May 10, 2012

grief comes in zig-zags

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

They say this is the order of the 5 stages of grief. My grief is non-linear. There is not really chronology or order to it. I skate around in my grief in crazy zig-zags and dizzying loops. Mostly, I have done a lot of denying. More hours than not my pregnancy with Aminadav and Naava and everything that immediately followed it feels like a strange dream. In fact, most of the time they feel like a strange dream; maybe some souls I knew in a past life. So familiar but so ephemeral. Most of the time on some deeper fundamental level I do not believe that any of it really happened; it feels like a very sad story someone else told me about myself.

These hours are inevitably followed by the harder moments when I cannot fathom how they are not still here with me, either inside of me or inside an incubator that is much safer than inside of me. But mostly, I have done a lot of denying, and then I can manage with reality in little bits and in a measured dose.

They say bargaining is Stage 3, but I did a lot of bargaining very early on. I am an expert bargainer. I bargained all throughout my fertility treatments and through my first and second pregnancies. Sometimes I bargained with G-d, sometimes with myself, and even more often, with no one or nothing in particular. When Aminadav and Naava died, I was already a pro. The bargaining came immediately and naturally.

I have done a lot of what Joan Didion would refer to as magical thinking in her The Year of Magical Thinking. The magical thinking has all been part of my bargaining hobby and oftentimes has been quite elaborate to the point that one might think it takes a great deal of imagination. I find the magical thinking exhausting but not so much a creative pursuit. As I said, I am very good at it. I am trying to cut myself off from it.

My first few weeks back at work, I spent more of my day surreptitiously conducting PubMed searches on every possible word and phrase variation of "pPROM" "placental abruption" "twins" and "subchorionic hemorrhage" than I actually spent performing lab work. I remained steadfastly convinced (and honestly, still often do) that if I could find some way to retrospectively fix or solve what happened, especially to Naava, whose amniotic sac was still intact and who was born alive, that I could actually change the outcome.

Oftentimes, I have even been convinced that just finding clinical studies with better overall outcomes than the gloomy statistics reported by my doctors would change the outcome. "See! But they live!" I would exclaim triumphantly, well after the fact of their deaths. I recognize that this is spectacularly delusional, but I still can't help it.

Stage 2, anger, reared her head later on than denial, bargaining, or depression. I was really angry with myself and I still am. It is easy for other people to tell me to be gentle with myself, to be kind, but much more difficult to internalize it in a way that is genuine, because I really do honestly hate myself for what happened. The self-loathing is a narcissistic pursuit; I was unable to indulge in it until I could go longer than a minute without thinking of my poor babies and their horrible fate & bring the focus back to myself.

Even more recently, my anger has developed a new prong, and it is a sharp one. Now I am angry at other people. At the beginning of the week, we saw a doctor who specializes in miscarriage and pregnancy loss. I still haven't done any loss-related tests; specifically, I was hoping to do some sort of clotting and autoimmune panel, especially to rule out thrombophilias since they are often associated with placental issues. This doctor became the new subject of my wrath when he sent me on my way with no new ideas or additional information beyond a lab slip to test for various infections. I will never get back the 120 seconds of my life I spent peeing in a cup for chlamydia and I am very angry.

I guess the only flavor of the 5 stages I have yet to experience is acceptance. Maybe I have even experienced a little of that too, in small doses during those rare moments when I can imagine my life having a happier focus one day. Not that there won't always be an empty space where Aminadav and Naava were but that I will learn how to be happy and appreciative without ever being whole; that I will learn how to live with this empty space, not in spite of it or around it but simply with it. For now that seems like a pretty tall order. One day.

19 comments:

  1. Ah yes, the stages of grief. The way they are presented always seems as if they need to be completed in a linear fashion, yet I find that I always do the first 4 out of order, sometimes in combination. And it's very rare that I ever reach stage 5.

    I'm sorry that your doctor is giving you the run around. I'd be very pissed too. I also understand where you're coming from with searching PubMed, looking for answers. What's happened is incredibly painful and unfair. I can't think of a single human being who wouldn't want to find a way to fix this, if not simply prevent it from happening again. And yet, too often, we are made to feel like all of it was a bad roll of the dice or that there really isn't anything. All of it is enough to drive a person to insanity.

    I continue to think of you and send you love as you journey through this process. Love and light.

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    1. Cristy, exactly, the take-home message to all of my problems is always that it is a bad roll of the dice - my infertility, too. Even my infertility is unexplained. I feel like that pretty much everything bad that happens to my body is 'unexplained' or a random bad event. I know sometimes the quest for answers can lead us to unreasonable or illogical places but at the same time, I know that my quest for answers or at least something, even a sugar pill, to prevent this from happening again is something I have much more invested in than any doctors because of lightning strikes again, I am the one who has to live with that. It feels much safer to be a little more proactive...I have always been somewhat passive when dealing with medical professionals and it clearly hasn't served me very well.

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  2. I agree. Even now, almost 18 months after losing Charlotte, my grief comes in zig-zags. For the most part I live in acceptance, but I still have anger and a little bit of denial that this is my life. This is how I will have to live the rest of my life: without my little girl.

    I did a lot of internet searching in the beginning too. I sat down with the blood tests results and autopsy results determined to find some answers, even after the autopsy had summarized their beliefs on what happened. I very much wanted answers to that I could prevent it from happening again.

    Self-loathing, that's me in a nutshell. I never thought of it as being a narcissistic pursuit. You're right though. And I'm so very sorry that the loss doctor wasn't helpful.

    I am still learning how to live with love and appreciation even though I am not whole. I think I will be struggling with that for the rest of my life.

    *hugs*

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    1. Thanks, Melissa. I still think of Charlotte (and you!) often.

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  3. Its so expected that our grief would not be this pretty linear progression. I can barely comprehend how the psyche deals with something oif this magnitude-- my miscarriages were bad enough, what happened to you was worse and I can barely comprehend how anybody gets up and keeps on going if they lose a child they have parented for years.

    I've done the pubmed crawling for second/third trimester loss too. It pisses me off to no end as to how little research there is out here. What little I could find I summarized into a blogpost, you should check it out if you have not done so yet.

    About the tests for infections, I think that is huge- there is some inflammation likely to be the first thing that causes the first domino to fall, and infection is a likely suspect. ABout the other tests you wanted- you absolutely have the right to demand them. I've realized the importance of standing ones ground with ones doctor, as long as you have a decent grasp of the situation. But its also very hard to do. But, if anybody has cause to go above and beyond in their quest for answers, you do.

    *Hugs*

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    1. Hi Jay, I read your post on 2nd/3rd tri losses a little while back and I agree that there is frustratingly little research out there and no unified approach within the medical community with how to move forward, either, even when the dx is the same. And there is really no good evidence-based medicine for any of the possible interventions, so a lot of what is or isn't done seems to be based on a hunch and any one given doctor's bias and personal experiences.

      As for me, my placenta pathology came back clean for infections though there were fibrin deposits, likely from the partial abruption. There was also never any sign of infection (though I know that often these infections can be silent, at least as long as they are in the uterus). It seems most likely that in my case the bleeding wore down the membranes of Aminadav's sac and caused local inflammation. Though obviously stagnant blood is a wonderful culture medium for bacteria and it is possible that the hematoma itself got infected. One doctor said he would have had me rotating through several wide-spectrum antibiotics as soon as I had the big bleed at 16 wks and that I should have also been back on progesterone support at that time. Two good ideas if I ever find myself back in this situation again.

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  4. I also used to go search on the internet all the time, even at work. I was obsessively gathering information. The stages came and went in no particular order, sometimes a combination of two at the same time. Be patient with that. It sounds like you need to see another doctor, eh?

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    1. Yep, I have an appointment with my hematologist next week and I am hoping he will agree to order the clotting panel. Even with the placental issues during the pregnancy, which as far as I am concerned, is a clear indication to test for thrombophilias, it seems most doctors would prefer not knowing in my case since I also have a bleeding tendency. If there is an abnormality, then the messy part is deciding what to do with the information since I am not such a great looking candidate for clexane/lovenox. I will never be able to forgive myself, though, if we don't do the tests and something similar happens in the future. Also, hopefully the results will be negative and then I will simply get some peace of mind.

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  5. Yeah, the five stages of grief don't work linearly for most people. And its perfectly normal to jump around, zigging and zagging from one stage to another. That "magical thinking" you talk about is probably a useful coping mechanism right now. It makes sense that you would research ways to avoid pProm or causes of placental abruption. I hope that in the coming months you can find a way to hold your twins in your heart and still find happiness in life again. You are an incredibly strong, courageous woman and you will ever have this community's support.

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  6. Continuing to think of you. The way you describe your grief sounds very healthy, and very normal. I admire you for going out and trying to find answers, trying to do whatever you can to prevent something like this from happening again. Sending love your way...

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  7. I never really liked "acceptance" as the mystical elusive piece of the grief process... I always liked to think of it more as "peace"... There are losses in my life around which I have found peace and meaning, but I can't say I fully *accept* them. I hope one day you will find your peace, little by little, step by step.

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    1. I totally agree...I believe it is possible to make peace with a horrible situation and to be able to live with it without accepting what happened.

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  8. Thinking and praying for you often. And wanted to let you know I gave you a blog award. Come check it out.

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    1. Thanks, Emily. I am thinking of you, too.

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  9. Hi there,
    I am an anonymous reader who stumbled across your blog one day from Mo's. I lost my beautiful boy/girl twins at 23 weeks a few months before your precious Aminadav and Naava were born. I do not have a blog of my own nor have I ever posted anything on the internet, but I felt strongly enough that I wanted let you know that your honesty and your words have helped me tremendously and I thought you should know that, in this sense, your children have a legacy of helping someone as heartbroken as their mom. Although no story or grieving process is the same, our journeys are striking in their similarity, from the infertility/IVF, subchorionic hematoma, bedrest, second trimester loss and the "adding insult to injury" surgery for retained placenta. Your thought processes have been akin to my own in this impossible path. My husband and I miss our babies every day and think of them in particular when we see things in nature that take our breath away, just as they did. I thought you should know that your blog has helped me. If there is ever any time you need a listening ear from someone who has walked a similar road just a few months in advance of yours, feel free to reach out. If not, please accept my gratitude and my know that I am thinking of you and your little ones.
    Sincerely,
    BG

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    1. Thank you so much, BG, for writing me. It really means a lot. I am so sorry for the loss of your beloved twins. If you want to connect off the blog, my email is journeytobabyg at gmail.

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