#StartAsking Reproductive Medicine to Prioritize Patient Care

Dear Reproductive Medicine,

I’m one of your patients.

I went through five IUI’s (all done with injectables), one hysteroscopy/laparoscopy surgery for stage 3 endometriosis, four fresh IVF cycles and one frozen.

I also, during my four year trying to conceive trek, unexpectedly dealt with PTSD that went undiagnosed for quite some time and entailed panic attacks, many of which took place in your waiting rooms.

My husband and I have now embarked on the third year of grieving and mourning the loss of our children, notably all by ourselves.  And no, we don’t consider our departure from reproductive medicine and the pursuit of a family with children a “choice” upon which our grief can be blamed.  It was, rather, the only sane and responsible action to take under the circumstances.

Yes, I’m one of your patients.  A patient who, two years and three months out of her final treatment is disturbed by many aspects of the care she got….and didn’t get…..while in the care of reproductive medicine.  Prompted by this year’s National Infertility Awareness Week theme, it’s time to #StartAsking. (more…)

Infertility Feature in November’s Redbook Magazine

And I’m in it….

Wow. I never presumed my last post on the way infertility has re-shaped my own personal perspective would resonate. Seems I had been feeling alone and isolated in this too. Thanks for all of the shares and comments. I’m hoping this perhaps leaves us all feeling a bit more centered in and aware of where we are – so not an easy thing – and especially validated on this tough, tough journey we are on.

I tried to write about this subject back in July (sans Huff Post Parents provocation) and it came out as a bunch of indiscernible garble, so, I let it go. I wasn’t there yet. Since then I’ve been struggling a lot with understanding how my experiences of the last five years have changed me and the way I now see life and relate to other people. This is not an easy thing to comprehend and then process when you never see yourself reflected out in the world – not in social conversation, rituals, acknowledged losses and rites of passage, or in the media anywhere.

When it comes to grieving and healing, a lack of available resonance increases one’s workload, and time in the trenches, exponentially.

Hopefully, that’s starting to change.

The November issue of Redbook Magazine did a feature on infertility. And I served as the source for the section that reported, FINALLY, on letting go of the dream of motherhood in the face of infertility treatments NOT working. (more…)

SITTING IN IT

One Infertile’s Perspective on Mother’s Day

That the experience of infertility changes the way one contemplates and goes through Mother’s Day really should go without saying.  For those of us who are forced to endure any kind of loss, getting through days significant to that loss becomes a project of sorts, hurdles that survival mode warns you of yet also beckons you to clear.  It’s not that I don’t want anyone else to enjoy Mother’s Day.  Unfortunately I have to point that out since our culture has this weird habit of misinterpreting the expression of one’s pain as the desire to take happiness from another.

This isn’t that.

This is my fourth Mother’s Day as an infertile.  It is my first as an involuntarily childless infertility survivor, my first knowing that I will never bring a child into this world through my body and will never have biological children.  How to process Mother’s Day is quite the inquiry for someone who is a slender three months and eleven days out of their failed fertility treatments and currently too depleted on every level to decide on whether or not to pursue adoption.  My mind turned to what to do about it, as the human brain is prone to do.  One of the tough things about going through the infertile experience is having to constantly call off many of your instincts that are so innately human.  The lack of control that is the nature of infertility renders many of these formerly tried and true coping skills useless.  The need to problem solve and fix is one of them, and the instances over the past four years I’ve had to tell my brain “There is no fix, no solution for the moment.  You are going to have to sit in it” are beyond plentiful.

Although I found myself sensing that this Mother’s Day was going to be one of those “nothing to do but sit in it” situations, my pesky, over active mind of course managed to fit in some musings in the space before I was able to redirect it.  What would make Mother’s Day less worse? (more…)

The End Of Our Bio Family

An Open Letter

This post is a letter I composed with input from my husband upon finding out our last fertility treatment failed.  Fortunately, we never had to send it as most of our close friends and family (in other words the people who really matter) have been extremely wonderful and supportive.  Both Julio and I have had a lot of helpful talks with empathetic friends.  I’ve gotten some very thoughtful emails.  Some of the close people in my life have been checking in on me consistently, and I even got a sympathy card of sorts from a friend.  A lovely note of acknowledgement of our loss and support that meant the world in the midst of this loss that all too often goes unacknowledged.  Friends and family members of infertiles pay attention: This is a great thing to do for an infertile couple who has come to the sad end of their baby making hopes.  So with all of that said, writing this helped us process our situation and gave us some food for thought even though we realized afterwards there was no current outside need for it.  Although with my husband having a lot of contact with the public in his job, it feels good to have a piece of writing up our sleeves for those who don’t know us as well who may not want to accept and understand our situation.  We never know when we might need it as the job of an infertile is never ever done……….

An open letter to family, friends, and all who know us:

February 2, 2014

Julio and I are saddened to officially let you all know that after three years and eight months of trying, one surgery, ten failed fertility treatments, and $77,000 spent, that we will not be able to have our own children.  January 31, 2014 is the day that dream officially died.

We want to provide a basis for communication between us and everyone on this subject, as it is something major people in our generation deal with but there currently is no existing protocol for it.  Working from square one every time we are asked about it or break the news would be both exhausting and futile.  It is our intent to address the topics we know from experience come up in conversation.  We hope this letter sheds some light not only on our loss, but on the significant as any and all too often unacknowledged loss in general of coming out of infertility treatments with no children.

HOW ARE WE DOING?  (This is a good first question).  We are sad.  We are grieving.  We feel empty.  We are absorbing our loss as well as processing what this change may mean for our life ahead.  We are traumatized, especially Sarah for whom this assault was physical as well as spiritual, mental and emotional.  Going through all we went through to not get anything from it is a process Sarah has likened to being decapitated with a spoon.  We are doing as well as anyone who has suffered loss within their family would be doing.  We will slowly start to pick up the pieces of our lives that infertility shattered, and are already finding some satisfaction and relief in this.  Some pieces we will put back together, some we will reconstruct, and those that can no longer exist we will throw away, as this has changed us forever.   Most importantly, we will start to heal from this extraordinarily depleting and devastating thing that is so innocently called “baby making”.  In spite of it all we will eventually be ok and we will get through this.  Bio kids aren’t something one can conveniently cross off a list while hopping and skipping right on to the “next step” of family building.  Our most important and necessary “next step” right now is healing.  Amidst our culture that is relentless in demanding resolution and answers, Julio has expressed the need for “some space”.

WHAT ABOUT ADOPTION? (This is NEVER a good first question!) Once one has been denied the privilege of receiving their family the “easy old fashioned way”, any process gone through to acquire a family is arduous, demeaning, and expensive.  As we have just gone through the arduous, demeaning, and expensive process of utilizing ART (assisted reproductive technology), we need to think at least twice before embarking on yet another arduous, demeaning, and expensive journey!  It is also important to understand that although adoption can often work out to be a wonderful thing, it is in no way a replacement for the loss of our biological children.  This loss will remain with us forever.  In addition, we have been told that Julio’s immigration status excludes us from adopting internationally and we are concerned that it may be a problem for domestic adoption as well.  Although we are serious about taking a break, we will be working on finding this out sooner rather than later.  We are concerned that on top of everything else the privilege of adopting may also be taken from us and hope Julio’s status turns out not to be an obstacle.  We have ruled out the options of egg donation and embryo adoption as of now.  We have many reasons for this however it is mainly due to the fact that our immunological and genetic issues would make positive results harder to acquire and less likely, and to Sarah’s intense desire to never ever undergo another fertility treatment for as long as we both shall live amen.  We are also seriously considering the option of living involuntarily childless.

YES, IT IS REALLY OVER.  We have often been comforted by our family, friends, and people who know us.  The notion of baby making “ending” is not one that people accept easily though, since it is rarely, if ever openly faced.  Having to hear the comments from people who aren’t willing to accept our reality was one of Julio’s first major concerns in the hours after getting the official word from our doctor.  As infertility veterans we already have been exposed to the prevalence of comments such as “Don’t worry, you WILL have a baby” or “you never know, maybe a miracle will happen”.  Having to deal with the truth that this is not to be is hard enough without having to convince other people!  Due to our immunological and genetic issues the chances of us conceiving on our own are .000001% if they even exist at all.  If not impossible then highly highly unlikely.  Whether conscious or subconscious, unless experienced otherwise most of us hold some form of the belief that good worthy deserving people who would make spectacular parents will eventually win out and get what they “deserve”, which is also better for the world in a sense.  Sadly, baby making does not work this way.  Though it often works out the “right” way, the fact that good people can do everything and get nothing while those who abandon, severely abuse and even murder their own children are often quite fertile is simply a hard truth of life here on earth.  What it boils down to is that there is nothing left to reasonably do or try.  We have done absolutely everything right and nothing wrong.  We have done absolutely everyTHING period.  Whether this is nature’s failure or the universe’s mistake doesn’t really matter to us right now.  We know it is not ours.  Should one feel the normal urge to beg to differ on this being over it may be helpful to remember this:  On top of everything else we’ve experienced, we’ve been diligently and intimately involved, over the course of the year, in the creation of twenty four embryos that have been transferred into Sarah and have turned into nothing.  This gives us a perspective on the uselessness of hope and the impertinence of belief that is beyond the scope of imagination of most human beings.

WHY?  When bad things happen to good people, and that’s really all this is at the end of the day, it more often than not provokes the question “why?”  Over time we have both accumulated a disinterest in the whys and possible reasons for this.  We have come to realize it’s better for people to mull over the possible spiritual and or philosophical implications of this on their own, as there is nothing that brings us any spiritual comfort right now.  The “if it’s meant to be, it’s meant to be” view of things is just peachy until “IT” happens to you, I’ve learned.  The notion of there being a valid reason for this is both hurtful and offensive, and needless to say, neither of us are exactly fans of god and the spirit world at the moment (we are not alone as a sense of spiritual disenfranchisement is very common amongst infertiles).

Most of all we want to thank everyone who has supported us in any way through this challenge.  We want to thank every single person who ever listened to either of us, and those who acknowledged and continue to acknowledge our pain and our loss.  All of your sympathies and kind words and good wishes and accommodations helped and will continue to help to carry us through.

Sarah & Julio

Throughout our journey, Sarah has developed a radar as well as a strong distaste for baby making myths, since their mere accomplishments consist only of victim blaming, scientific ignorance, and truth aversion.  For anyone who still has the stomach to read on (and we really don’t blame you if you don’t), she’d like to debunk a few right now!

MYTH: Once you give up trying, THEN you’ll get pregnant.

IN FACT, There is no absolute proven path to conceiving a child.  IN FACT, Women have been getting pregnant and not getting pregnant in all kinds of situations, trying hard and not trying hard, focusing on it and not focusing on it, since the beginning of human history.

MYTH: Once you adopt, you’ll get pregnant.

IN FACT, Pregnancy rates for infertile couples who go on to adopt are EXACTLY THE SAME as for those who do not go on to adopt.

MYTH: Miracle baby infertile success stories are always inspiring and give hope.

IN FACT, They are dismissive of the reality of someone who has exhausted all possibilities of becoming pregnant.

Seems almost everyone has some chipper and dramatic miracle baby story ready to whip out at a moment’s notice.  Society and the media are gluttons for them.  Like they know someone who knows someone who they are sure did 97 rounds of IVF to no avail.  Someone who had been trying to conceive for twenty years when she got kidnapped by aliens in a spaceship that landed on Mars where the Martians stole her ovaries in her sleep, put them in a vegetable terrine and ate them while catapulting her back to earth during which time she completely, completely gave up all hope until hark she was pregnant six months later.  With twins.  Of course, because everything ALWAYS works out the way it’s supposed to (insert fertile world unicorns here).  These stories are told amply and out of proportion to their actual level of occurrence, while the stories of those of us who come out of treatment with no baby don’t seem to exist.  “I wish there was something I could do” is a common and heartfelt sentiment people express to us.  There is, if you are feeling wild and wacky (and also need to silence a table full of people and/or clear a room).  The next time you hear someone telling a miracle baby story, tell ours.  Not just for us but for the 30% of patients who give years of their lives having to trek through the traumatizing and unforgiving maze of ART (assisted reproductive technology) through no fault of their own only to try to acquire this basic natural human birthright the vast majority of the world comes by so so easily, all to no avail.  This challenge is not for the meek.  You will be met with a lot of silence, denial, perhaps even some anger, and the inevitable question some genius always manages to provide, “Has she tried acupuncture?”  (I’d bet my bottom dollar on this had I not just spent it on acupuncture).  To which you can confidently answer, “Yes, she has done enough of that for TEN lifetimes.”  The earnest yet excruciatingly uninformed utterances of “But what about Kelly Preston and Halle Berry” you will also hear (as the non- infertile world is nothing if not predictable) I suggest you ignore, as the only worthy response available to that is “they likely used egg donors, ya dumbass!”