The luxury of choice

I recently told a friend, who happens to be a former colleague, that I watch House for professional development. She laughed. Nevertheless, it's true-- my training focused on the molecular level, and not until my current job did I need to know much about organismal, particularly human, biology.  Medical story lines on the show are pretty well researched, and they make interesting and weird connections-- all pluses in my book. But the real reason I can watch the show in that particular way is the writing. No, not because it's that good, or because they place all the clues out in the open. No, it's because they are forced to write the episodes starting from a medical scenario. 

What that means is that while they can and do develop the characters of the doctors on the show to reveal facets of personality or elements of background, to fill in the dimensions, to make them believable, at least to a degree, they have far less flexibility with the patients. If the patient in episode N needs to collapse unexpectedly in the opening sequence, pee blood right before the first commercial break, go into v-fib seven minutes later, fail to respond to the first several treatments House was sure were going to work, lie about something or other, and finally recover or die with enough time to spare to give some  screen time to the storylines about doctors' personal lives, well, that just doesn't leave much room for dramatic  and believable character development, does it? Which suits me just fine. If I don't buy the patient as a real character, I can concentrate on the medical aspects. So yes, professional development. With a side of ahem... eye candy, as my sister calls them.

One teeny tiny complication there-- they do develop their doctors as characters. Which is normally a good thing in a TV show. Completely messes with my frame of reference, though, when they make one of their own a patient. Can even make me cry when they then kill her. Yes, the season finale. Very well done episode, wherein they try and fail to save the life of one of their former colleagues who is also the newish girlfriend of the title character's best friend.

Tears show up for me a lot these days. Any report about collapsed schools in China is guaranteed to make my eyes water. Music can get me to well up, and I won't even watch some movies that I expect to be upsetting. And yet, over the last week I watched over a season of House on DVDs (thanks, sis), learned a bunch of new stuff, made some cool connections with the things I learned over this past semester, but didn't cry once.  I cried over that season finale, though. Couldn't articulate why. So I watched the second half again. Brilliant move, I know. But my need to know what was affecting me so much was greater than my need not to be affected again. I guess I can be analytical like that.

The second time I saw it, I knew right away. It was the dying doctor. Not that she was dying, but that she was making a choice, and articulating that choice. Her boyfriend asking her why is she not angry, why is she ok with dying. Because, she says, that is not the last emotion I want to experience.

She was dying. There was no way out. No choice, it seems. But she found something she had control over, and she made a choice. And the reason it made me sad, profoundly, deeply, for days after, is that I realized not everyone gets to make choices.

One of the things I try to do in my parenting, one of the things I articulate for my daughter is the issue of choice, of responsibility, of consequences.  Most choices children make are not of great consequence. You can choose to wear X or Y today. You can have this or that for dinner. But slowly, as they grow, so do their choices, and the consequences of those choices. Watching my daughter make increasingly more weighty choices has been one of the subtle pleasures of parenting.

I have appreciated for a long time,  from the very beginning, actually, that after A died, we did have some choices.  I chose to start the induction that same night, and to eventually accept pain relief, even though I wouldn't have likely for a live birth. We chose to name him, to hold him, to take pictures, to follow our doctor's recommendation and ask for the autopsy. We chose things after that too. Telling Monkey the truth, but not taking her to the funeral. Leaning on our friends, but not letting them come to the funeral either. Going back to work when each of us did. Many, many choices.

What I didn't appreciate, the way I never looked at this before was that making choices is yet another thing my son never got to do, will never get to do.  Babies have preferences, but no choices. His entire human existence passed, and he had no control of it, he never got to choose. I don't know what the last thing he experienced was. I do know he didn't get to choose it.

Maybe I am nitpicking. There are so many things that our babies won't get to do, so why am I focusing on this? My son also never drew a breath, but that thought has never made me sad for days on end. What is it about choice that makes it so fundamental to me, a loss in its own right? Perhaps it's all about what choice means to me. Autonomy, ownership, even avoidance of guilt. Because to me making a thoughtful choice means making the right choice.

I know that not everyone feels this way about having choices. I know people who hate having them, hate having to make them. So this is what I wanted to ask you today-- how do you feel about choices? Are they a cornerstone of human experience or a giant cosmic torture?

grade me not

So once, when some (!!) people said and acted really insensitive and stupid to me, I cried. Not right in-front of them. I was hypocritical, weak, and dumb. So I acted like it was ok but once home I burst into tears. And so poor R had to comfort me and he told me, "In times like this, you really get to see the true mettle of people. You know what they are really made of."

Whoa. That made me tilt my chin up. Huh! Now I have been placed in a position where I can judge and evaluate people, woo-hoo! So, based on what they said or did not say; did or did not do, I get to grade them, yes?? I get to tick off what they are made of. Heck, if they appear in-front of me wearing a shirt the wrong hue or a pair of sandals I just hate, I can give them a thumbs-down and put them on a black list with skull-bones and hissing snakes as border. Wow. It's like getting a new toy.

Except, very soon, a small little voice in me asked, "So you think you can judge them because your baby died?" I have flashbacks of soap operas or movie scenes wherein one accused the other, "Don't think you can judge me just because you are blond/taller/bigger/fair-skinned/older/skinnier/younger/drive a fancy car/have a PhD, etc!!!" There was not one that said, "Don't think that you have a right to judge me because your baby died!"

No, I have no right. Sure, there are dumb ones, clueless ones, obnoxious ones, whatever ones, but I am sure at one point or other in my life I was also dumb/clueless/irritating/annoying/obnoxious/crappy, etc.

So, I was deflated. Chin down to chest. I slumped back down into my little corner to ponder life after a loss.

BUT. I was not left alone.

There are people who think they can judge me because my baby died. Grade me even. You know, how well, or how awful I am coping? How slow I am getting out of my grief. How bad I am mothering my two living daughters. How I could have done more. How the house could have been neater, since I do not have three, but only two kids to handle. How I must be in self-denial. How I am ruining my children's lives. How I should be over it already, and quick! have another new baby! How I think too much. How I am thinking the wrong way. How I am blah-blah-blah or how I am not blah-blah-blah. I am either too blah-blah or not blah-blah enough.

I don't need all these evaluations, judgments, or advice. Unless I ask. And sometimes, I do like to know, like if I totally am beyond salvation; if I should just go jump off a cliff already, or if i have a halo above my head. If the cake I baked is out-of-this-world or awful-inedible. If I really should get some hot-pink lacy underwear, or if my face resembles a prune by now. But, often I get unasked for judgments and evaluations, and even more harassments, without my asking. I just need to stand there and whoosh--- watch out! there they come.

Why? Is it just an expression of the overwhelming need to be of help? And thus, they have to give an opinion of how I am doing? Is it an art of conversation? To tell the other where they are on a certain scale? (Good/not bad/ failure/ try again)

How do they know? What makes them the expert? What makes them think that they know? But really, if they wanna help... come and clean my house. Come and cook my meals and do the dishes and scrub out the kitchen grout. Buy me a good supply of expensive chocolates and/or truffles (dark ones ONLY, please). But really, if you cannot bring me back my baby, just sit there. Just hold my space.

Sigh. I just want to be a human being. That means, I am not static, even though it may look that way. But bear in mind that you are not in my skin, and looks are deceiving. Being means to be, and that -ing part means ongoing. To me it means constant change of the state of what one is. From one second to the next; from one breath to the next. Even if I choose to remain in a state for a longer period, it is my decision. It is my journey to walk. (If you tell me everything happens for a reason, then maybe there is also a reason why I need to freakin' dwell.) The best you can do is walk alongside with your mouth shut, unless I am stepping right off the cliff; or a bear is breathing down my neck already or you can run and get me water when I run out; or keep watch for me when I need to sleep. And you know what, journeys are not necessarily made in a straight line. Not every journey is a straight line between destination A and B. Sometimes it is a circular path that needs to fold over and revisit some places. I sometimes think it is a spiral, always coming back to some same points, but passing with a distance, and it is never static. Although sometimes I do need to sit down. Or lay across the road. (If you come across me like that, step over. Please do not try to evaluate if I am dead or alive.)

But please, let me be. Just like I have no right to judge you because I lost my baby; you have no right to judge me because you have not lost a baby. Especially if you do not get it. Don't tell me what to do.

I know, the line between being concerned and being intrusive is very fine. Sometimes it takes intrusion, a gentle one, to express concern. It truly is not easy being a friend to one who walks the grieving/healing path. So I thank all those who have done so and for being so patient and wonderful. And those who have stuck around despite my sour face the last months? Precious.

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What about you? Do you feel judged and evaluated? Do you feel concern is sometimes intrusive? What are the best ways someone can express concern without making you feel evaluated or judged?

The Rule of Thirds

“Keep in mind the rule of thirds:  one-third of your friends will be supportive of your need to mourn, one-third will make you feel worse, and one-third will neither help nor hinder."

--From Alan D. Wolfelt, Healing A Parent’s Grieving Heart:  100 Practical Ideas After Your Child Dies

A good friend who lost her husband very suddenly to a brain tumor in ’04 sent me this book last year after Maddy died.  She liked the “Spouse” version, and being cut of a similar cynical edgy sports-lovin’ foul-mouthed cloth as I, thought I might appreciate Child version.  I did, it’s the griefbook I appreciated most, and still find myself picking it up a year later.  One thing I really like about this book is that every page is a topic with a few bullet points, so you can open it randomly and discover something, and if something sits wrong on a particular day you can just flip to the next page and see if that feels better.  (Or put it down, and pick it up months later.  I find it to be rather timeless that way.)  No need to sit and feel like you need a few hours to go through something linear.  I also like that, for-all-intents-and-purposes, it’s genderless and can be applied equally to a husband or wife -- and let’s face it, very little out there on this subject can be.

I'm sure I read this particular passage long ago, during the first pass, but wish it had stuck.  It did not.  And so I am constantly amazed at those thirds who fall at the ends of the spectrum, the ones who surprise me with their understanding and kindness, and the ones who floor me with their inability to show even a modicum of compassion.  The other surprise for me was that this “third rule” included family.

Let’s start with the innocuous middle third.  There will always be those who will treat your life-altering experience as a vacation:  you were gone for a while, you came back, maybe shared some pictures and stories, people mingled around the water cooler for a few days to follow up, and then it got dropped and life moved on.  At some times I’m a bit taken aback at what appears to be complete ignorance (“Did I tell you?  You do know that my kid died, right?”) and yet 30 seconds later am so fucking relieved to be deeply involved in a conversation about how maybe I should pay attention to the  Penguins in the playoffs this year.  Aback that they wouldn’t say anything, relieved that they said nothing, all the while rather pleased that they don’t view me as some bad jinxy hex that needs avoided altogether (although I may be missing some crucifix and garlic waving when I turn to leave).  And frankly I’m at the point where I’m rather pleased that I can go places and talk to people WHO KNOW about things like books and dogs and whether the Steelers did right in the draft (another quarterback?  really?).

I’m constantly surprised by the bookends.  I’m blessed to have some very good friends and family in my life that I knew would be supportive, and they are, but I’m always so impressed by how much.  These are people who have such grace, they make it seem so effortless to say the right thing at exactly the right time.   I end up thanking them, they are just so meaningful and classy, and they look at me as though I’m thanking them for breathing or combing their hair – they simply can’t understand what it is they’re doing that warrants praise when it is simply how they are.  And I realize:  I probably wouldn’t be one of these people if I were on the other side of this mess.  I’d be tongue-tied, never knowing what to say, not horribly sure of my own emotional sanity, and probably wind up in the innocuous middle chatting about the NFL draft.  

But I know I give thanks, and am so surprised by the outpouring of kindness, because of the other end of the spectrum where people shock me with their unsympathetic cruelty.  I don’t think in a million years I would’ve thought that someone could turn my baby dying against me, but indeed, some have.  If someone had told me the day after Maddy died that friends and (gasp) family would not just behave awkwardly around us but actually treat us poorly I would’ve scoffed.  No way.  People are not that stupid and cruel, are they?  (are they?)

Um, yes, gentle reader, they are.  It really began in earnest around six months after.  And suddenly  people began leaving signs in fluorescent paint:  enough.  Stop.  You’re wallowing.  Party poopers.  Isn’t it time to move on?  How dare you suck the life out of someone else’s joyful event.  Don’t want to call me?  Well, two can play at the game.  Apparently six months is about the time when the people of little patience move into that end of the spectrum, and begin a not-too-subtle dance of pushing you, hurrying you, belittling you, ignoring you.  I think it dawns on others, if you’ve ignored them for this long for other reasons (say, they have children that would’ve been the age of your deadone and they haven’t been horribly involved anyway, staying in the middle third for so long), that you’re avoiding them.  No, you’re angry at them.  They develop a complete psychosis about how you must feel about them, without them asking you.  And if you’re unlucky, someday they’ll dump it on you – like one of my neighbors did.

Perhaps most surprising and upsetting to me was that family fell into this category of the “make you feel worse” third.  I should add a disclaimer here that I do have a couple family members – one who I assumed would handle the situation poorly given past experience, and another who had a baby shortly after who we ceased contact with – who have flabbergasted me with their solid appearance in the front end of the spectrum.  They are patient, articulate, compassionate, and the latter even defends us against the detractors despite the fact that we haven’t seen them much since the birth of their son.   But to think your own flesh and blood would grow tired of your grief -- tire of hearing of their relative!  Maddy!  Don’t you miss her too? --  impatiently try and hustle you along through the alleged grief steps (“They must be in that anger phase”), wonder if you’d ever snap out of it.   And then do things like fail to show up at a memorial service for your daughter after promising they’d be there, refuse to answer your calls (even on holidays) after telling them they were disappointed, and as Julia so eloquently put it a few days ago:  refuse to check their shit at the door.  It’s not about them, none of this.

I’m torn; while I’m relieved to look around the blogverse and realize other people’s families let them down too and we’re not the only dysfunction to arise from the ashes of a deadbaby, I’m also saddened that it seems to be such a pattern.  There’s a dissertation to be written here, about the pressures such tragedies put on extended families and how they deal with them long term.   Are they more invested in our happiness than our friends, neighbors and coworkers?  Or does the law of averages simply say that a third of the people you run with, no matter their relation to you, will fall over there, off the edge into a pit of selfishness and denial and ignorance?

But when they get me down, I flip over and revel in the wonderful part of the spectrum again, and wonder why it is that everyone isn’t wired like that.  I would like to think behaving that way is human.  It’s clearly not.

collateral damage

I know that Mother's Day is, for many of us, a difficult day, a day on which we think about our lost children, mourning the fact that we don't seem to count as mothers in the eyes of the world or, perhaps, in our own eyes, mourning the fact that all our children aren't with us. For me, though, Mother's Day has never been about me or my children. Instead, it's a day on which I think about my own mother and mourn the fact that, for reasons I can't quite understand, I'm not with her.

My brother and I always said that no occasion was truly complete until our mother turned to me and said, more in sorrow than in anger, "Niobe, you've ruined my [insert name of holiday]." I ruined so many Mother's Days and birthdays and Fourth of Julys and Thanksgivings and Christmases, that I imagine my mother, as she has brunch today with her other children and step-children, taking a certain grim satisfaction at the idea that, on this Mother's Day, I'm sad because I'm thinking of her.

I've never been able to explain what made things so difficult between me and my mother. Different temperaments, perhaps. Or because my childhood coincided with a long run of turbulent years for her. Or because she disliked and resented her own mother. But, for whatever reason, it seemed that I could never be what my mother wanted me to be, could never do what my mother wanted me to do. We were always fighting and I always lost. No matter how angry I got, my mother could always get angrier and she held the trump card. I loved her and I couldn't be sure if she really loved me.

When I was thirteen, during the chaos that followed my mother's second divorce, I decided to go live with my father and his family, and left, taking my little brother with me. My mother didn't speak to me for six months. She remarried right away and had a child with her new husband. "Niobe," I remember her saying, "you have to remember that I have another daughter now. I don't need you anymore."

Eventually, I grew up and we came to a truce. We weren't exactly close, but we didn't fight and I called my mother almost every week and, once in a while, spent a weekend at her house. When I was pregnant with the twins, my mother was thrilled. She was going to take a month off from work to stay with me. She called all the time to see how I was doing. I know she was buying baby presents, though I told her not to give me anything until -- until I was sure everything was going to be all right.

When it turned out that everything was not going to be all right, my mother came and visited me in the hospital, talked to me, encouraged me to eat. But even then, I could feel her anger building and, by the time I came home, everything I did made her furious.

I was, she told me as I cried and refused to go outside, wallowing in my sorrow. I spoiled my oldest niece's first birthday party, held a few weeks after the twins' deaths, because I hid in an upstairs bedroom, unable to bear seeing the sister-in-law who was eight months' pregnant. I put too many restrictions on what she said, because I asked her not to talk about my stepbrothers' babies. I wasn't grateful enough for all she'd done for me. Now, a year and a half after the twins' deaths, my mother has refused to see me or speak to me for months.

Now, I'm sure I'm making my mother sound like a monster. But she isn't. Really, she isn't. And I'm sure that if she ever read this post, the story I'm telling would be incomprehensible to her. "That's not the way I remember it," I can hear her saying. But, as I see it, the loss of my mother is, in many ways, the saddest part of the twins' deaths. A stone, dropped into a lake, disappears almost immediately. But the ripples -- oh, the ripples. They etch widening circles until they collide with a distant shore.

Happy Mother's Day, Mom. I love you and miss you and wish I could fix whatever's wrong between us. I hope that by next Mother's Day I'll be able to say that to you.

Please use the comments to let us know where you are -- literally and figuratively -- and what you're thinking about this Mother's Day.

To the core

You know what annoys me, like, a lot? People around us who manage, effortlessly it seems, to make their interactions with us in our grief, yes, say it with me... all about them. People who make a production, often somewhat publicly, out of agonizing over whether to call their grieving friends, and of what to say. The sort of backdoor self-compliment highlighted on last night's 30 Rock-- "It's hard for me to watch American Idol because I have perfect pitch,"-- the "It's  hard for me to talk to grieving people because of how sensitive and considerate I am" sort of thing.

Luckily, we didn't get many of these directed at us. This past winter, though, I got to witness a public (in as far as an open post on the wilds of the internets is public) display of woe-is-me-I-want-to-be-the-bestest-friend-ever-but-
-it's-so-hard-how-do-I-make-everything-better bit. It took me a few minutes to figure out what was so distasteful to me in that piece of writing and the follow up comments from the author, but then I got it-- it was all about her, about her desire to fix things so she can be seen as the savior, the one who did the right thing, the rightest thing.

Now, I get that humans are self-centered animals, and I am certainly not blameless on that front myself. But dude,  if there is one area, one effing area of human interaction where it behooves you to check your shit at the door, this might be it. Don't you think? I get, too, that doing something, anything, makes people feel less powerless in the face of the big bad random universe. But see above re: checking shit. Because making yourself feel better at the expense of the person already in pain is.. how do I say it... oh, yes-- a pretty shitty thing to do.

This concludes the rant portion of today's post, and brings us to the part where I contemplate, much more calmly, I hope, thoughts this brought up.  

In that post, a few commenters tried, very gently, to tell the author that in grief there is no fixing things, that basically all you can do is be there for your friend, but she wasn't listening. But, but, but was all she had to answer. Finally, Aite, a good friend I've mentioned before, basically gave it to her straight-- it's not about you. Entering the grieving person's space should not be about worrying about how you will look doing the entering. You can't fix anything. Grief is what happens when there is nothing to do. Don't try to fix it, and you won't look dumb. You can't "remind" someone of their grief-- they remember all the time. Whether they want you to bring it up or wait for them to do so is individual, and you should follow your friend's lead in that, but assuming that people forget and you can remind them is pure wishful thinking.

My friend is mighty skilled in this art of abiding, being there for your friend, selflessly, at whatever distance and with whatever in hand your friend needs. I hope, too, that what we are doing here, in this space, is also very much abiding. Talking, listening, not trying to fix the unfixable. Now, if only laptops could dispense booze too... I'd send you all a drink or five.

So who is this grieving person now? If you are the one doing the abiding, who do you assume is in front of you? Is the grieving person changed, forever altered by the grief? Or is this the same person you have known all this time, only in pain and grieving? Are we changed or are we, at the core, the same?

My first impulse was to say that of course we have changed.  A deadbaby blogger who has since gone private was told by one of her friends to not let this change her. What a shitty thing to say, was my immediate response. Would you tell that to a mom who has birthed a living baby? Hell, no. It's a foundational value of our society that parenthood changes people. In the classical mythology of the media and entertainment as well as the assumed playground wisdom, there are things only a parent can understand. Condescending? Of course. But also pervasive and commonly accepted. So why would people not allow it as the same level of truth that having a dead baby should change you? Change you as profoundly and as deeply as having a live one is assumed to change you? And also, don't we all change just by living? Would you want to still be your high school self?

But isn't it also true that we are the same basic people, only now with extra crunchy shitty experiences included? Extra sad.  With extra tender feelings. Extra sensitive to things people say without thinking. Maybe even wiser and more compassionate. But with the same chewy center?  

What defines us as people? Are we changed abruptly, or are we in the process of integrating our grief into the fabric of our selves? Are we defined by grief, or are we living towards defining our grief as a part of our selves? Are we changed, or are we ever-changing?

my son may be in your vacuum cleaner

Seriously. You may wanna go check.

Ferdinand was cremated. There is a possibility that some of his ashes, minute particles of them, escaped the plastic bag that it was supposed to be loaded into and tied firmly and then placed in a plastic box and then a velvet bag and then handed over to us with sympathies.

Some of the ashes may have flown undetected onto the floor of the crematorium and carried about by the shoes of the good guy who helped us cremate our son. Maybe some tiny particles of my son’s ashes got onto the good guy’s shoes and it got thumped off at the post office when he went in to get his mail and some of the dirt was sucked up by the ventilator which re-circulated it into the mailroom and got shuffled into the mail and then got stuck onto a part of an envelope and maybe that envelope is somewhere in your house.

When his ashes arrived in Singapore, at the temple, and they were emptied, from plastic bag to urn, and the breeze, almost ever-present, might have swept up a whiff of the ashes, and they got mixed into the food being prepared for the temple lunch. Or, it got stuck onto somebody’s sweaty arms (it is very humid there) and got carried all over the small island-state, or that somebody got onto an airplane headed for the Swiss Alps and so a part of Ferdinand ended up in a different continent. Have you had a guest recently? Check their shoes, you may find my son.

Before he was cremated, I held him, hugged him tight, and kissed him. Tried to make an imprint on him and tried to engrave his body onto mine. Maybe some of his skin cells were brushed off and stuck on to me, for a few seconds. Then, they may have fallen onto the floor, and got swept out of the funeral home as we exited. The wind from the hills may have swept those cells up, carried them across the country, and dumped them somewhere on the East coast.

The dust may have fallen into your house when you opened your door or your window. You decided to vacuum the house. And there he goes, into your vacuum cleaner.

Or, a few molecules of my son’s ashes may be fertilizing your tomatoes right this very second.

I do sound like I am spinning a tall tale, aint’t I?

Except, we know that everyday the world is on the move, in every sense, whether you take the macro- or micro-view. Foods are transported over long distances, and with them, dust. Air circulates, moves over distances, taking sounds and smells and small tiny particles, including human ashes, with them.

Dust is very tiny. Anything smaller then one-sixteenth of a millimeter in diameter can be defined as dust. They come from everywhere and from anything- dirt, pollen grains, tire rubber, salt sprays from the ocean, skin flakes, fire ashes, volcanic eruptions, desert sands, animal fur, and, let’s not forget about cosmic dust. You may have star dust in your vacuum cleaner too.

When a supernova explodes, it sends small particles of dust far out into space, and some of this dust falls on Earth. You may find some of these cosmic dust particles inside your nostrils.

What is more fascinating is that you cannot destroy dust. You dust, vacuum and sweep, and pour everything into your garbage can and think it is good riddance when the garbage truck rolls around on Monday morning. Well, some of that dust is still on your driveway because when the garbage gets dumped, air gets moved and the air moved the dust too. Rumor is, dust from the dinosaurs still remains, because there is no way you can destroy dust. They move around, get mixed into things of all sorts; things break down, and the dust re-surfaces again.

Come to think of it, dust is a beautiful thing. And so indestructible. So durable, it is forever. Forever swirling around. Here, in my house; there, in your house; on earth, over earth; in the vast Universe, and probably beyond too. Ferdinand, my baby, in my current system of belief, is part ashes, part dust, part soul and part spirit. And so he may well be everywhere right now.

Perhaps in your vacuum cleaner, too.

I will never look at the world the same way again. I will never see dust the same way ever again.