can discuss how you’d like to approach different scenarios. An Advance Health Care Directive is just an outline, but it can provide a basis for making ongoing decisions that comforts you and your loved ones who really, I tell you, WILL be forced to make decisions that they will always have mixed feelings about UNLESS you contribute.

It sounds awful, doesn’t it? Having to think about “how” and “when” you might die, about radical interventions, telling your loved ones whether you want food, water, what. But I watched my husband die, and I want to say I’ll never be scared of any conversation again. Words don’t break flesh down to a wisp. Worrying about hurting Gavin’s feelings, or about jinxing his miracle, were inconsequential fleas of politesse next to the Big. Giant. Mortality.

Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things:

“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.” -- Pope Paul VI (1897-1978)


There are dozens of ways to get comfortable with your own mortality: Art, music, poetry. Psychotherapy, film, faith. Structure, freedom, study. (Bonus: you get to sound "deep" at parties.) But you have just one “today” to begin.

Above all, keep those you love close as long as humanly possible by sharing your thoughts on the end.

* * * Read more testimonials about health care by widows and widowers here * * *

* * * Comments * * *