On Ravelry, someone posted a link to this really wonderful blog post by Havi Brooks: Bolivia. It is a metaphor about the complexities around wanting, getting, the drive, and what it all means to either building a family or not.
Bolivia is one of the most insightful essays I have ever read in regards to this issue that touches so many in so many different ways.
I recommend that everyone go read it – no matter where on the family-building, or not, stage you are at.
Roundup’s inert ingredients can kill human cells, particularly embryonic, placental and umbilical cord cells… [Link]
How many pregnancies ended due to residual toxins – lower than are used in fertilizer – from Roundup?
I know that I was exposed to many of these chemicals growing up. I also lived in a rural community and worked at an extension university. My parents both grew up in farming and mining communities. Scientists still don’t know how long those chemicals stay in our systems. We have no way of knowing if this is killing our mitochondrial DNA as well.
More research needs to be done on the long-term effects of all the chemicals we have been putting into our environment. We need to stop throwing things into our environment without thinking about what we are doing to our future – if we end up having one.
This is just another plank in the ever growing list of things we have been doing to destroy ourselves. When will we wake up? When will we think about how our actions create effects for the future.
Salon ran an opinion piece on a movie called Mother and Child. First, I did not and do not plan on seeing it. I was simply struck by the comments section.
How many people dealing with infertility hear repeatedly that they should “just adopt” or “adopt” or “there are millions of children right here in America” or whichever sophist cliché is in vogue that day among the ill-informed?
What happens when an adoptive mom talks about how the media treats adoption as a total tragedy and dismisses the adoptive parents as part of the triad?
The internet trolls come out from under their bridges in droves. The vile accusations of narcissism when someone writes an opinion piece is truly silly. What opinions on media are not, to some degree, narcissistic? You are always speaking about what you the reviewer found good or bad. Makes it kind of difficult to not see things through the lens of your own life experience. It is simply human nature.
The nonsense that is so often spouted came out, and evidence that perhaps those who comment are not the brightest or most learned is evident when someone accuses Sandra Bullock of adopting a foreign child. Last time I checked Louisiana was still a state – Napoleonic Code, but still a U.S. state. (The accusation that Ms. Bullock did this to keep her figure is truly appalling when you consider some accidental statements she has made over the years indicating she is part of the infertile community.)
Only one person dared to say that the judgments were so nasty because there is still an unreflective worship of the biological tie that makes people believe that a child not borne of the parents is not truly their child. I have never really understood this attitude. Blood is not what makes a family – unless you count the blood spilled while sewing, cooking, falling, and living. It is spirit.
Two words have been adopted into English to more clearly define what family really is – ohana (from Hawaiian) and whanau (from Maori). These words have come to mean an all-encompassing idea of family that includes not only blood and adopted relations, but those who we choose as family.
It has been said that family is who must always take you back. For some, this doesn’t include a single blood relative – or an officially adopted one either. Most of us find this group in our lives. For a very few unfortunates, this isn’t true. Perhaps, those who write against all sorts of family-building practices are those who have never found family.
This is dedicated to Mel, the center of the infertility blogosphere – and keeper of many dreams. (I never did follow directions well. This may be why I have written instructions for a living.)
The Center.
Community built and rebuilt.
Each silo having its own mentor.
One way it would tilt.
A scattered neighborhood.
Chaos matched in pain.
Who could gather this brood?
What could she attain?
Then came the Honeybee.
Gathering into her honeycomb,
Branching out as a tree,
Comforting shade from her leaves.
Come fast and near-
A cry from town’s center.
A storm of tears
Comforted by this gentle weaver.
Loss of what never was binds.
As she, and we all, weep.
Kindness winds
Into hearts broken now come to her keep.
I find I can’t comfortably take part in the Celebratory Project at this time, but I thought that this – and maybe a little more – I could do.
Let’s start with the body shame women of all types experience for not being perfect. No one can doubt that Jillian Michaels has dealt with this. She was a “fat kid.”
Now add in a culture that worships perfection in all its forms.
Don’t forget to add the obsession with celebrity pregnancies and babies.
Add the continuing trend of piss poor reporting through out the traditional media.
Very few people understand just how exhausting a 3 hour interview is for both the interviewer and the interviewee. Ms. Michaels stated that she hedged when asked about pregnancy at the end of her interview with Women’s Health Magazine because of “a lot of shame about the answer.”
What was she ashamed of? PCOS and endometriosis.
Jillian Michaels repeatedly referred to being “panicked” and “ashamed.” She considered this topic private. She was shocked at the question. Being tired gave her the opportunity to put her foot in her mouth and inadvertently offend millions of women.
Ms. Michaels states that the reporter used the word “aversion” in regards to pregnancy. Perhaps Ms. Michaels had used the word “aversion” in reference to hormones and surgery. I can totally understand someone being adverse to both.
There is a great deal we still don’t know about the reproductive system and how it works. Both endometriosis and PCOS are mystery diseases for many physicians for whom they should not be. Is it all that hard to believe that someone involved in the health industry may not be comfortable with putting her body through that when she already has to do things to manage those diseases?
What I found most disturbing were the comments – including from women who suffered from one or both of the diseases that Jillian Michaels has revealed. One commenter on an AOL board accused her of lying because the commenter was able to have kids with endometriosis so saying endometriosis causes infertility is bunk. Endometriosis is a very varied disease with all kinds of outcomes. PCOS, from what I have read, is the same way.
I saw some of the same hostility on Momlogic from a few posters.
When even the women who have suffered from endometriosis, PCOS, and infertility can’t find empathy for someone who has suffered a variety of body image issues – with which pregnancy does fit as one – is it any wonder infertility brings feelings of unfounded shame?
Today is hard for women who did not choose childlessness. It makes us think of all the ways in which society sees us as less than those who have had children.
I do not think this is a conscious thing. I think it is something written into society.
You would think that those servicing communities where the vast majority of women in the community don’t have children due to cancer of the reproductive organs would be more sensitive about this. Remember, simply being unable to have children radically increases the risk of ovarian cancer. How disturbing it was to go to the Ovarian Cancer National Alliance home page and found Tell us how you you want to honor a mother . . .
Ovarian cancer. Yes, some women are lucky enough to have had families. Most are not.
I decided to visit the other major charity for ovarian cancer, National Ovarian Cancer Coalition, and they had many links about mothers and motherhood. It seemed especially cruel.
I stopped here. I was afraid of looking for information about uterine cancer at this point. I already knew that all of the cancer societies use motherhood – even for those for whom it is out of reach – to pull at the public’s heart strings. Do they not realize that that sends a message of non-mothers not being as important?
This goes through everything. After my surgery last year my husband and I poured out our pain around not having children to a nurse practitioner who then immediately started in about women with small children. It was as if she hadn’t hear a word we said.
The support boards for cancer have many more mothers writing then childless. I really believe it is because the mothers fill the boards with how their children make everything worthwhile. Does this mean that those without children don’t have anything to live for? To strive for? That is a message that can be heard if you read it at the wrong time – in the wrong state of mind.
I find that certain kinds of pain can be understood by those who have also experienced it. There is a story I’m not sure I told from last year. The first ultrasound tech I saw told me how she and her husband had been pursuing a child. It led to an abdominal pregnancy and total hysterectomy. A failed adoption followed. I know now she was trying to tell me that I wasn’t alone even though many would make me feel that way.
In how many ways does society unconsciously make the childless feel like less?
I was struck recently by the differences between the way the waiting rooms at the oncologists’ office and the reproductive endocrinologists’ office.
One was silence. The other was camaraderie. I think many readers already know which was which.
Though cancer comes with death associated with it, at both the gynecological oncologist and medical oncologist patients seek one another out and talk to each other. All of us have different diagnosis and prognosis. Despite that, we all are faced with putting these poisons in our bodies. This shared experience makes folks want to connect – even if superficially – with one another.
It is interesting that the chemotherapy room is set up in a manner to encourage interaction. It was a half-circle of chairs with a television in the middle. The TV was invariably turned to something inane like a cooking or makeover (of whatever sort) show. Discussions were kept somewhat light as the drugs caused our brains to be less than focused. You take benadryl in an IV and see how alert you are!
Contrast that with the waiting room in the fertility clinic. Men and women wait with downcast eyes – afraid to hope. Quiet conversations are only between couples who have walked in together. Those who violate that are looked at askance. There is a dread that exists within those walls, a despair that doesn’t exist in cancer centers where mortality is being addressed. Rather, a most fragile hope is being held – or lost – within these walls. Not everyone is going to get a baby, and most patients know it.
Why are the two places so different? And the fertility clinic so much less lively? Wouldn’t you think a place that was trying to create life would be more lively than a place that faces death daily? Somehow, the opposite is true. It is almost like cancer patients have a better ability to hope because theirs is a limited hope that society accepts as such.
I wonder if that will change, after all, there was a Monty Python sketch that was done where the word “cancer” could not be said. They changed it to “leprosy.”
Perhaps the fact that we can now speak openly of cancer – and I am old enough to remember when we barely spoke of it – is why there is such a vast difference.
Is it because we still shun conversations about fertility that the quiet dread permeates the fertility clinic’s waiting room and not the cancer doctors’ waiting rooms?
Hope Deferred: Heart-Healing Reflections On Reproductive Loss
I do not believe I can give a fair review of this book. I will say that until the section on science – way out of date – I found the theology sound and not overbearing. Much of what has been written for the popular Christian press tends to press the author’s interpretations rather than the need for reflection and prayer for the individual involved. Very little in this life is black and white.
I wanted to like this book. I did like the book until the misinformation on science – too often seen in all writings – came up in the final chapter.
Since there are so few books written from a liberal Christian perspective on the problem of infertility in the age of reproductive technology, I will give a cautious thumbs up on this book.
Lately, there have been a rash of postings in the infertility blogosphere about The Pain Olympics. What are The Pain Olympics? It is a game that women play to tell others that my pain is more real than your pain. Now, to some degree this is true. Anything that someone has experienced for themselves is more real for that person than anything experienced by another. We can try to empathize, but we can never truly know what another feels or thinks.
There are two posts in particular that have had me thinking about this. The first one was from ME at We Are What We Repeatedly Do called, Pain Olympics. She was talking about how pain is unique to the individual and all pain is not equal. She is right. All pain is unique. The second one was from DD over at Punch Drunk with a post called Dead Bird — Now for the Dead Horse talking about how secondary infertility hurts just as bad as primary infertility. She’s right, too. Nobody knows what pain is in someone else’s heart.
I’ve seen this in the food allergy community as well. A certain feeling that those who fit the Top 8 get all the respect and treatment. If your an allergy sufferer from a food that isn’t on FAAN’s magic list, well, you are out-of-luck. Even within the group of Top 8 sufferers, I have seen the soybean allergic tell the peanut, egg, and shellfish allergic how lucky they are because soy is in everything. Then the non-Top 8 corn allergics point out that soy is so much easier because it is at least labeled.
Interestingly, even though my journey with ovarian cancer has just began, I haven’t seen the same degree of The Pain Olympics with cancer patients. Cancer just sucks. The thing is, it is still there. There is a feeling among gynecological cancer victims that everything is about breast cancer. All the literature, all the ribbons, all the events seem to be about breast cancer. In private, I have even heard non-gynecological cancer patients express irritation at the the emphasis and focus breast cancer gets.
Now this isn’t to say that any of the emotions felt by any of these people is not valid. Emotions are valid. Emotions are felt without logic.
In primary infertility, there is a death of one’s genetic line. Sure, you can, in some cases, choose alternative routes to parenthood – but not all routes to parenthood are open to all people. For some, childlessness is a permanent state that was never chosen due to outside influences. That, of course, is a post for another day. Even if one is to move on to donor, surrogacy, or adoption, the genetic line that you were trying to propagate is no more. And, at a very base level, that is something to be mourned. Those who have a living child do not experience that loss. Does this make secondary infertility any less painful? Not for those in its throes. It does, however, make it completely different.
Then there is the allergy world where a lot of pretenders like to live. I’m sorry, celiac is not allergy! Allergy is defined by the fact that it can unexpectedly kill you suddenly. Even a mild allergy can suddenly become life-threatening and the doctors don’t know why or how that happens. They have a multitude of theories, but no concrete knowledge of that part of the process. The infighting among the allergic – fueled by corporate sponsored non-advocacy groups (FAAN) – does not help matters either. Interestingly, FAAN actually encourages the divide between the Top 8 and the rest of the allergy community. They have even told those who are not allergic to the Top 8 that their allergies are rare – though there are no well-done, peer-reviewed, non-corporate sponsored studies that have concluded this. Does this make those with the Top 8 allergies less important than those with non-Top 8 allergies less important? Or vice versa? No. Both are important and the infighting doesn’t help anyone.
As to other food related diseases such as celiac? Yes, they are painful and deserve to be researched and recognized more often than they are. Food intolerance should not be ignored. It is important, however, to not conflagrate the different food-related immune diseases as this gives doctors and the general public an excuse to ignore the real problems. Celiac can cause a long lingering death with infertility thrown in. This does not minimize the pain it causes as the food industry and public health officials don’t seem to care one wit about any of us. We need to stop comparing and one-upping our pain in order to get the food industry and public health officials to take us seriously.
Finally, the perception around breast cancer getting all the attention. Right now? They do. It is because they have survivors in numbers and breasts are easy for the public to think about. How many people really understand what an ovary or a colon or a cervix or pancreas does? We have horrible health education in American schools. The vast majority of people have no idea what anything besides a vague idea of what any of their organs do. Most people don’t even fully realize that their skin is an organ! How can we expect them to understand about cancers in the organs they don’t see and think about when most of us don’t speak out and talk about it? Many people don’t realize that cancer research is in need for the less common cancers. They really believe that by giving to one cancer charity they are helping out all cancers. They don’t really understand that cancer is not one disease. Heck, even ovarian cancer is at least 3 different diseases – and there is growing evidence that the epithelial cancers may actually be 4 discrete diseases in and of themselves. How is The Pain Olympics of “they get all the attention and we get none” helping?
Interestingly, my DH brought up The Pain Olympics unwittingly with mention of a post on The Daily KOS about artificial insemination. People were sharing their own painful stories about family-building and he was sorely tempted to share our story. When he told me this I laughed and told him he just entered the world of women and The Pain Olympics. His perception is that everyone who has it worse than us has stopped blogging. (I know this isn’t the case, but understand his feelings.)
Now, does anything I say above invalidate the need to sometimes vent about how badly you hurt and how someone else has it so much easier? No, not at all. We all have pain. Each bit of pain is unique to us and is just as valid as anyone else’s pain. What we feel is what we feel. Heaven knows I have had my days of thinking that I must have won The Pain Olympics. Let’s see, get the food allergy that nobody believes in (corn with multiple other allergies (food, drug, and environmental) – recognition of this allergy has gotten much better in recent years); find out we are unable to have kids without IVF to get pregnant and have a miscarriage at 19 weeks; gear up to do another IVF cycle only to find Stage 1c Ovarian Cancer with a Grade 3 tumor that means hysterectomy and chemotherapy. Does this mean I win?
How strange to be starting chemotherapy for ovarian cancer only a week earlier than the first anniversary of my miscarriage. The morning I saw the blood that told me the ultrasound really had been right, even as I had numbly gone to the ladies as the tech pretended nothing was wrong before looking one last time, I knew before she told me.
All I remember thinking was, “It’s dead, get it out. I can’t carry a dead baby inside me.” For 19 weeks I had carried the fetus that now lay wasting inside me. At this point, there were only two realistic options, inducing labor, or a D&E. Inducing labor may not have completely rid the uterus of the remains, a D&C might have had to happen despite.
To me, the idea of being hopped up to deliver a dead baby seemed nothing short of torture. And, I was lucky since it was before 22 weeks. In the backwards state of Michigan, there is no other option past 22 weeks. It doesn’t matter that the fetus is dead. All other options are illegal despite some of them being safer. The legislators who passed such heinous legislation are guilty of misogyny as far as I am concerned, and I would not want to be them when they face the Judge of us all.
The fetal tissue was tested and came back as normal. A perfectly normal fetus had died. I wanted answers and sought out Dr. Professor as a hematologist. It turned out I did have two thrombophilias. I had railed to be tested prior to doing my first cycle, but no one took my concerns seriously despite a family history of miscarriage and stillbirth. (And, yes, this still angers me to some degree. The anger only mitigated by the fact that they all assumed first trimester miscarriages, never bothering to ask when the miscarriages had occurred – all in the second trimester.)
I had hoped that the next time I saw Dr. Professor it would be to manage happier news. But, instead, I start chemotherapy for a disease that has forever robbed me of the opportunity to carry a child to term. Forever is gone the ability to build a family without lawyers and courtrooms and social workers – and all the expense that implies.
Each dream I have ever tried to build has been completely destroyed by things outside of me. I know there is no rhyme or reason to why things happen. They just happen.
It is only cruelty to say to someone, “It is meant to be,” or “Everything happens for a reason.” They say those things only to comfort themselves – knowing or not, their words just hurt the ones they are directed act. So, if you ever feel yourself starting to say something like that to someone, STOP! You will only be adding to the pain. There is no “meant to be” and, no “reason.”
It is odd that not only is it so close to the one-year anniversary of my miscarriage but I also get the cancer with the treatment that has a very high risk of allergic reaction. If I truly thought there was a “reason” the only reason I could come up with would be that God/The Universe/Fate/Whatever hates me.
After working in a field with abused children for a short time in college, I already thought that if there was a reason or a “meant to be” then God/The Universe/Fate/Whatever was the cruelest bastard to ever exist and deserved nothing. The only way I could reconcile it was to know that intervention is rarer than a yellow sapphire and only in the most dire circumstances – like when the human race was about to blow itself up.
I can understand why many former religious become atheists. It is a well-reasoned thought process that takes them there. I’m not there, but, my belief in a mostly non-interventionist God has been pretty much confirmed. And, nothing short of an impossible miracle will change my mind.