When Your Trauma and Loss Doesn’t Count Round 2 The End

Why this infertility survivor is NOT off to see the wizard…..

Continued from Round 2 Part 1

Tired of disenfranchised grief yet?  That’s ok, me too.  We’re almost there….

After the group reading for the show Long Island Medium, things continued to head south after my unexpected mini reading with Theresa as I was waiting for my friend to be interviewed with the other interviewees.

“I’m sorry for your loss,” I made eye contact and said to a man who had tragically lost his wife. And I truly meant it. Although he had to have heard my conversation with Theresa loud and clear, he, flanked by his three healthy children, looked at me, nodded, and said thank you. No “and I’m sorry for yours as well”, or “best wishes to you”, or anything. Nothing.

On the way out by the bar, I observed another woman connecting with this gentleman. Even amid this bastion of loss and pain I am still off to the side as usual, unable, through no fault of my own, to connect with anyone.

I had tried to feel for this woman during her reading, but couldn’t construe much for some reason. When she was telling her story, most of the rest of the room had tears of shock and awe rolling down their faces. Though I understand that losing her daughter was horrible and that no one should ever have to go through that, I felt strangely numb, outside of it all. The things she was describing, after all, were gifts I had fought long and hard for but never got to have. Memories. My daughter’s earrings. A blanket with my daughter’s smell. A pregnancy, bringing life into the world, a face, a name and most of all a fusion of me and my husband. Six precious years of life. Getting to be my daughter’s parent forever.

I am not saying people who suffer such horrific losses aren’t deserving of every ounce of empathy the human race can muster. Of course they are.

What I am saying is that my loss and losses like it are no less significant. And that we live in a world where this woman gets everyone’s tears and one “I’m sorry for your loss” after another while losses like mine get next to nothing is entirely unacceptable. I will never understand it.

“Stay strong. I have three more at home, it’s hard,” she proclaimed to the gentleman as she strutted out of the restaurant, her face aglow with something I couldn’t recognize.

When she says this a vision of the photographs of our twenty four beautiful embryos entrenched in the unforgiving frozen ground fills my entire body. I can see that the pictures, though lovingly encapsulated in a wooden music box that plays Edelweiss, are fading and damaged by moisture. As far as my children go, this is all I have. My soul quakes.

IMG_0352

Feeling sorry for myself is a very tough emotion for me to allow. I judge it as unproductive. But heck if no one else is going to do it……..I struggled with accepting this and the following day managed to reach out to the part of myself that feels isolated, unseen, and uncomforted. I tell her I’m sorry….I’m sorry that very few people care that she lost her children. I tell her I’m sorry most people respond to her one surgery and ten failed fertility treatments as if she went to the beach and picked her nose. And that I’m sorry most people are so clueless as to think having a baby and being a mom is the toughest job on the planet, because at least under normal circumstances it so isn’t. I tell her I’m sorry the world doesn’t even consider her loss a loss, and that I’m sorry she gets negatively judged for even having feelings about it. I tell her I’m sorry that not only the human race but also the spirit world has failed to provide her with even a shed of comfort. And I tell her I’m sorry she feels like the teacher from Charlie Brown practically every time she speaks.

Truth: I’m an infertility survivor

Fertile world translation: Wah wah waaaah wah wah

Truth: I’m grieving the loss of my children

Fertile world translation: Wah wah waaaah wah wah

People who lose a significant person in their lives usually say they feel that a piece of themselves also died along with that person. I feel the exact same way about the loss of our children. I feel very much myself, yet part of me is tucked away in the ground with them, likely to never return. All while the pieces of me that are actually making it out of this crisis continue to go, for the most part, unacknowledged.

After my mini reading I was left with the naggingly pungent feeling that they were in there. Our children were in that group of embryos, something I had suspected all along. And that they never showed up on earth, well, no one knows why and likely ever will. If they weren’t coming from those embryos, then they are not coming from anywhere. Somehow my mini reading left me more connected with this strange truth than ever.

“You know how I know our loss is horrible? You know how I know our loss is real?” I mused to my husband that evening. “Because one day this question came to me out of nowhere. I don’t know where it came from, but out of thin air it said ‘If you could have one of those embryos turn into a person, but it ended up that your child would die at age five, would you take it?’ Ya wanna know what I did? I gasped yes, yes, of course I would.”

“Really? No…..no, I wouldn’t” my husband said.

“Well, I would. In a heartbeat. No thought required. Every cell of my entire being just knows. I’d much rather have five years of one of our children than nothing at all. Plus, how many parents who lose a physical child would rather that child just hadn’t been born? I know Adam Lanza’s father expressed as much. But other than that, very few, I tell you. Very few.”

The truth of the matter is that even amid forums dealing with pain, loss, and trauma, I still feel alone and quite the misfit. Bottom line being that for as long as one has a major loss that society won’t recognize, no matter where you are or who you are with, connection with one’s fellow humans is fragile on a good day, and futile on a bad one. I don’t really hold anything against the psychiatrist or Theresa. They are ultimately, I believe, good people who do helpful things for those who suffer. Infertiles not included, unfortunately, although I know they both tried their uninformed best.

According to Wikipedia, “The medicalization of infertility has unwittingly led to a disregard for the emotional responses that couples experience, which includes distress, loss of control, stigmatization, and a disruption in the developmental trajectory of adulthood.” Yeah, I’ll say.

A survey on infertility done by Redbook in 2011 was also mentioned. 61% of respondents hid their infertility from family and friends. Nearly half didn’t tell their mothers. I can’t say I blame them, and, as I can say from experience, revealing yourself to strangers ain’t all that much better.

Like breast cancer, infertility is a disease that effects one in eight people. Can you imagine if 61% of people with breast cancer needed to hide it from their family and friends due to a lack of compassion and understanding? And if 50% couldn’t tell their own mothers due to shame and fear of rejection? It got me wondering if there are any other diseases with a similar number of recipients that people feel the need to hide with such fervor.

About a year after our final loss, I still haven’t a clue as to how to re-enter the human race. I don’t even know if it’s possible. On an individual level I’ve done pretty well, attending to all of the no brainer things like our financial recovery, taking steps to set up our home that is no longer waiting for a baby, forging new and childfree appropriate social opportunities, enjoying time with my husband, and continuing to immerse myself in my interests and passions.

But as far as functioning openly in groups of humans, my vision is comprised of one big question mark. One thing I do know for sure is that as of now, speaking up creates more ramifications than dividends. Yet I feel so compelled. I tell myself I can change my mind, that if this method isn’t working I am free to try things another way. I am pretty good at shifting gears, generally speaking. But in truth I’m not so sure. When it’s coming upon my turn to speak, my brain tells me not to. “Don’t do it, it’s too much. Go easy on yourself, make something up..….” Because in those moments I feel like quite the shredded human being, assuming I’m lucky enough to even feel like I exist at all. And then the words just tumble right out, in spite of my body being collapsed in a pile of angst while anticipating the blank stares and uncomfortable posture fidgets that might occur in the eerie absence of any “I’m sorries” or empathetic utterances. I’m afraid not to speak, yet my fear is also that I will keep speaking even if it wrecks me. Perhaps I need to find some faith in my own resilience. Or become an accountant or land surveyor – something that is technical, black and white, and lacking in mystery and emotion. But that’s just so not me.

The last fact on the aforementioned Red Book survey brought it home for me a bit. “The message of those speaking out: It’s not always easy (or possible, I might add!!) to get pregnant, and there’s no shame in that.” And that’s just it. Deep down, I know I and people like me have done nothing wrong and have just as much of a right as any other human to speak our truths, take up space, and receive a little bit of consideration in this world. I suspect this is what drives me to speak when all else fails. I can only hope that piece of me is bigger than any panic attack, biochemical imbalance, feeling of despondency, or belief that I’m invisible. So far, so good I guess.

The other thing I do know for sure is that, at least as things stand in the world now regarding losing one’s children to infertility, there are no answers to seek, no “higher power” pots of wisdom to stir.

For me now, this quote rings so true:

“Bodhi (enlightenment) is to be looked for within your own mind. You seek in vain a solution to the mystery in the outside world.” Basho, 1644-1694

I do think it’s perfectly reasonable however, to seek a bit of empathy from the outside world. I did lose my children, after all. As far as doling out empathy to those of us who lose our children to infertility, I appreciate the few good apples that are out there. I know exactly who you are, what you did, and what you said that gave me a desperately needed break, even if I wasn’t able to show appreciation at the time. As far as how the rest of the world acknowledges early child losses, it appears many have much of their own enlightenment to seek.

Like I said, I have no clue how to re-enter life. But I am able to envision what will happen should I ever meet the ultimate Wizard of Oz.

Sarah: So, whadaya make of me being forced to spend this past lifetime as an infertility survivor?

God: What’s that?

Sarah: Uh, really you should kinda have something on that. It’s when you can’t have children due to a malfunction of nature that is beyond your control. It’s when you try and try and try to have children, but don’t get to. Because you get to the point in your journey where continuing would be potentially far more self destructive than a life without children.

God: (Pondering the best he can) I dunno….maybe it just wasn’t meant to be.

Yes, I won’t be shocked if this disenfranchised grief thing really goes on forever. Or that when I get to heaven, no matter how groggy my soul may be, I’ll likely have some hell to raise there too.

BRAVADO/RUSH/If we burn our wings/Flying too close to the sun/If the moment of glory/Is over before it’s begun/If the dream is won/Though everything is lost/We will pay the price/But we will not count the cost//When the dust has cleared/And victory denied/A summit too lofty/River a little too wide/If we keep our pride/Though paradise is lost/We will pay the price/But we will not count the cost/We will pay the price/But we will not count the cost//And if the music stops/There’s only the sound of the rain/All the hope and glory/All the sacrifice in vain/And if love remains/Though everything is lost/We will pay the price/But we will not count the cost/We will pay the price/But we will not count the cost

It was on this day one year ago we learned that our children would never be coming home. This is for them.

♥♥♥♥

8 thoughts on “When Your Trauma and Loss Doesn’t Count Round 2 The End

  1. Dearest Sarah,
    I am so sorry for your losses. I’ve read from beginning to end your last several posts. I not only see you and validate you, I FEEL you. You have a remarkably expressive talent. Your writing made me gasp several times as I put myself back in your shoes and relived the tortured, visceral emotional aftermath of my own angst, anger and frustration. I know how painful it is to distill and confront the complexities of the infertility experience. Your rawness, your honesty, your willingness to speak your truths is a beautiful thing. I know how important it is to find a release, to put into words the swirling chaos and suffering and to be HEARD – and equally important to be UNDERSTOOD.

    I could point you to a few blog posts I wrote from a few years ago expressing similar shock and disbelief at the complete and utter tone deafness and ignorance around me, but the larger message I want to share is this…as much as we want it to be otherwise, society is still woefully lacking in the construct, the framework necessary to recognize, process or acknowledge the trauma and suffering we have experienced — how the totality shattered us and what we need in the way of validation and compassion. We are the first generation of women to fully embody this painful reality.

    With a few more years under my belt living amid the casual ignorance you describe, I take heart in knowing that with each one of us willing to step forward and put our truths out there we are, slowly, glacially slowly, beginning to make a difference. Where I once used to get blank looks, platitudes and stony silence when I attempted to convey my infertility survival, I now find the occasional light of understanding. With nearly eight years of writing and cathartic release, my emotions are not as simmering as they once were. We all heal at our own pace so I would never be so bold as to be prescriptive, but perhaps you’ll find some comfort in knowing that as I get further along in processing and honoring the painful realities I’ve experienced, I’ve found more room and patience for those who have been spared what we’ve experienced.

    As arrogant as it may sound, I see those who are blissfully untouched much in the same way that most adults see coddled children. With fewer years on the planet and — notably in Western society — in the sheltered comfort of naiveté, many children are unseasoned, untested and uninitiated in the sometimes brutal realities of life. I view uninitiated adults through the same lens. I expect less of them and, naiveté, I am disappointed less as a result.

    I remember watching the movie Amadeus and seeing in Salieri (a lesser composer than Mozart) who following a lifetime of anger at his inability to give birth to soaring, angelic music as effortlessly as Mozart confronts his fate. In his final years and fighting madness the character finds it in himself to forgive all those around him who are incapable of understanding his tortured existence. It was in realizing that I can’t expect others to fully grasp my pain that I found the space to begin healing. Now when I meet the rare bird who does want to learn more about what goes into surviving infertility I experience a new-found emotion: gratitude and wonder.

    With deep admiration for your fighting spirit,
    xo, Pamela

    • Pamela – Your comment flooded me with tears of relief, as I simultaneously laughed at your classic Pamela phrases such as “glacially slowly” and “tone deafness”. My tears were over what I’m not exactly sure but I assume it’s the novel experience of being heard and truly felt that is so potent. I have to admit to feeling just a slight twinge of guilt (not a particular demon of mine) for contributing to your momentary reliving of this torture as I think we’d all agree, once is already more than enough!

      Your view of “those who are blissfully untouched” especially spoke to me. I think it will help as I eventually move to a more empowered place. Where I’m at now is very real and valid, and I dare say even important, but also limited in its capacity for any sort of long term healing.

      It’s good to know that there is some sort of equanimity waiting on the other side as I’m going through a very angry and abandoned type phase in grieving and raging at my loss of any safe place in this world. I know your wisdom will be useful as I reflect on the past few weeks and make yet another humble attempt to dust myself off and keep on keepin’ on. Thanks for reading.

  2. Infertility is such a unique grief, and I think you’ve captured that so well. I have felt similarly, catching myself harboring jealous thoughts towards others who had children but then lost them – at least they had them for a short time, at least they were pregnant, at least they had something that others recognize as a real loss. I would also choose to have a child for a short time than to never have one at all. It’s hard to explain, but it’s how I feel.

    It’s an interesting point that you raise about the medicalization of infertility. I’ve run into problems with this even with my own doctors, and it is so frustrating. They don’t always do a good job helping us through the emotional aspect of the whole process, and it’s absolutely not the same as having a broken arm or something. No amount of pills and injections and interventions can fix a broken heart or shattered dreams.

    I generally don’t open up about my situation to others simply because it allows me to avoid the pain that comes when they inevitably don’t understand. It’s easier for me, but sometimes I wonder if it’s just as damaging to keep it in. I wish there wasn’t such a stigma related to infertility, and I don’t know if there is a best way to handle this… I’m rambling now, and I don’t know if any of these words are helpful, but I just wanted to say that we may be the odd ones out in this fertile world, but you are not alone. Hugs.

    • I really appreciate you sharing your thoughts, especially on the all too often taboo and under-shared topic of raw responses to the losses of others that are at times hard to connect with. Along the way I came to terms with the fact that the frustrations and feelings of isolation that sometimes leap out of me in response to the tragic losses of others do not make me a bad person, they just make me human.

      The quote on the medicalization of infertilty came from the IF section in Wikipedia, which is actually on point for the most part. It seems we have a long way to go before the medical profession owns up to the emotional and life shattering ramifications of repeated failed treatments and puts some kind of functional support system in place.

      And yes, for the infertile, to speak or not to speak, THAT is the question!! For me for now, my unexplained drive to speak is beyond unreconciled with the pain brought on by bearing witness to the world’s judgment and indifference. Sharing our experiences, even and maybe especially when we chose different ways of dealing, is I think important.

      And knowing I’m not alone helps too, thanks:-)

  3. I of course can’t improve on Pamela’s lovely response, and I agree with everything she said.

    When you mentioned that you’d rather have a child, experience all that that involves, and know you would then lose the child than not at all it made me think. I had a cousin who lost a child at birth. I understood their grief, but I was also a little envious, because they can talk about their first son (they still do) and it is completely accepted by society; their grief is not disenfranchised. My brother-in-law tragically lost his son when he was in his early 20s. He and my sister, both in second relationships, had agreed not to have children (it was his choice). But after his son died, he said to my sister that he was glad he had had those 20 or so years, and that he realised that by asking her not to have children, he was denying her a most wonderful experience. And so they had my niece. She unfortunately has a long-term but terminal condition, but we all take delight in her presence, while we have her. That’s something that has been denied to you and me and our friends here.

    I remember coming to one year after learning I would never have children. (That anniversary is my birthday, so it’s hard to forget! Even though I’m now 11 years on.) One year afterwards, I was still very fragile. I was feeling my way in the new world, with a new future, but the grief was still there. It takes time to come to terms – it’s such a gradual process, and of course we all have the occasional hiccup that we feel puts us back. But it takes much longer than we expect, I think. Celebrate the gains you’ve made (I think you’re doing wonderfully), don’t beat yourself up for still feeling adrift, and know that it really does get better.

    • Mali – Thanks for sharing the perspectives on people who lost physical children. The intent as we know is of course not to deny anyone their well deserved pain, however, it is not untrue that we, in a way, lost something they didn’t. The objective not being to find one loss greater or lesser than the other, but to point out that the few times I’ve stated losses like mine get to be on the same map have not been met with much, shall we say, openness. So thank you for the validation.

      The anniversary of your final loss is also your birthday? Good friggen grief. I thought I had heard it all. Talk about the ultimate insult being added to injury……

      In the past few days I’ve actually had the chance to at least take a slight step back and appreciate the onslaught of grief and the challenges I’ve faced head on over the past few months. I don’t have faith in much these days, but I am confident that boldly riding waves of grief and undoing is just as worthy as catching the waves of healing and progress.

  4. Oh this one was heartbreaking, but I loved it. In your imagined conversation with God about infertility, I was sort of hoping/expecting him to offer this gem to you : “So, uh, have you looked into adopting?” I have absolutely no idea why we were both handed these insanely traumatic and awful life paths, Sarah, but I really love you and admire you for speaking out about what this type of loss is and ISNT – because I have to believe that someone out there is hearing you, and that it matters. I know Im listening,, and your pain and loss matter greatly.

    • I’m sure god will ask that question…..thanks for reminding me to be ready. I’m about to write a post on why we are not adopting so I’ll just be like “read my blog, genius….”

      I love you too and am lucky to have a friend like you who listens and takes the hell of infertility seriously.

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