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Mixing Awareness with Remembrance and Hopefully Getting Action

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.


1 Nancy { 10.20.09 at 12:09 pm }

Excellent post! I am on the other side of the battle now as I have completed my family building. I still have the scars though and I think they color the way I see the world. Sometimes I see the way someone will look at my children and wonder ‘is she one of us?’. I shoot mental vibes “I am infertile too!! I worked hard for my childrent.” or simply “I know how you feel”….. I wish there were pomegranate metallic ribbons or bracelets etc out there, not so much to increase general awareness but rather to show that there are others out there. That people struggling in the trenches are not alone! For me way back in 1997, the internet boards were brand new and a lifeline. Someone understood, someone out there felt the same things I did.

2 Anna { 10.20.09 at 12:14 pm }

Fantastic post. I feel like I’ve been hit in the face (but this is not a bad thing), I also feel guilty and a bit dim for not having thought this through before – thank you for the wake up.

Thanks also for putting this so articulately, I haven’t ever contemplated the disparity between awareness and action before in any context and if I think about instances where illnesses have impacted my family you’re right, our experiences are distinct from those people are made ‘aware’ of. You’re totally right about the inherent passivity of awareness and you’ve vocalised and realised some of the uncomfortable feelings I have experienced in relation to endorsements and awareness tie-ins that I hadn’t pushed far enough to question.

Who knew I’d do more thinking having got home from work than I did all day.

3 MeAndBaby { 10.20.09 at 12:15 pm }

Awesome, awesome post.

4 a { 10.20.09 at 12:30 pm }

I went searching on Facebook to find the Pregnancy and Infant Loss Awareness button and posted it on my page. One of my sisters joined the group, and a friend thanked me for posting it because she didn’t know such a day existed. I guess my point is that generally, action is for those who suffer from the problem and awareness is for everyone else.

Most people I have read said that they don’t need a day to remember because they remember every day.

I’m all for action, but for me, I haven’t had much fighting to do. My state mandates coverage. I had decent (although not comprehensive) coverage for the testing and medications I used. I found good doctors. Now, I recommend doctors to anyone who mentions that they have issues. I guess my action plan is to try to listen well, and pick up on the nuances of conversation when it comes to childbearing.

5 IdleMindOfBeth { 10.20.09 at 12:32 pm }

tomorrow’s Kirtsy!

6 Mrs. Spit { 10.20.09 at 12:36 pm }

I have to admit, this bothered me. Really bothered me. Not that we should be a lot more interesting, and a lot more radical about infertility, but that those of us in the perinatal demise group, comprised of 1 in 200 pregnancies get lumped in with everything else. Lots of women in the perinatal demise group don’t have infertility, and lots of women in the infertility group won’t have a baby die.

We get matched with miscarriage, and we get matched with infertility, and they are all painful and emotional and awful, and they all have something to do with your uterus, but that’s all they have in common.

We need to stop this. We need to accept that perinatal death is different from miscarriage, which is different than infertility, if for no other reason than the families going through each experience need different types of assistance, and they need to be listened to and heard for where they are right now. It is different to grieve an empty uterus, than to grieve not being hugely pregnant and giving birth, than holding a tiny baby in your arms that is gasping for breath, than in hearing that there is no heartbeat, than in holding a week on NICU-er that is dying. When we group, say that these are umbrella occurrences, we don’t listen to everyone. We tell families they have to be the same, and we don’t recognize the differences between each issue. And someone feels left out. I suspect everyone feels left out, because no one is truly heard.

I think, in our effort to be kind to all, to listen to all, we have painted everything with a brush of sameness, when nothing is the same. My voice as in infertile woman is different than my voice as someone who has RPL, than as the woman who held a dying child. My needs, for treatments, for understanding, for sanity were profoundly different. These are different medical situations, and they should be followed up with different responses. We don’t treat a heart attack patient with the same method as a kidney failure patient, because we patently understand different disease, different issues.

These are different voices. We need to stop being adoption loss infertility, and start being communities who work together, but realize that we are different, and we have different needs.

One of the things I use Oct. 15 to do is to talk to people about prerinatal death, pointing out that the likelihood of a baby dying of SIDS is about 1:2000 (In Can), the risk of perinatal death is 1:200, but no one talks about doppler studies and kick counts.

Infertility is a huge issue, it should be talked about, shouted from the roof tops, on it’s own day.

Equally, why do so many babies die of miscarriage? Is there nothing we can do other than aspirin and progesterone? Really? Why aren’t we looking into this?

And finally, why the hell are so many babies dying? How can we have Viagra and have a woman die of pre-e in Africa every 6 minutes? How is that possible?

Yes, we need to advocate, loudly. But separately. We can help each other out, and we should, but we should understand these things are different.

7 Journeywoman { 10.20.09 at 12:42 pm }

GREAT post. I too want infertility ACTION. I’m going to think on this and try to figure out how we can do more.

8 Christa { 10.20.09 at 12:51 pm }

Excellent post! It spoke what I was feeling in my heart but couldn’t find the words to express!

9 Lavender Luz { 10.20.09 at 1:07 pm }

Kirtsy is down at the moment, but if no one else has Kirtsy’ed and Dugg this, I’m happy to.

You got to meet M? Jealous!

Great thoughts came out of that meeting!

10 tash { 10.20.09 at 1:09 pm }

I want to state upfront that I agree with everything you said, and I wish the same. And like Mrs. Spit, I also wish we could untangle “pregnancy loss” from “infant loss” and “infertility” and celebrate/remember/act on different days, not because I think one is more deserving or worse than another, but (having been through them all) because in my mind they both deserve different types of support. But that’s another post.

I think my one sticky point with this example (though it’s a great one) is that when I got inundated with pink a few weeks ago, I not only thought about a few women I personally know who’ve had mastectomies, but I did a self exam for the first time in a few months (I’m downright lousy about that). Because I feel invested in this, and know this hammer could fall simply because of my sex (like infertility, I suppose). BUT in this case there’s something I can personally do to take action — do exams, get my annual mams, etc. Although I suppose there’s a bit of fear on the part of some that infertility could happen to them based on what happened to a sister or friend, there’s really nothing a woman can do to relate to infertility if she doesn’t/didn’t have it, nor can she “catch it early” so to speak. Sure, she can go through procedures and hopefully cross the line one day like the happy breast cancer survivor, but I think both realize sometimes it’s just stupid fucking luck that got you there — that there are countless women who didn’t smoke and did their self exams and did countless rounds of IVF, and injected themselves and whatever, and they’re not there with you at the finish line. But teaching luck like this is difficult unless you’re in it, and people like causes where there’s seemingly something attributable, and a concrete something one can do (I can do a breast exam, I can give $ to the Susan K. fund for research). And I think in the case of infertility either you’ve got it, or you don’t. In other words, I think the “awareness” and “action” in both cases is different, and that may be what’s hard about this example in terms of “taking action” and finding something similar to take action with regarding infertility. It’s hard to be proactive about infertility, really when you think about it — most women don’t realize they’re in it until 6-12 months have passed, and they start surfing around and acquainting themselves with all of the bad shit that could be happening with their ovaries and uterus, and trot off to see an RE. (And that’s for self-motivated women with computers — I know of plenty of women second-hand who simply endure and wonder WTF is going on, and have no idea that this could be a problem or that there are doctors who can help them.) (Also, should potential infertility problems be common knowledge for all women by the time they reach their 20s? Probably.) And I’m not sure how one crosses this bridge in an effective manner with the general public, though I concede your point that trying to simply raise awareness that people you know and employ are going through this is huge. And that we should be taking some sort of action to raise money for research for everything from effectively treating PCOS to uncovering the possible early warning signs of Pre-eclampsia and finding ways to avoid both.

Also, I think I might politely disagree and state that for me, in some cases, awareness is a form of or absolutely necessary precursor to action. I think when guys see football players wearing pink and hear for the first time that Brett Farve’s wife is a breast cancer survivor, that perhaps it hits a nerve that if this terrible thing can happen to this rich and famous guy, it can happen to me. For me, I would like people to be aware that babies die, and they die relatively frequently when you stop and consider the odds. People who think these odds and stories are “scary” and “negative” and “I don’t need that right now! I’ve got kids!/I’m pregnant!” are putting on blinders, and there is no fucking way you’re ever going to get them to give money to prenatal neurological research or better imaging technology or the Genome project because they’ve just blocked out this universe with the adage: It won’t happen to ME. I’M doing everything right. That only happens to THEM (e.g., women who smoke and drink during pregnancy, and I guess slip and eat Brie or whatever). And sometimes simply telling someone, and engaging them in conversation and getting them to really listen and maybe confess their fears but understand that you’ve lived through their worst fear, and that they now get that they don’t want what happened to you to happen to anyone else ever, THEN perhaps they’ll open their wallet or enter a walk, or volunteer at Ronald McDonald house or whatever. Pink got me to do a breast exam, and hearing my story got the lady who does my eyebrows to fully embrace her salon’s annual fund-raiser for CHOP, because she now has a client who’s faced that hell.

I guess what I’m saying after all of this, is that there needs to be a lot more awareness before there’s action. Breast cancer makes it easy to take action, but they did that through massive amounts of awareness. It’s easy for me to go take a shower and take action re: early detection. Sadly, it’s kinda up to us to make it easy for others to take action re: infertility, miscarriage, neonatal death/stillbirth because this isn’t something people think will ever happen to them until it does, nor can they go home and poke their ovaries and hope to avoid an unhappy scenario.

(Also, is there any way you can get a “preview” option for your comments? It’s really really hard to preview and proof in this wee tiny box!)

11 Michelle { 10.20.09 at 1:17 pm }

EXACTLY!! I am always bothered by the fact that enough is not done. I spend not only Oct 15th but many days talking about and educating people on infertility. Although, less now (because I do not have as much contact) that I am not working. I am sure when I was I drove people crazy sometimes but I felt that I needed to let people know what it is like to go through this. That their insensitive comments hurt. Most of the time now I am not shy about telling the person (unless I do not know them, which maybe I should tell them) when what they say is insensitive and I am not shy about anything related to what I have gone through. I have found even the people who are in my family who have known since day 1 still do not really GET IT. So I will keep talking and doing what I can do. I want it so much to be more. I just wish I knew what it was.

This is an AWESOME post! I especially like “I want take-your-insensitive-coworker-to-the-clinic day.” That would be a great day and clinics would be full. LOL

12 Kate (Bee In The Bonnet) { 10.20.09 at 2:08 pm }

Yeah. I’ve been feeling a little skeeved by how many companies push the pink versions of normal products and then send a slim cut of profits on those items to some vague charitable entity having something to do with breast cancer. It just smacks of false sympathy or something. I don’t like it.

And I think I agree with you that awareness has gone far enough. It’s time for action, especially for the IF community. I have ended up being far more open about our process than I had intended to, but I have been seeing it as a chance to educate, clearly telling people as I go along that this step has worked for me, but it doesn’t always work for other people. Yes, I have two embryos in me, but it doesn’t necessarily mean that they’ll both implant, or that even one will implant (though in my case, it looks like at least one did! Wahoo!). And even after implantation, it doesn’t mean that the pregnancy will stick, and it doesn’t mean that the baby(/ies) will stay in for 9 months, and it doesn’t mean that there will be a healthy bouncing three-year-old in three-years-plus-nine-months. I try to be jovial about it (it’s early, not counting my chickens, etc.), but I love seeing the light come on in people’s heads, like they get that this is a huge process with no guarantees whatsoever. It’s really refreshing.

So, yes. An excellent call-to-arms, Mel! A rousing reminder to TAKE ACTION. Thank you.

13 Calliope { 10.20.09 at 2:10 pm }

I totally hear you. And I wish there was more action in terms of fighting infertility. One of the ways people can get more involved is to get involved with health care reform debates. One of the most epic hurdles that most women have to leap over is the lack of infertility coverage. I never had coverage. (& now I don’t even have “regular” health care coverage because I take anti depressants and have acne.) But if more women could get access to affordable fertility care it would be a GIANT step. (& maybe clinics would stop over charging…)

14 Kim { 10.20.09 at 2:10 pm }

“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?” THANK YOU! I have often asked this question and even more so recently as I happen to live in the backyard of the Savage case. It has caused more assumption and misinformation about treatments to spread in our area than we will be able to undo for quite some time.

15 Eve { 10.20.09 at 2:21 pm }

Bouncing off what others have said, the path I’ve chosen in my own battle with infertility is combined between awareness and action. I mean, there’s the dolt’s awareness that ‘infertility exists’….but then there there’s personalizing that awareness by sharing with friends and family my OWN experience and what it means for me to have been infertile. I decided the best course of action for me was to refuse to play into the ‘shameful silence’ hand that so many of us feel we have been dealt. I made people uncomfortable when they asked me (in that very condescending way) if I had any children, and spoke up for myself when people said rude and hurtful comments, I talked about my infertility treatments unapologetically, and gave detailed descriptions (for those interested) on what PIO injections were like. I hope that my open approach has helped others in my life touched by infertility (I know I have several ‘fertile’ friends who tell me they are super aware of insensitivity now). It may not be a 200 person march down Main Street, but I think all of us can at least refuse to cloak ourselves in silence about our struggles and fight for understanding one person at a time. That’s how most understanding is gained anyway, rubbing elbows with people LIVING that experience.

16 Jamie { 10.20.09 at 2:40 pm }

I love how you can take my own thoughts and make them coherent and fun to read.

When I posted about Pregnancy and Infant Loss Awareness Day, it was for awareness. I hated the fact that during my IF and miscarriages, it was taboo to talk about. I could feel people trying NOT to look at me and trying to find some way to NOT talk about what I was going through. It hurt as much as the IF and losses themselves.

But you are right – screw awareness. We need action.

17 Shelli (BagMomma) { 10.20.09 at 2:42 pm }

Such a thought provoking post. Really Mel, you hit it on the head.

I am an “out there” kind of person with my infertilty, and honestly, for me I feel like talking about it here and IRL is the one “positive” thing to come from infertility. I’m not talking third-party reproduction with the donut shop guy, but I sure as hell use opportunities to educate others in my immediate circle.
Not because I want people to feel sorry for me, but because I am just so, so annoyed at the amount of misinformation out there.

People understand cancer because cancer is bad. Cancer often leads to death. Those who do have it want to survive, and those who don’t are scared to get cancer. It’s about FEAR.

So with infertility? It’s perceived as a bump in the road. It’s not life-threatening in most cases so it’s easy to just ignore it. Fertile people just don’t think about losing their fertility until it happens to them. So the call to action will only ever be with us, one of those 7 million, not with the world, as in the breast cancer example. Sad but true.

18 loribeth { 10.20.09 at 2:58 pm }

Mel, you continue to amaze me with your ability to analyze the most complex issues, lay it all our in a logical way & zoom in on what needs to be done. : )

I agree with you that we need a lot more action than awareness — but I also agree with Tash that it takes a LOT of awareness before any meaningful action gets taken.

I think it was the Still No More website where I read that something like 70 babies are stillborn in the United States alone — Every. Single. Day. (stillbirths only — not including miscarriages, neonatal deaths, SIDS…) — and that if we had a plane crash every day of the year where 70 people died, every day, you can bet that there would be a huge public outcry and official investigations and demands for answers and preventative measures to ensure that this didn’t happen anymore, or at least, not so often.

19 Mrs. Gamgee { 10.20.09 at 3:50 pm }

Bravo Mel, on yet another though-provoking post! There are so many directions this comment could go… I just don’t know where to begin.

Awareness without action is practically useless. And throwing money at an issue is a panacea at best. Walking alongside someone in the midst of their darkest times (be it infertility, terminal illness, or any other issue) is a great deal more challenging and ultimately more rewarding.

Since my journey through IF began, my choice has been to talk about it openly. To help educate those in my circle of influence about the realities and struggles those walking this road face. I look forward to every opportunity to share my story, and the stories of others I have come to know in this community. And I hope and pray that there will be a way to make a concrete difference (and trust me, I’m looking for one).

In response to Mrs. Spit’s comment: I whole heartedly agree that it is unfortunate that we are all lumped together. So many of our issues are different, even if we all long for the same thing… a healthy baby of our own. I know, personally, there are times when I’m not sure that I fit because IVF and IUI are not in our family-building plan. The thing is, there is power in numbers. We can support each other because we can empathize (even tho we might not be able to understand all the specifics) and our voices combined are much more powerful than if we just stand alone.

20 Bluebird { 10.20.09 at 4:31 pm }

Great, great post that brought tears to my eyes. As I was reading though, I was also scratching my head wondering what I missed, since I didn’t realize that October 15 had anything to do with infertility (except as related to miscarriages). I see that others picked up on that too and articulated my feelings better than I could now.

I’ll be honest, on October 15 my deceased twins were on my mind, not the struggle it took to conceive them. People are certainly clueless about IF, but I dare say that (and *not* to get into a “which is worse” debate!) people are even more clueless about the fact that pregnancy does not = live baby. Both are losses, certainly, and both are life changing – I was just confused because I thought October 15 was to recognize/ remember those who were here but left too early.

But yes, on your point – we definitely do need IF action.

21 Lollipopgoldstein { 10.20.09 at 4:40 pm }

October 15th is about loss–but the textbook definition of infertility includes three or more losses. Therefore, there are some people who have received the diagnosis of infertility from their doctor because they have had three losses, there are others who are infertile and have experienced loss, and there are those who have experienced loss who do not have infertility.

My reason for bringing in October 15th is not to define community, but to point out an example of awareness/remembrance and hopefully, action.

22 Lucy { 10.20.09 at 4:41 pm }

I love what you write here: “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.”

My favorite line. I hate how people or business uses ribbons–whatever color they are, and think just using the ribbon means they are doing good. I so agree about wanting ACTION!

23 Jen { 10.20.09 at 6:08 pm }

I’m with you (and Lucy too!) when I say, “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’m raw from BFN today from IFV2, tired, and without hope. So I’ll just leave it there, less I rant and rave…!

24 Delenn { 10.20.09 at 6:17 pm }

Brilliant post and I love the comments. I have actually been ignoring all the pink–mainly because I feel its corporatized and inactive. But I do agree with one of the commenters on the fact that at least the breast cancer campaign has made people VERY aware and at least somewhat active (i.e. breast exams).

I do think we need more awareness on the infertility issues, in tandem with action. I feel my part is to spread awareness of my own struggles with infertility and to be completely honest about how Willow was born. I have bought her shirts that say she is an IVF baby, just so that people will ask me. Most people are unaware of the terminology, of how many people need treatments, etc. Whether we make them understand through awareness or action–as long as they hear us.

25 PJ { 10.21.09 at 2:42 am }

LOVED the post! I love and admire your passion.

When we first started treatments I wanted to raise awareness, and there is definitely part of me that still does. I think if this EVER works out for me, I will be more active, ie get involved with Resolve, etc. Right now though, and especially after the 2nd miscarriage, it became a whole lot more of a private battle for me. As in, it’s painful to share and I get tired of people feeling sorry for me, and as in, I am about so much more than my infertility and I don’t want to be “the girl with the infertility problems”, even though I fully claim that as a part of me. Hope that makes sense…

Nickel and Dimed was fantastic! I had to read it for a women’s lit class I took. I definitely agree about the commercialism of breast cancer awareness, and I would hope that infertility awareness evolves in a better way. And I DO think it will evolve. I just wish the media would not focus on the negative aspects, because they certainly have potentially set us back.

I’m rambling…
Fantastic post!

26 coffeegrl { 10.22.09 at 4:02 pm }

This is a great and thought-provoking post. When I registered to walk in the Susan G. Komen Breast Cancer 3-Day a few years ago, an acquaintance of mine asked what’s the purpose of such a walk? He’s an economist by training and his point was basically that fund-raising could be done more efficiently in other ways. I tried to emphasize the community and awareness building aspects of the event, but his point was well taken. There are weaknesses with these kinds of awareness events particularly in light of the pink that is currently splashed throughout the supermarkets on every product possible.

That being said, I do think that we need to have both awareness and action. For now I won’t address Mrs. Spit’s well argued issue about the divisions within the ALI community, but will instead say that wherever action is needed, there must also be awareness. It does seem like it a wonderful first step would be offering suggested actions for friends and co-workers and acquaintances – people who might know about a loss but who don’t have the first clue about how to support the parents.

(c) 2006 Melissa S. Ford
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