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Thursday, August 6, 2009

Fight! Fight! Fight!

Greeetings, Weepsters!

Goodness, I didn't realize that last post was going to turn on the waterworks for so many readers. Well, what would life be without a good cry every now and again, right? I even watered up while writing that one. It's funny; I showed that post to Kevin (who, incidentally, stopped reading my blog a long time ago - the dastardly bastard), and his response was: "I don't get why this one is making your readers get all sappy and emotional. It's just...a post about my school reunion." Sigh. Men.

Moving on...I was going to talk about something lighthearted and silly this morning in the spirit of balance and contrast. But then good old Stirrup Queen brought my attention to a recent article in the Washington Post, in which staff writer Alan Goldenbach laments society's apparent inability to talk about stillbirth. My gut reaction to this article was surprising even to myself, so I'll share that here and save the fluff for next time.

Here's the thing (sound familiar?): Goldenbach wanted answers about his own son's dirth, but his doctors pretty much dismissed his questions and were reluctant to look more deeply into possible preventable causes. Cord accident or something similarly, unnervingly vague. Shit happens, they basically told him. Goldenbach's point was that everyone, even doctors, are unable to talk about stillbirth and its causes and possible prevention measures, and that this was...well...frustrating to say the least.

But what really caught my attention wasn't the article itself, but the eye-popping comments that were posted by readers in response. Check out these zingers:

"Oh, for pete's sake, people. I'm a mother, so I understand how crushed you all must be if you have lost a fetus or child. Nobody should have to go through it, but surely you realize it is a fact of life that people die at every stage of development and life from causes that are nobody's fault. Some of the bits of this article and the comments are ridiculous. Everyone should be told of all the miniscule risks that nobody can do anything about?"

"Our planet has 7 billion selfish dolts running around on it already, with projections for 9 billion by mid-century. So when Mother Nature occasionally decides to cull or limit our human herd, it's best that we not overanalyze her judgment or resist it to any great degree. Instead, let's learn to embrace Nature's judgment and properly resolve that, when our number is up, we go quickly and courageously for the good of the whole."

"I hate self-indulgent first person pieces like this that have come to define the health section."


Yowsers! Seething, searing verbage! Sounds like some shit is going down, if you ask me. Doesn't that make you want to gather around the hallway in highschool and start shouting FIGHT! FIGHT! FIGHT!? The Black-Clad, Pierced-Genitalia KuKd Fighters verus Pale-Moon-Faced Anonymous and Insensitive Commenters Who Clearly Don't Get It. Fist-swinging, hair-pulling action:


Let me start by saying that as a (god, I hate this word) blogger (actually, I'd prefer to be on the called a Caffeinated Talkaholic with a Laptop Stuck to the Tops of My Thighs) with a couple of dead babies under my belt, I initially felt this odd sense of reponsibility for "defending the KuKd tribe," so to speak. That is, springing out of my butt-imprinted chair, arms flailing, and screaming out the most obvious response that others might expect:

THOSE INSENSITIVE, DICK-HEADED COMMENTERS!

In fact, we might all feel better if we stood up together and said it. Come on, everybody now. One, two, three: THOSE INSENSITIVE, DICK-HEADED COMMENTERS!

Good. We can all breathe easy now and settle down.


* * *

But I'll be honest here. Philosophically, I agree with the core meaning of those comments. Don't sue me for this; I just do. I think Jesus would agree they're true (and nobody knows Jesus better than I do). I think Mother Theresa and Ghandi and the ancient Greek gods would agree they're true. Those comments could very well be posted by people in my own circle of highly opinionated friends.

Now, do I agree that these things said by commenters are 100% right 100% of the time for 100% of people in the world? No. Do I agree with how/when/where/to whom they were presented? No. Were there about eight million better ways for these commenters to get their points across than sharing them in an irritated tone of voice with a man who has JUST lost his baby? Yes. Are these comments likely to do any good whatsoever in the grand scheme of things, change anyone's mind about anything, make the fact of death any less horrible for anyone? No - not in the way they were channeled. Wrong place, wrong tone, wrong time. Too bad for those commenters, and too bad for Goldenbach who as to suffer through reading them.

* * *

There was a post I did a long ago, back when I first started this blog, when my brain was still like a fragile 1,000-piece puzzle thrown hastily together and not quite in tact. I can't seem to find this old post, probably because I deleted it, fearful that I might offend someone in this emotionally charged, dead-baby blog-o-realm. This post was about the various societies and associations and organizations and what-nots "for the prevention of stillbirth" that I'd come across during my post-stillbirth Googling spree.

They were filled with lots of bold red fonts, grave and terror-inducing warnings about how often the Evil Stillbirth Monster really can be stopped! If only we know what signs to look for! If only our government understood, and would fund the research for this! If only our doctors weren't uncaring jerks, they'd stand behind us on our question for more facts! Join the fight against the evil nameless, faceless Dictator of Stillbirth today! He's up there like Darth Vador, controlling the gears as he looks downward at YOU, innocent and unsuspecting pregnant woman, ready to snatch your infant with the flick of a dark gloved hand!

BE AFRAID! BE VERY AFRAID!

These sorts of things didn't get me revved up in any way. On the contrary, they made me immediately click the "X" in the top right-hand corner and run into the other room. They seemed like dangerous pitfalls, beckoning me to come in to grope around bits of illusional control: "Moooonnicaaa! You could have done something diffeeerrentlyyyy! If only you'd been counting kiiiicccckkks....asking more questionnnnnss...You could be doing something nowwww....to prevent this in the futureeeee...if you sit here and Google enough shiiiiitttt....if you call your doctor enough tiiiiimmmmesss...."

And why NOT leap right into those websites, start making Excel spreadsheets showing every factor that has ever been correlated with baby-loss in the world so I could ensure I'd do everything right next time, and maybe even pinpoint the cause of Zachary's death - from breathing in urban areas, to petting a stray dog, to washing my hands fewer than 20 times a day, to eating a molecule of Brie cheese, to not instantly calling my doctor in a panic when I didn't feel the baby do at least ten full-on rounds of gymnastics inside my belly? Why not follow my doctors around the hallways and demand that they give me some answers, which they obviously had but were withholding, or simply weren't digging deeply enough to find them on my behalf?

It would have been completely natural for me to do so, to make that spreadsheet, even to start a stillbirth-prevention research group of my own. Just like with Washington Post writer Alan Goldenbach: it's a natural article for him to write, a natural frustration to have about our medical system, where he's looking for answers and not finding any. I looked this up, just to make sure I'm not pulling this out of my arse. Here's what a University of Indiana professor says:

"The bereaved feel a strong need to regain the feeling that their life, somehow, is normal. Unfortunately, the "normal" they now experience is no longer normal as they knew it before. They are caught in a paradox of needing a normalcy that is predictable and understandable while seeing a world that is neither.
One example of the coping that results from this quandary...is an effort to reclaim normal by actively seeking out and processing information about the loss. It focuses on regaining a sense of structure in the parents' lives, attributing meaning to the loss and events surrounding the loss, and the gathering of information that would provide a context for understanding."


So, regarding Goldenbach. I'm pretty sure that's the psychological place where his article comes from, where a lot of blogs in the KuKd blog-o-sphere come from, where a lot of frantic post-Kukd Googling comes from, where genetic counseling comes from, where switching doctors altogether comes from, where suing doctors for malpractice comes from, where years of infertility treatment comes from, where our incredible urge to research and plan and fix things comes from. And you know, in a lot of ways it's probably good that human brains are programmed to react to trauma like that, because sometimes - not always, but sometimes - all of that answer-seeking and researching and planning does have positive results, right?

That's the part those commenters were obviously not seeing or understanding. They were falling into the classic trap of viewing reality with blinders on, the way we so often do with all kinds of things. Analyzing death and looking for ways to prevent it, as Goldenbach was doing: it's either just plain brilliant or just plain idiotic, totally right or totally wrong, regardless of multiple perspectives or various nuanced sides of the issue. Same with abortion, the Iraq War, choosing plastic bags over paper, or any other political or cultural or social issue on this whole huge planet: people get into this ridgid, righteous mode of claiming that everything can be defined as either right or wrong, good or bad, in a binary way. It gets us in trouble sometimes. It makes us come across as assholes, as these commenters did.

And what a shame - because, as I've said, these commenters make perfectly legitimate points, in my opinion! All that good thought gone to waste because they couldn't step outside their own minds and see things differently, and respect where Goldenbach was coming from, and recognize that their comments wouldn't do any good in the context of this article. They couldn't change their tones a bit into something more helpful and positive for people who are grieving.
* * *


By the way, it's not that I didn't have my frantic-researching bonanza a-la Goldenbach. Calling the docs over at fetal medicine every day, making folders of information on fetal heart calcification, all that helped me initially, giving me this weird illusion that I had control, which somehow soothed me at the time. But I realized soon enough that this was pretty much just eye-candy, or soul-candy, sweet and caloric but not very nutritious, and not any real way to recover in the long-term.

Not to get all hippy-dippy, but in the end I sort of saw myself as a fluttering leaf on a great big maple tree of humanity. My baby was up there too as a leaf on that tree, one baby-leaf out of godtrillions. And when his number came up, his leaf was plucked and poof - he was gone. There were some genetics involved, but nothing conclusive. In the end, I felt OK with that, because to me, this never seemed like a preventable something. It seemed like a part of the cycle of life and death, a meant-to-be sort of occurance. What made me so special as to deserve anything more - more answers, less senseless death - than the hundreds of thousands killed in any given recent disaster? The answer I came up with was: nothing.

That's just me. I'm not saying that my perspective is the be-all and end-all way that everyone should view their own baby-deaths or fetus-deaths or even difficulty making babies in the first place. It was just what was healthy and best for me and my cynical, over-thinking brain.



So, going back to the Washington Post article (you knew I'd return to that, right?): would I go out for coffee with a group of those commenters? Sure. They've got strong opinions that I happen to agree with. I'd be curious to see how they changed their words, their tones, maybe even their viewpoints altogether, while actually sitting face-to-face with someone who has lost a child and not casting out comments from the safe and anonymous world of the Internet. Would I go out for coffee with Goldenbach? Sure. I can sympathize with his situation at the most basic level.

Maybe we could all get together in a park one day - a bunch of people from all sides -and have a potluck/share-a-thon.


Or not. :-)


15 comments:

Logical Libby said...

I used to argue with people who tried to give "advice" about the whole infertility thing. I used to try and make them see that what I was doing was my business, and that their opinions were just that -- opinions.

Now I just say "fuck it," smile and nod, and move on.

Heather said...

Would there be a water baloon fight at the pot-luck??
*sigh* you're probably right. I just can't help but go back to the whole Bambie philosophy...if you can't say nuttin' nice, you shouln't say nuttin' at all! It's clear that he was grieving. Why the hell would anyone be so cruel when a mans heart is laid bare over the death of his baby!? It's inappropriate and useless. I read teh article a while back when the comments were still soft. Probably a good thing. People have no filter when they are cloaked by the internet.

Mirne said...

My sister was giving me "advice" today about being sure that everything would be ok with this pregnancy. It seems all I have to do is make sure I keep an eye on this "pregnancy" and make sure baby is moving lots. After all "I know my baby best". Blah, blah, blah. She still doesn't get it. Something which I know all too well. I HAVE NO CONTROL. I can do everything right, and still everything may go wrong. I HAVE NO CONTROL. I agree with your picture of being a leaf on a tree. Who knows when the next wind comes? Who knows when the leaf is no longer strong enough to hold on? Who knows??

Being Me said...

The scary thing is, I reckon so many commenters like that WOULDN'T actually change their tone if sitting face to face with someone who's been KuKD'd.

I totally agree with you, in that I totally agree with their intrinsic comments. And you're right (again): it is more the tone, the pitch, the compassion for the wide audience they are writing to.

However...
"I hate self-indulgent first person pieces like this that have come to define the health section."

That is just vile. About as bad as a close relo of mine seeking me out on my blog and calling it self-aggrandizing, fictional crap and then estranging herself from us (we are also too hard to handle, it seems). Funny how 5 years on, I still see her work IP visiting me regularly.

See, they may "hate" people like us and our too-hard basket(case)ness, but the fact is.... we are also intriguing. How are we still breathing? Oh my, do we still laugh? Eat? Fart? Surely not! I have so often felt like some sort of social experiment. Now, I rather like the fact that my light can attract intrigued people to me. At least I know they'll perhaps learn something on a personal level, or make their own connections, it also makes it easier to grow their compassion and expand it out in their little corner of the world. And that's got to only be good, for the sake of the little leaf that may fall off the tree close to their home (if not in it).

Awareness and compassion. They're not new concepts! But apparently, they both still elude millions.

KuKd Chick said...

LOGICAL LIBBY & MIRNE: Yeah. That's hard to do for a lot of poeple, letting obnoxious comments just roll off like that. Wish we were all better at it.

HEATHER: Definitely was not the right place for those comments. They could have shared it with themselves over cocktails. Huge oversight.

BEING ME: Yeah, I don't know. My thought is that they might at least get an understanding of why people ask questions to avoid future death after experiencing death first-hand. They might gain some perspective on how/where to make those sorts of remarks in a more productive, less offensive way. The last comment does seem the most flat-out vindictive and accusational, not to mention pointless. It's the first two that I connect with. What they all have in common though is just misguided delivery.

The Unproductive One said...

Hey!

I've just nominated you for an award, go check it out!

http://unproductivelyso.blogspot.com/2009/08/awards.html

Rach
xxxx

p.s. I'm coming back to read this post properly later today and will post another comment then, I've only read a bit and my blood is already boiling LOL

Anonymous said...

Thanks for a great post. I love your analogy of the leaf on the tree. None of us ever know when it will be our time.
-Molly C. from Pittsburgh

Michelle said...

I think with this piece the man deserves some compassion. You are right if you strip away all the crap that they threw and read between the lines they are right. It is really nothing that we can do about. It is unfortunate and sometimes not really understandable with all off the technology today but they are right. I just really wish they could learn how to show some compassion. You can get your point across and not be so cold!

I often read comments like that and my instant thought is..."what did you really think you were going to do by saying that." I can't really believe they thought that the writer would be like..." oh you are so right I am so dumb. Thanks for showing me the way." No...it is does not seem like that is what they intended because you can say the same thing with a little (a lot) more compassion for people. And I believe that if you really hate what someone is saying then there are millions of other places you can go with people who have the same views as you because really that is what they want...for everyone to think like them.

I wish you could go to coffee with them maybe they could learn a thing or two about the right way to address things. You really have a way with words and the ability to express yourself that I admire!

the misfit said...

Ahhh...I'm with you on this one. The commenters were totally mean and unhelpful (who talks to a bereaved person that way???), but the information-seeking (to say nothing of the conspiracy theories) is a death trap. I'm not a DBM, so my conundrum is getting pregnant in the first place. And I recognize that doctors volunteer as little information as possible, and you often have to propose treatments and then they'll actually prescribe them. (Although mine has proposed everything sensibly so far - just no pregnancy.) But I don't want to descend into doing research about weird genetic mutations I could have that could prevent conception but are treatable by the topical application in unmentionable places of the boiled extract of a guava leaf, because there's no end to that road. So there's a delicate balance between finding out enough information to address your situation intelligently, and finding out information with such determination that you've lost altogether the ability to live the life you actually have without a complete breakdown.

Ah, IF. I imagine it only gets more interesting at the miscarriage/stillbirth party :/

KuKd Chick said...

Michelle: Yup, that's the thing that was missing. There was zero compassion in those remarks, no understanding.

sharonvw said...

I'm with Logical Libby on this one! My motto is: Just smile & wave, smile & wave!!!

Amy said...

Those comments in the paper were harsh for sure. Before I became pregnant I have to say I may have uttered something close to those hurtful words myself. Never in relation to babies dying, but about the overpopulation of the world and all that. I felt people die, and need to die to keep our earth from sinking in a polluted sea of humans. Shiver...I hope I never hurt someone deeply with those opinions.

I see things differently now, or at least with more compassion. I agree with much of what you expressed in your blog post.

I too did the desperate searching of the web to find anything that could explain Liam's death. I felt in isolated in the babylost world as Liam was NOT stillborn, yet lived less than an hour. He was born apparently healthy, with apgars of 8 - 9. I was angry, confused and searched for answers. Needless to say I found none.

I also found those sights that scare you into thinking if only another u/s sound had been done, just maybe...

But those only pissed me off. I had tons of u/s with Liam. I had one done the day before he was born. Each time we scanned him things looked great. I finally found peace in my heart that nothing else could have been done differently, no matter what the website suggested.

Liam's leaf was plucked from the tree and no one could have seen it coming. The end.

Giving up our sense of control is not easy and we tend to fight it with all we are.

Sara said...

I agree - the lack of compassion was the problem in the remark. Everyone is entitled to their opinion, but it doesn't have to be cruel. Especially when the commenter hasn't apparently experienced a stillbirth.

I found an incredible amount of solace by looking at the natural world in dealing with my miscarriages. There's nothing "fair" or "not fair" about it - it's fairly random, a roll of genetic dice. I rolled the dice and came up empty three times. I did discover some likely reasons for my losses, but those reasons aren't substantiated and don't explain everything. In reality, even if you have all the answers - you still have to put yourself at risk for loss again and again in life. There's only the illusion of control, and when that illusion is taken away - you have to go forward knowing it's out of your hands. It's been both liberating (I'm released from thinking I can do anything about it) and terrifying (it can happen again).

caitsmom said...

Awesome post. With you every step of the way. I'm in for the fight; I'd like to bring food, something messy and stinky. And yes, the face-to-face should change what people say to one-another---I hope. Peace.

KuKd Chick said...

Amy, I think you hit the nail on the head when you say: "I see things differently now." It's interesting - it takes experience to truly alter our perception of the world. The commenters on that website obviously weren't seeing Alan Goldenbach's reality (or the reality of a lot of other peeps out there with similar experiences).

Cool - I'm enjoying seeing other folks' feedback on this!