Wednesday, July 13, 2011

Sticks, Stones, and Nomenclature

Warning: This entry is sensitive.

Whoever said "sticks and stones will break my bones but words will never hurt me" was either disillusioned or a liar. In fact, the effects of stigmatizing, isolating, devaluing, and marginalizing language cause deep psychological and social pain that often endures long beyond physical wounding.

In 1994, on her due date to be born, my baby- all 8 lbs and 22" of her- with her long piano fingers and her rolls of wrist fat- her black curly hair and deep olive skin- her long torso and long eyelashes- died. Yes, you heard me: My beloved baby- my child- my daughter. Death came into my body, brutally violating me and my motherhood. I felt psychologically raped.

And then, in a flash, she was gone.

Only moments before I was to give life, my Judas body gave Death.

The shock of her death continues to reverberate through the walls of my life. And my suffering was prolonged and exacerbated by the dismissing responses of others, responses that lingered for many months and even years in the aftermath.

Her death also continues to inspire me to live more fully and joyfully. Nearly 17 years later.

Now, back to "sticks and stones".

Let me say this with great clarity to my academic and research colleagues. To the feminists who read my blog. To other bereaved parents and leaders of support groups. To authors of books about grief. To mental health professionals. To obstetrical physicians and nurses and social workers. To religious leaders worldwide. To anyone who will listen. To the dead and and to the living. To G*d and the constellations and the angels and the birds:

My baby daughter died.

I lost my beloved child.

Did you hear me?

I did not experience

the "loss of a pregnancy" or
a "failed reproductive event" or
a "negative outcome of pregnancy"

and the lying language you continue to foist on me is infuriating. I will never, ever, ever support events, books, research, and any other movement that propagate this lying, offensive, diminishing language.*

This process of naming- the nomenclature of death- has an outcome that can be measured by society's perception to the death of a baby. It's sublime effects are used for social and political manipulation and misappropriation. It is subtly powerful and insidious.

This misuse of language encourages the systemic dismissal of this tragedy, inferring that the traumatic experience of 10 months of pregnancy, hours and hours of excruciating labor, only to then give birth to a dead baby, followed by postpartum reminders such as breast milk, burning arms, sleepless nights, pacing the floors, hormonal insanity, physical recovery, and indescribable grief isn't worthy of mourning just as any other child's death.

Rather, the implicit message is that this trauma was merely an "adverse outcome of pregnancy" or a "pregnancy loss" - and not really the death - or loss if you prefer- of a baby- a son or a daughter. And thus, these children, themselves, are devalued. This translates to the social oppression of thousands of grieving mothers worldwide who are relegated to the depths of despair alone.

And this type of lying language is in part why- in 1994- her death was treated with contempt and disregard.

It is in part why research funds have been channeled elsewhere.

It is in part why women have suffered in silence for decades, fearful to speak their children's names.

It is in part why- even at support groups for grieving parents and in textbooks about death- stillbirth vis-a-vis "fetal demise or fetal deaths" are segregated as the 'other.'

And it takes an enormous emotional toll on women to be faced with constant assaults on their child's dignity, fearful to tell the real story of their child's death for risk of the "Oh, well, at least..." comments, or "no big deal-why are you so upset?- glances." (For the record: I work with many parents who are survivors of suicide and they also face many similar effects of disenfranchised grief).

I implore you- use your voices if you share these feelings. Those who do not help to change this prevaricative language are complicit in this social misconstruing of reality, passively contributing to the suffering of women who will, in the future, face this unspeakable loss.

And to current or future potential colleagues: Please don't email me and ask me to support your research or your event or your whatever if your project makes reference to a baby's death as pregnancy loss or reproductive loss or whatever other lying nomenclature happens to be featured in the literature on that day.

Speak the truth. A beloved baby- a precious child- died. A child who is just as valuable and loved and worth of dignity and mourning as any other child.

Remember that sticks and stones can only break bones. But words can wound forever.

*Note, please read this part carefully: This is not about the use of the words loss vs. death. It is about understanding the difference between the terminology of "pregnancy or reproductive loss or reproductive failure" and "infant or baby loss (or infant death)".


Christine said...

wow. perfect.

Unknown said...

Awesome truth, thank you for your boldness. Will share on my blog!!! So grateful for voices like yours!

:) K said...

Well written! I too am a mother of a baby that died 3 day prior to his due date and 18 hours of labor later I went home with no child - and all the reminders of what I should have had - and what my body had gone through. He was 7 lbs 6 oz and perfect. I called the hospice line (recommended by the nurse at the hospital) and the *itch on the other side of the phone kept saying I had a miscarriage?!?! It is 6 years later, and 3 children later and my anger is ever present! I find I also have no patience for people who can not appreciate what a blessing it is to have a healthy, living, happy baby. I like you try to live more fully and relish in everything my children do. Thank you for expressing this so well - I feel like you gave my feelings a voice.

M said...

Thank you for putting how I feel into words! Many times I can't even describe how I feel, but I found the words from you and some other BLM. Thank you!

Antony said...

My prayers and support are with you. This is a powerful and well written post.

Maria said...

This is the total and utter truth!

I still can't bring myself to put the word dead or died ect, together with my baby Thea's name.

I can only say that her little heart stopped beating.

Maybe it's still too early for me. I lost her on the 25th of march this year.

I just wanted to let you know... that I love the kindness day. I've translated it all in italian for my italian facebook friends. I hope they do something in memory of a loved one.


michelle said...

you are so right and noone should use those words that make the loss of a child insignifcant because it isnt.Hugs

LDYBUG1976 said...

Thank you for that.
Danielle Leacock

Dr. Joanne Cacciatore said...

Thank you all for reading and for your comments. I wish we didn't have to have these conversations.

Tears in November said...

Yes, yes, yes! This was yet another thing that added to the life shattering pain of losing my son. The terminology that made him appear not worthy of respect, love, or remembering- they kept telling me I had a fetal demise. Like my son was some sort of cold I would get over. I remember the labor, the water breaking, the aching arms, the milk coming in, and no baby to nourish with it. I remember my administrator calling and asking me when I was coming back to work soon after my son died, in the mental state I was in, and when I said I did not know exactly when I would be back I was told that "I was being unfair" to my co-workers and students. I too was asked by people months later "why are you so sad, I thought you"d be over that now, and happy again". I have had another baby an I too, drink in every moment with her as with my other children. The others with their terminology, time frames, and "scientifics" just don't get it. I am so grateful for you Dr. Joanne.

Sweet Cadeaux said...

Interesting, isn't it? A baby's not a baby till they're out alive. My stillborn son, Cadeau, was born three days before his due date. Placenta abruption took my only chance of seeing him alive face to face. I recently lost my third child to an early miscarriage. Just as devastating and even harder to grieve. And yet, somehow, I am shushed and told not to talk about them. When I push back and ask 'why,' I am told that it will make other people uncomfortable. To which I respond, "It's two minutes out of your day to feel uncomfortable. It's the rest of my life to feel grief. You don't ask my permission to talk about your children. I won't ask your permission to speak about mine."

Anonymous said...

As much as I understand what your saying (yes my son died 3 days after he was born) I think people have the right to say it however it makes them comfortable. Especially those who have a baby that's dead. If a mothers baby has died and she wants to say she lost her baby then she has that right. No body (especially a mother of a dead baby) should ever be made to feel bad about the way she copes with her loss.

Dr. Joanne Cacciatore said...

(((Tears in November)))

Yes, indeed. He was and is worthy.

And Cadeau is a gorgeous name Sweet Cadeaux. I love your last sentence. Bring warmth to my <3 to see others stand tall that way!

Lifecanbeshit- Very sorry about the loss of your son. And, based on your comment, I think you have totally misread the meaning of the blog. So I added a clarifying sentence at the end with an asterisk. Perhaps you may want to revisit the language?

Thanks everyone for reading!

Cynthia said...

Thank you Dr. Cacciatore I appreciate your writing. I have read it through Christine's post, Olive Lucy our granddaughter ever so precious to us gone too soon. I am forever changed in my thought process since Lucy is no longer in our presence. I've had many statements made to me as well as a grandparent and I have to admit that some days I really don't care what others think especially those that say "get over it" really? I will never get over our granddaughter Lucy being gone so soon. Others say why do you carry the picture of a dead baby I simply say well, I would much rather have pictures of an almost four year old running and playing and enjoying her summer but these pictures are all I have of her so yeah I carry them and how is that your issue? I agree with many that you have so eleoquently placed many of our silent thoughts in writing and perhaps there will be those who read it and shake their heads and say "what" and then there will be those of us who mourn not only the death of our sweet angel baby girl our granddaughter Olive Lucy, but we shake our heads and say "you hit the nail on the head" yes, you have expressed many thoughts we have had even as grandparents. I did not give birth to Lucy, but my daughter did and for her I grieve adn for the times that we won't share on this earth with Lucy. I remember her in my own way and I speak to her daily especially when I haven't heard from her or know that perhaps mommy and daddy needs her near by this day. Thank you for the work that you do and for the love you share so willingly with others who grieve. There is no getting over it for it is a human being and lets talk about that her name is Olive Lucy and she is beautiful and we miss her. Thanks again. cyndi, grandmother to Lucy, mother to christine.

T said...

Outside of this community, I'm uncomfortable with the term stillbirth, or calling Rose a stillborn baby. Instead I tell people my daughter died, my daughter passed away. They typically don't ask for clarification. I don't know where their heads go, and what manner of death they imagine for her. Was she premature, or SIDS, an accident, or some unfortunate disease. Whatever they imagine, the result is still the same, my baby is dead. I live my days without my daughter, she is dead, my daughter died.

But when I've said that my daughter was stillborn, the reaction is different. Its, oh, yes that happened to my great Aunt Betty Jane once removed on my mothers side, and well she went on to have many more children and all is well....or something of the sort. A stillborn baby is easily replaceable, no mourning necessary. Have another baby and all is good.

Its not.

- From a blog post I'd written last year. Long way of saying, totally get it. She wasn't a pregnancy loss or a fetal demise, she was my daughter, my beautiful middle daughter.

Holly said...

You certainly wrote this well.

Karin said...

I appreciate your passion. Thank you. At this point in time, I almost always answer the question "Do you have any children?" or "Does your son have siblings?" with, "Yes, he has a brother and two sisters who died." Some ask further, others don't.

Sometimes I feel that the ones who ask further are not doing so out of concern, but out of curiousity to know to what degree I should be allowed to grieve (you know, the whole age of child vs. degree of grief thing) One woman said to me, "Ohhhhhh, they were JUST babies then." with a kind of a shrug, signalling where her thoughts lay on this continuum. I said, "Yes, MY babies.", signalling that I wasn't going to put up with that crap. She said, "Oh." In that brief moment, I saw a flicker of recognition. Just for a second. Then she went back to her old self, the one who didn't have to care because it didn't happen to her.

It seems to me that it take someone who cares to help the world see this differently, to see how words and assumptions can hurt. Someone like yourself. I thank you for your passion.

Callie-K said...

Thank you for this post.
A little over 12 years ago we buried our son. We went home to his complete nursery, flowers (funeral, not celebratory) lined our small home, and a reminder call about our upcoming Lamaze class. We were totally broken and lost. The pain so deep, and constant, that thinking was too much... We fortunately had many helpful hands surrounding us, and open ears. Yet we still felt so alone, and not sure of what we needed, to "move forward". As the holidays I realized that we just wanted the recognition of our son. We just wanted people to remember that he was. That he was our first, and although from the outside, it might not look like such, but we were officially parents.
I read ::Maria's:: comment above, and I am holding her in my heart. And her sweet girl Thea. I am still filled with grief (12 years later), as I watch my children growing and master all that their older brother would have taught them. But nothing brings my heart a little more joy than when I hear someone say my son's name. When my kids speak of their older brother....when I get a card from a friend on his birthday, just to know that he is not forgotten. I will hold your Thea in my heart. Thinking of you all!

Dr. Joanne Cacciatore said...

THank you so very much for reading... Callie, I'm glad you found us... but sad you needed to do so.


GrammyGoldman said...

As a labor and delivery nurse,I ALWAYS called the precious one a baby. "Look, he has your eyes"..or some other beautiful attribute,no matter the circumstance. Medically,it will be termed a demise. Perhaps those who are uncomfortable with life and death will continue to use that word. Being a nurse/friend to a grieving family is an honor..


The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night. Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

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