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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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.

DIY

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About two weeks ago, I looked into the living room and decided I didn’t like the brick fireplace very much.  My room is starting to come together, first with a light, sky blue paint for the walls, then a salsa red couch, a painting that my maternal grandmother bought years ago and I inherited and re-framed, as well as the rugs and throw pillows.  It’s a north-facing room and I love the way the colors pull the limited outdoor light into the space.

I knew we did not have the time or money to redo the masonry and I’m not a huge fan in most instances of opaque-painted brick (I’ve seen a few examples where it goes right but wasn’t comfortable with the high probability that it would go wrong).  Enter whitewashing: it lightens the brick but leaves the variation and texture intact.  I spent a lot of time browsing DIY and decor blogs and sites, figured out a general plan, and tried to figure out a time to complete the project.

Then, one day, I randomly decided to go ahead and prep the area with tape and tarps.  I’d planned to just do a test strip, but about two hours later, sent Arthur a text message with this picture:

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I may have gotten a wee bit carried away.

So that evening, I finished the brick and painted the first coats on the mantel.  By the end, what had originally looked like this:

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Instead looked like this:

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I’m still figuring out how to arrange everything on the mantel and such, but it really does brighten the room considerably.

It’s weirdly therapeutic to create a space for myself after so many years living in apartments and rentals.  It’s also a huge change to start and finish a project where I have a fair amount of control over the outcome.  I hadn’t realized how much the randomness of infertility treatments and the NICU (and the corresponding lack of control) had messed with my mind over the years.

Taking joy in creation is a wonderful new feeling.

This post is a part of Microblog Mondays.  To read more or participate yourself, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

 

Pondering

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I’ve found myself reading mystery novelist Louise Penny a lot lately.  When the news and the world is horrible and dark, her novels are calming, a refuge of sorts, just like her fictional village Three Pines that can only be found by those who are lost.  Penny’s novels don’t deny the darkness, nor do they minimize or turn away from the ugliness found in human nature.  Penny does, however, present an alternative vision of genuine kindness and deep determination to do right in the face of unspeakable injustice and crimes.

Last week, Loribeth at The Road Less Travelled wrote a lovely piece on how we teach people to suffer (she gives a wonderful answer).  It’s been in my head for the last week because it is such a difficult, pertinent question.

As I was finishing up one of Penny’s novels and reading the acknowledgements section, I was struck by what Penny wrote of her own life during the time she worked on the book: “Michael [her husband] has dementia.  It has progressed, marching through our lives, stomping out his ability to speak, to walk, to remember events and names.  Dementia is a marauder, a thief.  But every hole it drilled has been filled by our friends.  By practical help and emotional support.”

It is the final part of her thanks that took my breath away: “I wrote A Great Reckoning with the peace of mind that comes with knowing I too am safe and loved.  And not alone.”

If I had to give an answer to the question of how to teach suffering, Penny’s words in the face of slowly losing her beloved husband are the best I could manage.  Create community.  Help find a way to let people know that they are safe.  Loved.  Not alone.

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