Tuesday, October 30, 2018

How to be a Good Patient

Our bodies are not built to last forever.  I'm sorry if that is news to anyone, but here it is baldly and plainly:  you're probably going to get sick at some point in your life, and you're going to die eventually.

That cheerful thought out of the way, no one likes to think about it more than they have to, but there is that brief period post illness where we appreciate good health a different light, for at least a week or so before we're content to ignore it again.  Well, I say "we" but I am implying persons that are generally healthy.  If you've got something chronic, it's a little more real to you.  Still, we can all identify with that feeling when our noses are blocked up, that we never really appreciated how nice it was to have open nasal passages when we had the chance.

Take a deep breath now and (hopefully) appreciate it, my friends.

We seek different comforts:  some of you may love a warm bowl of soup, others tea, a favorite stuffed animal, a particular movie, that one blanket curled around you like a nest, and a number of other things.  Ideally, too, we have someone that will bring us those things, so that we can site miserably in one place while we recuperate.  I've spoken several times about some of the expectations I have of my caregivers, but I want to explore the other side a little bit this time:  how can you be a good patient?
  • Don't be grumpier than you have to be.  Yes, we know you feel terrible, but that's no reason to take it out on someone else.  You're allowed to be upset about the situation, but there is a huge difference between being frustrated at the situation and making snitty comments to whomsoever is around to hear it.  Additionally, how inclined is that potential helper to stay around if you're opting to take out your frustration on them.  Nasty comments or anger toward your caretaker can led to resentment--why would you want to go back into a room to help someone that is cruel to you?  A little kindness can go a long way, even in how you phrase your requests for assistance
  • Track your symptoms and medications.  If at all possible, monitor this information yourself.  You can write it down, have it on a white board, keep it on an app, set an alarm, whathaveyou, but have access to this information.  As your caretaker may need their own rest, the person coming in may or may not be aware of that situation.  This is an element where you need to advocate for yourself, keeping track of your own schedules when you need another dose of something to ensure that you take things at the right time and don't take too much too quickly.  If you're not in a good state of mind to remember, ask your helper to write them down with you, but have it handy.  Just in case that you need to go the hospital, this information could be VERY important and help move your care in the right direction a little bit faster.  Be sure to mention any symptoms that are not visible and show any signs that are, so that your healthcare professional has as full a story as they can.  Additionally, track when symptoms started--have you been experiencing chest pains for two hours or three days?  When did you start feeling nauseous?  These won't need an exact minute (unless we're talking stroke or cardiac arrest levels, here), but have answers for those kinds of questions, since, again, this could affect your course of treatment.
  • Follow instructions.  When your doctor says finish the full course of the antibiotic, do it.  When your doctor says don't take more than X amount of this in a day, don't take more than that amount.  Unless you've got a violent reaction to the course of treatment, try to follow the prescribed path to the best of your ability.  Give it a few days.  Actually, check with your health professional on maybe when you should expect to see improvement.  But as long as the suggestions are reasonable, try them.  You can return later if you see no improvement or not enough improvement, having at least eliminated some possibilities.  This also follows with your caretaker.  If the nurse tells you not to go to the bathroom without them, honor that request, even if you're pretty sure you can make it fine.  If they don't have to worry about you slipping and knocking yourself unconscious while they tend to someone else, they'll be grateful, even if that means you have to wait a minute or two to go to the bathroom.  For an at-home caretaker, similarly given them that courtesy to feel valued and heard.
  • Remember that your caregiver is balancing different things.  A nurse has a handful of other patients that they are tending to at the same time, all of which have hit their call button at once.  It's a good thing to wait--it means you're not dying.  That being said, yes, it is unpleasant to wait as you're crossing your legs needing to get to the bathroom or you can distinctly feel that it's time for another round of pain medication.  That being said, it's no excuse to be unkind to them when they do arrive.  Again, what impetus do they have to hurry back to someone that talks down to them the whole time?  A family member or a friend that is checking in on you has other tasks that they have to manage, too, and their schedule also needs to be respected, if they are kind enough to do so.  Your needs are absolutely important, but not to the point that you have exhausted their energy and time beyond what they can do.  This is also a responsibility of the caretaker, however, to set reasonable boundaries and otherwise ask for help when necessary.
  • Be honest about your needs and speak up about them.  This can be a tricky one.  I tend to feel guilty about asking for help, whether I'm down with a headcold or recovering from surgery.  I get into a mindset of not wanting to bother anyone.  There is no point, though, in suffering needlessly, no medal or reward for toughing things out you don't have to.  Additionally, it's not fair to harbor resentment toward your caretaker for not reading your mind and offering you what you need.  If you need another round of Tylenol (and the time frames are acceptable), then ask for it.  If you need help repositioning so you can rest, ask for it.  If you need another pillow, ask for it.  If you need to go to the hospital, you get the picture.  After getting repositioning help for example, if you're asked "is that better?" give an honest answer.  No one knows how you are feeling to properly guess what to do for you.  You need to let people know.  If you need help standing up and are offered it, tell people how to best help you to avoid anyone getting hurt.  It is hard to ask for help, but it is incredibly important to do so when you need it and to be honest about it to yourself and your caretaker.  Over time, your caretaker can learn some of the ways that you prefer help best, or they may not--either way, keep that communication going between you so that needs can be met instead of playing some weird guessing game.  
  • Try making requests in bursts.  Ever sit down and get settled only to have your phone go off across the room?  Don't do that to your caretaker either.  If they can maybe address a few of your needs at a time, then that's less bothering that you have to do.  I don't mean to read off the full list but at least mentioning that you would like some additional assistance once they get back from the medicine cabinet, for example.  I've even pulled the "before you sit down, could I trouble you for X" for Andy a few times over and it's much better than the annoyed look he tries to hide when I ask him afterwards.  Now, if I quite suddenly need help to go to the bathroom to throw up, that goes back to the being honest about you r needs elements, but for less urgent requests, it can be nice to see them done in bursts rather than agonizingly spread out.  
  • Thank your caregiver.  This feels like a no-brainer, but it's very easily forgotten when you're just feeling wretched.  It's important to remind your caregiver that you are grateful for their assistance, even if it's just topping off your water cup.  Not saying that you have to lay it on thick, but thank yous are a must and general statements of gratitude such as "I really appreciate you coming out here to help me" or "thank you for all your hard work keeping the house going while I'm sick" help your helper feel valued.  
Whether it's something short or long term, bear these elements in mind.  It's very likely that you'll have a turn yourself at being a caregiver, if you haven't already, at which point I would suggest making note of any of the elements you wish your "patient" would do to help you better help them.  If appropriate, make these suggestions and consider taking them yourself when your turn comes, if applicable.  Our fragile, turbulent bodies need compassion and patience as they heal--people helping in that endeavor likewise need our patience and courtesy.  The better you can subtly take care of your caregiver, the better both of you will be.

Thursday, October 25, 2018

Mega Millions

Conversation has been buzzing about the billion dollar jackpot, and obviously Andy and I didn't win it this time.  On the whole, I scoff at the lottery, if I'm honest.  I've always thought that it was a lot of people looking for an easy way out.  But I've been revisiting this idea recently, enough that Andy and I bought a ticket.

If we put all of our hopes into winning it big, that is a problem.  If we assert that the only way to be happy is to have that big jackpot, that's a problem.  If we put more money toward that than we can afford to waste, that's an issue.  If we're in a situation where we depend on it, we need help.

But we put $4 in this time, because it is fun to be part of the wistful speculation.  We made sure to put no real hopes in winning.  We could have spent that on a couple of chocolate bars and enjoyed them (before feeling guilty about the sugar) for the same cost.  But instead we joined in the conversation, a collective dream with others on just what we would do with an unexpected large sum of money.

Here are some common themes as Andy and I speculated:
  • 10% to the church--I sit on the finance committee, so I have a couple ideas on where to help direct it
  • Save the amount that we know we would pay in taxes on it, so that we aren't in trouble later
  • Pay off my student debt
  • Seriously look at moving to Norway sooner rather than later
  • Set aside an uncertain amount to donate, a couple of organizations and individuals in mind
  • Save at least a quarter of the rest
  • And, yes, we'd have to buy something fun for the hell of it, the answer to which changes with our respective moods but nothing egregious--no new Aston Martin or yacht.  
  • Still go to work the next day
Yes, we'd go back to work the next weekday.  We still need health insurance (remember that I'm still pretty damn expensive to keep alive), and we still want to continue to be productive in some capacity.  We're content in our current positions as it stands now, but knowing that we would have the freedom to move as we need to, that's probably the best part in my estimation of things.  The millennial cross to bear, my 37K of student debt, it makes us feel stuck even as we continue to make progress.  No longer needing to worry about that would be truly freeing.  To know that options exist, even if I don't want to take them, that is a beautiful thing to have and the feeling that I most want.  Removing some of the day-to-day worry, that gives me far more joy than some extra bling.  

So, $4 bought some harmless dreaming, which was a nice, little reprieve.  And that is okay.  

Tuesday, October 23, 2018

Helplessness

I've been in a bad way with my depression recently.  And I was struggling with a long while to pinpoint just what pieces were contributing to the problem, trying to find what needs were unmet and otherwise why I was flashing back to my trauma vortex.  Normal situations that I could write off pushed my buttons more than usual.  There was an underlying anger that I couldn't shake out of.  I wanted to sit in the basement and cry instead of nightly activities or essential house functions.  I was constantly finding myself tensing my muscles to guard myself against something invisible, preparing and protecting myself from some unseen danger. 

In analyzing what was particularly bothering me, I noticed some trends.  

TW:  discussing sexual assault.
  • On the political spectrum, even though the majority of Americans were against Kavanaugh, he was ultimately confirmed.  Regardless of where you stand on his guilt or innocence, there is no good reason to have pushed this confirmation through before an actual, complete investigation was performed.  This ramming through, I feel helpless against the political machine.
  • On the same subject, I whole-heartedly believe Dr. Ford.  I am disgusted by the rhetoric that implies his career is more important than her justice.  I happen to think that every rapist or attempted rapist should receive the consequences of their own actions, the same as I would for a murderer or an attempted murderer.  The cause of rape is rapists.  Full stop.  I commend the courage and resilience of those speaking about their own trauma and behalf of others.  I am reminded that I am in a culture that would question my motivations for reporting a crime rather than investigate or prosecute the crime.  This also makes me feel helpless, and I empathize with those telling their story and their pain.  
  • At work, I feel as though I've been fighting an uphill battle about policy changes, making as much noise as I dare.  This also makes me feel helpless from time to time, knowing that there are channels and people I have to convince in order to affect change.  
  • We've had a couple of financial goals that we're working on that have been slow-going recently, specifically paying off my student loans.  We're about 37K in the hole on those, and it's hard not to look at that number and despair.  I feel as though I'm spinning my wheels on my own future, held in place by this debt.  We talk about moving to Norway, but I struggle to see how it's feasibly financially possible, with the rate we're going at now and our other personal goals.  I feel helpless toward our future.
  • This one probably takes the most explaining:  I know at least four people right now that are pregnant.  I'm excited for them, but I find that I am also blocked from feeling the full excitement for them that I feel I should.  By no means am I implying that they shouldn't have the freedom to talk about it in my presence or that they should censor themselves on my behalf.  Again, this one takes a little explaining.

    I have lost track of how many medical tests I have had in my life.  Colonoscopies alone are in the double digits, for sure.  Combined MRI and CT scans, I'd put myself between thirty and fifty separate events.  There have been a few exams under anesthesia, other scans, and, of course, the surgeries themselves.  Once I reached a certain age, every doctor's form and consultation somehow included asking if I was pregnant or nursing.  Several times, even answering in the negative still meant I had to pee in a cup to prove it, as part of protocol.  I remember all of those in a dense moment with this strong realization--me being sick in front of them is not as important as a cluster of cells that has no identity or viability yet.  For those who have experienced a colonoscopy prep (if you haven't, imagine your body turning into a shit firehouse for an afternoon as you violently expel literally all the matter in your digestive tract), can you picture what your reaction would be if they told you just to go home, that they wouldn't be performing the test today?

    I have been careful and I have been paranoid not to get pregnant because I know that I could potentially be denied the care I need if I were to test positive anywhere.  The person breathing in front of them needing treatment could be denied because of a cluster of cells that's not a person yet, something that statically frequently will abort itself in the first trimester.  The house is on fire, I'm begging for help from the window, and they won't break down the door because there might be something expensive in that room.  As the person in the burning house and in immediate danger, I cannot understand these priorities--if the whole house burns down, everything in it dies.  My very real breathing self is not as important as something that could happen.  There is a whole class of medications (called category X) that most any doctor would not allow me to take, even if that is what I need to survive my symptoms on the potential that I could be pregnant someday.  If I wasn't having sex or if Andy got a vasectomy, there are those that still wouldn't give me those medications because I might be pregnant some "other" way, they imply innocently but with all kinds of insulting undertones that I could be sleeping around, am irresponsible, or otherwise could be raped and become pregnant that way.  Even if they agreed, there would be protocols in place, where I would have to routinely come into the office to pee in a cup, prove I wasn't pregnant.  If I had a hysterectomy, then they would consider giving me category X medication that I could potentially need.  In other words, unless I had a significant and invasive permanent change to my body, I am disqualified from medications that could potentially alleviate my symptoms.  My body has been under enough stress from my symptoms before that it shut off my menstrual cycle of its own accord, thank you, so I wasn't exactly worried about childbearing when I was purely in survival mode.

    I am forbidden from taking category X drugs on the potential that I could become pregnant--I don't even know how to begin to quantify the limitations on tests and options if I were to actually be pregnant.  If I were to become pregnant, I lose the full ability to fight for the medical care I might need.  I don't know how to make that any clearer to people.  I have fought too fucking hard to get to the point of health that I am at now to willingly cripple my arsenal.

    So, yes, whenever I go into a medical test and fill out that part of the form or am asked that innocuous question, I remember all of that in one staggering moment.  I feel that my life doesn't matter while I'm actively fighting for it.  I remember that feeling very acutely, too, when someone asks me when it's going to be "my turn," implying that I should complacently ride the Relationship Escalator and get to popping out babies, tick tock.  I politely refuse to put my life at risk to meet the hypothetical rude person's ridiculous expectations about my life.  It's infuriating.  I feel invalidated.  I empathize with myself in that hypothetical position, and I feel helpless.  
So, we notice the common theme (and the name of the blog post) is helplessness.  I tense up to protect myself the best I can, bracing for impact and guarding the fragile parts of my body.  I have signed papers agreeing to let doctors approach me with knives and to thank them for the experience.  I have smiled and offered my other arm while a nurse struggles to find a vein that will work, when they were all dehydrated and brittle.  I have held my breath while the radiologist says "just one more" for the fourth time as I'm maintaining an incredibly painful position.  I have agreed to give the medicine one more week before giving up on it, even though my symptoms were out of control.  I have held perfectly still while a tube was shoved between my ribs, which I had to be awake for and thus not fully anesthetized to make sure they didn't puncture my lung.  I have stared at the particular corner of the wall, just passed the television, in my hospital room trying not to move because everything hurt but hurt unbearably when moved.  

Feeling helpless is very much a part of my trauma vortex.  Feeling helpless in other contexts still puts me back there.  The surgical drain between the ribs, that was a big one--it fucking hurt, even with a good shot of Diluadid,  and every instinct in me was to get away, but I had to fight my reptilian brain into submission and complacently stay put, breathing as specifically instructed.  In therapy, I was asked to envision a different scenario there, where I fight them off, but I cannot get myself to do it--the necessity of the situation was the only reason I did it, and I cannot take that away from myself, I cannot remove its justification or I was hurting myself for nothing.  Not wanting to return to that space, to feel helpless, is a huge instigator in why I fight back, but it doesn't go away even when I'm arguing down the nurse about what antibiotic we'll be using today or calmly but firmly insisting to my insurance company that these charges don't seem correct.  Fighting back covers up that feeling of helplessness, but it doesn't eradicate it.  So, yes, I've been on edge for a little while now, since these elements have been triggering more time in the trauma vortex than I feel safe staying.  Which, of course, reinforces itself into a fun cycle of PTSD triggers, tense muscles, and short fuses.  

I don't have a clean answer on how to counteract the pervasive helpless feeling.  The best I have for the moment is to avoid those above examples for the time being.  I'm tuning out of the news a little bit more--I don't even want to get my hopes up around the upcoming election, but I will be voting.  Andy and I have been reevaluating our financial goals and where we might make changes.  I have resigned to leave a situation that gets pushy about pregnancy, probably with a clear "Fuck off" tossed in.  I want to mentally frame shift to what I can do, when possible, recognizing that I cannot simply "logic away" all elements of this.  I'm trying to build in a couple of important distractions.  The crux of it, though, is that I need to disassociate feeling helpless with my trauma.  That's some serious uncoupling.  

But first, I need to rest.  

Tuesday, October 16, 2018

Change My Mind

There's a meme floating around the internet, as memes do, that looks something like the following:  
For the sake of accuracy, the original text was "Male Privilege is a Myth--Change My Mind," but that specific argument is not the focus of what I want to discuss today.  Sometimes these memes are funny and innocuous, with a playful debate that builds underneath.  Sometimes these are intended to make someone mad, full-trolling to instigate argument for the enjoyment of pissing people off.  

Let's take a look at the picture, here.  The person in it, and by proxy the person sharing the image, makes a statement and issues a challenge.  They then sit down in their chair, self-importantly drinking coffee/tea.  The poster puts up the pretense of wanting to discuss the issue, but puts the burden on the other party, demanding justification from the other side with an edge of self-righteousness.  It's clear that the poster of the image has no intent to consider the other side.  They're not willing to do any of the work, just sit here and demand that someone else cater to them, demanding evidence that they are prepared to deflect possibly with logic, but often by distraction, ad hominem attacks, or a number of other logical fallacies.  

There is a population of Facebook that approaches their shared content this way.  "Here's my statement.  I won't actually consider your position, but I will pretend to on the surface, relying more on knee-jerk responses and assume everything other than agreement is personal insult."  You can share whatever you'd like to on social media--it's your prerogative--but if you're not prepared to discuss it or deal with the fallout, maybe think twice.  Not everyone is going to agree with you and you're not guaranteed that they will be nice about it.  I'm not saying that you should refrain from posting controversial material.  Rather, I want to emphasize that it's disingenuous to say that you want to start a discussion where you're not planning to also consider what else is being said.  Having a conversation, even a heated one, is okay; pretending that you want to have a conversation when you only want people to pat you on the back and tell you you're right and then blast anyone that suggests something different, that's not okay.  Please be honest with yourself, if no one else, in this case.

Which means that naturally I must also consider how I approach these arguments as well as other beliefs and thoughts.  There are some places where I'm more receptive to new ideas than others--this is true for all people, that we're more flexible in some areas than others.  I want to believe that good, credible evidence will sway my opinion.  In most places, I think it does, anyway.  But I know there are some places where I cling to my biases a little more fervently.  

I'm not threatened by new ideas, and I appreciate new perspectives.  New thoughts and perspectives can help me decide whether my old biases need to be abandoned, need to shift a bit, or are still correct with this new evidence.  If you're afraid to hear new ideas, not only is an opportunity missed to learn something new, but your old biases are weaker for having missed an opportunity to get stronger, if that makes sense.  I'm not going to say that you should change your mind as soon as someone presents a different perspective--instead, I would say that I see only aspects to gain when looking at new ideas.  If someone is threatened by learning more about something or hearing a different perspective, my knee-jerk response is to assume that this particular belief, while deep rooted for that individual, is shallow.  If you cannot explain your position well, then how well do you really understand it?  Think about every interview where the individual's reply is something along the lines of "well, it just is" or similar--do you believe that they know what they're talking about or have thought through why they hold that particular position to expect that to be a strong clincher for their argument?  Have you ever had someone try to explain why a racist or sexist joke is funny?  It usually ends with a "well, you know," but I keep pressing for that explanation of why it's funny,  watching as they dig the hole deeper.  I've known deeply religious people that have fifth grade understanding of the Bible or theology in general.  I've seen people argue about politics on all sides that are clearly repeating someone else's talking points without thinking through them.

It's important to be able to explain your position in your own words, which allows you to find the gaps and really internalize where you stand.  

I expect my mind to change.  I expect my mind to grow.  I will gain more experiences and perspectives and choose where I need to realign my biases, probably push back on a couple if I'm honest.  I know there are elements that I have written in past blogs that I will change my mind on, as new evidence comes to light.  But I know that there are core elements that won't shift nearly so much.  It's hard to change, and, again, I welcome it some in more arenas than others.  But I do accept its inevitability, which seems to help.  Being uncomfortable can be a good thing.  The key, I think, is to allow yourself to be open to new ideas and to be aware of what your own biases are.  It takes time and effort to reach a level of self-awareness needed to identify these biases.  However, knowing these pressure points will only help you in finding the truth.  

Tuesday, October 9, 2018

Melvin & Me, Part 16: Word Vomit

I'm still rolling that phrase around in my head from the last post, "The wound is designed to be open."  It's not expected for me to find closure.  It's not expected for me to "get over it" and focus on everything else.  This truly applies to grief as a whole, that with people that we love and miss the scar remains.  It may or may not ever close--and even if it does, life cannot simply go back to the way it was.  We adapt.  We measure time differently.  I tend to think that this understanding is more encouraging than it seems.  I know I will find better ways to adjust and adapt to my circumstances, and I'm never truly expected to pretend it never happened.  That's freeing, to be out of the social obligation to put on a smile when I need to feel upset or be angry.  I've stood on the soapbox before--there's no manual for how to grieve.  Provided it's not destructive, you feel what you need to feel when you need to feel it.
#truth
Also, image used without permission--genuinely 
could not find the original artist to credit with a reverse image search
I cope in part by talking about it here, digesting all of the large feelings by attempting to order them into sentences and blocks of text.  There are two great compliments that I have received in this endeavor--one I will generalize to "wow, I have a better understanding of what X is really like for someone that I care about" and the other is "I didn't have the words to say this; thank you for posting it."  I am asking for empathy at times, but I am also hoping to make it easier for others to ask in their own way and otherwise normalize different facets of life (colostomies, depression, grieving, and embracing ones own ridiculousness).  

And yet even in acknowledging that it is healthy for me to talk and explore these things, I still struggle with something that I've struggled with for years--when do I bring these things up?  When is it "appropriate" to talk about tough subjects and grief?  And at what points do I choose not to care and talk about it anyway?  

When I am in a really bad place in my depression, where I feel seconds away from tears at any given moment, I've been a passenger to my own mouth launching into heavy topics when there was a sufficient pause.  There was a lot of grief, negativity, and all else that I needed to process that could no longer be swallowed.  Suddenly the dam bursts and all the negative emotions and despairing thoughts come rolling out.  It starts with something like "I'm hyper aware of the hole in my abdomen" or "my butt is sewn shut" with only the vaguest connection to the conversation.  I've known I was derailing the conversation, words flowing unbidden, unwanted, and continuous.  I have even considered limiting social interactions at times specifically to avoid the word vomit situation, as I've grown to read the signs better, so at least it's less likely to sneak up on me.  Still, sometimes a good word vomit is therapeutic.  I've felt I was saying the same things about my situation in different words, as if maybe hitting the right threshold of word vomit might suddenly make the horror of it digestible, feel less impossible, or at least dull my own senses enough to it to move on.

I've learned that swallowing every negative thought and emotion isn't the right answer.  A small thing that I stomach seems to take about ten times as much effort to clear out.  But I think this is part of it, now.  I envision the space as a dark, green cavern, carved out through containing all of the old trauma, but the words are a pus-colored mess.  The space has granulated, but it's still there.  I've been excavating it in sections, but anything I swallow reacts to that environment, immediately feeding off of the existing infection.  On the surface, this looks like I'm not able to hold as much.  It's not that I have less tolerance for negative emotions:  I have less tolerance in allowing myself to carry around as much of it, when it's easier to deal with it before we reach the point where I can no longer gauge when it's going to come out.  I've felt out of control of my body enough as it is--I don't want to allow an unbidden eruption of trauma.  There is some residual fear that once I start talking, I will lose control of how much comes out.  It's not wrong--I've mostly given up feeling guilty about a word vomit situation-- but I recognize that it's a bit gauche and otherwise maybe not what I want to feel in that moment.

Huh.  Speaking of word vomit, I'm not even sure how to rearrange elements of that section.  I feel disjointed in this piece, but also that it is its own example to how those emotions roll out and around.  Today is a day to embrace it.

When I meet someone new and we're getting to know each other, when do I drop this very important part of my life into the conversation?  My disease and my ostomy do not define me, but I affirm that they have shaped me in the choices I have made in response to it.  It's an important part in understanding who I am.  This is true of others, too, that we are defined by where we have struggled and how we have reacted to those elements in our lives.  At what point, whether it's a stranger or a new friend or an old friend catching up, do we decide to tell the truth?

I'm very open about Melvin, both on a clinical and emotional perspective.  But I'm still not sure when to bring it up.  Even to people that are aware of my situation, when do I remind people that its still there?  When is it necessary?  How do I respect the gross-out meter while still being authentic to what I need to talk about in the moment?

At work the other day, I was making a recording of explanations of certain parts of the software, during the middle of which Melvin happily burbled its own input.  I immediately threw my body forward, hoping that putting the desk between Melvin and the microphone might mitigate some of the noise.  I have no idea if the recording has obvious farting sounds or not, and I have no intention of finding out.  Sometimes I'm on the phone with a client and Melvin makes a loud series of blorps--I'm still not sure whether I should acknowledge these.  I don't know if they can hear it, since I normally can't see their faces.  And I don't really want to ask, if that brings attention to something that might have gone unnoticed until I mentioned it.  Maybe they can't hear it; maybe they think I have a phone on vibrate close to the microphone; maybe it sounds like construction nearby or some kind of interference with the phone.  Even when I'm in person with a client, Melvin has done what Melvin does at least at some point over the six hours I'm there and mostly I've calmly continued like I didn't hear anything.

I'm not sure what I feel in those moments.  I suppose it's a little bit of embarrassment but definitely a healthy mix of uncertainty, wondering if I should explain, if this is an appropriate time to have that conversation, particularly as I'm open to the conversation and appreciate teachable moments as they happen, but at work I'm definitely there to teach them something else.  I may never talk to these individuals again, and in any case I don't owe anyone an explanation.  Yet I do feel a small compulsion to explain that I'm not just ripping ass in front of them to be rude, that I'm aware of social constructs regarding farting but have special circumstances (i.e. no ass to rip).  So, mostly, I tend to land on a small level of embarrassment and then some quick oscillations between not caring and caring and landing on mostly not caring, ignoring it in the moment unless they want to open that door.  In the office itself, I do acknowledge it, mostly with a "Good morning to you, too, Melvin" or something similar.  I know that my coworkers know, but I do this as a courtesy to help diffuse any potential awkwardness--I acknowledge it so that we can all cleanly ignore it and move along.  I suppose this has the added benefit, though, of reminding others that this is there, in case I need empathy later.  But mostly, I want to normalize random noises coming from my cube and my body where I can, even if its only for myself. 

The following are simultaneously true:  I don't owe anyone an explanation; sometimes I need to talk about it; sometimes I would rather ignore it, let it be invisible; I don't want to make it awkward; I only have enough umph to normalize so much of it at a time, where I don't give a damn how awkward I made the situation; I don't have a good guideline for what parts are okay to joke about and what are not; I don't want to take up empathy space that someone else might need more.  

In other words, it's a calculated risk to talk about anything that's important, but sometimes it's worth the risk.  I read the room as best as I can and answer questions honestly.  I pack an extra dress with my emergency supplies when I'm going to be presenting to a large group and carry on.  Most of the time, I think it's fair to say that I wait for an invitation to talk about important things or look for empathy, but I've gotten more comfortable asking for it as necessary.  There is no easy answer. I elect to take risks where they make sense, finding those moments of human connection or shrugging off the awkwardness.  I let Melvin be what it is.  I recognize that I am writing some of my own rules.  And I grieve as I need to, occasional word vomit included.

Tuesday, October 2, 2018

Melvin & Me, Part 15: The Wound is Designed to be Open

It has not escaped my notice that it has now almost been a year since Melvin took up permanent residency in my life.  I find myself comparing constantly what I am feeling now compared to what I was feeling then.  In some ways, this is great--I have noticed significant improvements in my energy levels and overall how much better I feel.  In some ways, it's not so great--I'm definitely recalling very vividly and viscerally what I was feeling leading up to the whole event.

As an example, we have a group of folk from college that try to meet up every year.  Last year, Andy and I had our flight canceled on us, leading to a frustrated, impromptu drive to Minnesota, which shattered my energy budgeting for the day and certainly heightened my anxiety as a result.  I won't lie that this colored my experience in the weekend more than I would have liked.  Of course all of that with the added anxiety of my impending surgery, this being only a couple of months before the Melvin-ing.  In short, we were in very different place last year.  This year, there were some very significant changes:  Sara and Erik brought their four-month-old, Andy and I were coming from corporate because of his new position in the company, Elena and Emma had both had major shifts at work and moves, I had Melvin, and many other small and major changes since the previous year that we were all digesting in our own ways as people and as friends.

We're all continuing on, catching up on events of the year and where we've grown as people.  It's easy for me to find moments where I felt stuck and stagnating until I step back and find a better measuring stick.  I've been measuring in too small of intervals, oblivious to elements of incremental change while still being hyperaware of some components of it, if that makes sense. These kinds of parallel events, where I can compare this year to last year, they create an incredibly powerful contrast.

I've had my ostomy for almost a year now, almost a year out from my last surgery.  I still very much remember where I was emotionally at this point last year (and I can definitely go back on old blog posts to get a better idea of it again if I needed to).  There are points where I have to remind myself that scars aren't there to show me that something will never be the same but instead that scars remind me of how I survived.  I take a measure of pride in my scars.

Melvin, though, is a permanent wound that will never scar over, so I have fair bit of cognitive dissonance on what that's supposed to mean.  I know how to deal with scars.  They're closed reminders that I can wear with triumph or hide as my own secret.  But Melvin continues to make me feel exposed in some ways while simultaneously I wear it proudly as a statement of radical self-acceptance.  I have to keep reaccepting, cycling through grief, anger, trauma, and adaptation, even just for physical obstacles.  I knew that these components were going to be there, but I think it's fair to say that it is a flavor of impossible to be ready for the depth ot if.  There's still a lot to work through.

As an illustration, I will highlight the following: Andy and I drove up to Steven's Point, Wisconsin, because his position had him up at Skyward corporate headquarters to present some ideas.  I decided to tag along for the fun of it and also because it put us conveniently much closer to our weekend plans.  Packing was a bit of a flurry, but we headed up on 39 and kept going.  Once we were cleanly into Wisconsin, the landmarks were very familiar and I felt the car closing in on me--while I knew logically that it wasn't true, my body was reacting with an emphatic "we're going to Mayos" panic.  This path meant Rochester, MN, to me.  I had made that drive so many times--sometimes determined, sometimes resigned, sometimes hopeful, but always with a healthy underlaying of fear--and even particular rest areas and rock formations along the path put me immediately back in those places, swimming in the trauma vortex again.  It was hard to breathe; I was fighting back tears; I was instinctively stilling parts of my body and clenching others in a effort to guard myself.  When I could will myself to move enough, I reached out to Andy, told him that I was wigging out, and asked him to distract me.  Writing about it puts me back in that same space again.

I did a chunk of the driving on the way home specifically because I very rarely ever did do the driving back from Mayos--it didn't seem to have the same grip on me if I wasn't a passenger (plus, it was my turn).  Once we get to Rockford or so, I tend to be okay, but that part of Wisconsin, I've really only known it in connection with the drive to Mayos.  I had thought those parts had scarred over better than that.  The wound is open still.

Some elements with Melvin have settled nicely--he's a consistent size and mostly round, which means that I have pre-cut wafers now instead of resizing and trimming these each time, like the first  few months after surgery.  I have my favorite days of the week to do a bag change and patterns for those components.  I plan out when to best do a bag change before being away from home for a day or two.  I spray the fabric-esque backing of the bag itself with ScotchGuard so that it stays a little less damp after showers.  I monitor the skin under the appliance to make sure that it doesn't need additional treatment.  I try to remember to treat this part of me with compassion, still working toward a frameshift in my mind in how I think about sensitive parts of my digestive and immune systems.  And mostly, I get on with my life.
The current wafer has a convex part, putting a little
extra pressure outside of Melvin, ensuring that the
ostomy pooches out a little bit more and, in my case,
is less inclined to leak.  Still all pre-cut so I can slap
it on directly from here instead of trimming.

This is my normal.  It's easier some days than it is others.  I'm still learning about my emotional boundaries pertaining to Melvin and the different components of my trauma/depression/anxiety, but my awareness is growing and, with it, my acceptance. I am remembering where I was, contrasting it to where I am now.  This helps in some ways and sparks frustration in others.  There are scars that I'm not aware of until they sneak up on me.  And I know that while I can be well-adjusted to a number of these components, I must also realize that things are continually changing, that each yearly or infrequent event is going to be a space to consider that again.

The wound is designed to be open.