Atmospheres and Other Invisible Weights

I've talked to a number of people that have been feeling this particular phenomena lately, and I'm going to do my best to try to explain it.

So, the atmosphere is always weighing down on top of you.  Layers and layers of air and vapor held to the Earth by gravity, cumulatively putting 760 mm Hg of pressure on top of you or, appropriately, one atmosphere.  We're used to this pressure, this weight, so we don't tend to think about it much.  

When we travel to somewhere of a higher elevation, we feel it differently, the pressure lessened slightly and certain properties are similarly altered, such as boiling points and freezing points, and one may struggle to adjust to the difference in combating lightheadedness among other symptoms.  After literal weeks of adjustment, your body will find more efficient ways to manage your oxygen, but this takes time.  

Right now, the pressure of the pandemic, our political climate, our literal climate, etc., feels like instead of losing atmospheric pressure by changing to a higher elevation, we've managed as a world to figuratively double the pressure of the world around us, changed it from one atm of pressure to two, maybe even three.  We can still do everything that we would be doing normally, but this invisible weight now means that everything takes just that much more energy to accomplish.  Things that we used to be able to do in a normal day now feel like an impossible load, because the world weighs just that bit more.  

We're carrying a lot of things about now, and the invisible weight of those things is hard to quantify, yet they're embedded in our atmosphere at the moment.

That's grief.  Grieving the loss of normal; grieving the certainty of tomorrow; grieving the missing security; grieving the opportunities lost.  And it's heavy, coloring and weighing down those "normal" tasks.  

I mean, kind of, Doc?

Yes, that invisible weight has been settling on other people, too.  Yes, your normal tasks are harder to do when you're carrying extra invisible weight.  It's not a failure to acknowledge that or that you are differently capable at other times when there is less anxiety and dread circulating around us.  When we're unconsciously picking up on the emotional weight, it is as though the air is heavier around us.  This in turn requires more effort, and we're exhausted for it.

If you've been feeling this sensation and/or have been upset with yourself for not being productive enough in these last few months, I have two points I would want to stress to you:  firstly, your worth is not tied to your productivity; secondly and more importantly, you're not alone in feeling this way right now.  

Background, Connections, and Context

My brother and I were having a discussion the other day.  He was asking me about a resource that might help him understand biology better.  Condensing his words, a list of symptoms and treatments did not help him much understand what was happening; he wanted to understand the context of what was happening in the body to better understand a condition.  

I currently had my pathophysiology textbook in front of me, which was exactly the right resource at the time.  Pathophysiology is the study of how a disease process works within the body, what it does, what it effects, what processes it interferes with, what symptoms this ultimately drives, all in one place.  For this course, it's also paired with pharmacotherapeutics, looking at how these are treated with medicine and, again, how that medication is working to restore what processes, etc.  

I picked an example:  the pathophysiology book chapter assigned that day was a review about the gastrointestinal system (discussing normal anatomy and physiology functions) and then a chapter about a number of specific conditions that affect this system.  We talked about the stomach, how a process of ions creating a particular flow of ions are referred to as the proton pump which then triggers the secretion of hydrochloric acid in the stomach.  Too much of this could cause heartburn if it is regurgitated into the esophagus, ulceration on any exposed areas, indigestion, etc.  So if we take a proton pump inhibitor (e.g. Prilosec), this interferes with this pathway which means less HCl in the stomach, which means a higher pH/less acidity, which can then mean less symptoms.  

It all fits together.  There's a logical flow in how these pieces create the symptoms that they do, how they effect different systems.  The body is an ecosystem--everything effects everything else.  Nothing exists in a vacuum.  There's a narrative that unites these pieces, between the body as its designed to function and the disease process how it's altered that function, all still in the context of what is "normal" for that person.  

It made me think of how I think about history.  My brother greatly enjoys literature and history, finding that an understanding of one greatly enhances the other, seeing things in the context of the time and noting their different effects on one another.  Neither literature nor history exist in a vacuum:  there is something that connected those pieces together.  There is a greater weight to the context of what is happening in the story based on what history is happening around them; there is greater weight in the historical context in understanding what thoughts and ideas were prevalent in the time.  I have reflected more than once that history is better when it is told in the context of people, a round story of X led to Y which led to Z and effected these people in these ways at each step, seen through the lens of humanity and which led us to this next point--that sticks with me far better than regurgitating a series of trivia questions.

Sterilizing pathophysiology into a list of symptoms is convenient, but it is also robbing us of an understanding of the wider ramifications and decreases our overall scientific literacy.  Reducing history to trivia bullet points takes less time to digest but robs us of the rich context of how we got there and where we're going.  

The narrative matters.  The story is what sticks with us.  Connecting to what we know is what builds our knowledge base.  I just hadn't thought of it in my own context before.

This matters when trying to understand people and politics, too.  The story matters.  The context matters.  How we got here and how it leads to the next thing matters.  That gives the subject in question a richer meaning, a fuller depth that sticks with you, remembering the drive and connection if not all the minutia.  

Melvin & Me, Part 33: Melvin in the Media

In the last few weeks of my anatomy class at Heartland (before nursing school, back in April-ish), we started to cover the digestive system.  I sent a message to my instructor asking without pressure or expectation if she would like to use my experience to supplement any discussion.  She took me up on it.  Given our transition to online classes, I ended up leading an AMA (Ask Me Anything) discussion board for the class.  They were given a link to one of my blog posts to read through and then a forum to ask any question that they'd like.  A few mentioned that they had known a someone with an ostomy or helped folks through some health related experiences.  On the whole, I would say that most of the questions were in two main camps:  specifics about my particular situation (how I got to this point in the first place) and the emotional impact of it all.  

I have to consider time to time that because I'm open about having an ostomy, there is a sense of responsibility that comes with that.  I represent a community.  And I was grateful for the opportunity to speak with folks, to show a slightly different side of life.  

There are many other people here, too, but how often do you get to see something like this?

A genuine, positive representation?  Huzzah!

Ostomies are an odd kind of disability, in that I can be invisible about my ostomy maybe 75% of the time.  I don't have to talk about it.  But I need to.  I don't know how to be anything else.  I've developed techniques and scripts on how to talk about it, particularly as I'm fortunate enough to have a great therapist and people close to me that would willingly listen--not everyone has that.  And other people don't talk about theirs openly for their own reason.  What concerns me is if one of those reasons is that lack of positive representation.  

There's a difference when I talk to someone who has heard of an ostomy before to someone that has not.  For example, other nursing students have a base level of understanding and I can get right to the interesting stuff.  Seeing an advertisement that features a model with a colostomy was someone's first experience to ask "what's that?" which ultimately makes it easier to have a conversation later.  Someone starting from scratch, there's just a bit more emotional work to do, that momentary pang in the pit of my stomach:  I have to work to be seen today.  And mostly I'm happy to do that, but it does have that small emotional stumbling block.  Imagine telling someone about your home who had never heard of your country before.  There's a split-second moment where you realize something that was formative and had a depth of meaning to you didn't exist as far as the other person knew, an accidental invalidation.  You recover quickly and then try to find a sensible starting point for what that person is familiar with.  Learning starts by finding what someone already is familiar with and building off of it; finding that starting point takes time and energy to hone down.  

And that's partly why I'm vocal about mine, to at least be a starting point for persons that don't know how to talk about it.  This is media.  I'm a part of it.  I want to present it truthfully, which involves both positive and negative elements.  I want to be someone that others can point to or reach out to with "hey, I have this friend who was just diagnosed with Crohn's" or "I know someone whose son is getting an ostomy" and be that starting talking point.  When I get my nursing license, I want other nurses to know that they can snag me to help answer some of those deeper questions that patients have or for advice on how to approach a teaching situation for someone not past those initial grieving points.  And then when I can focus more on wound/ostomy specifically, I want to be a presence on the floor, even elect myself as a posterchild, if need be, for living a life successfully and openly with a stoma.  

Then the imposter syndrome kicks in.  Can I elect myself as posterchild?  Can I claim a public space like that?  Whelp.  Time will, I think, will make the difference:  the best way to establish myself is to work toward living my most authentic life.  The rest will come in time.  

Nursing School Update: In the Hospital

 It's time for another nursing school update, I think.  The week off between classes was regrettably not much of a week off.  There were several little things that needed doing that week:  we met in person for the first time to practice and test out on skills that required manikins and certain guidance; a number of training pieces for our clinical settings needed addressing prior to clinicals starting; we had to get tested for our N95 masks for our maternal infant clinical; a dozen and a half mini-paperwork moments; and, oh yeah, our basement is in a particular state of shambles as we continue in our renovation process.  

Just like with the basement, though, everything is starting to take shape.  

I had a 22 gauge needle in my hand.  I've had so many IVs in my life, and the needle that I had in my hand was for going into someone else's.  Well, specifically a rubber arm, but, still, there was that moment, that rush of excitement when I saw a flash of "blood" return on my first stick.  The rest were more of a struggle, but that first one, that was edifying.  It will only get better.  It's a matter of time and practice.  It's starting to feel more real.  

We also have had the opportunity to meet some of our peers in person, after months of shared virtual space.  And it's fascinating to see how tall folks are in real life, if nothing else, yet the conversation is different, too, without folks worried about computer lag or whether someone else will speak up by the time they unmute themselves.  Now folks moved with a particular freedom among one another, while somehow still holding on to the awkwardness of moving through an unfamiliar space.  In short, it was an interesting balance between tentative and confident, that we knew one another in a sense but still didn't know how to know each other in this space.  We all had to find new ways to sort out the politics of a strange world--this was a small microcosm of that which fascinated me.  

And now, I can also include some generalities of my first clinical day, which happened last Sunday.  What do I mean by "clinical"?  Great question; glad that I pretended you asked.  It's a place and time where we are in some kind of care setting as students, to work with real patients and situations while supervised.  Most of mine happen to be at Bromenn in town, and I am working through a particular program that has twelve hour shifts, following a nurse for their whole shift.  

I certainly cannot get into the specifics of the persons or cases I saw, but I was astounded that in my first actual day doing anything on the floor, I found some very specific parts of my health history reflected in three individuals that I worked with.  There was an immediate sense of "I know this and I know you in this moment" that I felt for each of them.  In short, I'm going to be processing parts of that for a while, both the edification that my own suffering can benefit my empathy and response to the current suffering of another and sorting out what the bombardment of trauma triggers meant in those moments.  

Other than that, I fought with blood pressure cuff cords, changed linens with the patient in the bed, realized just how long a minute can be when you picked an awkward position to take pulse and respiration counts, hid computers so that I would have one when I needed one, stared at the wall of supplies trying to find that one thing, talked to a patient that was genuinely confused on where they were, pilfered thermometer covers from another room when mine had run out, loaded my pockets with saline flushes and alcohol swabs all used by the end of the day, figured out when to peel off and grab a swig of water, clicked through four screens trying to find where to document a urine output in the right place, rushed to help encourage a patient to sit back down after their bed alarm went off, and all around started to feel like maybe this could very much make sense.  And I'm sure that it was a slow day.

Staring at the patient med list, I'm acutely aware of how much I have to learn.  I still haven't started an IV on a real person, for example, nor have I experienced a number of things outside of a textbook.  Yet, I'm also ready to ask questions, be helpful in turn, and to try.  The time management pieces, I can do that with confidence; the experience pieces will come in time.  I feel a sense of belonging and rightness in these places but without a magical, glowing light or rose-tint around the edges--it's both real and right.  

We're in to week two of classes and many more adventures ahead!

Melvin & Me, Part 32: Public Ostomy Toilets

So, I've mentioned recently that we're working on an ostomy toilet in our house.  Truth was, I didn't even know this was an option or an idea until a few months ago.  

See this picture?  I knew what it meant immediately.  This is placed outside of some public restrooms in Japan.

I have found a couple of articles (here and here) that broke down what needs an ostomate has in the bathroom, what went into the decision to make ostomy-friendly spaces, that they have been available since 1998. The general idea was noting that when a public safety emergency forced Japanese citizens into a shelter, it was realized that the needs of these individuals was not well met within the shelters as they were built--in a box of "medical supplies," one is generally unlikely to find ostomy appliances.  And thus, there was a response to that need, leading the the design and implementation of these in certain places.

I have so many feelings about this.

Firstly, anger.  I have been a part of this world since 2012 personally, 2000 peripherally.  People have had ostomies for FAR longer.  Why the HELL are these not showing up over here?  Do I just need to go to bigger cities to have visibility?  I can't recall ever seeing something like this at stopovers in O'Hare or even the Mayo Clinic.  I feel so unseen--if I come out of the handicapped stall because I needed space to better tend my ostomy, I don't look disabled enough for some people, in my mind's eye.  I plugged in ostomy toilets into Amazon and got mostly results for smell-masking products--when I'm looking for accessibility and to be seen, the pieces recommended to me were about covering up.  I mean, heaven forbid that I go to a bathroom and take care of my bodily needs, right?  

And then comes a fair bit of grief.  How many people feel unseen and unwanted when there isn't a space made that can include them.  What nonverbals are we sending when we don't make a place wheelchair accessible, for example?  How many persons we don't realize we are excluding is sickeningly high.  It takes intention to learn how to see people; it takes practice.  And I am intent on growing that for the sake of others I will come across.  I'm sad for myself and the pressure I have felt in those spaces; I'm sadder for others that don't know how to break past that.  

Then there was a lot of spiteful resolve.  Spite is a mighty, mighty motivator.  I will have a bathroom space that does not make me feel like an outsider.  I will not feel like an inconvenience in my own home.  And many other affirmations as we started planning out some significant changes to the bathroom.  

And here we have a lot of rather loud sounds and rumbling from our basement at the moment--the whole floor is shaking as I write, actually.  It feels...fitting.  

I'm not done with this idea.  

...Also, when we're allowed to travel again, I may genuinely plan travel with specific intent to see these spaces in person.  Thirty-some-odd hours of flight, just to see some bathrooms.  

Bathroom Adventures

With finals behind me, I have been better able to jump in with house tasks with Andy, which has included painting the rest of the deck, installing a new mailbox (involving learning about concrete), planting some new trees, and other bits and pieces around the house that have left us quite exhausted this last weekend.  

AND we started work on the bathroom.  More specifically, we have a contractor working on parts of our basement, that whole corner now walled off with plastic and painter's tape.  It has a very satisfying billow when you walk by it quickly.  Getting the the laundry room is a challenge but still possible.  We've made a few interesting discoveries--two cups embedded in the wall that have definitely been there before we broke through, some really dumb wasted spaces, the original linoleum was green, and they did not use greenboard.

I spy with my little eye...

For those unsure about that last one, let's expand a bit.  Drywall.  It's the kind of wall that most houses are made of.  The "regular" kind is white and as the name might suggest is meant to stay dry.  There is a different kind called greenboard, which is moisture resistant.  The BATHROOM in our BASEMENT next to the UTILITY room was NOT made with the water resistant kind and there was no ventilation built into this room.  The possibility of mold, wall-breakdown, Lord knows what else was waiting in the walls.  We're immensely glad that we have started this project sooner rather than later, for the health risks if nothing else.  We're definitely curious what other shortcuts some of the previous owners might have taken, but in the same breath I cannot spare the energy to think about it.  

Instead, I'm thinking about what our bathroom will be.  For example, we'll have more than half an outlet--there was only one, and the light fixture plugged into one of the spots.  Two of the switches on the other side of the bathroom would not work independently of one another, always giving priority to whichever was flipped last, meaning lots of heavy sighs to walk back across the room and flip one back to flip the other--we're going to fix a lot of this ridiculousness when the walls are down.  I'm still aghast at the decision to waste a 3x3x2 solid shelf-worth of space within the walls, twice--when they had created so much built-in shelving already, that they did this twice instead of finding a better solution astounds me.  

Of course, though, I am thinking about my ostomy sink.  This has been no small amount of puzzlement in the back of my mind.  I'm so accustomed to adapt to a situation in the bathroom, that I have to stop and change the discussion:  "what would work best for what I need?"  What I mean to say is I have so many strategies on how to adapt but only a few concreted ideas on what it would look like to be built for me.  

What I know:

• It should be at waist height.  No more bending over or squatting to negotiate a favorable positioning.
• It should not require a second step, meaning that I want toilet paper to go in the same place (instead of twisting around to throw it in the trash or toilet) or that I don't have to wipe everything down each time--a flush and it's done, heading straight into the septic system.  
• There should be significant counter space.  Putting my bag supplies out when doing a bag change should be easy to spread out and work with.  

So we have a flushable sink of some kind and a counter being built for it that will have it at the right height and have a good bit of space.  Check, check, check.  

...now what?  Namely, what I'm struggling with most is where I want to put the toilet paper and how I want it to roll.  I know what does and doesn't annoy me about standard setups, yet the question of right vs left, top vs side, I cannot figure out what makes sense, trying to pantomime with muscle memory I don't have yet.  

And that's part of the magic of this process, though, that I have the opportunity to figure this out over time.  I mean, I'd like to have as much of it sorted while we're in immediate contact with knowledgeable persons, where we can easily add pieces as we go, but we do have the flexibility to make some changes as we go.  I can figure this out in stages, just like how I've adapted to the ostomy everywhere else.  

That conclusion sapped away a great deal of anxiety. There is time to fix.  There is time to improve.  We've started the first steps in making space for these things.  

Additional updates forthcoming.

Melvin & Me, Part 31: Bathroom Gymnastics

Bathrooms aren't exactly made with my needs in mind.  I've mentioned elements of this before in other posts (here, for example), but there is a particular place that I have talked around I want to expand today.

So, my stoma, our dear Melvin, is about an inch up and three inches over to the right from my belly button.  That placement is going to be an important landmark to bear in mind for some of the visualization that I want to impart.  Feel free to take a moment to find it on yourself, if you don't mind.  Now, mentally attach a plastic baggy of chocolate pudding to that spot, a bag that is shaped roughly nine inches long and five inches wide.  To match me, you could wear the long side of the bag horizontally; or to match many others, you could have the long side lay vertically.  

With me so far?  

Now, of course, that hypothetical baggy is not actually full of chocolate pudding.  How do you open the end and let its contents spill out into the toilet while wearing as little of the pudding as possible?  What way do you want to maneuver your body to avoid splashing or spillage on your toilet seat or clothes?  Keep in mind, too, that the top of my bag happens to end either just below the top of my thighs or several inches above my thighs, depending on which way I'm negotiating the long side.  

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--Option A--  Stand up and empty the bag into the bowl

Pro:  no extra bending; fight the man and demand that the world apply to you

Con:  LOTS of splashing and post-cleanup after a multi-foot drop, meaning a great deal of soiled clothing and bathroom cleaning; discourteous to other persons

Conclusion:  No one is actually going to do this, unless they threw out their back or there's some kind of emergency.

--Option B-- Sit on the toilet "normally," spread your legs as far as possible, and empty the bag into the bowl between your legs 

Pro:  does not look weird to the person in the next bathroom stall; feels more "normal;" a lesser drop for the bag contents to fall; bag easier to control sitting down

Con:  splash possibility likely; incredibly tricky in a skirt; incredibly difficult if you have thick thighs or have limited range to stretch your legs out; incredibly difficult if you have a significant gut, even if you're all the way back on the toilet seat; likely to leave streaks at the comparatively dry front of the toilet bowl

Conclusion:  If you have a small toilet bowl or have any kind of gut-weight, this gets tricky quickly.  Also, with as high as my bag sits, we're still talking about a bit of a plummet.  And trying to do this with a skirt takes significant negotiation.  Emotionally, this feels more reminiscent of the old "normal."  

--Option C-- Sit on the toilet "normally," spread your legs as far as possible, double in half, and empty the bag into the bowl between your legs

Pro:  same pros as above; even less splashage; very controlled release

Con:  if you have a significant gut, you're now flying completely blind; in fact, you're occluding your space and most likely flying blind; requires some flexibility; you're putting your face closer to the splash/smell zone; still very tricky if you're wearing a skirt; likely to leave streaks at the comparatively dry front of the toilet bowl

Conclusion:  The doubling in half is because my stoma sits high AND I wear my bag to the side.  It's hard to get your hands in there and not have a great view because of all the limbs, which means trying to move your legs wider which may or may not be easy with whatever clothes I'm wearing.  This is the most controlled so far, but it also takes the most flexibility in positioning.  

--Option D-- Sit on the toilet backwards, spread legs as far as possible, bend as necessary, and empty the bag into the bowl between your legs

Pro:  the back of the toilet becomes a shelf; there is more water at the back of the toilet bowl, meaning less residual poop in the bowl; controlled release into the bowl

Con:  if you scoot back too far, you could fall off the front of the toilet; depending on ostomy placement, you might have to bend so far forward that your head is resting against the toilet tank; the person in the stall next to you is very confused; still difficult to negotiate a skirt; requires some flexibility

Conclusion:  My stoma sits a little too high to make this practical, where when I bend over to get the lip of the bag close to the water, I'm on the very edge of the front of the toilet OR half-resting my head on the top of the toilet tank bent over.  That extra shelf can come in handy, though.

--Option E--  Knell or squat in front of the toilet bowl, lean your body over the toilet bowl

Pro:  glorious visibility; a lot of control on the release into the bowl; negotiating a skirt is about as difficult as any other clothing; works regardless of toilet bowl shape

Con:  BALANCE; your poor knees; emptying into the front of the toilet bowl has a higher chance for residual poop; greater chance of trailing clothes; face close up to the bowl and you become very aware of how clean the toilet is or isn't; the person in the stall next to you is concerned that you're unwell

Conclusion:  This is the one that I tend to use, because regardless of what I'm wearing or the shape of the toilet, it will work.  It also gives me the most control and visibility.  My knees, though, are not going to be okay with this forever, meaning that this is not something I would recommend to anyone with knee problems.  

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There are a few things that work for all parties, such as laying down a couple of squares of toilet paper to help keep the ploppage to a minimum, breaking the surface tension and also helping move out stool from the front of the bowl more cleanly.  In summation, though, it takes a fair bit of art and adaptation to negotiate a surface that is not built with me in mind.  And, of course, depending on how loose the chocolate pudding is that day and what you're wearing and what shape the toilet is and what room you have to move in, the variables will recommend different approaches.  

SO.  If the world won't shape to me, we intend to at least shape our small corner of the world.

We have found a contractor, and we'll be redoing our downstairs bathroom.  We're looking forward to this for a number of reasons, including having actual ventilation in that bathroom, building a master closet as part of the project (on the other side of the wall), and having a shower that Andy can stand up in.  Yet my shining detail is that we're also adding a flushing sink, something that I can use to empty my ostomy at standing height.  

Details and updates forthcoming!