Category Archives: Grief

Counting Less When Not a Mom

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Today is hard for women who did not choose childlessness. It makes us think of all the ways in which society sees us as less than those who have had children.

I do not think this is a conscious thing. I think it is something written into society.

You would think that those servicing communities where the vast majority of women in the community don’t have children due to cancer of the reproductive organs would be more sensitive about this. Remember, simply being unable to have children radically increases the risk of ovarian cancer. How disturbing it was to go to the Ovarian Cancer National Alliance home page and found Tell us how you you want to honor a mother . . .

Ovarian cancer. Yes, some women are lucky enough to have had families. Most are not.

I decided to visit the other major charity for ovarian cancer, National Ovarian Cancer Coalition, and they had many links about mothers and motherhood. It seemed especially cruel.

I stopped here. I was afraid of looking for information about uterine cancer at this point. I already knew that all of the cancer societies use motherhood – even for those for whom it is out of reach – to pull at the public’s heart strings. Do they not realize that that sends a message of non-mothers not being as important?

This goes through everything. After my surgery last year my husband and I poured out our pain around not having children to a nurse practitioner who then immediately started in about women with small children. It was as if she hadn’t hear a word we said.

The support boards for cancer have many more mothers writing then childless. I really believe it is because the mothers fill the boards with how their children make everything worthwhile. Does this mean that those without children don’t have anything to live for? To strive for? That is a message that can be heard if you read it at the wrong time – in the wrong state of mind.

I find that certain kinds of pain can be understood by those who have also experienced it. There is a story I’m not sure I told from last year. The first ultrasound tech I saw told me how she and her husband had been pursuing a child. It led to an abdominal pregnancy and total hysterectomy. A failed adoption followed. I know now she was trying to tell me that I wasn’t alone even though many would make me feel that way.

In how many ways does society unconsciously make the childless feel like less?

Voice of the Detroit Tigers Now Silent

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I remember driving Up North in my father’s pick-up before the days of satellite radio – even before CB radios were all the craze. From Detroit to Alpena most weekends through the months when our property wasn’t completely snowed under. There was only one radio station that stayed with us through the entire drive, WJR. As we would drive north in the summers on US-23 the voice of Ernie Harwell told the story of the Tigers’ game.

For millions who grew up in Michigan, Southern Ontario, and Northern Ohio a voice as comforting and as familiar as family echoed through the night when the Tigers played. Many a radio was snuck into a school or workplace when Ernie Harwell was calling the afternoon game.

Ernie started his career in Georgia as a young radio announcer in the minor league. He was traded for a pitcher to some unimportant New York team before finally settling in as the Tigers’ voice on the radio. Ernie Harwell was baseball. His voice is what I, and many others, hear when thinking of a baseball game.

Detroit has lost not only the voice of the Tigers but a man who gave so much back to the community. Ernie Harwell was well-known for his charity work – which he did not trumpet. He is part of the time when Detroit was one of the top media markets in the world. A time when WJR and CKLW still ruled the airwaves of the Great Lakes region.

It is the voice of Ernie Harwell that reflected very much what Detroit was all about. This was the city people came to to create the middle class. This was the city people of all colors, creeds, and originations came to to create a better place. Cancer of the bile ducts took the man who started as a 5 year old bat boy for his local minor league team. Will his legacy be forgotten by a city that is suffering from its own cancers of poverty and abandonment? Or will his death inspire those who remember him to make Detroit the best hope for a strong middle class again?

His were not grand dreams or aspirations. Ernie Harwell died at home in Novi, Michigan – an upper middle class suburb of Detroit. He was a dedicated worker and giving individual who touched many a person through America’s game, baseball, on many a night. Whether hidden under covers, trekking across Michigan, or sneaking that listen at work, his voice was delivering baseball and sneaking stories of those days of yore. And, sometimes, including a bit of Scripture with that favorite pastime.

For those of you who never got to hear what baseball really sounds like, here is the farewell speech when Ernie Harwell retired:

Ernie Harwell will be sorely missed by a town that loves its sports and local media. With his passing, I feel like we, as a nation, are losing an icon of what we could have become and what we have lost. This was a man who could be held up as a real role model for anyone. Had he faults? Of course. But, unlike so many of us, he strived to be the best he could be with the talents and resources God gave him.

May Ernie Harwell find peace in the arms of Our Lord, Jesus Christ. And, maybe, he will be announcing a heavenly baseball game.

Reading with a Wounded Heart

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Sometimes even reading a book or seeing a movie can cause wounds to reopen. Wounds we thought we had nursed ourselves through the worst of, only to find they are still much more raw than we expected. Sometimes, we don’t even know it until after we have done it. So captured by a story, we don’t recognize the pain that it teases open until we are in the midst of the aftermath.

Great literature is supposed to bring raw emotions to the fore. Sometimes even that which we see as “fluff” can unintentionally cause us pain by reminding us of an old or recent wounding. It may be the first time our heart was broken by another, the loss of a loved one, or a reminder of a dream that can never be.

Recently, I did this to myself. I read, in succession, two books that centered on things I will never have in my life. I was caught up in the story – a sign of a good read – but I didn’t recognize the pain that was ready to come pouring out. Or, maybe, it was a catalyst for the pain that I had been holding in so as to not deal with it? I do come from a long line of WASPs. We aren’t exactly known for being open about emotion.

Now, the books in question are by no stretch of the imagination works of great literature. And, to be fair, I only started one to put it down once I realized it was leaving me raw. I do, however, want to know what happens to the characters, so, when I feel stronger, I will read it again.

That’s the accidental pain that can occur. There are other books that you know might hurt if you read, but may catch you unawares in how close they hit home. I started reading Gilda Radner’s book, It’s Always Something: Twentieth Anniversary Edition, only to find that I had to put it down.

It’s Always Something: Twentieth Anniversary Edition hits too close to home. My husband read a bit of it and said to me that I would relate a lot to her experience. I did not expect for her to be from Detroit; have a beloved dog who she adored as much as we adore SMR; that she had failed fertility treatments; and then, found herself facing ovarian cancer. This paralleled too closely – and still does – for me to read very far without tears streaming from my eyes.

I haven’t picked up It’s Always Something: Twentieth Anniversary Edition for some time now. I know where the book is – despite the massive numbers in my to be read pile – but reading brings everything too close to the surface. Emotions, especially the negative ones, are to be controlled and kept in check.

There are other books I have found I have had to put down. There is a piece of historical fiction – highly recommended – that has a composite character partially based on my many greats grandmother Jenny Wiley that I cannot read for the horror she experienced and witnessed. I love history, but cannot bring myself to read much of what would once have whet my appetite because it reminds me too much of the recent pains in my life.

I have found it odd to need to walk away from good or enjoyable reads because of feelings that rise unwanted to the surface. Have you ever needed to put down a book because it was hitting too close to your wounded heart?

A Strange Encounter

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I had an appointment today with my Dr. Professor. It was to go over my bone density test. Turns out I am between normal and osteoporosis. This is known as osteopenia. I am to start taking Os-Cal twice a day for a few months before being checked again. I have a family history of osteoporosis – combined with a lot of lupron, hysterectomy, and chemotherapy – I want to be aggressive in preventing osteoporosis.

While waiting I ran into one of my former chemo buddies, C. C had a very traumatic holiday. Her son lost one of his 2 year old triplets in a freak accident. For some reason – I know this was meant in kindness – she felt she needed to share this with me. She had remembered how traumatized I was about losing the ability to have children. I really wish there was a way to stop these kinds of pain, there isn’t.

I was not offended, or even surprised by her need to tell me of this. I just wonder what drives all of us to share our pain with one another. Is grief the thing that actually makes us need one another?

Hope Deferred : Heart-Healing Reflections On Reproductive Loss

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Hope Deferred: Heart-Healing Reflections On Reproductive Loss by Nadine Pence Frantz and Mary T. Stimming is a moving piece on the problem of the suffering of infertility. It, however, is as unsatisfactory as any treatise on suffering that has been written.

51BZN3501SLI admit that I may be too deep in the trenches of the hurt and pain of infertility – sterility, even – to appreciate the reflective nature of the book. My feeling that the book was not all it could be was confirmed when I learned one of the editors was suffering from secondary infertility. Fairly or unfairly, in my mind, I kept hearing the phrase, “she got hers.”

I do not believe I can give a fair review of this book. I will say that until the section on science – way out of date – I found the theology sound and not overbearing. Much of what has been written for the popular Christian press tends to press the author’s interpretations rather than the need for reflection and prayer for the individual involved. Very little in this life is black and white.

I wanted to like this book. I did like the book until the misinformation on science – too often seen in all writings – came up in the final chapter.

Since there are so few books written from a liberal Christian perspective on the problem of infertility in the age of reproductive technology, I will give a cautious thumbs up on this book.

All Star Batman & Robin, The Boy Wonder, Vol. 1

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51aiWFkKlMLAll-Star Batman & Robin, The Boy Wonder, Vol. 1 is dark. Well, it is darker than the more common telling of this story. Frank Miller and Jim Lee join together to bring a more Dark Knight feel to Robin’s origination story.

What would the driven, possibly insane, Batman of The Dark Knight, have done in order to find himself with a Robin? Would he have allowed a mere accident of fate to determine this? Or, would he be an opportunist who decided to twist a young boy’s grief into a weapon against crime?

This series doesn’t just revisit Robin’s story. Appearances by Black Canary and Batgirl are among the pages of this fascinating retcon. Even if you are a casual DC Comics fan, this is one worth picking up to read.

All-Star Batman & Robin, The Boy Wonder, Vol. 1 written by Frank Miller shows his dark and brooding style while the art – done by Jim Lee – brings a lighter tone than The Dark Knight series ever had. And, well, this is not a light book.

Bath Massacre : America’s First School Bombing

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51vYwhzLLbLUpon finishing Bath Massacre: America’s First School Bombing by Arnie Bernstein I turned on my TV to see that 7 students in the Detroit Public Schools were hospitalized at two area hospitals. Synchronicity is odd. There are few similarities as the Detroit shooting occurred at an area bus stop and the Bath Massacre took out an entire school save the targets being school children.

I lived in one of the towns immediately affected by the massacre – not Bath, Michigan – so already had some knowledge of the tragedy. I was living there when Columbine happened. People remembered a much larger tragedy that happened on May 18, 1927.

On May 18, 1927, area farmer, and former school board member and treasurer, Andrew Kehoe, had wired his farm and the Bath Consolidated School with dynamite, killing 45 people, mostly children, and injuring 58. This is still the worst single school disaster in modern history.

The book is a decent retelling of that horrific day. Bath Massacre: America’s First School Bombing suffers from two major flaws. First, the need for Arnie Bernstein to include non sequiturs about Chicago in the book. (These should have never been left by the editors. I can only think they were looking for padding.) Second, the short shrift given to Nellie Kehoe’s medical needs and the expenses that must have entailed from those.

The finances of Andrew and Nellie Kehoe were not investigated to the point I would have liked to see. Nor were the stresses of Nellie’s many hospitalizations. This leaves one to wonder if Kehoe, who blamed taxation for his money woes, was faced with mounting medical bills that he felt he could have paid had he not been paying taxes. That this speculation was not delved into more, instead, Bernstein had to unnecessarily mention connections the area had to Al Capone, was a major flaw.

The chapters detailing the bombing and rescue efforts are riveting, if dry. I was very surprised to find that Bernstein has a Master’s in Creative Writing. (The only reason I can overlook the use of Wikipedia(!) as a source in his endnotes. Completely irresponsible in a history book. Use authoritative sources people.) His style reads more like a history theses rather than the true crime story this really is. This flaw comes mainly from focusing on things that were not relevant to the story in the first part of the book and ignoring the financial angle of this crime.

Bath Massacre: America’s First School Bombing is one of only two easily obtained books – and the only in-print book – on this major American tragedy. No one living in Bath at the time was untouched. Today, there is a memorial park with a variety of tributes. Entering town, one can feel the sadness that still resides in the essence of the town.

For those who want to know more about the origins of suicide bombers and their victims, Bath Massacre: America’s First School Bombing, is a good place to start. Andrew Kehoe was the first of what would be an ongoing criminal-type in the modern era – mass murderer who kills himself/herself during their crime.

Do I Win The Pain Olympics?

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Lately, there have been a rash of postings in the infertility blogosphere about The Pain Olympics. What are The Pain Olympics? It is a game that women play to tell others that my pain is more real than your pain. Now, to some degree this is true. Anything that someone has experienced for themselves is more real for that person than anything experienced by another. We can try to empathize, but we can never truly know what another feels or thinks.

There are two posts in particular that have had me thinking about this. The first one was from ME at We Are What We Repeatedly Do called, Pain Olympics. She was talking about how pain is unique to the individual and all pain is not equal. She is right. All pain is unique. The second one was from DD over at Punch Drunk with a post called Dead Bird — Now for the Dead Horse talking about how secondary infertility hurts just as bad as primary infertility. She’s right, too. Nobody knows what pain is in someone else’s heart.

I’ve seen this in the food allergy community as well. A certain feeling that those who fit the Top 8 get all the respect and treatment. If your an allergy sufferer from a food that isn’t on FAAN’s magic list, well, you are out-of-luck. Even within the group of Top 8 sufferers, I have seen the soybean allergic tell the peanut, egg, and shellfish allergic how lucky they are because soy is in everything. Then the non-Top 8 corn allergics point out that soy is so much easier because it is at least labeled.

Interestingly, even though my journey with ovarian cancer has just began, I haven’t seen the same degree of The Pain Olympics with cancer patients. Cancer just sucks. The thing is, it is still there. There is a feeling among gynecological cancer victims that everything is about breast cancer. All the literature, all the ribbons, all the events seem to be about breast cancer. In private, I have even heard non-gynecological cancer patients express irritation at the the emphasis and focus breast cancer gets.

Now this isn’t to say that any of the emotions felt by any of these people is not valid. Emotions are valid. Emotions are felt without logic.

In primary infertility, there is a death of one’s genetic line. Sure, you can, in some cases, choose alternative routes to parenthood – but not all routes to parenthood are open to all people. For some, childlessness is a permanent state that was never chosen due to outside influences. That, of course, is a post for another day. Even if one is to move on to donor, surrogacy, or adoption, the genetic line that you were trying to propagate is no more. And, at a very base level, that is something to be mourned. Those who have a living child do not experience that loss. Does this make secondary infertility any less painful? Not for those in its throes. It does, however, make it completely different.

Then there is the allergy world where a lot of pretenders like to live. I’m sorry, celiac is not allergy! Allergy is defined by the fact that it can unexpectedly kill you suddenly. Even a mild allergy can suddenly become life-threatening and the doctors don’t know why or how that happens. They have a multitude of theories, but no concrete knowledge of that part of the process. The infighting among the allergic – fueled by corporate sponsored non-advocacy groups (FAAN) – does not help matters either. Interestingly, FAAN actually encourages the divide between the Top 8 and the rest of the allergy community. They have even told those who are not allergic to the Top 8 that their allergies are rare – though there are no well-done, peer-reviewed, non-corporate sponsored studies that have concluded this. Does this make those with the Top 8 allergies less important than those with non-Top 8 allergies less important? Or vice versa? No. Both are important and the infighting doesn’t help anyone.

As to other food related diseases such as celiac? Yes, they are painful and deserve to be researched and recognized more often than they are. Food intolerance should not be ignored. It is important, however, to not conflagrate the different food-related immune diseases as this gives doctors and the general public an excuse to ignore the real problems. Celiac can cause a long lingering death with infertility thrown in. This does not minimize the pain it causes as the food industry and public health officials don’t seem to care one wit about any of us. We need to stop comparing and one-upping our pain in order to get the food industry and public health officials to take us seriously.

Finally, the perception around breast cancer getting all the attention. Right now? They do. It is because they have survivors in numbers and breasts are easy for the public to think about. How many people really understand what an ovary or a colon or a cervix or pancreas does? We have horrible health education in American schools. The vast majority of people have no idea what anything besides a vague idea of what any of their organs do. Most people don’t even fully realize that their skin is an organ! How can we expect them to understand about cancers in the organs they don’t see and think about when most of us don’t speak out and talk about it? Many people don’t realize that cancer research is in need for the less common cancers. They really believe that by giving to one cancer charity they are helping out all cancers. They don’t really understand that cancer is not one disease. Heck, even ovarian cancer is at least 3 different diseases – and there is growing evidence that the epithelial cancers may actually be 4 discrete diseases in and of themselves. How is The Pain Olympics of “they get all the attention and we get none” helping?

Interestingly, my DH brought up The Pain Olympics unwittingly with mention of a post on The Daily KOS about artificial insemination. People were sharing their own painful stories about family-building and he was sorely tempted to share our story. When he told me this I laughed and told him he just entered the world of women and The Pain Olympics. His perception is that everyone who has it worse than us has stopped blogging. (I know this isn’t the case, but understand his feelings.)

Now, does anything I say above invalidate the need to sometimes vent about how badly you hurt and how someone else has it so much easier? No, not at all. We all have pain. Each bit of pain is unique to us and is just as valid as anyone else’s pain. What we feel is what we feel. Heaven knows I have had my days of thinking that I must have won The Pain Olympics. Let’s see, get the food allergy that nobody believes in (corn with multiple other allergies (food, drug, and environmental) – recognition of this allergy has gotten much better in recent years); find out we are unable to have kids without IVF to get pregnant and have a miscarriage at 19 weeks; gear up to do another IVF cycle only to find Stage 1c Ovarian Cancer with a Grade 3 tumor that means hysterectomy and chemotherapy. Does this mean I win?

In One Week It Will Be A Year

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How strange to be starting chemotherapy for ovarian cancer only a week earlier than the first anniversary of my miscarriage. The morning I saw the blood that told me the ultrasound really had been right, even as I had numbly gone to the ladies as the tech pretended nothing was wrong before looking one last time, I knew before she told me.

All I remember thinking was, “It’s dead, get it out. I can’t carry a dead baby inside me.” For 19 weeks I had carried the fetus that now lay wasting inside me. At this point, there were only two realistic options, inducing labor, or a D&E. Inducing labor may not have completely rid the uterus of the remains, a D&C might have had to happen despite.

To me, the idea of being hopped up to deliver a dead baby seemed nothing short of torture. And, I was lucky since it was before 22 weeks. In the backwards state of Michigan, there is no other option past 22 weeks. It doesn’t matter that the fetus is dead. All other options are illegal despite some of them being safer. The legislators who passed such heinous legislation are guilty of misogyny as far as I am concerned, and I would not want to be them when they face the Judge of us all.

The fetal tissue was tested and came back as normal. A perfectly normal fetus had died. I wanted answers and sought out Dr. Professor as a hematologist. It turned out I did have two thrombophilias. I had railed to be tested prior to doing my first cycle, but no one took my concerns seriously despite a family history of miscarriage and stillbirth. (And, yes, this still angers me to some degree. The anger only mitigated by the fact that they all assumed first trimester miscarriages, never bothering to ask when the miscarriages had occurred – all in the second trimester.)

I had hoped that the next time I saw Dr. Professor it would be to manage happier news. But, instead, I start chemotherapy for a disease that has forever robbed me of the opportunity to carry a child to term. Forever is gone the ability to build a family without lawyers and courtrooms and social workers – and all the expense that implies.

Each dream I have ever tried to build has been completely destroyed by things outside of me. I know there is no rhyme or reason to why things happen. They just happen.

It is only cruelty to say to someone, “It is meant to be,” or “Everything happens for a reason.” They say those things only to comfort themselves – knowing or not, their words just hurt the ones they are directed act. So, if you ever feel yourself starting to say something like that to someone, STOP! You will only be adding to the pain. There is no “meant to be” and, no “reason.”

It is odd that not only is it so close to the one-year anniversary of my miscarriage but I also get the cancer with the treatment that has a very high risk of allergic reaction. If I truly thought there was a “reason” the only reason I could come up with would be that God/The Universe/Fate/Whatever hates me.

After working in a field with abused children for a short time in college, I already thought that if there was a reason or a “meant to be” then God/The Universe/Fate/Whatever was the cruelest bastard to ever exist and deserved nothing. The only way I could reconcile it was to know that intervention is rarer than a yellow sapphire and only in the most dire circumstances – like when the human race was about to blow itself up.

I can understand why many former religious become atheists. It is a well-reasoned thought process that takes them there. I’m not there, but, my belief in a mostly non-interventionist God has been pretty much confirmed. And, nothing short of an impossible miracle will change my mind.

Up – Not Seen Yet, But Some Reviews Disturb Me

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I won’t be able to see Up until it comes out on DVD because I’m not going to commit suicide by popcorn going to a movie theater.

Why are so many mommybloggers saying a scene about miscarriage / ectopic pregnancy (more likely) is inappropriate for kids? I grew up knowing about miscarriage and stillbirth. It prepared me better than many in the blogosphere to deal with infertility – no matter how much I seem to rail.

This unwillingness to expose children to death, grief, and all it encompasses tells me a lot about parenting styles today. Trying to protect your children from reality never serves them well as they grow into adulthood. They will find themselves blindsided by events they are unprepared for.

The reviews that say how inappropriate this is for children just scream that infertility and miscarriage/stillbirth must be swept under the rug never to be seen or spoken of. Guess what? They are real and they happen. They happen a lot more than most people are comfortable talking about.

I have role models most people don’t. I get that. There are days I believe my family is from Mars. They are just from Appalachia – and not, for the most part, radical right wing religious nuts. I read people talking about how hard it is to talk about death to their kids and remember my adult relatives arguing over reincarnation, heaven, and nothingness. I also remember them arguing over who got to be buried in which cemetery plot in the family cemetery. I never realized how different that was before now.

I grew up knowing that my female relatives had had miscarriages and stillbirths and pregnancy does not mean a baby is coming. It is such a disservice to today’s children when we aren’t honest about it. And, there are age appropriate ways to be honest.

Pretending infertility and miscarriage doesn’t exist just feeds into the hatred that many feel towards those who suffer from this disease. And, make no mistake, there is a hatred that is almost palpable from some sectors of society. A sort of, “how dare you have that problem and expect us to respect you in any way.”

Think about it. Think hard. What is the real reason you don’t want your child to know about infertility or miscarriage? It says more about you and your own insecurities, prejudices, and values than you think. What it says is not very complimentary.

ETA: No one with common sense takes a child under about 8 to a PG movie, preferably 10. At least, that is how the MPAA people think about that rating.