When Your Trauma and Loss Doesn’t Count, Round 2 Part 1

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

 

What? You thought I was done?

Alas. I’m an obsessive person who had a long disenfranchised grief – infused week and half. These days in my world that seems to equal a lot of words.

But buck up little campers, there are only a few days of my random escapade through disenfranchised grief central left to unfold (until I leave the house again anyway)…….

***Fellow children of the eighties, name the movie containing the illustrious quote “Buck up, little camper.”***

And now for another good thing that came out of the eighties. As I fumbled through my recent experiences, I found myself thinking, “I’m so glad this is like, a THING. What if there was even nothing to look up? I’m really grateful someone put a name to this demon.” Disenfranchised grief was first identified by Dr. Kenneth Doka in 1989, thank goodness, and he has been writing about it ever since. “I define disenfranchised grief as grief that results when a person experiences a significant loss and the resultant grief is not openly acknowledged, socially validated, or publicly mourned. In short, although the individual is experiencing a grief reaction, there is no social recognition that person has a right to grieve or a claim for social sympathy or support” (PsycINFO Database record © 2014 APA, all rights reserved). I’m looking forward to reading his second anthology on the subject, “Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice”.

 

“That’s so exciting!!”

That night, about a week after I had returned home from the trauma workshop, I was off to a taping of the TV show Long Island Medium that my friend had invited me to, and my chiropractor, one of the few people I don’t mind talking to these days, was into it.

“You have to let me know what happens!”

“Yeah, yeah, I will. But I’ve had some experiences with mediums that turned painful. I don’t trust much as of late. Wouldn’t be surprised if I end up having a “you’ll shoot your eye out” moment.

Ahhh yes, Santa Clause. The iconic Wizard of Oz of many of our childhoods. I figure most are familiar with the movie “A Christmas Story”. The main character Ralphie’s relationship with Santa is one I can loosely relate to as an infertile. You desperately search for someone who knows, understands, and sees things the way you do. Surely Santa will instantly vibe with this boy’s deep seeded yearning and passion for this gun he wants so badly, and moreover will join him in shunning the ignorant adult heathens who can only see the stuffy “you’ll shoot your eye out” aspect of it. In the end of course, his trek to Santa only unveils the cold truth that Santa is just as ordinary as everyone else as Santa tells the main character “you’ll shoot your eye out, kid”. Ralphie gets kicked down the slide, his deepest heart’s desire still invalidated.

th

I felt uneasy as I drove to the reading. Since the loss of our children, me and the spirit world have been on shaky ground. My discord is the result of four readings with two different psychics who were able to accurately describe EVERYTHING ELSE in my life, from my husband to business stuff, and who insisted, through my grandmothers, that I would get pregnant and bear children. Even though I begged, I mean on hands and knees and in tears begged, before one reading for them to just please tell me if this wasn’t going to work.

Now, I totally understand this spirit world thing is not an exact science, and I respect the doubters and the cynics. But when you’re dealing with infertility you really have nothing else to go on. The amount of effort you put in to getting pregnant, being a good worthy deserving person, and how badly you want it are all of course entirely independent of one’s actual outcome. Suffice it to say that though I believe in a spirit world, due to infertility I am now also grossly underwhelmed by it. And kind off pissed off at my dead grandmothers to boot.

I arrived at the restaurant and got settled in an intimate banquet room at a table for ten. There were to be about forty people at the reading. Aside from being next to my friend, I immediately noticed a lack of desire to talk to people. This was, after all, the third group of strangers in ten days that I might have to reveal myself to, and I was at this point rather tired. I engaged in my usual behavior of watching people’s conversations like a hawk, keeping track of everyone who had kids, as my mind did a quick sweep of the situation I was in the day before.

The day before, I was again sitting in a circle of people – for crying out loud what’s with the damn circles of people lately??? I was in the first day-long yoga class in a series of four that is a prerequisite for a teacher training I might do later this year. My turn was going to be a little more than halfway around the circle so I had plenty of time to “prep” myself. “Cool your heels, S. Just keep it simple. You’re here to expand your knowledge, deepen your practice, your favorite nature place is your bluff and deserted beach on the North Fork, and just leave the animal/species you care about out of it. You’ve had to work so hard to save yourself lately YOU could very well be considered an endangered species, but heck they don’t need to know that today so don’t worry about it.” My planned approach at the time seemed to make good common sense.

The only trigger leading up to me was that one of the people in the class is a midwife. Not great, but pretty manageable so far. And then the person right before me (who turned out to be totally nice and sweet but we IFers know in these types of situations that doesn’t initially matter much)…….described how she has a five year old, three year old, and a one year old, and that she can vouch for the midwife’s skills as the midwife was so helpful to her when she encountered bladder issues from the delivery of her third. Which of course drew forth the usual maternal empathetic moans.

Oh my sweet lord. You cannot be serious. At that moment I knew I had to say something, although a part of me was begging myself not to, and yet another was sure I couldn’t.

Thinking quickly on my feet while simultaneously recovering from the punch to my gut, I grabbed the talking stick we were passing around and proceeded. When I got to my favorite nature spot, I described it tenderly and also managed to throw in that it’s an especially important place because my husband and I are infertility survivors, and that places without people like this serene beach are ideal as we know we’ll not have to deal with people asking us if we have kids and generally speaking about something which for us is very painful. This of course did not illicit not even one sound or gesture of empathy from the group whatsoever. Nothing. Although the talking stick was zooming around and jingling neurotically, as I generally talk with my hands and even more so when I’m tense.

th

And when it came to endangered species that we care about, there had been a few panda mentions. Someone else brought up the good ole manatee, and I thought of forwarding her my nail salon post to let her know the continuation of that species has actually brought some of us nothing but unrivaled aggravation. And yours truly? Well, I should have mentioned that I’m grateful for people who show compassion to those of us who lost our children to infertility. Talk about an endangered species. I instead mentioned that I was grateful for the winery on the bluff atop of our beach and that I’m grateful for all wineries and hope they never go extinct. What can I say? I’m infertile, I have my priorities.

manatee, shmanatee

manatee, shmanatee

I passed the now inadvertently mauled talking stick to the next person, however my relief over having spoken was short lived as an expectant father (who wanted the midwife’s contact information) announced himself a few people later. A very good and nice group of people, yes. But not without triggers lurking. And I’ve digressed.

Back to the present at the Long Island Medium table and seriously reconsidering my decision to venture out into the world ever again, the reading had begun. My friend who lost her husband 3.5 years ago got read right away, which was awesome. Right after her reading Theresa looked at me a few times and asked if my friend had kids and then who had the miscarriage. I thought this might have been meant for me, but it ended up with a woman who had also lost a young physical daughter. As the reading went on, I became more and more agitated.

“Come on, just tell her to ask who lost all of their children!” I demanded of the spirits. Though completely irrational, I was overcome with alienation as people mentioned memento after memento they brought with them. When your loss is people who never got to live at all, you have nothing. And as Theresa referred to symbol after symbol for other people, I became enraged. “Do you see groups of butterflies? Know that’s your daughter” as Mom’s face lit up and I wondered “Do children who never got to be born send groups of butterflies?”

There seemed to be no rationalization that could stop me. “Would you rather your husband be dead? THEN you’d have mementos and symbols, asshat” I pointed out to myself, bewildered by my own rage. But I could not stop tearing through frustration after frustration. “A music box under a dogwood tree….white flowers…..how hard is that??”, “24. Come on, 24. SHOULD BE EASY. If I could make all of those god damned embryos, than someone can CARE!!”, and “Oh, and how about YOU’RE SORRY you told me we’d be having babies grandma??” I was having a full-fledged internal tantrum, taunting the spirits to DARE to try and make this right. But I never got read, which was in a way not shocking. I was so worked up I doubt I was even readable.

Exhausted, I opted to get my picture taken with Theresa afterwards. And like Ralphie in a Christmas Story, I was so filled to the brim with emotions that when it was my turn, I couldn’t speak.

My childish and human desire to be seen and validated arm wrestled with my jaded adult knowledge that chances were good more human contact would only make me feel LESS seen and validated. And somehow I found myself back in line to speak with her, in spite of my rugged internal conflict.

“Can I ask you a question?” I urgently asked her. I was the last person. And this was my “white knuckle my way up the slide and give it one last shot” Christmas Story moment.

“Sure,” she said eagerly. She’s very approachable and seems to want to help, even though I can see her job is exhausting.

“I’m an infertility survivor and….”

“What’s that?”

I explained that we tried extensively to have children and couldn’t and then somehow spit out my question, which was basically how does what she does relate, or not, to my loss, since my loss is about people who never got to be born as opposed to everyone else’s loss here which is someone who actually got to exist on earth and then crossed back over. She didn’t understand my question so I had to try and rephrase it, but I liked her persistence. I’m just so tired of trying to communicate with people about something for which they have no reference (infertility), which is also something that effects one in eight people so that fact they don’t have a reference is totally insane, that in this moment I felt I may finally unravel.

“Huh, that’s interesting…..I never thought of that,” she said, and then started to read me which she really didn’t have to do after such a chaos filled evening.

“Do you have a grandmother that’s passed?”

“Yes”, I said. I still felt jumpy and there were people interrupting us and I could tell this was slightly different territory for her. Battered and bruised beyond recognition, I knew I was still in no shape to really be read. So it wasn’t the greatest situation. Plus, I can only imagine what my grandma was feeding her. “Theresa, she’s a mess. Be careful, she seems gentile enough but she’s raw and she bites……”

“They’re telling me that, it’s like, you could have had a baby, but it just didn’t happen. They’re making me feel like you had everything, everything was there but it didn’t work.” Sounds vague on a level, but that was our case in the end in a nut shell.

I had said after things ended last year that I would always be haunted by the feeling that this could have and should have worked.

She looked uncomfortable as she confirmed that it was definitely over for us in the kid department and told me that she sees me doing other things. I should have asked her if torturing myself by pointlessly revealing myself to strangers in circles happened to be one of them……

Perhaps at a loss, she emphatically shrugged her shoulders and said “Maybe it just wasn’t meant to be.” My internal body recoiled as if it had been slapped. And there it was. My adult infertile “you’ll shoot your eye out” moment. Unlike the all-encompassing shock of a child, I was already privy to the reality of things. But that doesn’t mean that moment wasn’t disappointing and hurtful. The solid proof that the wonderful medium who connects with the supposedly magical spirit world is just another clueless fertile was depressing. And worse, so are the ass hole spirits who could have participated in the delivery of that phrase. Knowing that the spirit world is not even on board was leveling, quite frankly. Part of me knows better and takes it with a grain of salt, yet, I spent the next few days feeling as though my soul had been run over by a steam roller.

th

“Your grandmother did a great job coming through for you today,” she said as I thanked her. I wish that provided me with some comfort, but it just doesn’t. My children don’t get to exist, and there is nothing, reading or otherwise, that will dull the throbbing ache of that mystery.

“I’m sorry for your losses” had filled the air many times when I was standing in line, but in response to my situation there was, as usual, nothing. I know she tried to do right by me, but the absence of condolences for my loss still stung.

Now I will say, Theresa herself is humble and very clear about what she does (and doesn’t) do. Overall she came across as genuine, caring, and as the last person who would consider herself “glorified”. She seems passionate about what she does and the whole taping of the show is very low key. No hoopla, as it really is all about the readings. Her energy is fascinating, her eyes captivating. Her presence was intriguingly solid, in spite of her gregarious personality. It was like standing next to the energy of ten people minus the chaos. And I just couldn’t take my eyes off of hers. A stunning blue revealing an almost but not quite shade of periwinkle, they would sometimes stare straight ahead as her inner eye turned elsewhere. And other times they would become so bright it was as if they were shooting lasers.

My gripe is just as much with the spirit world as anything. She is of course allowed to be a flawed human like the rest of us. But you’d think after how many decades of readings, she would have run into this issue, or that a spirit or two could have tipped her off. “Hey this infertility and not being able to have kids thing…..it totally sucks. Yep, it’s a big problem.” Or “by the way when you lose your kids because you can’t have them in the first place, that’s also known as LOSING YOUR KIDS.”

Can you imagine if she gave that kind of response to someone who lost a physical child?? Let’s try it to someone who lost a daughter at age four: “I guess going to kindergarten just wasn’t meant to be for your daughter, Oh well….” Shoulder shrug. Or with someone whose son died in a car accident while away at college: “I guess your son just wasn’t meant to graduate college, fall in love, find a career and start a family of his own…….aw shucks!!” The young people who were present didn’t get told that “maybe they just weren’t meant to have a mother” and the people who were present who lost spouses weren’t told “maybe they just weren’t meant to have a husband.”

But yet telling the infertile that “maybe she just wasn’t meant to have children” is still somehow socially acceptable. And I can tell you that being on the receiving end of it feels like crap.

The thing is, and Theresa said it herself, mediums can only interpret things through their version of reality. And therein lies the problem with mediums for infertiles, I believe. If the medium has children, or has never dealt with infertility, they do not have the context with which to interpret our situations. They themselves are not familiar with reproductive science, or even the reality that some people don’t get to have children, and therefore are unable to relay messages properly. For someone like me their lead in question is likely “do you have kids?” or “who had the miscarriage?” which is way off base from my actual experience. In addition, I don’t think even the spirits know. Having flown up as close to this as a human in a body possibly can, I come away only with the knowledge that human reproduction is horrifically random. It’s like I said to my husband a few months after we lost our children: “Oh my God. What if the meaning of it all is that there IS no meaning????”

Things continued to head south after my mini reading as I was waiting for my friend to be interviewed with the other interviewees.

TO BE CONTINUED……..

16 thoughts on “When Your Trauma and Loss Doesn’t Count, Round 2 Part 1

  1. I had never heard of Teresa Caputo until a year or two ago, when dh’s cousin posted on Facebook, “At the theatre, waiting for Teresa Caputo.” I thought TC was a friend of hers she was meeting up with, lol. I was soon set straight. 😉 I have since seen a couple of her shows. I am not really sure that I believe in mediums, but I have had a few unexplainable things happen to me, so I have to leave the door cracked open just a bit on that subject. While there are a LOT of charlatans out there, I do believe that some people have a gift and sense things that the rest of us don’t. Whether it’s psychic ability or they’re just more sensitive/perceptive than some of us, I don’t know.

    Anyway — I’m sorry your encounter with her was disappointing. When you mentioned that she says mediums can only work within their own version of reality, I thought, “There you go!” She’s a mom, and what’s more, she’s an Italian mom. Being married to an Italian, I can tell you that children & babies & pregnancy have a huge place in the culture. It’s something that people just take for granted (although don’t most people, Italian or not??). I am sure that infertility and NOT having kids even though you wanted them are simply not topics on her personal radar. Dh & I are the only adult couple on both sides of his family who do not have children. Some of them just have one — and rumour has it that a couple of his cousins had infertility treatments (and possibly a few miscarriages) to get some of their children — but these things are not discussed openly (which is sad — we could have been such a support to each other). They all know what happened to us, of course — and it was quite surprised by who called or sent a card after our daughter was stillborn, and who we never heard from.

    • I’ve had too many mediums tell me true things that there is just no other way they could have known, so I think there’s something to it. I guess, at least for infertiles, the question is what?? I think I’ve reached the end of my line with that forum.

      Your extended family dynamics are interesting – and likely normal, would you say? I don’t think people should feel obligated to talk about IF but I still don’t really understand why it is such a taboo experience to disclose.

  2. I’m really sorry this was so traumatic, on top of your recent experiences in circles of women. And I completely agree with your comments on the statement, “it just wasn’t meant to be.” That’s such a platitude, usually from someone who wants to get away from an uncomfortable situation they don’t want to acknowledge. And so blatantly inappropriate, as you pointed out. Just makes me want to scream. Though for me, I find great comfort in the idea that there is no meaning, because it takes away the guilt, the blame, the feeling that we must have deserved this pain somehow. “The answer is there is no answer” is my favourite quote. (Gertrude Stein)

    • This medium experience really brought out the side of me that is not yet reconciled with there not being an answer. I intellectually get that there is no answer, and enjoy the freedom that comes from that, and that even if there is an answer it wouldn’t be good enough, and I went into the experience trying to take it for what it is and not expect too much. But boy that’s sure not what came up from deep inside of me! Holy emotions.

  3. This really hit me. There is no meaning. Exactly. I really don’t even have words for this post. I just loved it. You make so many good points and observations. I so wish society was different when it comes to infertility. I’m sorry you got the ‘it wasn’t meant to be’. That’s one of the worst things someone can say, in my opinion.

    • Thank you. I’m totally with you as far as wishing society would be different when it comes to infertility. I’d work harder at owning my lack of acceptance of other people’s behavior if I felt they had a good reason. But it seems to me society no longer has an excuse for overlooking early child losses. There just aren’t any.

      And yes, how is the notion that I wasn’t meant to have children supposed to breed contentment of any sort?? I’m sure people have not thought that one through. It’s so often said in a breezy, matter of fact way like it’s supposed to make me feel better.

  4. Dear Sarah, I love your posts – although it is difficult for me to understand everything correct. Your english is very challenging for me 🙂 But I try my best. I would like to tell you so much – but same problem, my English is to bad to explain my thoughts on a level I would like to…..Anyway, here we go.
    The problem with our kind of trauma and loss is, that you can´t compare it 1:1 with the loss and traumata that are first and foremost known. So it is nearly impossible to find supportive experts. And for “normal people” it seems even more difficult to empathise. We all know that. Been there done that.
    Beside the more concrete loss of a miscarried child, some of us have gone through (mee too), we all also struggle with the loss of our unfulfilled dreams and future. We grief about something that should have been ….. but never will be……never had been … but also ….at the same moment…. sth that HAS been real in our mind, heart, dreams, thoughts, feelings……(omg this f*ckin English 😉 I hope anybody will understand that )
    These dreams are concrete and they aren´t in the same time. Absolutely ambivalent and confusing situation.
    And so there is only one concept of trauma and loss that might be able to explain our kind of grief and loss in my opinion (but most experts don´t know). You can compare it mostly with that kind of loss: People who have “lost” a beloved person who is still alive – for example because of coma, of alzheimer´s desease or sth like that – they are physically present but you can´t reach them psychologically any longer.
    Or missing persons/children – disappeared from one day to another – and nobody knows where they are, if they are still alive, what happened to them ?

    Have you ever heard of Pauline Boss ambiguous loss theory ? She developed a therapy concept for that kind of loss that is becoming traumatizing because there is no real ending, no solution of an ambivalent situation. Her way out is: learning to live WITH this unsolved ambivalent circumstances instead of fighting against the trauma. She says: “With ambiguous loss there is no closure. The challenge is to learn how to live with the ambiguity.”

    And you can also find some kind of help and feel understood (in a more general way) by reading Viktor Frankl “Nevertheless, Say “Yes” to Life”. He was the founder of logotherapy, which is a form of existential analysis, the “Third Viennese School of Psychotherapy”.

    Last year I wrote one blogpost about this: “Ja … ! (Yes ! ….)” http://www.manchmal-ist-es-nie.blogspot.de/2014/05/ja.html
    Maybe the google translator you can find on my blog is able to produce a readable version if you are interested in.

    xoxo from the german cnbc-side of life 🙂
    Isa

    P.S. sorry for my messy English 🙂

    • Hi Isa! I found it, it was in the spam folder for some reason. First of all, your English is MUCH better than my German:-)

      Thanks for all of your interesting thoughts. It’s true, there really is nothing like our losses, I always seem to find myself saying that it’s not the same as losing a physical child, but every bit as significant. And I don’t find people to be too accepting of this, no surprise there, right?

      Your description of what I’ll call “non physical” losses – the loss of dreams, future, etc. made complete sense. Another angle of this I struggle with in my life is that to me, the four years of my life I spent trying to conceive made me a parent of sorts, even though I didn’t end up getting to be one in the physical world. I also feel the four years of my life I gave over to trying to conceive as a loss in and of itself which people also don’t understand as they think one’s life goes on as normal when one is trying to conceive for so long.

      It’s funny you should mention ambiguous loss – it came up when I was looking up disenfranchised grief stuff and I was thinking I should look into it, so now I guess I will:-) Logotherapy is totally new to me though…hmmm…possibly something good to chew on…….I’ll check out your post.

      Thanks again for all of your thoughts and ideas!

  5. I don’t like people. Are a little compassion and empathy too much to ask for? I think that you are incredibly brave to share as openly as you do. It’s like a catch 22, if you never share people will ever know and you won’t get any empathy but if you do share 99% of the time you’re going to get a dismissive reaction. It sucks. Thank goodness for wine. I also hope that wineries never go extinct….

    • No, I don’t think a little compassion and empathy are too much to ask for, that’s one things that makes it so frustrating for me.

      And as far as a catch 22, that’s exactly it!! I couldn’t have said it better. I guess I figure if I have to chose between two poisons, I’m going to chose the one that has a shot at rocking the boat and making people think.

  6. I read her book a long time ago. I think I even joked/vented with you over wine here and there about how totally enraged I was reading it. I literally thought about burning it in the fire pit as catharsis, and it just made me mad at my MIL for giving it to me. Anyhow, her whole philosophy is ‘meant to be,’ so I’m not surprised this reading was upsetting. She goes on ad nauseam about how the soul picks a body and a family/situation that will present the challenges the soul needs to learn the lessons it chooses to learn in that go-around in life. She does talk a lot about adoption in her book and equates adoptive parents with biological parents as ‘expecting’ when a child is on the way through whatever channels because she thinks in terms of ‘soul families’ (souls that are meant to be in a family together regardless of how they come into the world) so maybe that’s why she can’t process embryos that never came into the world as children the way you do because of her focus on souls…which gets into territory about life and conception that’s just too dicey for me to make any declarative statements. She’s not psychologically sophisticated enough to give you the acknowledgment you’re looking for. She thrives in an industry based in magical thinking.

    I think you know that I’m of the Don Draper school of thought: “There is no system; the universe is indifferent.” I just can’t believe that all the suffering in the world – mine, others’ – is predetermined. It just makes me feel like a caged animal to think that all my suffering was planned…by my own traitorous soul, no less. I think life just gives us shit and we have to figure out how to work through and around it to be happy and fulfilled best we can. The claims of any medium, including TC, hinge on deterministic ideas like fate, which is hard to buy when you’ve suffered nonsensical loss.

    Sorry if you don’t want to hear from me, but I still read.

    • Yeah, I definitely saw that one coming. Part of my motivation in speaking to her was to bring to make her aware of the fact that someone with my kind of loss felt like a fish out of water in that environment.

      Thanks for mentioning the content of her book as that definitely adds a layer to the big picture. Kind of makes me think that for someone who can communicate with the dead (which at least in my assessment is true on a level) to then claim they know how this whole life and death thing works is quite a leap. I guess I’m lucky she didn’t bring up adoption with me then, since I get enough of that these days as it is and, in that moment, I was already hanging by a thread…….

      It was interesting to me that, although her “maybe it just wasn’t meant to be” response was no surprise, it is still so slaying to have to hear. Especially in the aftermath of the jarring and unexpected emotions I endured being in a room with people who had losses that, for the most part, society considers legitimate. And in light of the fact that, regardless of what she believes in terms of meant to be, she was considerably less blatant in her display of this concept with other people’s losses.

      You’re probably right in that her perspective could prohibit her from appreciating my situation, although I felt she was sincere in her efforts. In the end my experience illustrates that this forum is just one more place many can find a shred of comfort, connection and acknowledgement but those who lost their children to infertility can’t.

  7. I hate the “it wasn’t meant to be” type comments and I’m sorry you had to go through that. It is amazing with infertility being as prevalent as it is that there is not a greater understanding. I also find it insane that she asked “What’s that?” when you said you were an infertility survivor…. Really?? Man.

    Thanks for all the definitions and great information on disenfranchised grief at the top. I wrote some of that down and took to therapy with me as it really explains how I felt post-cancer/hysterectomy.

    • I know, the many blank looks I’ve gotten in response to the term infertility survivor have made me wonder if I should word things in a way that is more clear to people. But then again, maybe the blank looks I get is a good reason to keep using the term? Oh, the fun we have to navigate…..

      So glad my disenfranchised grief rant provided you with something useful – I try to slide some function in there in the middle of all the angst:-)

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