‘Bittersweet’ Isn’t Quite The Right Word, But It’s The Closest Thing I’ve Got

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We had a marvelous trip for a family wedding recently to New Mexico.  The whole thing went remarkably smoothly, the airline staff was lovely, and seeing all my aunts/uncles/cousins was a great deal of fun.

One of my cousins has a strange sort of resemblance to my brother.  I say “strange” because my cousin and my brother have/had completely different coloring (one’s a blue-eyed strawberry blonde, the other dark hair/eyes) and completely different heights.  However, there’s something, because I’m not the first to notice it.  My grandmother used to mix them up at times and multiple family members have remarked on the resemblance over the years.

At the reception, my cousin was dancing with my younger daughter, who was just loving it.  Watching him swing her around as she giggled loudly and yelled “more” was incredibly precious and absolutely wonderful.  He’s really good with kids as well as a lovely person and it was fantastic – I’m truly glad to have him (as well as my other cousins) in the family.  As the oldest by a decent margin, it’s great fun to watch as they grow, find careers, get married, and embark on their adult lives.

I also had this incredible stab of sadness.  Just for a split second, my brain played a trick and saw my brother there.  The memories that I usually keep firmly stowed came flying out so fast that I had to look away for a second, take that deep breath.

I know I’m not the only one with these moments – the ones that are so very wonderful that you’d never give them up, that you’re so grateful to have, but that also pierce you right to the core because they’re such powerful reminders of what you’ve lost.

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

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“And”

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Content note: pregnancy, children, loss – none recent

This weekend, we tore up some of the scrotty grass that’s never grown well next to our patio in the back and put in hostas.  I pulled out the dead hydrangeas from the back bed and planted shade loving coral bells.  We went to visit college friends and as we sat, I had one of those moments that might be called transcendent or even holy, where for just a second, everything was right with the world and good.

The new life, both literal and figurative, was all around us.

I came home, checked my calendar, and realized that it’s not all that much longer until my saline infusion sonogram for this final transfer.  And before I knew it, this morning I was ugly crying, the one that isn’t a couple of crystal tears decorously sliding down the cheeks, but the red-faced, sobbing, snotty Kleenex filled kind.

That’s life, though, isn’t it?  At least after a certain point?  Where the most extraordinary exists among the prosaic of every day and the deepest, darkest muck that can be dragged up?

I am so incredibly, amazingly thankful for my girls.  And I am so terribly sad that I never got to meet the three that died and were miscarried early, long before they truly lived.

I honor the truly ordinary, uneventful pregnancy I got the immense privilege of experiencing.  And I grieve the long weeks of waiting, of fertility treatments and IVF, of hope mingled with sadness, of ultimately having three others over far too early.

I get the loveliness of watching my older daughter survive and now thrive.  And I mourn that she lost the last weeks in pregnancy that she should have had, that she went through so many painful procedures, that we were separated by plexiglass walls and nights apart at the beginning of her life.

I can’t even express how much gratitude I have to see the girls treasuring each other and also fighting – as siblings do.  And I can feel my heart breaking again and again and again that my sibling is gone, that a person I held as he came into the world left it long before me in such a terrible, senseless way.

I hold my dear ones close, their precious selves tangible and messy and wonderful and alive.  And I cry remembering the unnatural coldness of my brother’s still face, the benediction of viewing him in death, the slight smear of blood that transferred to my hand when I put it on his cheek.

I am fiercely glad for my marriage and the love my husband and I get to share every day.  And I mourn the things we have both broken over the years, some of which are still being repaired.

I am grateful for the chance to complete this final cycle, to close out this particular road, to know that no matter the outcome, I am truly fortunate and ready to live this good life I have.  And I am anxious, struggling with the months of waiting in the lead-up, dreading some painful procedures, and worried about the potential for more hurt.

For the last several months, I’ve been veering back and forth between the extremes, saying how I’m fine (true) and FINE – F*cked Up, Insecure, Neurotic, and Egotistical * – (also true).   It doesn’t sum up neatly, the pros and cons on the paper don’t cancel each other out.  They’re all true, all a part of what poet Mary Oliver termed “your one wild and precious life”.

I am, without a doubt, in today’s parlance, a hot mess these days.

And…it’s an absolutely beautiful mess as well.

*credit to Louise Penny

This post is a part of Microblog Monday.  If you want to read more or add your own, please head over to Stirrup Queens’ blog.  Thanks to Mel for originating and hosting.  

The Space

If you have ever spent time in a hospital, you will detect a rhythm.  Under all the bustling of the doctors, the nurses, the respiratory therapists, the entire infrastructure of acronyms that keep the thing running, there is a quality of silence, stopped time as people wait.  Even in the direst moments when everything is moving at full speed, there are pauses – waiting for lab results, specialists, OR rooms to become available, 30 seconds here, a breath there.

I didn’t really understand that rhythm until I became a patient myself, an object of all the bustling as opposed to performing it.  Sitting in the space, waiting, is hard, especially when you know that the result, the consult, the surgery, could change everything.  I often filled the spaces with books and blog posts and articles.  It’s strange how book or words can become a sort of friend in those places, buoying my spirits or just holding the space with me and affirming the mixed emotions in those moments.

Waiting was what I was doing in spring of 2014 after an unexpected result from my FET.  Pregnant but with far too many worrisome signs for confidence, Arthur and I had to decide whether or not to go ahead with a long-planned trip to attend a writer’s festival at our alma mater.  Several authors I admired were on the schedule to speak, we’d shelled out the money for tickets, hotel, and time off.  My RE gave his blessing to go ahead since we’d only be a few hours away and I knew where to go if the symptoms became more concerning.  So we went, hoping for a distraction from the seemingly interminable wait.

It was definitely the right decision, as hard as it was to make at the time.  I listened to lectures by James McBride, Ann Lamott, and so many others.  I went to the English department reception where I smiled, listened, reconnected with people, and shared stories.  All while simultaneously gritting my teeth as I’d feel the blood seeping out and the panic rising, then be blessedly inspired and challenged by new words, new books to read.

That’s how I wound up in a session with an author named Rachel Held Evans, who wrote a blog (and books) on faith, Christianity, and wrestling with (and eventually leaving) evangelicalism – a process both Arthur and I were going through, though in different stages -as well as a heartfelt and surprisingly funny second book on the meaning of “biblical” womanhood.  Arthur and I had read the book and had some good discussions.  After the session, there was a meet and greet and I told her how much I had enjoyed the book and admired her openness writing about faith, life, and menstruation.  I came closer than I want to admit to bursting into tears and confessing that I was really excited to be here but also probably going through a miscarriage and that I was really grateful for some of her writing, that the presence of her and these other authors had made this waiting just a little better.  Thankfully, my sense of manners and decorum kicked in to save me from serious awkwardness and oversharing, but I also suspect she would have been very kind.  The moment ended, we moved on.

One of her books kept me company a year or so later in the NICU as I waited beside my daughter’s incubator.  Arthur and I read it aloud as we put our tiny baby on our chests, sleep deprived, and needing healing words.  Her words kept me company in the empty space when my brother died.  Her words again encouraged us when we walked away recently from the denomination that married us and baptized both our children and were there for us during infertility and the NICU after a decision made at the denominational level to further exclude our LGBTQIA+ brothers, sisters, and non-binary in faith that Arthur and I found cruel and wrong.

Rachel Held Evans died on Saturday, May 4 after a sudden illness that led to complications at the age of 37.  It is for the people who actually knew her in her real life to mourn her in that intimate, deep way that comes with relationship and they are the ones that are truly bereft in this moment.  My heart aches for them as they move forward without her daily presence and grieve her great loss.

As simply a reader of her books and not someone who knew her personally, I’m just grateful for her words and quite sad that the lovely and luminous person behind them is gone from this world.  Those words held my hands and abided with me in some awful spaces.  They are and were a source of presence and balm.

While the many articles and obituaries have quoted Rachel’s final blog post on Ash Wednesday that is unexpectedly apt and poignant in the wake of her passing, the words from her book Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again are ones I remember now and as a fellow reader they resonate deeply: “I know I can’t read my way out of this dilemma, but that won’t keep me from trying.”

#BecauseofRHE

Responding to “Stuff People Say”

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Recently, I had the opportunity to go to a lecture by Dr. Alan Wolfelt, a nationally known speaker and author on loss, grief, and mourning.  I picked up the ticket at my suicide loss survivor’s group and played around in my head with the idea of going for a bit, but I’m glad that in the end, I opted to go.

Wolfelt related the story of being at his own mother’s funeral, sobbing, and hearing someone say “well, he’s a nationally known expert on grief, but he’s not holding up so well”.  It can be hard to mourn in a culture that expects an almost immediate resolution of the outward expressions of grief.  A few decorous tears in the days following a loss, but after that, calm, stoic acceptance is far more acceptable.

One of the best parts of the talk was when Wolfelt tackled the topic of “stuff other people say” and got into what he called the “buck up” messages.  These would be statements like “well, you had him for 38 years of marriage” or “at least she lived to be 89 years old”.  I’m sure anyone who has been through infertility/loss can add a few more to that list: “at least you know you can get pregnant”, “hey, you can sleep in/go to a movie/travel since you don’t have kids”, or “you have a good marriage/job/life, focus on that”.

Because I am a bit cranky on the inside at times, particularly when on Lu.pron or other hormone injections, the response in my head to those sorts of statements often ran along the lines of a rude, anatomically improbable suggestion.  My outward response was usually to smile weakly and change the subject.

However, I appreciated Wolfelt’s suggested rejoinder to these sorts of statements: “True, but not helpful.”

It’s very possible to feel gratitude in times of loss or grief for the good things in life.  But having plenty to be grateful for doesn’t necessarily mean that there’s no room to grieve a loss and feel/express the emotions associated with loss.

This post is a part of Microblog Mondays – please go see Stirrup Queens for more or to participate!  Thanks to Mel for originating and hosting.

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.

Those Ads

Reading the other day, I came across this article on Slate about ad algorithms, grief, and social media (TW for stillbirth).  Basically, it explores the phenomenon where, post loss, people are still bombarded with ads for baby or pregnancy items when they go online.  It also has the FB shortcut to hide some of these ads but less advice about the vexing problem of FB’s tendency to “celebrate” anniversaries of particular posts.

When it happened to me, I was pretty sure I wasn’t the only one who had it occurring.  I can vividly remember getting baby ads after my first miscarriage because I’d spent time looking up pregnancy-related websites.  It sucked, especially in those first few days after arriving home from the hospital post D&C when I was physically and emotionally achy.

My second loss was a little less problematic in terms of the ads – mostly because I had known something was wrong from the start and my searching had been confined to things like “ectopic pregnancy symptoms” and “really low beta HcG” and “pregnant but bleeding”.

The one that really wrecked me, however, was after E’s birth at 28w4d when I kept getting ads for maternity clothes while she was in the NICU.

The Slate article goes on to talk about why there aren’t better algorithms to prevent these triggering ads: “The real problem is that there’s no quick capitalistic incentive for Face.book to do the work of sorting ads or pictures for you.  As one grieving woman told the Australian website…’There’s no money in miscarriages, obviously.’”

Having walked through infertility and miscarriage, I can’t help but think, as do the women featured in the article, that there really does have to be a better way.

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.