Step, Step

We take everything one day at a time these days.  I’ve heard that as advice a lot over the years (and mostly ignored it), but now it’s all but impossible to do anything else.  It’s strange to see our normally bustling calendar stripped bare of notations, just the date in each square. We’ve been listening to the Frozen 2 soundtrack in our house and one of the songs, titled “The Next Right Thing” has a resonance it’s impossible to miss right now:

Take a step, step again

It is all that I can do

The next right thing.

In a moment I’ve been dreading since the news broke about the Life Care home in Seattle back in February and I more fully began to understand what we were dealing with, my grandfather passed away last week, Covid-19 the most likely cause of death.  The staff at his nursing home took great care of him and for him and I am grateful for them and their good work.  We grieve our private loss, but I know we are also grieving in a community that extends from Italy to Spain to China, across the United States, around the entire world as the virus grimly marches forward.  Friends have lost family members or had relatives seriously ill.  Others are laid off or furloughed and worried.  Still others are parted from living loved ones that they desperately miss.  So many unique losses for so many people, so much collective sadness.  I haven’t decorated the plain wreath I hung on our door at the start of Lent or put up flowers to replace the bare branches in my vases.  No matter what the church calendar may say, the light has not burst forth yet in this season.

And with the dawn, what comes then?

When it’s clear that everything will never be the same again…

Yesterday morning, when Arthur got ready to leave for work, the car refused to start.  This was not a total surprise as we knew the battery’s getting old and we’re trying not to do too much with it since we know we’re going to most likely be buying a new vehicle in the fall.  With no time to try to jump it right then, we hustled everyone into the other car and I drove Arthur to work.

It was the most novel, lovely thing, just going out and driving an essential 30-minute round-trip.

The route to Arthur’s work is fairly scenic, which helps.  There was a heron wading in the marsh and the sun shining across the waters.  After weeks of not leaving the house for days at a time other than work and picking up groceries every once in a while, though, it was such a strange, pleasant feeling to drive further than my extremely short commute.

It’s funny how these little events that I barely would have noticed in The Time Before are taking on such significance now.  Sitting on the porch swing as the weather gets nicer has become a welcome break from indoors.  Having a conversation with a neighbor across the yard and safely socially-distant is wonderful.  We watch the birds at our feeders, mostly goldfinches now.  There are also some events that never would have happened in The Time Before: we got to watch our local Air Force wing take the fighter planes for a flyover to salute the hospitals and all the healthcare workers.

We are – like so many others – okay and also not okay.

We stay home.  Go to essential jobs.  So far, all healthy.  Wait.

But break it down to this next breath

This next step

This next choice is one that I can make…

The next right thing.

 

Truly Amazing

microblog_mondays

I keep seeing a lot of graphics and such popping up about doctors’ and nurses’ service right now, which is lovely.  I’m happy to see more and more acknowledgement of hospital/nursing home housekeepers and laundry as well as cafeteria/food service, incredibly important and often very unseen groups of workers.  They work beyond hard and a huge amount of infection control in facilities comes down to what they do on a daily basis.

One group of workers I’ve seen overlooked at times recently is the respiratory therapists (RTs).

I’ve been incredibly privileged to work with the most amazing RTs over the years, both from a professional standpoint and from a personal one.  They’re the ones adjusting ventilator settings, checking endotracheal tubes, monitoring oxygen settings, checking tracheostomies, setting up hi-flow systems, and doing breathing treatments – plus about a million other things.  They were the ones in NICU who were adjusting c-pap, checking and adjusting E’s hi-flow settings, finding flow meters that could give the tiniest liter flows as we weaned her off, and generally checking her ability to oxygenate properly.

In short, they are awesome.  Absolutely necessary and totally key in the fight against a virus that is hugely a respiratory issue.  Really, there are not enough thanks for everything they do.

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

A Slow Burn

One of my more visceral memories from childhood comes from when I had chickenpox.  Age-wise, I’m among the oldest Millenials and I got it before the vaccine was widely given.  Mostly, what I remember is the incredible itching.  I had gotten a full-blown case, spots everywhere with fever, but no major complications.  “Don’t scratch,” my dad told me.

“But it ITCHES!” I wailed.

“You don’t want to get infections and scars, especially on your face.”

“I DON’T CARE IF I GET SCARS!”

“You will when you’re 16.”

As I grew up, though, I read more about diseases like polio (author Peg Kehret’s Small Steps: The Year I Got Polio is a well-written, YA-level account) and mumps and measles.  I shivered at the horrific accounts of the Spanish Flu and did high school reports on the Black Plague.  I was glad that I never had to experience them, and even as my belief that medical science could conquer almost anything faded quickly, I felt fairly secure.  I rejoiced when the girls got their chickenpox vaccines, that they wouldn’t have to know even a week’s itchy misery, let alone the more serious complications.

~*~

After E got home from the NICU, we were under quarantine for a year.  I was allowed to take her to medical appointments and occasional shopping expeditions (where I kept her covered in her car seat and sanitized virtually everything we touched).  Arthur went to work and did everything he could to stay away from illness, as did I.  I had an elaborate routine post-shift of changing at work, washing any exposed skin from my shift, my scrubs sealed in bags and washed separately with the washer bleached afterwards.  E and I didn’t go to church, and after his second job ended in the early fall (before cold/flu season), Arthur didn’t either.  We didn’t go to gatherings (with the exception of my brother’s memorial service, where the worry E would catch something added to the general awfulness of the situation).  I used to take E for walks in the fresh air when it was nice, social-distancing ourselves by at least 3 feet from other people before the term entered the lexicon.  We had hand sanitizer stationed all around the house and my hands were often dry and cracked from washing.

All this to say, these precautions aren’t totally new to me.  The fear isn’t new.  The isolation isn’t new.

It’s a deep breath and the slow burn of anxiety as we wait in ways I never thought we’d have to do again.

~*~

In my house, we are all low-risk as possible for the serious complications and doing everything we can to be responsible citizens to prevent the virus spreading/complying with social distancing.  I know the virus can be severe in younger people as well and we are not by any means taking that potential lightly.  Strangely, I’m less anxious about working in health care than I would have thought – but, then, I’ve known since long before going to nursing school that communicable diseases were a risk I had to assume if I chose this field.  Obviously will be following all guidance closely and extremely careful complying with all personal protective equipment/isolation requirements (as always).

I am definitely worried about my parents, friends, my last surviving grandparent, all the elderly/immunocompromised and what happens next.  Reading about Italy’s current situation is almost overwhelming in its awfulness and the decisions that I suspect we will shortly face in many other places.

I know that experts have long modeled and predicted pandemic scenarios, but in day-to-day life, it’s felt easy to rest secure.  There are so many things to worry about just in a normal course of existence.  This one really didn’t make the cut in my head.

Yet here we are.  I gave blood on Monday – one tangible thing I could do as someone who’s eligible, currently healthy, and has a blood type in high demand.  Now we take the precautions recommended by the experts, comply with public health recommendations, check in with people by internet/phone, and wait.

Waiting, as I think we all have experienced in various ways, is far tougher than most people give it credit.

That’s My Story and I’m Sticking To It

In my 20s, I attended a fair number of baby showers and pregnancy/childbirth-centric events.  It’s like a bad take-off of the Jane Austen line, “It is a truth universally acknowledged…”…that if you are a married woman in your 20s, you are interested in conceiving/pregnancy/birth.  As someone who was at best ambivalent about having babies (oh, the irony) at the time and more focused on going back to school, I found this emphasis frustrating.

When I arrived at 30, suddenly in a tearing hurry to have babies and getting into increasingly expensive, painful interventions that seemed to fail at every turn, the amount of social pressure turned into something far darker.  While there are areas of the US where women in their 30s having first babies is the norm, where I live, I was one of the oldest people in my peer group married with no kids.  Most of my friends have older kids, including a kid who is a teenager currently.

In the throes of infertility, I quit going to baby showers.  I stayed out of heavily female spaces because it felt like pregnancy/childbirth stories came up a surprising amount as a bonding activity.  I figured one day I’d get wherever “there” was to feel emotionally secure enough to start attending again.

I had the kids.  And then something strange happened: I still don’t belong.  Not really.

There’s more room for sharing of “less than optimal” experiences now than perhaps there once was, but there’s still a pretty heavy social price for relating certain parts of stories.  I’ve personally primarily experienced this in regards to miscarriages/pre-viable PPROM/NICU – so that’s what I’m writing about here – but I also know this happens in some very difficult ways in the infertility community as well for people for whom treatment doesn’t work or adoption doesn’t happen (because this isn’t my story to tell, here is an excellent blog post on that subject, as well as here).

The first time I naively waded into a discussion after my older daughter was born, I simply spoke part of the truth: that I’d been in the hospital for quite some time after my water broke at 21 weeks, the doctors thought the baby wouldn’t make it, I somehow stayed pregnant until 28w4d, and E was born, spent awhile in the NICU, and was now doing pretty well.  Never mentioned the infertility/IVF/miscarriages or the messiness of the subchorionic hematoma/hemorrhages.  I actually watched someone’s mouth drop open.  People weren’t sure what to say.  There was some shuffling and looking down and the subject got changed.  It wasn’t the last time this happened.  Eventually, I started being a lot quieter during these conversations.

“It’s like I’m Stephen King giving a speech at the romance writer’s convention,” I once quipped to Arthur.  I’ve also heard more than once complaints about how people love to tell expectant women the worst stories about infertility/pregnancy/childbirth and scare them.

Obviously, there’s an element of knowing your audience here and being polite or sensitive.  I don’t tell anxious pregnant women my story because of this, because they’ve got enough concerns going on.  There are times that people can’t handle certain stories and I get that.

But other times, there’s an element of silencing.  Stories that are too uncomfortable and too taboo to tell out loud.

As I was reading Sarah DiGregorio’s book on prematurity Early, a passage helped crystallize the vague sense of not-belonging I’ve felt at times: “I also didn’t want to be the bearer of dark information, and I couldn’t imagine how I would participate in ‘normal’ conversations about my baby.”  DiGregorio also notes that “The emphasis on ‘natural’ birth that is meant to be empowering can be painful for those of us who needed every unnatural intervention to get our babies (and/or ourselves) out alive.”

I hear that.

I know that I’m (thank goodness, as I wouldn’t wish this on anyone else) an extreme outlier to plenty of statistics.  Of people who struggle with infertility,less than 5% go on to use IVF according to the ASRM.  Subchorionic hematomas are one of the most common reasons for first trimester bleeding, but very few are anywhere near as problematic as mine turned out.  Periviable PPROM affects only around 0.4% of pregnancies.  While preterm birth is an enormous problem in the US, only a little less than 2% of all births and around 16-20% of preterm births are before 32 weeks’ gestation.  In other words, my experiences are definitely not the norm. I don’t think policies or procedures or public health should be based around women like me.

But the suggestion that anyone can (fill in the blank: get pregnant without intervention, get pregnant with intervention, prevent a miscarriage, give birth without certain interventions, prevent a c-section, etc.) has the weird effect of sort of erasing people like me who don’t fit into those narratives that we are ultimately in control.  At times, I’ve found it also can have the effect of almost turning my story into a spooky fairy-tale, the thing that lurks in the shadow, the uncomfortable specter at the feast.

It’s a tricky thing: I want women to be empowered to seek answers and have authority over their own bodies, I want to see fertility treatments covered by insurance but not hailed as ‘the’ solution to infertility, I want as many miscarriages as possible prevented but women not blamed for miscarrying, I want to see unnecessary c-sections curtailed and more choices for women but also the understanding that c-sections can be life-saving preserved, I want better public health to help prevent as many pre-term births as possible and also better NICUs/treatments for those that happen anyway, I want campaigns of information that can help people avoid bad outcomes but don’t ‘other’ or shame those that don’t fit or have less than optimal outcomes anyway.  I did nothing wrong and yet so much went sideways for me.  There was no extra prenatal care or information that would have helped me, there were d*mn good reasons I had c-sections, and I get very tired indeed at times of explaining why (fill in the blank) would not have prevented this, the suspicion that I had to have done something to make this happen because surely these things are preventable?

I don’t know the answer here.  I don’t know how we make space and genuine understanding for all of these realities.  Telling stories is a starting place, I suppose.

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

Reading Thoughts

microblog_mondays

I’m still considering a couple of Mel’s posts from last week about reading and diversity.  If you haven’t read them, they’re really interesting and thought-provoking and I highly recommend them.

They got me thinking back to my capstone senior English class in college, where my professor asked all of us to bring a list of around ten books we’d like to add to canonical literature.  We went around the table and at the end, she looked at all of us and said something to the effect of “Wow, a lot of white men.”  Then we talked about the influence of culture and dominant voices.

So I went back and looked through my reading list for the past couple months.

Fiction

  • Prep (Curtis Sittenfeld)
  • Norwegian Wood (Haruki Murakami)
  • Burial Rites (Hannah Kent)
  • Little Disasters (Randall Klein)
  • The Blind Assassin (Margaret Atwood)

Nonfiction

  • Anne Perry and the Murder of the Century (Peter Graham)
  • When We Were on Fire: A Memoir of Consuming Faith (Addie Zierman)
  • Killers of the Flower Moon: The Osage Murders and the Birth of the FBI (David Grann)
  • Squeezed: Why Our Families Can’t Afford America (Alyssa Quart)
  • King Leopold’s Ghost: A Story of Greed, Terror, and Heroism in Colonial Africa (Adam Hochschild)
  • The Blood of Emmet Till (Timothy B. Tyson)
  • Let’s Pretend This Never Happened and Furiously Happy (Jenny Lawson)
  • Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again (Rachel Held Evans)
  • The Trauma Cleaner: One Woman’s Extraordinary Life in Death, Decay, and Disaster (Sarah Krasnostein)

Reading Currently

  • World of Our Fathers: The Journey of the East European Jews to America and the Life They Found and Made (Irving Howe)
  • Sisterland (Curtis Sittenfeld)

Eagerly Awaiting

  • Kingdom of the Blind (Louise Penny)

There’s no doubt that if I look over my general trends, I tend to read more nonfiction than fiction and when I do read fiction, I tend to read fiction by white women (Atwood, Sittenfeld, Kent, Penny).  With non-fiction, I definitely read a variety of topics, but again, mostly white authors even when reading about minority or POC topics.

Definitely time to work on diversifying my reading list a bit more.

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

Pondering

microblog_mondays

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.