Luck

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Ever since I called my RE’s office to set up the series of appointments to lead up to the final transfer, it’s been on my mind a lot.

Like, a lot.  As in a truly ridiculous amount.

I think a big part of it is the unknown aspect to the thing.  I’m truly privileged in the infertility world with my kids and can be happy whatever way life takes me, but the not-knowing part bothers me.  The other part that tends to get under my skin is that – other than showing up and taking medications as ordered – I have no real control over the outcome.

On the spectrum between the laid-back people and the iron-fisted control people, I am definitely a control freak.  Some of this stems from anxiety (as in the diagnosed type).  My brain has a not-so-marvelous tendency towards getting stuck and panic attacks.  I like predictability, stability, and known quantities – and privilege has allowed me some insulation from the unpredictability of life in other areas.  This, I suspect, is why infertility in general has messed with my sense of self so much.

Earlier this week, I ran across an article about socioeconomic privilege entitled The Radical Moral Implications of Luck in Human Life: Acknowledging the role of luck is the secular equivalent of a religious awakening.  Author David Roberts states: “It’s not difficult to see why many people take offense when reminded of their luck, especially those who have received the most. Allowing for luck can dent our self-conception. It can diminish our sense of control. It opens up all kinds of uncomfortable questions about obligations to other, less fortunate people.”

Infertility is nothing if not one giant game of luck.  Diagnoses, lack of diagnoses, economic status to pursue treatment or adoption, one partner or both, what doctors/labs one has access to, the quality/growth of embryos, whether or not those embryos implant, miscarriages, emotional resources – none of these are really factors individuals have control over.  Heck, when pursuing treatment, I know I don’t even have control over when I have to be at the clinic during cycles.

Acknowledging how little control I really have over my life circumstances – and how much good luck has played a role – is a bit unnerving.  Roberts points out in his article that “I get why people bridle at this point. They want credit for their achievements and for their better qualities. As Varney said, it can be insulting to be told that one’s success is in large part a lucky roll of the dice.”

It feels like – given the sums of money, emotion, and time that are in play during treatment – the outcome should be more predictable.  That anyone who rolls the dice (or wants to roll the dice) at anything related to infertility should be rewarded commensurately.

This post is a part of Microblog Mondays.  If you want to read more, head on over to Stirrup Queens.  Thanks to Mel for originating and hosting.  

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Coffee-Mug Philosophy

In my offline life, I’m in the process of some new stuff at my job that changes my workflow and sort of upends my established routines there.  It’s fine, positive even, and it’s something expected/planned but it’s amazing how much energy goes into change and re-configuring my habits.

The other day, these words fell out of my mouth: “It will be fine!  All this upheaval and hard stuff is going to make us stronger, right?”

Ironic, because I really hate that particular cliché.

~*~

I heard it quite a bit throughout the infertility journey: what doesn’t kill you makes you stronger.  I heard it when Arthur went through job losses.  I heard it in NICU.  I’m grateful no one said it too me after my brother died because suicide pretty much flies in the face of that kind of gritty positivity.  But that statement has hovered in the background of most of the big, tough moments of my life.

I think – as with most “sound bite” or “meme-ready” sorts of statements – the reality is much more complex.  I also think sometimes it’s employed as a quick conversation ender or a way to escape big feelings.

There are hard experiences that I feel have made me stronger, mostly those that are designed to break down before building up.  Nursing school sucked.  It was terribly long hours often (getting up at 4:15 am to drive two hours to a clinical site, being there for 8-10 hours, then going home), the studying was a full-time job, and I have never forgotten my first semester lab where everyone cried at least once except for the two students who had been in the military.  It was also truly worth it and the toughness was incredibly important when I got into real world and took my first assignment on a general medical-surgical/telemetry floor.

Some of the job losses for Arthur fall into this category as well.  It was sort of a surprise to me that after Arthur’s first job loss, the sky didn’t fall and we figured things out.  We were really privileged in many ways, but the experience helped me better hone savings plans and recognize that while it was 100% not optimal, it was survivable.

But as far as some of the infertility experiences go?  Being told there was no heartbeat?  Sitting in a hospital bed being told that I was ruptured and going to lose our very wanted baby?  Waiting in NICU for test results to come back to see if E had NEC?  Losing my brother?  No.

That sh*t broke me to the very core.

I mean, there’s a way in which all these experiences have given me a lot of perspective.  Going through all that reminds me on the days where all the little ridiculous stuff is piling up and it’s frustrating that I’ve survived so much worse.  That I will make it through that day.  I’m much better now at differentiating my small life stuff from what constitutes my bigger life stuff and reacting accordingly.  It’s also made me more able to take some forms of tension or frustration in stride, because, well, I can manage.  In that sense, the adage is correct.  Perspective is valuable in life, absolutely.

What the saying doesn’t reflect, however, is that there are some really ugly broken, jagged edges that are still in the process of being smoothed.  It doesn’t reflect the big ways in which these events changed the course, not always for the better.

I started out in elder care as a nursing assistant when I was 19 years old.  I loved it.  I always envisioned myself as a hospice nurse eventually.  I did some clinical time with hospice and felt confirmed in that calling.  Even when I started in the “real world”, I took assignments that would give me experience.

Then infertility hit and I was just so sad.  Conflicted.  Too many emotions running rampant to step back and be in a high-emotion field like hospice.  I put the dream on hold, mentally, and moved forward with a different path hoping to eventually move back that direction.  Then all the losses happened, NICU happened, and my brother died.

Now, I work in an area where I come in contact with the “hard stuff”, but in far more limited doses than a field like hospice.  It’s a good balance, I’m good at it, and I’m happy.

But I still mourn, a bit, that I had to admit that infertility, miscarriage, prematurity, and suicide loss limited me.  Maybe someday, but it will be years and a lot of therapy if hospice is ever back in my path.  I won’t do it unless I know my stuff is fully handled and integrated.

Empathy is another sort of mixed bag in life after everything.  On the one hand, I know these experiences have made me more empathetic in many ways.  I definitely can identify with people’s struggles and have a better ability to be present in those moments.

But it’s also made it far easier – especially when I’m tired, stressed, overwhelmed, or overstimulated – to fall into a pain Olympics sort of mentality or get really jealous.  I don’t think this is true for everyone by any means, but it’s definitely an issue for me.  I’m ashamed to admit that even while I was very happy for my BIL and SIL when they got pregnant, I was positively green with envy that they had gotten pregnant with twins on their first fertility treatment.  It threw me back mentally into every f*cking failed cycle and miscarrying twins on that first hopeful IVF.  I was happy for them but absolutely overwhelmed also at how sad and angry I was for my own losses.  This resolved with time and things are fine in that set of relationships at this point, but it’s not a great quality and one I’m on close guard against.

All the grief has also exposed the fault lines in some relationships and the Awful Things People Say.  After my brother died, it’s been a revelation how much stigma suicide really carries and also how uncomfortable some people are with grief and strong emotions.  Those secondary losses were really unexpected and the reshuffling of boundaries has been painful.

The fall-out also shows up with everything related to pregnancy or conception.  I’m afraid to embrace the idea of this final embryo transfer – even when I know, no matter how things fall out, I will be okay – because the whole thing activates all the panic responses and pushes me back to thinking on all the other memories.  When I was pregnant with M, my OB wound up allowing me to have appointments weekly through the first trimester, until both the risk of pregnancy loss had gone down and I could pick up the heartbeat on my home fetal doppler.  I was having panic attacks I couldn’t get under control, despite knowing I would manage no matter what the outcome.  It was awful and I’m really grateful that my OB was so kind.

And perhaps that’s one other little silver lining to the tough stuff: I’ve had the opportunity to see people step up to the plate as well.  People who have gone above and beyond and helped so much.  It gives me faith in humanity, in the idea that there is goodness out there.  It helps me better identify where I can be that goodness for others.

All this to say: it’s a mixed bag.  What doesn’t kill me has made me stronger and weaker…and panic attacks…and exposed my limitations along with my less than awesome qualities…and brought out some of my good ones.  But I guess that doesn’t fit as nicely on a coffee mug.

Infertility, Stigma, and Reading

Content note: Infertility portrayed in very problematic ways – possibly not the post to read if you’re in a tough place right now.

It’s old news now, but a month or so ago I read the Slate article that has been making the rounds in the infertility community – for good reason, it’s an excellent article hitting up a wide variety of issues and reasons infertility is particularly tricky when it comes to the workplace.  It also gets into how, despite more openness and acceptance for infertility, there’s still a very long way to go.

Since my own experiences with infertility/miscarriage, I’ve definitely noticed storylines or even short bits in books/films/TV relating to adoption/loss/infertility (ALI) far more than I did before.  While infertility is becoming more realistically depicted at times, I’m still somewhat surprised at how often I run across a particular trope that I strongly dislike: that women struggling with infertility/loss are scary.

Perhaps it’s because this came up in two books I read recently: The Alice Network (Kate Quinn) and Daughters of the Lake (Wendy Webb).

The Alice Network is largely about the female spy network that operated during WWI in France, interspersed with a young woman searching for her lost cousin in the wake of her brother’s suicide post WWII.  All the trigger warnings apply on this book both from the ALI perspective (unplanned pregnancies, abortion, loss) and generally (war, torture, Nazis, rape, etc.).  There’s a short bit, however, for a side character that includes infertility.

[Very minor spoiler ahead]

Spy trainer Captain Cameron went to jail because his wife decided to commit insurance fraud to provide for a child she couldn’t conceive.  Her infertility causes her to go to desperate, not entirely sane, lengths.  She conceives and recovers her mind.

[End spoiler]

Honestly, despite how much I was immersed in the rest of the story, this part almost made me put it down because it infuriated me so much.

Shortly thereafter, I picked up Wendy Webb’s Daughters of the Lake, a gothic suspense novel, on sale at some point and finally got around to reading it.  It’s definitely a ghost story, but in a mildly shivery sort of way that I enjoyed (I then promptly picked up a couple of her other books from the library and those descend into terrifying outright horror stories – this one I found much milder).

The novel had a baby/baby loss subplot, however.  Again, the theme of women deranged by loss and not having a child came up toward the end of the book.

Even setting aside artistic license and drama in novels, this Dear Prudence letter headlined “Help!  Sometimes I Worry That My Infertile Friend Wants to Kidnap My Baby” (I would not click over if you’re in a fragile place because yes, this accurately sums up the substance of the letter).  Prudie calls the letter writer’s comment to the friend unkind and gives the letter writer a thorough tongue lashing, but the letter itself definitely displays a truly alarming attitude toward those struggling with infertility.

I am so tired of women struggling to conceive or dealing with loss being portrayed as dangerous or harmful.  Infertility made me feel a lot of emotions.  Sad.  Angry.  Conflicted.  Anxious.  Frustrated.  Jealous.  Certainly these and many more, but while it’s true that I chose not to attend baby showers, disliked pregnancy announcements for the most part, and had to unfollow streams with lots of new baby/child pictures at times, I never wanted to harm anyone.  I never wanted to take anyone’s baby.  I never lost touch with reality.  I never wished that difficulty or sadness would befall anyone.  I’m not going to say that no one was ever disappointed in my reactions or that a few people insisted that I should be visibly overjoyed for pregnant women, but I tried – hard – to be kind and keep my feelings to myself in public.  Mostly because it wasn’t other people’s fault and I knew they weren’t having babies at me.  I just wished it was my turn and that conceiving had been easier (and – not going to lie – highly resented the amount of money we were shelling out for IVF).

This is why I write about infertility, in the hopes that reality will help to dispel some of the more pernicious bits of stigma surrounding this condition.  But it doesn’t help when a scene giving a picture so much to the contrary are popping up in a novel as widely read as The Alice Network.

Budgeting Life

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This weekend, I picked up Dr. Paul Kalanithi’s extraordinary memoir When Breath Becomes Air.  I had bought it on a fire sale as an e-book before Christmas (thanks to this Stirrup Queens post) and when my lunch break rolled around, I thought I’d start on it.

Reading it at two in the morning, just down the hall from the ORs, wearing periwinkle blue surgical scrubs, a vital sign monitor on my desk that I needed to put away after my break made the story more real, and I was pulled in almost immediately.  It was not at all hard to imagine Dr. Paul Kalanithi as a physician, as a neurosurgeon, walking in and issuing his postop orders, doing the usual things surgeons do.

But of course, that is not the whole of the story, nor its most brilliant, poignant part: Paul Kalanithi was an undeniable genius, yes, clearly a gifted physician, yes, but he was also a patient.  The two personas, brought together in one who could clearly articulate the connections, tensions, and even find humor between them are what make this one of the most exceptional books I’ve read in a long time.

Kalanithi’s book was published posthumously and while it is absolutely about dying, it’s about more than that.  It’s about living within limits – unusually cruel tight ones in Kalanithi’s case – but limits are a fairly universal human experience.  I think what I found particularly instructive and lovely about When Breath Becomes Air is its acceptance of human limitation.  Kalanithi accepts that his cancer is terminal and seeks to live within that diagnosis – there’s no talk of “fighting” or being the exception or beating cancer.  Instead, he thoughtfully decides to live fully whatever time he has left.

It’s rare in this day and age where a relentlessly ‘positive’ mindset is stressed and the acknowledgement of the chance that an outcome might be anything less than miraculous restoration of health or a return to previous life is often met with “oh, don’t say that!” to see a treatise like this one.  Even outside of life and death situations, there’s a cultural notion about being able to accomplish anything with enough effort/investment – one with which I know much of the infertility community is intimately familiar.  I think the way this book challenges that is a central part of the appeal, or at least, it certainly was for me.  Kalanithi’s resolution to move forward by grieving his losses, knowing his death will come untimely early, and doing his best to both find and continue in what he valued until that death reads as far more positive than an empty promise to seek a ‘cure’ at any cost.

Personally, when confronted with limitations that truly grieved me, I’ve tended towards anger.  Maybe it’s because sadness and grief seem passive and anger gives the illusion that there’s something I can do, something that with enough force might change the distressing situation (even when I know better).  Kalanithi suggests a very different path.  He interrogates himself to find the values he wishes to cling to within the whirlwind.  And then he does it.  It’s not a denial of emotions or grief or putting a good spin on a tough situation, it’s a measured choosing of response.  “It felt like someone had taken away my credit card and I was having to learn how to budget” he writes.

There’s so much more to consider in the book – and hopefully write about – but that felt particularly resonant.  The next time I must budget my life, I know I’ll return to Kalanithi’s thoughts on doing so.

This post is a part of Microblog Mondays.  If you want to read more, head over to Stirrup Queens.  Thanks to Mel for originating and hosting.

Meditations on Moving

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One of the few authors I’ll spring for straight up (instead of waiting at the library or until I find it on sale) is Louise Penny.  I’ve written a few (okay, okay, probably more than a few) times about how much I love Penny’s mystery novels here.  She’s one of the authors writing today that I really want to meet, though I’ll admit that I’m a little terrified that if I did, in fact, meet her, I’d just fan-girl all over the place and embarrass myself.

In any case, Penny’s latest, Kingdom of the Blind came out last week and I’ve spent the last few days reading.  Yet again, I’m struck by Penny’s ability to get to the heart of life, living, and human emotions.  One of my favorite parts of the books are the author’s note at the end, where Penny writes so evocatively about her own life and struggles.  For a number of years, Penny’s husband Michael suffered from dementia and died in 2016.  Penny has also been open about being a recovering alcoholic and the incredible loneliness, anger, and sadness she felt for so long as well as many wonderful things she values in her life now.

“A funny thing happened on my way to not writing this book,” Penny notes, “I started writing.”

“How could I go on when half of me was missing?  I could barely get out of bed.” She continues.  “But then, a few months later, I found myself sitting at the long pine dining table where I always wrote.  Laptop open.”

I relate to that in such a big way.  While I’ve never lost a spouse, I have lost loved ones, as well as other, less tangible bits and pieces along the way.

It’s hard, losing, whatever that loss comprises.  Especially at this time of the year, when everything seems suffused with traditions and the place at the table seems all the more empty than usual.  When it’s impossible not to remember and the commercials and pictures and expectations are designed to evoke emotions that often I’d rather leave in the background or unexamined.

Sometimes living, moving, feels a bit like a betrayal.  With an ache that has the sharpness of a gunshot echoing from 2015 and holes that rend the threads to keep weaving it all together, it feels impossible to tie the knots and work to keep creating.  To set the empty place and also hold the feast.

That’s been a struggle for me lately, even though my grief isn’t new.  I’ve reached that sort of half-mourning stage, where the sadness doesn’t seep into every moment or corner, but comes out at both expected and unexpected times with a startling strength.

I’m grateful to Penny for not denying the darkness, but also for the joy she takes in how moving forward encompasses her loss: “Far from leaving Michael behind, he became even more infused in the books.  All the things we had together came together in Three Pines.  Love, companionship, friendship.  His integrity.  His courage.  Laughter.”

In so many ways, that’s what I’m seeking.  Not to leave behind, but to hold the love and live.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

When It Comes to the Holidays, “Pleasant” and “Unmemorable” are Quite Underrated

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For a long time, I’ve sort of more-or-less subconsciously and sometimes overtly had a tendency to try to make holidays “the best ever!”  In some ways, this is testimony to a pretty happy childhood where Christmas and Thanksgiving were days to anticipate.  For a long time, we went to my maternal grandparents’ house yearly for Thanksgiving and I used to spend hours staring at boxes around the Christmas tree trying to anticipate what was inside (I was allowed to look but not touch/shake).  In other ways, I think it’s the influence of advertising/Insta.gram/Pin.terest/Face.book.

The thing is, I’ve had my share of great holidays (Arthur proposed to me on December 21, 2002), and also really crappy ones.  With infertility and treatments, I found out we’d need to see an RE in December of 2012 and had a miscarriage a few days before Christmas in 2013.  In 2014, I was on bedrest, bleeding a lot, and the doctors were trying to be kind but also not particularly optimistic about the pregnancy.  In 2015, my brother died in late October and Christmas entailed a huge kerfuffle with my in-laws and in 2017, more in-law unhappiness stuff.

Thanksgiving in the US was this past Thursday, and I have a tendency to get anxious leading into the holidays.  Thursday morning, we headed out, and the holiday was…no big deal.  The food was good, I mostly enjoyed the company, and it was fairly low key for as big a group as was present.

In short, it was pleasant and largely unmemorable, which was lovely.

“Pleasant” gives me a more realistic goal to shoot for and mentally, lets me off the hook for “perfect” or “great”.  It allows for the mixed emotions that accompany this time of the year for me.  It’s okay to be happy or excited when I feel it, but also, to be sad or grieving when those moments come.  It doesn’t have to be a holiday season “to remember” (and it’s also okay to just “take the year off”).

This post is a part of Microblog Mondays.  If you want to read more, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

A Different Mindset

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One of my favorite morning activities involves reading book related topics on NPR.  It’s fun to figure out what to look for at the library and discover new reads that might typically fall outside of my usual bailiwick.

The other morning, I clicked over to an author interview where the headline read “What It’s Like to be Held Hostage by Somali Pirates for 2 ½ Years” (I mean, how could I not click over with a headline like that?).  As I was reading, I came across this statement by the author of the book, Michael Scott Moore:

“On his line ‘Hope is like heroin to a hostage, and it can be just as destructive’

Hope was a cycle, and after a while, it became a destructive cycle. People say, “Well, how did you hang onto hope for two years and eight months?” And the fact is: I didn’t. I learned to live without hope. So having your hopes raised and then dashed every two weeks, which is what the guards tried to do — they would say, “Michael, don’t worry, you’re going to be out in two weeks, or a month” or something — was devastating. It was actually no way to live. And so I had to find a different level of existing. And it turns out you can live without hope. … Any Hallmark-like quotes to the contrary are wrong.

Well, hope and despair are just two ways of approaching the future. I don’t know which philosopher I’m paraphrasing, I think maybe Sartre, but — those are just two mindsets toward an uncertain future. And if you would recognize that, and simply don’t think forward toward the future, and don’t insist on a rosy outlook for the next couple of weeks or months or years, then you can live in the moment. And that’s what I had to learn to do. I would have snapped if I had done it any other way.”

It really spoke to me.  While infertility is, obviously, not the same thing as being kidnapped by pirates, what the author had to say there about hope made so much sense.  That cycle of having hopes raised, then dashed, then raised is a huge part of what makes infertility so tough to deal with emotionally.  I love the idea that, contrary to conventional ‘wisdom’, there’s another way to consider one’s circumstances.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.