Show and Tell is wasted on elementary schoolers. Join several dozen bloggers weekly to show off an item, tell a story, and get the attention of the class. In other words, this is Show and Tell 2.0.

Everyone is welcome to join, even if you have never posted before and just found out about Show and Tell for the first time today. So yank out a photo of the worst bridesmaid’s dress you ever wore and tell us the story; show off the homemade soup you cooked last night; or tell us all about the scarf you made for your first knitting project. Details on how to participate are located at the bottom of this post.

Let’s begin.

Dreaming of Quiet Places posted the start of her hamsa collection last week which reminded me to take a picture of the one that hangs over our bed (which actually hangs over our ketubah, which hangs over our bed).

I’m probably going to fail miserably at the retelling of this because it was told to me on a car ride from Tel Aviv to Isfiya where I had to pee very badly.  But the Druze place an eye in the center of the hamsa to not only ward off evil (get it?  The eye sees it before it can harm you and zap!), and the hamsa is blue because blue in the Druze religion is the colour that symbolizes potential.  Hamsas have special meaning in the Druze religion because there are five colours important to their beliefs and they correspond to the fingers of the hand.

I think.

Don’t quote me on any of this.  All I know is that we have superstitiously sewn blue Druze glass eyes into the hems of clothing to protect the wearer (I pinned it in my bridal gown) and hung one over our bed.  And I love sleeping under it every night.

What are you showing today?

Click here or scroll down to the bottom of this post if this is your first time joining along (Important: link to the permalink for the post, not the main url for your blog and use your blog’s name, not your name. Links not going to a Show and Tell post will be deleted). The list is open from now until late Friday night and a new one is posted every week.

Fluish

Bluish

Cleaning up spewish.

All four Fords down.

Three things I want to clear up from the last post:

Actually–I think I need to state this point again in case it was missed: I want awareness, I want remembrance, but I don’t want to stop there.  I want action too.

I used October 15th as an example of an awareness/remembrance day in the same way I used breast cancer awareness month–simply as another example of a place where the lack of clear purpose means that the full impact of the day/month/event isn’t realized.  October 15th has the potential to be a great rallying cry of a day for the loss community, but it hasn’t found that voice yet collectively even though some individuals use that day to educate though the formal event for that day is the candle lighting.

It doesn’t really work as an awareness day–a candle lit in a house in the evening doesn’t invite others to learn more about loss.  It does work well as a remembrance day, and I think advocates would do well to reinforce the idea of remembrance instead of mixing it up with awareness.  It is a great, community building, comforting project.

I wouldn’t want to expand the meaning of October 15th to include infertility and honestly, I wouldn’t want to establish an awareness day for infertility at all.  We sort of have one that moved from the fall to the spring last year.  I think awareness days are great if they’re a first step to something else.  Even Resolve has recognized that it’s better to use that energy to establish action (such as Advocacy Day) rather than use that energy to establish awareness.  Resolve has sort of held off on huge events during awareness week and instead uses Advocacy Day as its big rallying point.

So just to reiterate–October 15th is a loss remembrance/awareness day.  And loss is tied to infertility in some cases because pregnancy loss is part of the textbook definition of infertility (three losses or trying for one year without a pregnancy).  Some people come to their diagnosis of infertility via loss.  Some infertile men and women also experience loss.  And some men and women experience loss, but not infertility.

Which brings us to the second thing: people mentioned the good points about breast cancer awareness month and while no one can say that remembering to do a self-breast exam or being more aware of risks is a bad thing, neither of these things directly benefit those experiencing breast cancer.

Do you see what I mean about the problem inherent in this awareness month?  It becomes all about me rather than about them.  I learn something that helps myself.  But how do people with breast cancer benefit from that?  I would rather have a day where I receive a message of not how I can protect myself with early detection, but how I can be a good friend to someone experiencing breast cancer.  I obviously know people who have the disease–help me know what to do.  What are good questions to ask?  What aren’t?  What are good tasks to do that could potentially help?  What are good intentioned tasks that might actually hurt?  Are there foods that are better or worse to eat?  Are there times when visitors would be more of a hindrance than a help?  And tell me why so I understand and can make other choices from that information.

It’s not a one-size-fits-all sort of thing so each person will have their own answers, but it can help get a conversation started between those who are uncomfortably clinging to the sidelines because there is just so much we don’t know and awareness months aren’t helping us learn.

Which brings us to the last part: When I stated that I hope there’s more action by next October, I didn’t mean specifically on October 15th.  I meant that I hope we’re not this stagnant a year from now.  Less talking and more doing.  My ideal would be “doing” moving in three directions: making family building possible, educating others, and making life better for those experiencing infertility.

And I’m firmly against starting new things when there are so many balls already rolling that could use energy behind them to make them successful.  So for the first, get behind Resolve and go to their take action page.  And then…er…take action.  They’ve already done the hard work of helping keep efforts focused on the important areas.  Don’t just talk about how you wish you had mandated coverage–be part of the movement that is working to get and maintain mandated coverage.

If H.R. 213 doesn’t pass, the adoption tax credit will drop on December 31, 2010.  Get involved in ensuring that adoption remains a financial feasible option.  People who are involved in adoption activism, what are other things people can do to put ideas into action?

Write letters, ask your local Resolve chapter how you can help with an organized effort aimed at your local congressperson, make phone calls.  Wait, wait, you got that part about not starting new things and splintering our efforts?  Get behind established organizations that have been doing work to ensure that your voice is heard.  And also, you have a blog–use it to spread awareness.

Those are all things specific to infertility (and in the case of H.R. 213, adoption).  In speaking specifically to the loss community, there is action to take too: support organizations that do active work to help individuals such as Now I Lay Me Down to Sleep.  There have been ongoing efforts in states to create what are called “stillbirth bills” which are establishing certificates of birth resulting in a stillbirth.  You are better equipped to speak to what must be done; this is just a starting point from what I’ve learned from you about late term loss, stillbirth, and neonatal death.

In terms of the second part–education–get good writing out there to counterbalance the media coverage of infertility.  Get stories in local newspapers, send letters to the editor, pitch articles to magazines.  This is about establishing facts concerning the emotional, physical, and financial realities of infertility.  If people learn something that helps them too, all the better.

Lastly, in making life better for those experiencing infertility–well, I wish more people would work to understand infertility and gracefully allow those experiencing infertility to help themselves without guilt.  Especially as the holiday season approaches, which brings up so many emotional responses to external stimuli.

But I don’t expect a lot in this area, even though I want this very badly.  If we haven’t taken breast cancer awareness further than raising money for research or learning about early detection, I can’t expect infertility awareness to extend to people asking if they can bring over a meal during a transfer day or extend permission to skip a difficult baby shower.  And this is a reminder that I need to do better myself in asking friends with other health concerns how I can best support them.

I still wear my pomegranate string, but for me, this symbol has always been internal to our community.  A nod to others who recognize the symbol to open a conversation, exchange information, and provide support.  The symbol was chosen because it was inexpensive and readily available.  It could be mailed cheaply to others who don’t have access to craft supplies.  It was discreet and didn’t invite a lot of conversation.  I’ve worn mine for over three years–I have only had one person approach me about it.  Which is fine–it has done its job.

Do I wish we could take it to something less discreet–sure, but I also know that most people do not want to talk incessantly about infertility because it is a disease that not only affects themselves, but it affects their future child.  And while some people are comfortable putting information out there about themselves (I’m infertile), they’re not comfortable putting information about their child (he’s adopted or she’s a DI-child).  I am, and maybe you are, but not everyone is.  And beyond that, some people plain don’t want to talk about their reproductive organs.

Oh–wait–last thing.  I do have a fourth thing.  I am inclusive.  Not all organizations or people are.  Some people choose to only focus on biological infertility instead of also including situational infertility.  Some word things so you know they’re only talking about straight, married couples.  Some keep a very narrow definition of infertility.  I don’t.  I don’t think it’s healthy to exclude people (I think both people get hurt with exclusion) nor do I see the point when more can be gained by strength in numbers and strength via understanding.  I will support the hell out of those who have a different journey from my own in the hopes that they will also support me.

This was a hard post to write, and I walk a fine line of trying not to offend while needing perhaps to offend in order to make my point. Hopefully you will understand that my point is not to forgo what is already being done, but instead to add. To not be satisfied on this plateau, but to step up to the next one.

While at coffee this weekend with a group of highly intelligent, kick-ass women* including the author, M, I brought up the topic she raised in a post called “On Awareness,” relating the idea to Pregnancy and Infant Loss Remembrance Day which takes place each year on October 15th.

In 1988, Ronald Reagan declared October “Pregnancy and Infant Loss Awareness Month” and through the work of multiple individuals and organizations, October 15th has been set as a day of remembrance, with each person lighting a candle at 7 p.m. to burn for an hour, creating a wave of light that crosses the globe in memory of children who have died in utero or shortly after birth.

And I think the convergence of this day of remembrance occurring in this month of awareness has led to all sorts of problems. Namely, no one knows whether the day is there to raise awareness or if it is a community building event meant for group support, and while these two things are not mutually exclusive, without a concrete idea behind the act, I think those who have not made the day their own find themselves foundering a bit in the face of numerous posts that pop up in the blogosphere each October 15th.

I saw some gorgeous posts on the topic. The one that stands out in my mind was by Bagmomma, who points out the fact that “I’ve blogged on this day over the years, and each time I do… I feel emptiness reflecting back on such sorrow.” Like others, I lit a candle as I do every year, and spoke to the twins about infertility and loss. It is simply part of our family, a ritual and knowledge as established as eating matzah on Pesach or putting your shoes away when you walk in the house.

In some of the posts, people referred to it as a remembrance day and in others, people referred to it as an awareness day. Again, it goes back to the fact that the meaning behind the day isn’t exactly clear. Is it to let others know about our losses? To light the candle in secret? If we post about it on a blog, are we possibly educating another person? Or do we not want outsiders to read about it and ask about it?

Is it remembrance or awareness?

Which brings us to M’s post about awareness. M, a cancer survivor and infertile woman, starts out her post with a valid question about breast cancer awareness month: “is there anyone out there un-aware of the dangers?” And she ends with a frank question: “where is the line between “awareness” and simply “being an asshole?” Because how we talk about infertility and pregnancy loss does matter.

You will need to click over to read M’s article to understand her point about taking awareness in negative directions, but I wanted to examine an idea she broaches within her post. She links to an old Barbara Ehrenreich article (the author of Nickel and Dimed and more recently, Bright-Sided) called “Welcome to Cancerland” that dissects the help and harm provided by the breast cancer awareness movement.

M quotes one of Ehrenreich’s most jarring statements which is that the pink ribbons, three-day walks and collective breast cancer awareness activities makes “it, perversely, as a positive and enviable experience.”

I didn’t take this statement to mean that breast cancer in and of itself is enviable, but that the support is enviable.

It is enviable when you consider how much the general public is in the dark when it comes to infertility and pregnancy loss. Wouldn’t many more of us gladly and openly wear pomegranate strings if it would make other people approach discussions with empathy? If we could be open with employers about fertility treatments or adoption and be given time off to pursue them? If having the visual reminder worn on our wrist would help human resource teams choose insurance plans with infertility benefits or provide adoption benefits as a company? Wouldn’t you wear a visual reminder about your disease openly and frankly in exchange for accurate language and ideas conveyed in New York Times articles?

(The best quote of the coffee date came from Two Hot Mamas when I mentioned that the average person can comprehend the term transfer because we’re familiar with it via banking, whereas N quipped something along the lines of “you get breast implants and boom, boobies!” Because what does the general public know about the term implant beyond new breasts? They think just as people get new ta-tas once they slip in their implants, they get a baby once they throw back in that embryo with IVF. And it just doesn’t work that way.)

Pink made it okay to talk about breast cancer. Which is a good thing. It removes isolation and promotes understanding. Hopefully, awareness makes people think before they say hurtful things, makes employers more flexible, family and friends more supportive. At least, that’s what I hope because if that’s not the case, then there isn’t really a lot of point to awareness. Knowing the underlying causes to breast cancer and doing self-breast exams? I think the general public has that under their belts by now (and frankly, with too many people diagnosed yearly who are not engaging in high-risk behaviour and–beyond self-breast exams–tumours misdiagnosed by doctors, I don’t know if that sort of awareness is the best place to devote time and energy anymore).

M and Ehrenreich point out an uncomfortable fact: when pink is slapped on everything in the name of cancer awareness, it smells a bit of businesses using a disease in order to gain brand loyalty (believe me, once I learned about Barilla’s adoption benefits that not only provide financial coverage but also time off from work for family building, I have never bought another pasta. They grabbed my loyalty by having a company policy that speaks to what is important to me. And while there was nothing nefarious about this and only good, if Barilla started making a pomegranate pasta, promising to send part of the money to Resolve, well, it would make me feel a little bit yucky even though I like the idea of Resolve receiving the support). We feel good when we see that a make-up company has come out with a pink case. We pick the bag of pink M&Ms over the plain ones. We try to win a pink Dyson.

All of that feels a bit like awareness for awareness sake. Yes, money is usually given towards research and that is a good thing, but really, those companies could make the donation without involving us. In making things pink, they’re including us in the awareness side of it and taking credit for their good work.

But really, what is the point of that awareness if it doesn’t jog your memory about actual people in your life or your community? I mean, how many times have you seen a pink ribbon and thought of a useful call to action; as in, hey, right now, I could go bring dinner for my friend who has breast cancer? See, a small useful thing you could do tonight that would actively make a difference in another person’s life. That pink ribbon should be a reminder–that very real people have this disease and could use your time and capable hands.

It’s great to donate to large organizations that are helping fund cancer research, but what about reaching out to people in your community who are experiencing the disease? How many times have you reached out with help, sat down and lent a willing ear to hear a vent, run errands for them, asked how they are and wanted to hear the long answer, kept them company in chemotherapy? Giving money feels like we’ve done something. It makes us feel good, as if we’re fighting back against an entity–breast cancer. But figuratively sticking our hands into the mess by getting involved, looking cancer right in the face in someone we love? That is hard. That is really really damn hard.

Perhaps it comes down to the fact that infertility advocates shouldn’t repeat what breast cancer advocates have done in presenting the image of the shining, happy faces doing the Avon walk or the cuddly pink teddy bears. That we should eschew the cheering sisterhood for more of a tone of a friend sitting down next to you on the sofa, holding your hand and saying, “I have something really important I need to tell you.”

Because that image of women triumphantly crossing the finish line at the end of the Avon Walk for Breast Cancer doesn’t convey what breast cancer is actually like–that the majority of the time isn’t the glow of victory, but instead the cold fear of mortality. But would that grab the public’s attention, make them want to become aware? We are all suckers for the happy ending. We like to see the sick character become well by the end of the film and if they die, we want redemption to come for those still living.

When I complain about the media coverage out there, I often ask why they don’t do newspaper stories about the vast majority of us who experience infertility, go through a lot of shit, and build our family, without anything extraordinary happening? We devote pages and pages of newsprint to Nadya Suleman and the Savage’s botched embryo transfer and Kate Gosselin’s sextuplets. Where are the stories of the average family? The one who cried their way through treatments and exited out the other side with a singleton?

But when considering it through this lens, is that the awareness I really want put out there? The victory at the end of the finish line? Because that wasn’t really my infertility experience. It was only a small part. I want people to understand why I came to work looking like I had spent hours the night before lying on my bathroom floor crying. Well, it was because I had spent hours the night before lying on my bathroom floor crying (or, more accurately, I usually curled up in the dry bathtub). I want people to know that I became depressed. That I couldn’t escape it even for a few hours because cycles were happening in my body, that babies were everywhere outside my body. That infertility was humiliating and scary and painful and expensive and made me lose myself sometimes. And then there were the good sides too–the friendships and education and empowerment I felt the first time I gave myself an injection.

Awareness is not action. I can be aware that a car accident has just occurred without pulling over my own car to help the injured. Awareness is, for the most part, a very passive position of being educated with the focus being on the intake of ideas, not the output of action.

Therefore, I don’t want Infertility Awareness. I want some fucking Infertility Action. I want take-your-insensitive-coworker-to-the-clinic day. I want every American to receive the bills we received to build our family.

I don’t want more people to experience infertility or loss because frankly, 7.3 million Americans is an impossibly large number. That’s 1 in 8 people of child-bearing age. 12.5 % of the child-bearing age population. I don’t want people to experience what I experienced.

I just want them to have the same empathy towards my disease as they bring to other diseases out there. If they value their family, I want them to emotionally support me as I work to build mine. And just as they don’t pass judgment on one person’s usage of chemotherapy over another person’s usage of surgery to treat the same illness, I don’t want judgment passed over my decision to use one treatment over another nor do I want the input of outsiders such as “why don’t you just adopt” hurled my way. Because just as cancer treatment should be a decision made between a doctor and patient, infertility treatment should be a decision made between a doctor and patient and family building decisions should be made solely by the person or couple.

Unless, of course, we’d all love a little input from others as to how we should build our families?

I’m sure that next October 15th, I will light a candle again. It feels right to remember those who aren’t here right now. But I also hope there will be a little more Infertility Action next October. Still looking inward with remembrance. Still passive knowledge with awareness. But also more kicking infertility’s ass while bringing more empathy into this world with action.

The revolution may not be televised, but it hopefully will be blogged.  Go out there and use your words for change.

Cross-posted with BlogHer.

*I went to coffee with Two Hot Mamas, A Little Sweetness, The Maybe Babies, Body Diaries by Lucy, and Currently-blogless-Audrey-who-will-hopefully-have-a-blog-soon.  See, I told you, brilliant, kick-ass women.

Getting beyond the fact that I usually start twitching when someone sends me something from the New York Times, all the more violently when the byline comes from Stephanie Saul who insists that it’s a good idea to use the wrong terminology when discussing fertility treatments, I couldn’t help but read the series of articles about multiple births and fertility treatments. Unlike others, I did not bother to click on the accompanying comments because I am familiar enough with the New York Times to know that nothing good can come of reading the opinions of people who see nothing wrong with the fact that their newspaper is wrongly using the term implant in regards to embryos.

You can’t argue with the meat of the articles, the first of which can be boiled down to the thesis that multiples increase the risk of prematurity, and therefore, protocols should be in place to discourage practices that would lead to a higher chance of multiples. A pretty sound idea. The second article covers the topic of selective reduction and how IUIs lead to higher order multiples because there is less control than IVF. Again, no one can dispute that fact. A third roundtable discussion covers again the problem with multiple births.

Of course these articles were of interest to me as a mother of twins who were conceived with the help of fertility treatments. They were delivered seven weeks prematurely when they stopped growing in-utero and there was deeply discordant growth. They spent three weeks in the NICU and have been generally healthy with some lingering problems of prematurity. Obviously, I’m one of the target audiences for these articles and you would think that I would have nodded my head a bit more since they do bring up tangentially ideas that I firmly believe.

But the problem begins with the fact that Saul never convinces me that she wants to hold a frank discussion, working together via journalism to solve the problem of multiple births and prematurity in regards to fertility treatments. Instead, the language used, the stories told, and the facts addressed all point to the fact that Saul never closely examines the solutions, instead choosing to only address the problems–and missing the point entirely in the process.

Instead of focusing on reasons why people would risk the transfer of multiple embryos, practicing sound journalism where she would interview numerous subjects and utilize their words to present the story, Saul jumps to conclusions: “patients are eager for children” and they want “to be successful on the first try.” But rather than state the real reason why women wouldn’t want to undergo more fertility treatments than necessary–money and physical pain–time is given as a factor.

Anyone who has paid out of pocket for a chance to conceive knows that there are two main reasons why people take risks with treatments and they are very closely aligned to the reason why people take risks with any medical treatment–especially one that is tied to quality of life. First and foremost, the exorbitant cost of treatments–mostly uncovered by insurance–goes towards a chance rather than a child. Few have the ability to do treatments until they work. Most need to take risks in order to feasibly pay the high price of family building (and for the love, before you suggest adoption, please first understand the cost of adoption and why it isn’t a solution to infertility but instead a wonderful, separate family building option).

Secondly, anyone who has been on the receiving end of a needle knows that you try to complete as few cycles as possible to conceive both due to the physical discomfort associated with treatments as well as the overall health risks that can come from doing treatments. There are times when the risks of prematurity and multiples balances out the risks of doing multiple treatments for both the woman’s mental and physical health.

Saul reveals her bias early on (as if she hasn’t already done so in the past with her other articles concerning infertility), calling it the “fertility industry,” a term used by others to greater impact because it is backed by ideas rather than used unsupported as a slur. We don’t call it the cancer industry, implying that people are being churned through like cans of creamed corn or automobile parts. We don’t imply that people are being moved through the medical factories mindlessly like just another object if they treat a health issue such as breast cancer. We don’t call it the obstetric industry even though we all know the statistics on unnecessary c-sections. The term is as paternalistic as the practices the terms evokes, as if women and men do not have the mental capacity to think for themselves and be careful health consumers.

One of the real financial problems of infertility and prematurity was barely addressed at all in the articles and it serves as the white elephant in the room: if insurance companies covered the cost of treatments, they would save on the back-end in the cost of NICU stays. You would get more people to accept eSET (elective single embryo transfer) or to cancel IUI cycles when too many follicles are made if they knew that they had another chance financial-wise to cycle again.

This has long been the point made by Resolve, the national infertility organization aimed at providing infertility education, lobbying lawmakers, and extending support to those experiencing infertility. It’s an organization that has been working hard for actual change as America reexamines health care, lobbying lawmakers for support of two bills that would require insurance companies to cover fertility treatments. In other words, it is asking America to put their money where their mouth is–either we value the health of women and children and want them to make sound decisions about family building or we don’t. Either we believe that family building is an important endeavour or we don’t.

It is a bit disturbing that an organization that has been at the forefront of infertility education wasn’t quoted in the article. She refers to the fertility industry, yet never ventures outside of a small circle of “factory owners” to broach those who would receive no financial gain or loss by having changes to treatment protocols.

And for the love, it is a fertility doctor–Robert Stillman–who brings actual sense to this discussion with his participation in the treatment roundtable, giving concrete steps one could take to solve the problem rather than stand in the wings like Stephanie Saul, starting the horror movie music in the background as she writes such fear-inducing lines such as “an exploration of the fertility industry reveals that the success comes with a price.”

She takes extreme examples–a woman with two follicles that split into sextuplets (seriously, Saul, I thought I was going to go into convulsions from your misuse of implant and transfer, but when you stated that the doctor saw “two developing eggs” on the ultrasound screen, I think I literally started foaming at the mouth)–a situation that the doctor had never seen in 30 years of practice–and hold it up as your IUI example. It would be like examining IVF solely through the lens of Nadya Suleman–which…er…I forgot…you already did that a few months ago.

Saul’s sole mention of the solution is buried towards the bottom of the first article: create programs that make it financially feasible to perform single embryo transfers. And instead of exploring that option in the second article, Saul chooses to wax on about the dangers of IUI, instead pointing out how much more controlled IVF is (and it is, but that never was made clear in Saul’s first article) in terms of limiting multiples. She gives solutions short-shrift. Which makes me question the point of these articles. Is it to raise questions that require answers? Push society to examine where we place family building on our emotional continuum? Seek solutions to what she deems a pressing enough problem to warrant multiple articles?

At the end of the day, it comes down to money and overall health–physically and emotionally. Make treatments financially feasible and people would make different decisions. Create programs where embryo freezing is free for those who elect to transfer one embryo and you’d have more people take advantage of the program. Make future transfers free as well and you’d have incentive to lean towards eSET over multiple embryos, especially when drug intake in future cycles can be curbed.

When I taught eighth grade and my students would negate their own thesis within the paper, I would circle the sloppy writing and point out the mistake and send back the assignment to be rewritten. And it sort of sucks that I’m not Stephanie Saul’s teacher because I would have given her a second chance to make a strong case. And as is, the New York Times again is the proprietor of what essentially amounts to verbal Wonder Bread–no substance, no mental nutrition, and mostly air taking up valuable space that could have been filled with useful argument.

Cross-posted at BlogHer