Disenfranchised Grief … and HYSTERECTOMY

grief quote moliere


da Vinci Total Hysterectomy

Disenfranchised grief … I remember first finding this term during a time of loss … a loss that I couldn’t express to most everyone and definitely not publicly.  It was unacceptable.  It still is.  I found a niche where I could fully express the pain and grief of this loss … it has made all the difference in the world.  However, there is still an occasional urge to open up and talk about this period of disenfranchised grief … this heartbreaking loss.

But I don’t.

I hold back.

I keep it in.

Locked away.

Only a few people have access to this part of my ❤

 Disenfranchised grief …

cant speak

Disenfranchised grief occurs when an individual’s grief experience is not recognized or acknowledged by others. Disenfranchised grievers are frequently overlooked or ignored, lack opportunities to express their emotions, receive diminished social support and sympathy from others, and may be deprived of opportunities…

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Goodbye old friend

so-long-uterus-1024x576One woman shares her thoughts about the loss of her uterus.

rise of the phoenix

Since my hysterectomy last month I’ve been having strange thoughts. I never wanted kids before, I think mostly because I was terrified I’d end up treating them like my mother treated me. Since then I’ve been thinking a lot about kids and feeling sad that I can never have any. I wouldn’t necessarily say I want kids, I’m just sad that is no longer on the table. Sure I have my ovaries and could get a surrogate, but
it’s not the same. I know I’m nearing the age anyway where kids are out of the question at 34, but I guess I just always had that option. To make matters worse I turned 34 eleven days after my hysterectomy. Happy birthday to me. Another thought I’ve been having is that I’ll never have a period again. I know what everyone is thinking, that I’m insane and I should be happy…

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Happy Mother’s Day even though …

… you may not actually have living children, you couldn’t have children for whatever reason, you had miscarriages, you don’t have children but are working towards children through adoption or surrogacy, elected to interrupt a pregnancy through termination for medical reasons … and of course, happy mother’s day to all of YOU who have an actual child (or children).

AND most importantly, let’s not forget the fur baby mommas either (moms to kitties, pooches, rabbits, hamsters, etc.)!

cat mom love

I must say, after three hours with my sweet niece and nephew I’m not feeling sad about not having children of my own today.  My niece is a girl through-and-through and I am enjoying watching her grow and become her own little person each year.  The same applies to my nephew … and he is a complete boy — killing bugs, kicking things and wanting to (play) fight.

I am a wimp.  I am completely exhausted after playing and helping watch these two little beings today.  Our house is not exactly completely not child proofed … cat proofed yes.


Where did my niece find the huge sharp scissors I’ve lost for months?  Why did my niece think grabbing onto a huge mirror while it swung precariously on the wall was a good idea?  Where did the piece of gum go that my niece was chewing?  Why did my nephew insist on collecting ant eggs from the yard and putting them in a baggie bringing them in our house?  Where, oh, where is that piece of chocolate my nephew dropped and lost?  Why did they think screaming and yelling, “KITTIES!” at the top of their lungs would actually endear my cats and not scare the living bejeebers out of them, even after we — the entire family — told them to approach the meowmers slowly speaking softly if they wanted to pet them?  Why did my niece, who is four, insist that my cats opened a locked door and were hiding in there?  Why after washing their hands in the bathroom sink does it look like a water main broke?  Why do my niece and nephew have so much endless extreme energy?  

I’m tired even after writing this.  Just how do moms (and dads) deal with this day in, day out, day in, day out, day in AND day out?  

Seriously, HAPPY MOTHER’S DAY, mothers!  

If your children are grown you have survived a war, if your children are growing, how do you find time to even begin to care for your self?  My best friend and sister-in-law are completely off the hook when they don’t call me back right away or even sometime soon — I’ve told them, “You have kids, that’s ALL you need to say.”

I am not having child envy one bit, but I am appreciating all the hard and tiresome and boring and fun and interesting and fulfilling tasks it is to BE a mom.  But I will appreciate this from the Auntie stance.

Just how does this post relate to hysterectomy you ask?  I lived in my mom’s uterus for about 9 months. This is a tribute to both my formation house (AKA my mom’s uterus) and the woman who created me.  My mom is not alive today; the following letter details her last moments of life.

A letter from the past

April 8th, 2009

I am sad to say this but my mom died.  She was 76 years old.  My mom had not been well for some time.  She was on Hospice care for just over one year — a long time for Hospice patients!  She had COPD (chronic obstructive pulmonary disease) AKA emphysema and FTT (failure to thrive) … and yes, FTT is a real diagnosis.  She gradually lost weight over the last few years with her final weight was around 49 pounds.

All say, ‘How hard it is that we have to die’ — a strange complaint to come from the mouths of people who have had to live. ~ Mark Twain

She finally succumbed to pneumonia, old man’s friend as the Hospice nurse told my dad and me after she talked to us after arriving to my parent’s house shortly after she died.  She was unable to swallow the large antibiotic pills for the pneumonia. My mom wanted no heroic measures to save her.  She wanted no feeding tube, no IVs and definitely no ventilator. Apparently, pneumonia is called old man’s friend because left untreated, the sufferer often lapses into a state of reduced consciousness, slipping peacefully away in their sleep, giving a dignified end to a period of often considerable suffering.

Death, a friend alone that can bring the peace his treasures cannot purchase, and remove the pain his physicians cannot cure. ~ Mortimer Collins

I am very happy I was able to spend my mom’s last day with her.  I didn’t know it would be her last day, but I knew I needed to leave work and make the four-hour drive to my parents home.  My husband was wonderfully supportive throughout this time.

We say that the hour of death cannot be forecast, but when we say this we imagine that hour as placed in an obscure and distant future.  It never occurs to us that it has any connection with the day already begun or that death could arrive this same afternoon, this afternoon which is so certain and which has every hour filled in advance. ~ Marcel Proust

When I arrived at my parents house, I walked in and saw a blanket on the couch.  I didn’t see my mom thinking she was in her bedroom, but then my father encouraged me to go see her on that couch.  I looked over seeing her so tiny, the worst she had ever looked.  There really are no words to describe seeing your parent helpless, small and frail.  

I sat with her, with a fear to touch her because I didn’t want to hurt her or make anything worse.  The brightness had vanished from her once vibrant blue eyes.  That spark was gone and I knew in my heart it wasn’t coming back.

My mom and me.

My mom and me.

Death, the sable smoke where vanishes the flame. ~ George Gordon, Lord Byron, Childe Harold’s Pilgrimage

She was wearing her oxygen, sitting up, eyes half open along with her mouth agape — simply breathing.  She spoke in a whispery way, difficult to understand most of it.  She told me she loved me several times.  I brushed her hair, washed her face and hands.  I put drops in her sunken holes for eyes.  I sat with her asking repeatedly if she was in any pain.  She didn’t indicate to me she was hurting.  She felt hot; I took her temperature.  She had a fever.  My dad went to the store to buy liquid Tylenol (acetaminophen).

I got to talk to her without any interruption.  I told her I was sad and that Dad was too, but that we would be okay.  I thanked her for everything she did for me.  I told her I loved her and didn’t want her to hurt.  Sometimes her eyes opened as though she was struggling to be more conscious.

My dad returned with the liquid Tylenol (acetaminophen).  I measured it out, giving it to her in a minuscule oral syringe.  My dad was happy feeling he was doing something for her because he hadn’t been able to feed her for a few days as she had stopped eating.  My dad got down on himself, something I’d never seen before, by saying he wasn’t doing anything for her.  I reminded him that he left his job to care for her and he was doing everything he could to care for her.  My dad truly loved my mom … he still does.

Love is the only way to grasp another human being in the innermost core of his personality. ~ Viktor Frankl (1905-1997)

I gave my mom a breathing treatment.  I was so thankful to be a nurse and know what to do for her medically.  My dad made dinner for the two of us and we ate together in silence.  After dinner, we returned to sit with her in the living room on the couch.  I thought  about painting her nails the next day.  I had plans for her.  But, of course, life … or death in this case …. is what happens when you make plans.

My mom and me.

My mom and me again.

No one can confidently say that he will still be living tomorrow. ~ Euripides

I asked her again if she had pain; she indicated she did.  My dad got her medications and I mixed the morphine in a little water administering it to her in that tiny syringe.  Next, I gave her her sleeping pill in the same fashion.  We repositioned her, made her comfortable as possible while snuggling her up with a soft stuffed toy bunny.  It was now 8:30 pm.  My dad and I stayed around her, talking to each other until about 10 pm when we both went to bed.  My dad and I were both emotionally and physically exhausted, both having had a sleepless previous night.

My dad kissed her goodnight and told her he loved her.  My dad made his bed on the floor next to her on the couch so he could be with her helping her in any way.  I went to my old bedroom and fell fast asleep.

At one in the morning I awoke for some unknown reason.  I got up to get some water.  As I walked pass my mom sleeping on the couch I heard her sleeping heartily, even snoring.  I was happy she was getting some good sleep.  I went back to bed and about two in the morning I heard a knock on my bedroom door; it was my dad telling me to come look at Mom.  His eyes were watering.

I hurried from my bedroom, going over to her instantly knowing she was gone.  My dad cried.  I cried.  She was gone and that was it.  She never had to worry any more.  She never had to feel pain again.  She died in her own home the way she wanted with grace, dignity, love and care.

Death may be the greatest of all human blessings. ~ Socrates

My dad called the Hospice nurse who came over and did the closing activities, like talking to us, placing my mom’s now relaxed body into a straightened position, counting the narcotics and calling the funeral home.  Two large men from the funeral home came, lifting my little mommy onto the gargantuan stretcher.  It was weirdly ridiculous — two strong men sharing the weight of less than 50 pounds. When they left, I touched the couch where she once was craving to feel any warmth her body had left.

My dad and I talked.  We didn’t go back to bed.  We called my brother later that morning to let him know that Mom was gone.  He cried.  It’s so sad when someone you love dies.

We understand death for the first time when he puts his hand upon one whom we love. ~ Madame de Stael

My mom wanted to be cremated having her ashes spread over the Texas Hill country … somewhere with a pretty view.  My brother was not with her during her last days, but on the day I came down, before I arrived, my dad spent time showing my mom all my brother’s childhood photos.  So, in a way, she did get to be with her son at the end.

Boy, when you’re dead, they really fix you up.  I hope to hell when I do die somebody has sense enough to just dump me in the river or something.  Anything except sticking me in a … cemetery.  People coming and putting a bunch of flowers on your stomach on Sunday, and all that crap.  Who wants flowers when you’re dead?  Nobody. ~ J.D. Salinger, The Catcher in the Rye, 1945

The next day when I talked to my brother, he said he wondered where to put mum’s ashes.  (He called her mum — she was English and he was also born in the UK.)  He wondered if he should put her ashes in a river, and I reminded him that it might not be a good idea since she couldn’t swim!  He laughed.  I laughed.  We laughed together.

There is always death and taxes; however, death doesn’t get worse every year. ~ author unknown

My dad is doing well with this loss.  It’s sad because she died, but also because she died on their 44th wedding anniversary as well.  One of the saddest things has been for me to see my dad cry.  He’s an emotionally strong happy man, so this was a different experience for me … and I’m sure for him as well.

Our death is not an end if we can live on in our children and the younger generation.  For they are us, our bodies are only wilted leaves on the tree of life. ~ Albert Einstein

My mom loved Princess Diana … this quote is specifically for her:

Mom & Diana

Mom & Diana

I’m aware that people I have loved and have died, are in the spirit world looking after me. ~ Princess Diana


Anyway, happy Mom’s day wherever you may be.


Disenfranchised Grief … and HYSTERECTOMY

Disenfranchised grief … I remember first finding this term during a time of loss … a loss that I couldn’t express to most everyone and definitely not publicly.  It was unacceptable.  It still is.  I found a niche where I could fully express the pain and grief of this loss … it has made all the difference in the world.  However, there is still an occasional urge to open up and talk about this period of disenfranchised grief … this heartbreaking loss.

But I don’t.

I hold back.

I keep it in.

Locked away.

Only a few people have access to this part of my ❤

 Disenfranchised grief …

cant speak

Disenfranchised grief occurs when an individual’s grief experience is not recognized or acknowledged by others. Disenfranchised grievers are frequently overlooked or ignored, lack opportunities to express their emotions, receive diminished social support and sympathy from others, and may be deprived of opportunities to participate in mourning rituals. In other words, these individuals are denied the ‘right to grieve.’ Disenfranchisement is a significant problem for grievers because it can inhibit coping and complicate the grief process. ~ Hannah M. Davidson (2010).

Some examples of disenfranchised grief include but are not limited to:

  • Infertility issues
  • Miscarriage or stillbirth … any perinatal loss
  • Pregnancy termination
  • Giving a child up for adoption
  • Job loss
  • Incest
  • Rape
  • Break-up between same sex partners
  • Diagnosis of HIV
  • Surgery
  • Death of:
    • an ex-spouse
    • a co-worker
    • a pet
    • an online friend
    • a same-sex partner
    • a step-parent or step-child
    • other non-blood relationships (friends, boyfriend/girlfriend, in-laws, neighbors, celebrity, et al.)

Dr. Kenneth Doka gave this experience a name in the mid ’80s. Dr. Doka’s book on this topic is the foundation for much of the further theory and discussion of disenfranchised grief.  HERE is the man himself (see video below).

BTW the video with Dr. Doka is NOT some stuffy old man going, “Blah, blah, blah” boring you to pieces.  It’s actually a very thoughtful video only about five minutes in duration — only five minutes for a an enlightening concept.

One helpful article explaining this concept is:  Disen-whaaaat? Understanding Disenfranchised Grief.

Another insightful article by Elizabeth Kupferman is: the shame experience of disenfranchised grief.

In regard to hysterectomy it may be difficult to talk about this with others.  Many people see surgery as a solution to a problem and when the organ or “problem” is removed there’s a misperception that there’s nothing further to discuss.  The loss of a uterus can be emotionally upsetting to many women.  Some women view a hysterectomy as a loss of their femininity or ability to produce and have children.

On top of the loss of a uterus a woman may be dealing with a cancer diagnosis.  A sudden diagnosis with a need for hysterectomy often doesn’t allow a woman time to accept the loss and immediately she nosedives into grief; in the meantime, family and friends have side-stepped her loss focusing only on a surgery to increase her chance of survival.  This woman’s grief over loss has now become trivialized by her supporters … she has now entered the realm of disenfranchisement where her grief cannot be acknowledged.  She is told things like, “You are lucky to be alive!”, “Glad they got the diagnosis when they did!”, “You still have one (two, three, etc.) other children,” and other comments that completely dismiss her desire to speak about her loss.  She is left saying only things that are palatably acceptable to those around her.

Hysterectomy is difficult to discuss with most men because they can’t relate to problems this organ may have caused the woman.  Others feel squeamish when the word surgery comes up.  And there have even been friends or family members who refuse to discuss others’ personal grief because they feel forced into a voyeuristic role; these individuals fail to understand just how important it is for most women to have the ability to open up to communicate their loss …  to speak words out loud making the loss real initiating the grieving process leading to emotional healing.

Personally, I have been able to open up to enough people about my hysterectomy … the right people who were able to provide the emotional acceptance and support I needed when I needed it.  The most difficult part of deciding to have a hysterectomy in my experience was coming to terms with the emotional aspect — the realization of never birthing my own children.  Once I came to this pivotal acceptance, the physical part, the loss of a life-time organ was easy.

Whatever our loss, when grief is acknowledged it is easier to bear. ~ Gina Stepp


See also:

Was it the nurse or the Dilaudid?

After being settled into my room a bit and my husband having gone home to feed the cats I found myself opening up to nurse S. — the lovely day shift nurse.  I don’t think I meant to intentionally have this conversation with her … it just happened … either that or it was the Dilaudid.  I’d like to think it was the connection I had with her with the baby steps I’ve been taking at trusting others.

Nurse S. had a lot of charting to do and had to do her final checks on me.  The charting system is in each patients room on a computer.  I don’t even know how I brought up the topic … but somehow it started with being OK about being on a postpartum floor even though I was childless.

I told her that I was pregnant two years ago and that our baby had a chromosomal abnormality — trisomy 21 to be specific.  I told her how it was a surprise pregnancy as I had years and years of infertility never believing I would be able to conceive.  I was 43 at the time.

I told her how my husband and I elected to terminate the pregnancy … I cried … she cried.  She held my hand.  I don’t feel like she judged me.  I told her how I couldn’t give my daughter a broken life starting with a likely heart surgery to follow with mental and physical disabilities effecting her entire life.  I told her that telling her my story wasn’t easy and how scary it was for me.  She simply listened, nodding her head at all the appropriate times.


I feel like I may have taken up a lot of her time by all my talking … I apologized and she replied by saying it was OK, that this was what was needed in this time … for her to listen to me.  I believe she genuinely meant that.

And I still wonder had I not been on the Dilaudid PCA if I would have opened up so easily … I’m simply going to tell myself that it was the special rapport I had with one caring and kind nurse leaving it at that.


More personal stories about TFMR (termination for medical reasons): http://1in10blog.wordpress.com

Old eggs & chromosomal abnormality

In 2012 I had an unexpected pregnancy … unexpected in the sense I had years and years and years of unexplained infertility.  Both my husband and I were delighted to discover that I was pregnant.  My pregnancy occurred at 43 and I was considered advanced maternal age (AMA).  If the pregnancy made it to term, I would have been 44 years at the birth.

I didn’t enter this pregnancy with blissful ignorance thinking everything would be all right.  I realized my age — being in my 40s and talked over what we would do if the prenatal diagnosis was poor.  My husband and I had had this talk well before we were married and were on the same page.

At 12 weeks the pregnancy was discovered positive for Trisomy 21 after a blood DNA test and a confirmatory CVS (chorionic villus sampling).  We elected to end this much wanted pregnancy in the first trimester just over 12 weeks. We were devastated because this was a much wanted pregnancy even though it was unplanned and completely unexpected.

I had a total of twenty-one weeks of a pain-free life — 12+ weeks for the pregnancy plus eight weeks after the termination for my period to return — free from the monthly dysmenorrhea pain.  It was the longest time I can remember being free of this pain … at least physically.  My emotions were consumed by grieving our loss.

I came to terms with many things since the time of our loss.  I now understand that even though a woman may be healthy physically, the eggs of a woman over 40 cannot compare biologically to a 20-year-old or even a woman in her early 30s.  My outside looked good, felt healthy but chromosomes of my residual egg reserve were damaged due to the natural process of aging.


More personal stories about TFMR (termination for medical reasons): 1 in 10 blog