So I read the recent Huffington Post article by Dina Roth Port about how we need to talk more about infertility.  I’ll start with the positives — it’s very well-written and she makes some excellent points about why we need to come out of the proverbial closet.  I’m not going to argue with the fact that we do need to talk about infertility as openly as we speak about any other disease.  You build understanding via words.

At the time of writing this post, it had 249 comments, which means that the post also got people talking.  I didn’t dive into the comments because I know better than to dive into the comments on Huffington Post.  I’ve seen what has been written every other time they’ve tackled infertility as a topic.  Not that HuffPo is unique — my personal favourite for vitriol is the New York Times.  Those commenters usually make me want to face-punch them.

Which is to say that I could be missing out on some amazing discussion happening in that comment section, but I’m going to hazard a guess that I’m not.

So, just to be clear, I think we should be talking about infertility, and I am extremely open in talking about our situation with anyone and everyone — from the grandma buying produce in the food store who didn’t ask me about my uterus at all (but I volunteered its defectiveness anyway because I just like to shaaaaaaaaaare) to everyone who begins their thoughts with the words, “are they twins?”

BUT

The onus was on infertile men and women in this article.  We heard all about how WE need to talk about this.  But what about the listener?  Why isn’t there an accompanying article for all the douchebags who live in the comment section about how they have to listen?  And listen better?  We can talk all we want, but that comment section tells the real story (fine, I did click over for a moment, saw the words “these comments are really disheartening” and clicked away after seeing that once again, the comments were a divide between those who have experienced infertility and those who say douchebaggy things like this).

I talk about infertility daily.  I volunteer the news that my body is defective with the same ease in which I comment on the traffic on the Beltway.  I talk about it openly and calmly.  I’m certainly not making people uncomfortable with my tone because two seconds before I mention my uterus of doom, we are having a perfectly harmonious conversation.  They are asking questions, I am asking questions, we are getting to know each other, we are laughing gaily, we are skipping through figurative fields while the wind dishevels our hair, they ask if twins run in my family, I mention that infertility does.

And the conversation screeches to a halt.

They are uncomfortable.  They apologize, they try to change the topic.  I smile and say that it’s totally fine, and I try to keep us on topic by explaining just how one goes about creating twins in a fertility clinic.  They get more and more uncomfortable.  And then I let the conversation change back to more agreeable topics.  Such as the traffic on the Beltway.

And is it diseases?  Well, no, it isn’t all diseases because the very same conversation I’m describing also had a long interlude about cancer.  About death.  That we skated over with empathy.  The topic of infertility made me feel as if I had just shat in his corn flakes.

So while I agree with the author of the post and Resolve and everyone else quoted in the article that we need to talk about it, I also want equal pressure put on people to hear it.  You see — it’s not just what we do.  The article insinuates that we are the reason we have little insurance coverage, little support, little understanding.  Our lack of talking has brought this upon ourselves.

But that’s a little too simplistic for me.  Because this article was talking about it, and you can see from the comment section what happens when people talk about infertility.

I could be wrong, but I have to hazard a guess that those who experienced breast cancer thirty years ago weren’t hearing that they were selfish, whiny, and should just adopt when they finally started talking about their disease.  Since, as Port says,

Thirty years ago, breast cancer was where infertility is today — women just didn’t talk about it … There weren’t countless support groups, fundraising walks, and an entire month enveloped in pink. Women battling breast cancer did so in silence and, in turn, many felt isolated and ignored. However, now because there is such an international dialogue about the disease, breast cancer receives multi-million-dollar grants each year in research funding and patients are inundated with an outpouring of support and understanding.

It is very easy for people to understand and get behind diseases such as cancer and AIDS because it is quite clear that these diseases kill, and that has an urgency that infertility lacks.  Infertility is hard sell because I don’t think — until you have lived it — that you can fathom what it feels like to not be able to build your family.  It doesn’t directly kill you.  There are plenty of people out there who think infertility actually sounds like a positive (don’t have to worry about birth control?).

And yet, it hurts so badly that sometimes, you wish for your own death.

It certainly has urgency to me.  The problem is conveying that urgency to THEM (that faceless them that we apparently need to discuss our infertility with).  Mental illness also hasn’t succeeded in getting that disease’s much needed insurance coverage and support.  I think we can learn more from watching that fight than we can from comparing ourselves to cancer.

I think we should fight for that support.  I think we should fight for that insurance coverage.  But I don’t think we should pretend that it’s as simple as talking about it.  Because we still need the other side to listen to it.  And let’s hold them as accountable as infertile men and women are held in this HuffPo article.  Because, yes, in thirty years, I’d like to see illnesses such as depression or infertility given support and coverage.  And hopefully, the comment section change dramatically along with that support and coverage.

A few days ago, I wanted to talk to Josh and I wanted the kids out of the room.  First, I asked the ChickieNob politely.  Then I told the ChickieNob to get out of the room.  Finally, I told the ChickieNob that I had to tell her father something terrifying and if she overheard it, she would have nightmares for months so could she please, for the love, get out of the room so I could tell her father this without damaging her delicate psyche?

Absolute wrong tactic: she perked up and moved closer saying, “you’re going to talk about something terrifying?  I’d love to hear!”

There are things the ChickieNob doesn’t like, but few things that scare her.  We were hiking in the woods and we came across this snake, and the natural instinct would be to jump backwards, but she moves closer.  She loves haunted houses, vampires, werewolves, and monsters.  She always picks the roller coaster, the steepest part of the hill for sledding, and marches straight into the ocean.

At 6-years-old, she is absolutely positive that she is going to be a bass player in an all-girl band (this all-girl band includes her brother because — as she rolls her eyes — he’s her twin and she guesses that he should be included).  At the music school, she announced to the cashier working in the store where I bought some guitar picks that she needed a 3/4 electric bass — a silver one — and an amp.  She needed the amp to go extra loud because she was going to “rock out.”  She told the boy that she was going to form the band with some other kindergarteners, and casually dropped that they were going to be bigger than Green Day.  And I believe her.  She has me convinced.  She has this swagger when she walks and she is fearless.

I once asked her how she was so brave.  She thought about it and said, “I try to be the scarier thing.  When I’m scared, I either scream to scare the other thing, or I try to freak the other thing out so that it isn’t the scariest thing in the room.  I am.”

Let’s juxtapose my timidity with the ChickieNob.  Before the first lesson, I sat on a piano bench outside the music room with my stomach in knots.  She danced around and I silently stressed out about how bad I was going to be.  I kept reminding myself that there was nothing at stake.  If I sucked, I sucked, but it wasn’t like high school where I’d be getting a grade and it would direct my future.  This was supposed to be fun, but it was making me a stress case.

My teacher came to fetch me and the twins, and I walked back to the practice room.  We talked about form and posture.  I was deeply aware that my enormous boobs were resting over the top of the guitar due to the way I was sitting hunched over.  We talked about what I hoped to accomplish with these guitar lessons (you mean, beyond the ability to ROCK OUT?  Oh, then I guess I’m looking to play some stadium shows.  You know, that sort of thing).  And what sort of music I like to listen to and hope to play.

I have a bunch of old papers and sheet music books in my guitar case, and I took one out to show him that I had taken guitar lessons from this school when I was a child.  Underneath it was the book I had been working on when I quit and he picked it up.  “Did you know that this is the book that they use for first years at Peabody?  You were playing from this when you quit?”  We flipped through my old teacher’s notes on songs and I felt so enormously sad.

I felt like I really wasted something by being so damn scared of everything.  When I quit, I chalked it up to wanting long nails (and to be able to wear polish) and not spend time practicing.  But I also know that a lot of it had to do with the anxiety I felt playing for anyone.  I’m not talking about performances — I mean, just playing for my old piano or guitar teachers.  I was so worried that I’d mess up and spent those lessons as a kid with my stomach in knots.

Josh and I joked before my current lessons began that I’d have to ask the new teacher to face the wall while I played so he wasn’t looking at me, and I would have if (1) I wasn’t concerned with also appearing sane and (2) the Blair Witch Project sort of ruined the whole face-the-wall thing for me.  I can count the number of times I have ever played piano for Josh, and in all of those cases, I was drunk and inhibition-free.

In quitting, I stopped feeling that anxiety.  But when I look at those old books, I also look at what I missed out on due to the fact that I made myself feel so terrified over something that was — again — low stakes.  So what if I messed up, especially when it was just me and my teacher?  What if it took longer than expected to master a song?  I was really really good — I have the notes from my teacher to prove it — and I had literally no self-confidence.  And I’m not even talking about having the self-confidence of the ChickieNob who, at age six, would literally be able to command the stage in a stadium and get people to rock out for two hours.  I didn’t even have the self-confidence to play in my own living room.

I walked out of my first class elated simply because I had gotten through it.  I had picked up my guitar and played a few chords in front of another human being.  I have had three classes now, and while I can’t say that I have picked up much of the ChickieNob’s swagger, I am now able to play for Josh every night.  I am playing for my teacher and when I mess up, I just laugh and say, “start over.”  It’s not that I’ve gotten rid of that internal voice that keeps telling me that I could suck.  But I am working on being the scarier thing in the room.

What fear would you like to get past?  What fear has limited you?

We belong to a children’s film club.  It’s $5 per kid for the month, and they show two films every Saturday in this old theater.  They clear the area in front of the screen and toss down some bean bag chairs.  No one cares if the kids talk through the film and the M&Ms are free-flowing.  It’s just about 3000 kinds of perfect.

Every Thursday, they send out an email with the two films, and we decide whether or not we feel like going (since, did I mention that it’s only $5 for the whole month?).  This weekend, one of the choices was E.T., and once I saw that, I had to go.

Before we went, we ran through the major plot points with the kids because we were a bit worried that the scenes at the end would be scary or that they would simply not understand 90% of what was happening on the screen.  They both wanted to sit in our laps for the film, which made it easy to whisper the Cliff Notes version of each scene in their ear as the action unfolded.  All was well in the world.

Until the end.  I thought the ending would be scary, and I actually predicted that we’d leave the theater before NASA stormed the house.  But that wasn’t the problem.  As the boys rode through the development, trying to get E.T. to his spaceship, I started bawling with happiness as the bikes lifted into the air.  It’s that quintessential E.T. moment — the image of the bicycles passing in front of the setting sun — and it was sort of mind-blowing to be in a theater holding my child and remember how I felt sitting in the theater as a kid watching E.T. for the first time (the theater I saw it in has been turned into a DSW shoes…)

So all the adults are internally (or, in my case, externally) cheering, and the Wolvog begins to cry this animalistic, gasping cry because he is so sad that E.T. is going home and Elliott won’t be able to see him anymore.  His crying sets off the ChickieNob, which sets off a chain reaction through the kids.  So the entire theater is filled with sniffling children, wailing about how they don’t want E.T. to go home.

And I was struck with this thought: this theater of children all have this intense empathy for Elliott, mourning the loss of this being known pretty much only to Elliott and his siblings for the majority of his duration on earth.  So where did adults lose that empathy?  The kids in the theater couldn’t imagine saying to Elliott that this was life’s plan or that he should be happy that E.T. is in a better place or that he can always be on the lookout again for another alien.  And yet… some adults think this is a way to speak about pregnancy loss or stillbirth or neonatal death.  At what point do people step over the line from being these amazingly empathetic kids to being the assholes who comment on infertility-related articles in the New York Times?

Whoa… where did that come from?

As we left the theater, we asked if they already knew what would be showing next weekend, and the woman said that they didn’t know yet, but they were open to ideas.  What did we want to show our kids on the big screen — something from our childhood that we wanted to experience again.

In the moment, I couldn’t think of anything.  At home, I came up with Freaky Friday and the original Parent Trap.  I would love to see the original Tron again and see Pete’s Dragon on the big screen.

What movie would you love to see from childhood playing on the big screen of a theater?  With really good popcorn and $2 beer and M&Ms.

It must be near Valentine’s Day because everyone and their mother (by which I mean every infertility organization and clinic … since it would be odd if everyone’s mother started writing me emails) are sending me tips on how to not allow infertility to decimate my sex life.

But I’m not really sure how you don’t have infertility decimate your sex life — at least for a short time.  I mean, it’s sort of like an anorexic’s relationship to food — you need food to live, but your relationship with food is killing you.  And you need intimacy in a relationship, but, come on, the sex-not-equaling-baby thing is soul killing.

It is really hard to want to have sex for fun after you’ve been having sex for days in a timed-manner or want to have sex when you’re bloated to hell from drugs.  Or when your heart hurts.  It is really hard to have sex when your heart feels like a shriveled raisin-of-a-thing barely beating under your ribs.  How are you supposed to become stimulated when you are just so fucking sad?

So if you are having mind-blowing sex this weekend, rock on.  But if you are not; if your body is so traumatized from transvaginal ultrasounds or you feel like sex is just a reminder of what is not working in your body or you are so sad that you can’t get intimate, then stop beating yourself up and stop reading those articles and stop putting MORE pressure on yourself.

You will get back to a happy sex life if you two are both going to work to get back to that place of intimacy.  But all problems don’t have to be solved at the same time.  Sometimes, solving one solves some of the other ones too.  So if not-letting-infertility-destroy-your-sex-life feels like too big a task right now, take the night to eat through a box of chocolates in bed.  And cuddle.  And tell each other what you love about each other.  And promise each other that this is a moment in time and the future won’t look like now.

I feel like instead of “Spice Up Your Sex Life During Infertility!” articles, there should be a simple Michael Pollan-like mantra:

Have sex. If you can. And if not, don’t stress and have it later.

14 words.  That’s the advice I wish I had read back then rather than the articles I did read that just made me feel guilty.  And I was reminded of that this week when I read my 3000th email on sex and infertility.

*******

Instead of the Weekly What If: taking sex out of the equation, would you rather get a really good box of chocolates to eat without any impact to your body (they would magically be without calories or fat) or get an hour-long massage?

*******

And now, the blogs…

Okay, this post is from last week, but I read it in my Reader on Friday, which means that I have two options — say “oh well” and move onto the next post, or break the rules and bring it to you this week.  I’m breaking the rules…  I am Vulnerable has a post about soup and vulnerability.  First of all, it starts out with a gorgeous story about finding a recipe she loves from a woman who has already died.  It then goes into the way she wants to live: “But I have to say that your comments and then the discovery of Leila’s blog have only reinforced for me the desire and intention to live with an open heart. Because everything is impermanent, but everything ripples out in ways that we cannot even begin to imagine. And I want my ripples to be reflections of who I am and what I believe most strongly.”  Like many of her posts, I felt myself nodding and it gave me food for thought.

The Eternal Guest Room has a post about the jumbled thoughts in her head when she can’t sleep.  Oh, this thought rang so true for me: “I feel like people must be tired of listening to me by now. I’m even kind of tired of listening to me at this point. I feel like I talk about it less and less, because I’ve already said it all, again and again, and it’s so old and tiresome.”  Didn’t she capture that amazingly well?  I just thought this was an aching, raw, dark, silent-scream-of-a-post.

And lastly, Two’s Company. Three’s a Family has a post about time spent with pregnant family.  It was a good night, but it had those moments.  You sort of felt as you read the post that you were the author, sitting in the room, silently processing the situation, knowing a very different reality than the one the family suspects.

The roundup to the Roundup: Have Sex. If you can. And if not, don’t stress and have it later. Chocolate or massage?  And lots of great posts to read.

A really interesting comment was raised with the Exclusion Project which was that the person felt that the ALI blogosphere itself broke down into separate cliques.  She questioned whether we’re really a cohesive community or whether we divide ourselves into small groups usually based on experience (those parenting after adoption stick with those parenting after adoption, or those with PCOS hanging out online with those with PCOS).

I see it from where I stand as sort of both truths at the exact same time — we’re a cohesive group (especially in comparison to other online communities) yet we’re also very much divided into small cliques.

Back when I first started blogging, I had about 100 blogs on the original blogroll.  There were 10 categories.  Now, there are 52 categories and over 2700 blogs.  And I add about 20 more each week.  Back when there were 100 blogs on the blogroll, I didn’t read all 100 regularly, but I knew all of them and I checked in weekly or monthly.  Even if I didn’t read the blogger personally, when someone posted about someone else on their blog, I always knew exactly who they were talking about.  When the LFCA started, there were already many more than 100 blogs on the blogroll, but people still could look down the LFCA and know at least 90% of the people who had news listed.  Now there are times when I’m uploading a blurb for the LFCA and I don’t even know the blogger, and I read a wide-swathe of blogs and have a fairly good memory of blogs I’ve even only seen once.

By virtue of size, we have had to become fragmented.  No one can keep 2700+ blogs in their mind when blogging is a hobby; not a job.  It’s supposed to be enjoyable.  It’s supposed to be a place to draw support.  It is not supposed to be a huge guilt trip of what you’re not doing or not getting or not achieving — at least, that is how I see it.  I feel your online life should add to your overall emotional health, not suck it dry.  People break down into cliques not with the desire to exclude, but instead, with the desire to have an enjoyable online experience that brings something missing to their world.

I also don’t think these cliques are impossible to break into though people tend to enter a state once they’ve been online for a while where they travel with the people they originally found.  They add fewer and fewer new bloggers to their Readers.  It’s not that they wouldn’t welcome a new person into the conversation or go and read a blog post or two on a new blog, but they’re less likely to start up that two-way relationship with someone new when their Reader already feels full.  That said, there are always new people entering, so there are always new people to connect with.  And those connections certainly happen.  A big portion of my Reader are blogs I’ve been reading for 4+ years.  But there are also people in there who haven’t yet celebrated their first blogoversary.  Mostly because whatever they said or conversations we’ve had off-blog have resonated with me.

It is hard to be a new blogger.  It feels like it’s harder to be a new blogger now than it was to be a new blogger years ago.  It was still hard to find your niche and build a readership.  There are tools now that didn’t exist back then — such as other social networking sites — that can jump start a readership.  But it was also a smaller group and once you had stood around in the blogosphere for a while and participated in reading and commenting, people welcomed you in to the community simply by virtue of the fact that there were so few bloggers around at all.  Now, there are so many people entering the blogosphere that it can feel a bit like overload and new people aren’t necessarily going to be dragged into the center of things simply by standing around.  You need to shout to be heard.  You need to nudge a bit.

I think there are things we do exceptionally well as a community.  We cross out of our cliques to give comfort (which does not mean that there aren’t people who slip through the cracks).  We bond together for big projects.  We add our voices so we can shout extra loud to the outside world.  There are also things that have waned in our community — I believe due to size more than due to maliciousness or uppitiness — the LFCA, the support, the welcoming in of new people.

The President gives a State of the Union every year.  Perhaps we also need to revisit yearly the State of Our Blogosphere (SOOB!) to look at ways we can improve and places where we’re kicking ass.  Do you agree or disagree with how I see our corner of the blogosphere?  I’d love to hear from older bloggers and newer bloggers from what they’ve observed.