Observations Into Week Two

Well, there's no way that I cannot talk about our current world situation right now, especially as I'm trying to make sense of things as they are.  Everything else that I've tried to start right now veers back that way.  I have made a few observations:

• When typing the word "tested," it's VERY important that your fingers are accurately placed on home row and that you confirm you have indeed typed a "d" instead of a second "s" in its place.  I've seen that, now, on a couple of different Facebook posts and had a giggling fit for about twenty minutes apiece as a result.  I remember nothing else from either post except that beautiful typo. 
• There are literally so many options of free things to do if you have reliable internet--virtual museums, the Met streaming opera, academic articles are available through JSTOR, other streaming services opening up free trials during this time, celebrities reading books to children, folks livestreaming classes and other content, Picard is available on CBS Live, etc.--that I genuinely feel overwhelmed by it.  I feel bad that I am not adequately taking advantage over all of these things, hitting some serious executive dysfunction until I decide to do what I would normally do for an evening in anyway.  So I feel better for having that brush of normal, but I also feel guilt for not throwing on some Wagner while I could.  
• I think we all have a better appreciation for the work that content creators for YouTube, Twitch, or whatever other streaming service that you frequent do in not only making entertaining/informative content, but also in how well they balance sound and other factors.  Good audio balancing is perfect when you don't even realize its happening.  Good editing is very apparent when you watch a video without it.  I've been more than one meeting where someone could not figure out the mute button or with someone whose setup seems like it must be in an empty auditorium for how much everything echoes.  By the end of this, maybe some folks will be better at conference calls, at least.  
• On that note, it's a good time to suffer through the initial setup of different connection programs with your loved ones, particularly those that are a little less technologically savvy.  Will it be a frustrating hour?  Likely.  But once it's done the first time, it'll be far easier in the future to connect or at least figure out EXACTLY how to word instructions for next time, even if it involves a printed and mailed copy of said instructions (with pictures).  I've found lately that I've spent the first half hour at least of most every group meeting trying to sort out the tech, until we've set the basics for that group--it's okay to take that time and a good idea to start expecting it.  
• There are a LOT of articles and suggestions out there with how to turn your increased time at home (for those it applies to) into an opportunity, such as losing weight, beginning an exercise routine, starting on that passion project you've been putting off, starting on that home improvement project you've been putting off, and others.  For some people, this is a helpful framing for how they can turn a negative into a positive.  For others, this can add some additional pressure into an already stressful situation.  We're collectively caught in a traumatic situation--this is going to hit everyone a little bit differently.  We're all going to cope a little bit differently.  And we need to be gracious toward each other in those spaces.  But, please, first be gracious to yourself.

• On that note, parts of this whole situation are going to catch up with us later.  It's okay to grieve the events we are missing.  It's okay to be upset about missing social ceremonies (commencement and any funerals, for example) and to try to figure out what it means and what we need to do about it.  This requires a level of self-awareness that not everyone is going to have.  There will be a level of creativity that will emerge and might forever shape how we approach some of these in the future.  
• Related:  for those still working at home or otherwise, I think it's really okay to not be as productive as you normally are.  I mean, try, certainly, but give yourself some slack here, too.
• Also related:  where time doesn't make much sense right now, where some folks have lower activity levels and are getting more sleep yet feel more tired, I think for a lot of people that's a trauma symptom that the body is processing.  For those working non-stop (without adequate protection and/or compensation), time similarly doesn't make sense for different reasons.    
• With those levels of grace, I want to state the following very clearly:  even though we understand that everyone is under some different, traumatic stress right now, that does not give anyone the excuse to be an asshole to customer service folks or frankly anyone still working at their place of work.  They are not there to absorb your frustration.  
• We are currently reevaluating many assumptions that we have made in our society.  I've supported a $15 minimum wage for a long time because I reject the idea that persons who work certain positions "deserve" to be poor.  I expect that our essential workers and how folks view them will reflect more strongly in our political cycle.  I also want our medical personnel to be protected and to have support and resources, starting with taking steps to prevent anything like this from happening again.  And don't get me started on how fucked up it is to combine the current failures in our healthcare system (namely the price inflations, for both pharmaceuticals and services as well as how insurance and other parties have blown these far past reason [but not past greed, evidently]) with the lack of paid sick leave:  the short version, this means people that have to work in order to afford their health insurance and any medical needs cannot miss work for sickness or lose their coverage/home/etc. along with their job, which means folks that should stay home simply cannot afford to and will continue to go to work, regardless of how sick they are or whether they're spreading something.  I don't expect this to change overnight, but we will have some places where this resonates in a different way than before.  
• We're also evaluating what is possible with the technology we have, having been forced to look at it a little differently than before.  Creativity is happening.  Solutions and new ideas are forming and being perfected, scaffolding a new normal.  
• Everyone will have their own tips for self care in this time.  It's okay if yours look a little different.  Growing some self-awareness can make this process easier, though, if you're needing a place to start, like starting your day by creating a checklist--cannot meet your needs if you haven't identified what they are.  For me, I've found that I feel best in a day if I have 1) created something (draw, cook, write, whathaveyou), 2) worked toward learning something new, 3) acknowledged my own emotions, and 4) performed some act of self-care, such as going outside, working out, and/or taking a shower.  As an example, I wrote the bulk of this on Sunday, learned a few things about turmeric today, realized I was feeling heightened after I performed a self check-in, and took a shower before allowing myself the grace to be lazy on the couch for a bit and play my new videogame.  All boxes checked.

Keep your chin up, folks.  Thank you for how you are contributing to reducing the spread of this pandemic, clinging to normalcy, and otherwise keeping on as best you can.  I hope you can be gracious to yourself and those around you.  Thinking warm thoughts in your direction today.

Quarentine Entry #1386

COVID-19 is very much the core of the public conscious at the moment.  Lifes are upended at best, to put it succinctly.  We're no exception in that we have our own challenges.  

Andy and I are definitely on the lucky side of things, and immensely grateful to report such.  We've been working from home since Monday afternoon last week and have stocked up as necessary.  Everyone in our home has their own space, so we do manage very well, with a healthy stock of books, board games, movies, house projects, and video games to keep us entertained several times over.  We've been playing DDR when we need some physical activity, too, which has been a few levels of fun.  All in all, we're doing just fine, here--still employed, setting a good example, and weathering the storm quietly at home.

Again, we certainly appreciate how lucky we've been through the whole situation.  That said, there has still been a bit of an adjustment:  I've been having a minor freak-out about staying in the house all day.  Emotionally, I associate staying at home with a different time of my life, when I was either in the hospital or freshly out of the hospital and needing a great deal of care.  I was convalescing home alone for long chunks of time while Andy was at work.  I was on medications that kept me from driving, so any time I got out of the house was when someone was able to take me somewhere.  And even leaving the house, I did not have much by means of energy to be gone long from the house.  

So closer to the end, I was very, very tired of the same four walls.  But also not in a place that I could do anything different.  And this is a particular trigger for depression and anxiety for me.  Hell, my fitness app even has my resting heart rate up a few beats for the last week or so.  Now, even though I've been out of that particular phase of my life for a long while now, this is another case where the body remembers.  What does that mean?  It means that a day and half of relaxing at home is fine; two days of relaxing at home and my brain starts to flip into those darker emotional places.  

Mentally and emotionally, I am staring at the ceiling of my hospital room again with a three or four surgical drains, an open wound, and a fresh ostomy trying to sort out the horror of it all.  I remember the amount of light in the room, the adjacent sounds and smells, all of it.  

There is no immediate danger for me being at home--it is the safer place to be right now--but my body is reacting like it's in serious danger.  Just for not leaving the house for a few days.  Logically, it's best to stay home.  It's the right thing to do for multiple reasons.  But the thing about triggers is that they don't always make logical sense.  Even getting out of the house daily is a bit tricky--we went to Office Depot last week for a quick trip and I felt like I was absorbing the "barely holding it together" energy from the five staff there.  Walking around the house or doing outside chores is a short burst of something, but it has been rainy and otherwise I cannot take too long a break away from my work computer.  There isn't an easy "fix."

So what I've done so far:  

• Denied it was happening in hopes that it wasn't
• Lots of comfort eating
• A bit of exercise
• A collective two bottles of wine for the week

What I'll probably move toward:

• Acknowledging what's happening
• Taking a breath to assess where I'm feeling it in my body
• Checking in with said parts of my body more frequently
• With the gained clarity, hopefully discern what some specific momentary needs are to even be a 10% strategy in the interim
• More exercise

And that's the rub, really.  Acknowledging what's happening in my body, allowing the wave to roll through instead of ignoring it or fighting it, that's what's going to make the most difference.  Taking a moment to be honest with myself and to stop whatever it is I'm doing to do so, well, it takes a certain amount of emotional energy.  I've been hoarding my emotional energy all week.  It's time to direct it toward the problem rather than smothering the symptoms.

Again, I'm fine, in a matter of speaking--this isn't necessarily a call to arms.  I'm a high functioning depressive so I can still socialize, get work done, and look peachy on the surface.  Saying the words aloud (or via blog, whatever) helps me put it together, helps me to start to work through it.  But my emotional resources are thinly stretched for a little while as a result, meaning that I can be of less support to others than I would want to be during this time--my reaching-out-range is minimal at the moment.  

...I could still use reminders to drink water, though.

Melvin & Me, Part 29: So there's a Pandemic and I'm Immunocompromsied...

I have a self-depricating joke that I like to make about myself, when someone worries about me getting sick by getting too close to them:  "oh, don't worry--my immune system is so good it attacks me."  

That's the core of what my Crohn's Disease is, that my immune system is a wee bit overzealous.  And in this very good objective of protecting my body from harm it has collectively destroyed parts of my body, to put it bluntly.  

It's about balance.

Naturally, then, a considerable portion of my treatment plan involves therapies to inhibit my immune system, trying to slow it down enough that it no longer attacks my own cells but still robust enough to fend off any legitimate danger.  I am actively taking medications that inhibit my immune system, some are systemic and some are targeted just to certain areas.  There have been other times where I've been on a couple of systemic immunosuppressing medications at the same time.  This is a balancing act, at best.  Too little and we head back into a flare-up, where Crohn's symptoms roar back violently and dangerously.  Too much and a cold sends me to the hospital when my body cannot fend it off.  And, of course, it's a moving target, meaning that I'm regularly sending bloodwork to my doctor's office in case we need to make any adjustments.  One particular medication that I'm taking needs at least three months in my system to have any therapeutic value--this means, too, that any adjustments we make to it will take time to show results.  

So what does all this mean?  

The short version:  I have a predisposition to come down with some interesting things and potentially recover from them more slowly.  

The long version:  Well, in a normal day, I have a few restrictions on what vaccinations my doctor signs off on for me, that I cannot have any attenuated vaccines--i.e. live, weakened strains of a pathogen as compared to fully dead ones; it's a rather unlikely chance for anything to go wrong for me now, but my levels have been much more volatile at different points of my treatment.  Ergo, we just don't risk it.  I use the joke to help diffuse concern or guilt, but that doesn't mean that I don't take some simple precautions where I can.  I monitor any symptoms and check-ins with my body extensively, bordering on obsession.  I am VERY proactive in my care, including sensical preventative measures and many early bedtimes.  I struggle with the question on when to stay home from work (because comparatively whatever I'm experiencing is probably "not as bad" given that the top of my scale involves ruptured organs), but once I have made the decision to go to the doctor, it's all action.  

Now, let's add in our friend COVID-19:  I'm concerned, but I'm not worried.  I wash my hands like Lady Macbeth, but I continue to live my life.  I'm not going to church right now--in part because I have some people I very much want to hug but don't want to risk being a vector for them either.  Small changes, but not panic.  I've taken microbiology in the past, meaning I know there's a point where I cannot expect supreme victory over microbes, partly because of how helpful they are in our own bodies (e.g. bifidobacterium in your colon, that helps you fixate Vitamin K--no microbe means no absorption of Vitamin K), which is very freeing and daunting at the same time.  It's about balance.  

So, yes, I'm limiting my time in larger groups.  And I'm washing my hands, and limiting touch to my face, and finding that my favorite non-touching greeting is either a smile and deep nod or a smile, nod, and hand-over-my-heart combo.  I decided to work from home when given the chance.  But I'm also relatively relaxed.  I go out when I need to, avoiding any peak times if possible.  I'm still getting work done that I need to and assessing the timeing of "need to" as applicable.  I have a couple flavors of hand sanitizer because I like the different scents and get bored with Purel.  The more people who ask me if I'm okay, the more I start to second guess that calm. 

ONE MORE THING:  There's no way you can know that I have an autoimmune disease to look at me.  I am emphatically not the only one--just a very vocal one.  Even persons in the "safer" age bracket can be susceptable in ways that are not readily obvious.  Related:  we don't know whom anyone is going home to, meaning that while the individual in question may not look or seem vulnerable whomsoever they live with may be.  What we do is for the community as a whole, protecting the least of us in whatever form that means today. 

The takeaway:  I think it's fair to say that everyone is sitting on a lot of uncertainly and a lot of disappointment.  Whether you're sad that your favorite restaurant is closed or your vacation/study abroad plans fell through or you're not sure if you'll have enough work hours to pay your rent/mortgage this month, there's a lot of fear and uncertainty floating around out there.  People can cling to silly things in uncertainty, trying to find safety in a pile of toilet paper.  And others can take a breath, acknowledge the fear, and find ways to support each other.  Are you avoiding being a vector by only sticking to small groups?  Can you call a friend in a nursing home instead of visiting?  Does your elderly neighbor need anything from the grocery store while you're going?  Is your favorite local business selling gift certificates that you can use to put money in their pocket today and use later?  Can you teach your coworker how to use the online tools available to them for videoconferencing?  I'd rather put my energy into these places than worry if I'm going to get sick.  I'm going to get SOME kind of sick eventually--again, freeing but also disturbing.  So it's balance, concern but not worry.  Alert but not anxious.    

And in the meanwhile:  

Apologies

I was needlessly reflecting on something the other day that I wanted to chew on a bit:  I have a few folks in my acquaintance that apologize constantly.  If I'm honest about it, sometimes it annoys me and other times I hardly notice--the key difference for me seems to be what intent I'm reading behind the apology.

Let's break this down into a few different categories of chronic apologizers:

• It's a vocal tic, where they say sorry as part of their speech pattern, rather that to make any actual excuse or remorse--kind of like the call-and-response of the American greeting "how are you?" as far as sincerity.
• Persons who are trying to minimize the impact of whatever they're doing.  This one has two subcategories:
• They have been taught (i.e. trauma) to minimize themselves out of fear of retaliation.
• They're passive aggressively pushing an agenda.
• The real intent of the apology is for you to flood compliments on how wonderful they actually are, where you are supposed to contradict them in a manipulative demand for praise.
• The individual, possibly through trauma or anxiety, has been trained that they cannot take up space and feels a need to apologize for taking up ANY space.

The shift in my brain is where I place the dividing line between passive aggression/manipulation and the trauma element.  I've mentioned a few times over that I don't have a lot of patience for passive aggression, and yet I also recognize in the same breath that the best manipulators don't realize that they're doing it, which makes for some interesting mental gymnastics sometimes.  I have a few folks in mind specifically, too, that I know live with anxiety or trauma to the degree that they need particular reassurance that they are allowed to take up space--my immediate reaction is to fight them on it, to insist repeatedly that they don't need to apologize for voicing a need or their opinion.  Simultaneously, I don't want to hurt these individuals further by my eventual distress in insisting that they can have space (accidently adding guilt), inadvertently stopping them from expressing something they need to express, or otherwise enabling them by providing outside reassurance when they need to grow internal resources and/or self empathy.  In my own small way, I want to give them part of that space back, from whatever is taken from them, but not at the cost of them never learning pieces for themselves.  I'd also be lying if I said there wasn't a point of frustration where I wish that the individual would believe me the first time instead of having to repeat it x times over.  The short of it is that I cannot assume that I know what someone needs or that what they need now is what they'll need every time.  Mostly, that means I've stopped responding to apologies in certain contexts, rather than assume I know the right response.

Everyone has their own apology languages, different ways that they prefer to both apologize and receive apologies.  I want my apologies to carry my intended meaning and not some accidental passive aggression and/or minimize the impact of what I want to say.  Additionally, there are still times when I'm grateful that the social acknowledgement of the situation has happened, though this can be done without an apology.

For example, there is a huge difference in tone between "Sorry I'm late," and "Thank you for your patience."  

1. The former focuses on the individual who performed the wrong, highlighting the flaw in a spotlight for additional, uncomfortable scrutiny that may not be necessary and does not move either party past it
2. The former also can encourage a disingenuous call-and-response kind of reply, "oh, no problem" whether or not there was any real hurt involved because socially you've been trapped and otherwise shut down from much further conversation about it
3. The latter, however, acknowledges the inconvenience of the injured party while also giving them a space to say more if they need to--for me, the acknowledgement in itself is huge
4. The latter expresses gratitude--yes, this can be a little assumptive depending on the degree of the injury, but many of the day-to-day mistakes can be well covered by this
5. There's less chance of the following, getting into that manipulation territory again:

This rephrasing is applicable in so many places:  "I'm sorry I'm talking too much," turns into "thank you for listening," or "thank you for letting me get that all out."  "I'm sorry for being so difficult," to "thank you for honoring my dietary needs."  

Here's a rule of thumb:  if the apology is to protect yourself, consider its root and whether it could be a gratitude statement; if the apology is to genuinely express remorse, word it with intention.

Apologies are necessary--we're going to fuck up from time to time.  However, it's worth looking at our own intentions with our apologies, particularly if they can be rephrased as gratitude.  This is kinder to ourselves--giving ourselves the grace we would give others if the situation were reversed--and acknowledges the injured party in a way that gives them space.  As a side benefit, when I reduce the number of apologies I make in normal situations (i.e. removing the "sorry for the late reply" kinds of statements), I give more credence to my needed apologies.  Andy and I have a policy when it comes to true apologies--we allow the other the space to think about what needs to apologized for.  I could give Andy a half-assed "Sorry your feelings got hurt" in the moment OR I could give him a sincere "I'm sorry I worded that in such a clumsy, hurtful way and made it worse by snapping at you," returning to it a half-hour later.  That makes a huge difference when we need it, in what we learned from it as well as significantly decreasing the total resentment quotient.  

Yes, I made up the phrase "total resentment quotient."  We're not perfect at solving all concerns without carrying over any additional frustration, but I would say that knowing how to fight is an important couple skill, particularly when we can decrease the carryover between ourselves in particular.  But more on that another time.

Melvin & Me, Part 28: Crohn's 103, the Long Haul

Here's the hardest thing about having a chronic condition:  it's CHRONIC.

There is no end.  There is remission, hopefully, but it's never actually over.  Even when I haven't posted something explicitly about my ostomy or Crohn's in MONTHS, it's still here.  Still a thing.  Still always on the backburner of my mind.  Still part of every decision I make.  Still part of my very real panic as I hear politicians arguing about healthcare policy and knowing that I could easily be a month away from complete disaster both financially and whether I'm even alive at the end of the year (Medicare for ALL is the way forward, folks).

This is important for a number of reasons.

• Mentally, even when things are going well, I'm preparing for things to take a sudden turn for the worse.  It's tough to balance that, to be prepared and mindful of signs without hypervigilance, to the point of obsession.
• I understand that for some baggage it isn't a matter of getting rid of it, but rather life is about finding better ways to carry it.  I will always need to find ways to balance the mental load of dealing with a lifetime of balancing my doctors' appointments, bloodwork, new medications, procedures, ostomy supplies, and all else.  That's a process, and it takes a lot of emotional energy to sort it out.  For the rest of my life.
• With aforementioned baggage, there are good days and bad days--I have to constantly re-accept my circumstances.  I still need to take time for a pity puddle on occasion and give myself the freedom to honor those feelings when they occur.  I don't always communicate these waves well, and have a real propensity to smile over them.
• There are times in my life where I have and will continue to need to put parts of my life down for a moment in order to take care of myself.  That hurts in different ways, needing to say no to things, culminating into a very real fear of missing out.
• My body's needs are different from day to day--sometimes, I have the energy to conquer anything and others I'm running a bit low, without a pattern.  These levels are significantly more consistent than they used to be, but I know this won't always be the case.  
• My internal pain scale is a bit skewed--this means that I don't always seek help when I need it because even urgent things aren't as bad as, say, a ruptured organ.  As such, there are some times that I could be in what someone would think of as significant pain and not really register it the same way or shrug it off to my eventual detriment.  
• Some people cannot shake the "fragile" vision of me, seemingly always assuming that I need help and/or will need constant tending.  Instead of asking me what I can do, it's implied that I have to approach all things tentatively or am incapable.
• Some people forget that just because I'm not "acting sick" doesn't mean I can do everything.  Instead of asking what I can do, it's implied that I should be perfectly fine to do something without modification or acknowledgement of my energy level.  

Those last two are important, and there is a delicate balance there between feeling like I'm being treated like an invalid and between feeling that my needs are not taken into account.  And resolving the frustration can be as simple as a quick addition of "if you're up for it" or some other kind of out.  I can take the out if I need to or quickly reevaluate my energy levels and re-calibrate accordingly for the latter.  Specifically, I would also want it to be an honest check-in and not a nicely veiled demand--a question that you cannot say no to isn't really a question.  A small acknowledgment can make a world of difference.

Truly, it's the assumption or the demand that bothers me most.  I don't need my body's needs to be the focal point of all decisions, but it's nice to know that it is considered.  Any time someone assumes that they know how I feel, that rankles me sixteen ways til Sunday.  Assuming that I won't have enough umph to do something has just triggered that stubborn streak, too, where even if it's a bad idea I'm inclined to do it out of spite.  Assuming that I'm going to be just fine may be more commonly correct at this point, but I can feel a little trapped without that out--making it a choice instead of an expectation increases my joy of the event.

This is a marathon, not a sprint.  There will be good days and bad days.  It's always a part of my thinking; it's always a part of my life.  To understand me is to also acknowledge those pieces, but to find a balance to similarly not obsess about them.

And we've got as much time to practice as my life lasts.