Truly Amazing

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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.

One Step at a Time

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When we decided to repaint the finished section of our basement, we knew we had to do something about the steps.  The entire basement was painted a blue-grey that just felt dark in a space with no windows, but the steps were an even darker shade of grey with an unpleasant texture. We tossed around the idea of replacing the treads entirely, but realized fairly quickly that this was going to run us more money, time, and trouble than we wanted to spend.  That left us with sanding and painting.

Steps Before

About halfway through the project.  The original paint felt really dark.

It took us a couple of weeks to get the steps patched with wood filler and sanded.  Then we realized we didn’t want to lose access to the basement for 24-72 hours at a time for painting, so we wound up painting every other step during one round, then doing the second batch (that way, if we were careful, we could get step over the painted steps and still reach the bottom).  It took three coats of paint on most steps and four on a couple to cover the dark grey.  We ran out of paint with one coat on six steps left to go and had to buy another quart.

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Finished with the paint!

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Treads on.

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Sea-glass green risers to match three of the basement walls.

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From the basement, the sea-glass green walls and cream wall visible.

It’s nice to have that project finished.  Next comes saving up and eventually replacing the carpet with vinyl plank flooring, but that will probably not happen until fall.

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

Currently Reading: “Followers”

When I finally came up in the library queue to borrow and started reading Followers (by Megan Angelo), my mind immediately jumped to a technological dystopia I read several years ago called The Circle (by Dave Eggers).  The novels definitely have some similarities: young, ambitious female protagonists, social media manipulation, a backlash, and a futuristic bent where it all goes out of control in ways that explore society’s current use of technology/social media.  Initially, I almost found myself less interested in Followers because of the similarities, but I’m glad I kept reading.

In The Circle, main character Mae goes to work at a social media company representing a sort of mash-up of Face.book and Goo.gle that has forced people to use their real names/identities for the product and keeps going further and further, finally launching a campaign using Mae as the face that insists privacy is a form of theft (if you happen to have seen the movie version, it has an entirely different ending from the book).  In Followers, Orla and her roommate collaborate to make the roommate social media famous, leading to all kinds of issues for them personally and when worldwide events overtake their personal lives, there’s a huge loss of privacy.  Both novels describe a sort of Faustian bargain for their protagonists.

However, there’s a really crucial divergence between the novels that made Followers ultimately more compelling to me than The Circle.  In The Circle, Mae is what I’d refer to as a true believer – despite her qualms at times, she’s a convert, a zealot, and ultimately believes in what she’s selling.  Orla in Followers is far more cynical, aware of what she’s doing, understanding that she’s giving up pieces of her soul in return for pursuing fame and fortune.  That deep, gnawing unease, along with Orla and other character’s ultimate fates, give Followers a certain messiness and emotional resonance that The Circle lacks.

One place I think Angelo really nails an idea is when she talks about loneliness and the way social media can sort of exacerbate it, despite the seeming connection.  At one point, Angelo speaks through Orla, who has a history of painful isolation and a longing for real friendship to describe this: “Every scheme they brought to life together, every drink they shared without wiping the other’s spit from the bottle, every drunk ride home with their feet in each other’s laps – to Orla, it had been everything, an end, but to [other character] it had only been means.”  Angelo masterfully throws in small but realistic details to illustrate the way some of the relationships are a performance, down to the food purchased seemingly kindly but the character it is purchased for can’t eat it, something that would have been considered if the gesture had been truly thoughtful rather than just window-dressing.

Angelo also manages to invoke the way trauma can create a permanent mark on people.  At one point, she writes: “He thinks it is an old story.  But for [character], the story never ends.”  Along with that, Angelo also explores the impact of what it looks like to live with the very real carnage the virtual can invoke.  A moment when one character looks at another and explains that they’ve been attempting to humanize the other character and find some sort of grace had me considering the way we forgive (or don’t) and how we can so easily reduce people to caricatures, stereotypes, or the sum of their virtual profiles – and how social media can sometimes make this far easier.

Ultimately, though, it’s the strange sort of hope Angelo has in humanity that pulled even the clunkier bits of the novel together for me.  As one character puts it, “…she knew, from having a mother who knit, that an experienced purler could change her design, if she just changed her mind in time.”  I really like the idea that a fresh start isn’t necessarily starting over, it’s figuring out how to live a full life with the mistakes and regrets and unfulfilled wishes, changing the design without throwing away the material.

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Content notes for this book, though trying to be vague so as not to spoil: those in the adoption triad may find this one has some tough moments.  Also for suicide.  

Depends On How You Define The Term

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For years, I’ve told people that I am supremely un-athletic.  When I say I’m uncoordinated, I’m not being modest or downplaying.  I just really don’t have a great sense for where my body exists in space (or which side is my left vs my right).  Once, during a softball game, I managed to hit the ball so that it bounced into fair territory but had so much backspin that it flew back up, hit me in the face, and tagged me out all at the same time.  It’s a talent, but not the kind that gets you endorsements and ad deals, more the kind that gets you 15 minutes of infamy as a meme or gif.

I also never had a standard gait.  As a child, I literally skipped just about everywhere and when I did walk, teachers and other students would remark on how odd it looked.  While today I would most likely have gotten physical and occupational therapy for the gait itself and the sensory issues that underlay it, back in the 80s when I was a kid, that wasn’t so much a “thing”.  I never particularly enjoyed being active, hated gym classes deeply, and when getting bitten by a dog plus developing bursitis in both hips put an end to my short-lived running habit in high school, I stopped doing much physical activity for quite a while.

It wasn’t until I was in my 20s and started as an aide in a physical therapy clinic that I started getting back into fitness.  Funny thing I discovered when I started working there: people who do PT for a living tend to like athletics and activity.  My coworkers gently helped me retrain my gait so that it’s far more normal (bonus, when my gait got better, I got rid of the bursitis) and, because there happened to be a fitness center attached to the clinic where we all got free memberships, encouraged me to consult the personal trainers there and develop a program – and continued to encourage me when I did that.  The positive feedback worked and I managed to get into the habit of activity that has continued to this day.

I’m still not coordinated, I still don’t have any athletic talent, I still trip over my own feet, I have a chronic back issue that flares up on and off, and my grand plan for winning any kind of race is to get into my 90s and win my age category by dint of being one of the only ones in that age bracket doing the race.  But I get out there, jog lightly, walk, and strength train around 2.5-3 hours a week, and find that it increases both my mental and physical well-being.  I’ve often said that I’m bookish and nerdy (true), but I suppose at this point, I can’t honestly say I’m un-athletic any more.

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.

Variety Is The Spice Of Life

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It’s weird how time passes – the minutes or hours often seem long, but then suddenly, I’m in the middle of a new week or a new month.  What I’ve been doing with those minutes and hours is a mishmash:

  • Finished painting the basement. I have cream paint down the stairwell and along one long wall, then a sea-glass green to the other three walls (Benjamin Moore Windswept and Robin’s Nest if you’re curious).  It feels much lighter and airier than the blue-gray color that was there before and while I was a little worried – as always – that I wouldn’t like the colors, I love them.  I had wondered if my “anti-accent” wall would be too much (and thus should paint the whole basement in the sea-glass) or if the three colored walls would feel oppressive (and thus should paint everything cream) but the balance turned out nicely.
  • Now we’re on to the basement steps, which involves sanding the rough lumber that’s there. I’m pretty sure these were originally carpet-covered, but for some reason the carpet was removed and a dark blue paint slapped down. Not great looking and, because I have some sensory issues, I hated the texture on my feet.  The trick now is to sand enough to make them feel decent underfoot but not so much that the paint doesn’t stick.  We bought stair paint in the same cream and sea-glass green as the rest of the basement.  The steps themselves will get the cream, while the risers will be sea-glass.  Then we’ll throw some thin microfiber treads on the main part of the steps.  Hopefully it will look good (at least better) once it’s done.
  • I read Ariel Levy’s memoir The Rules Do Not Apply and Sarah DeGregorio’s Early: An Intimate History of Premature Birth and What it Teaches Us About Being Human. Both made me tear up for different reasons, both were excellent, and I’m hoping to delve into these with a more in-depth review here soon! (Content note – Levy’s memoir involves a stillbirth and DeGregorio’s also delves into neonatal loss.)
  • Started the paperwork to register E for kindergarten. This is awesome and honestly, pretty emotional.  Kindergarten was the thing I used to hang onto in the hospital and the NICU and as we went to specialist appointments and PT/OT/ST sessions, as in “someday, she’s going to be in kindergarten, we are going to make it…somehow”.  I’d picture her getting ready for her first day, beyond the terror that a simple cold would kill her, beyond the bradycardia episodes, and the monitors.  I really cannot believe we’re now so close.
  • Managed to finish a project for work on condensing some “good points” from continuing education course I did for the rest of my unit. It’s not a huge thing, but I’m really pleased with how it turned out.
  • Confessed to my choir director some long-term and (to me) embarrassing deficiencies in my music reading abilities. He was totally non-judgmental and basically told me that if we don’t admit what we don’t know, we never learn.  I’ve been meeting with him to remedy those and I’m excited because I’m actually learning how to do some of these things now!
  • Because we bit the bullet and went for the Dis.ney+ subscription service, Arthur and I decided to start watching the Marvel/Avengers movies as it feels like a lot of people talk about these. Have now seen “Captain America”.

What are you up to these days?

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