With winter making one last big hurrah through Illinois, Andy and I are pleased to see sickness leave our household (knock on wood). Andy had a nasty kind of flu that only lingers now as some remaining fatigue. He tried to isolate himself, but I don't listen well to the "don't come near me; I'm sick," stuff, even though I know it's good sense. I just don't tend to get the things that make sense. I ended up with cold that, while unpleasant, was certainly not Andy's full-blown blah.
What is it like to be sick with Melvin? I'm glad you asked. There are a couple of things I have noticed.
Coughing sucks. Think about the last time that you were up all night coughing and how sore your chest and abs were the next day. Whelp. Sneezing is worse. My abdominal muscles are still a few shades of weak, having been rather disrupted by the whole surgery thing, coupled with the permanent hole through the middle of them. It hurts, actually, when the muscles contract around that permanent wound sharply and strongly. I knew this after surgery, but I am surprised how painful this can still be. Andy and I both sneeze in the presence of bright lights--my whole family does, actually. This is called a photic sneeze and is something purportedly present in about 25% of the population, according to a quick internet search. Growing up, we'd say that the sun made us sneeze. These are especially frustrating when the sun catches a glint of chrome and I have to sneeze while driving--I've thought more than once "this is how it ends." With both coughing and sneezing, I throw an arm over my ostomy to help push against it. The positive pressure on the outside helps stabilize and lessen the shock and thereby the pain. So, with a photic sneeze, I'm trying to drive with one hand, throw another arm to protect my side, and a third arm to cover my sneeze.
...Wait.
So I end up doing an awkward dab trying not to go into oncoming traffic, or hope my elbow is enough positive pressure, or remember to wipe down the steering wheel later.
One more piece to that camp that surprised me a bit: blowing your nose takes some interesting abdominal and diaphragm control. So I have one hand on my abdomen and another hand with the tissue around my nose. And how many prolonged contractions I'm okay with compared to how much snot I need to expel, well, that's the trick. After a question from a friend, I've also had a lot to think about regarding how I breath for singing, too, which might be some additional thoughts on another day.
I'll add one more element to that. I am waiting--waiting--to sneeze or cough in public, with my hand flying immediately to my abdomen in response, and then have the person look at me with a seemingly knowing eye and ask me when the baby is coming. That'll be a fun explanation that I'm not protecting my abdomen for the reason that they think I'm protecting my abdomen. Gosh, I should really think of something quippy for that.
Now, thankfully this time I did not have to worry about symptoms of diarrhea or vomiting, but I know that it will also have its own difficulties. Firstly, the mechanics themselves for vomiting would be similarly uncomfortable, maneuvering all of those abdominal muscles in a strong, involuntary wave. At least I won't have to worry when I'm not sure which end is going to go, I don't have to decide whether I sit on the toilet ready to vomit into a trashcan or try to move back and forth to the toilet as the waves come. It's just a matter of keeping an eye on the bag, that it doesn't get too full. While everyone has to worry about dehydration when sick, I am especially susceptible. The large intestine does a lot of water absorption for the body and I am working at 3/5ths capacity there. I have to be especially vigilant in pushing fluids.
Another weirdness relating to having less colon is that time-release medications are considered a little bit differently. I have seen a twelve hour Musinex staring back up at me from the toilet bowl--it didn't have enough time in my system to work for twelve hours. I'm not sure what else has some different effects as a result, but I read the directions and contraindications just in case.
Other than that, I get to be as miserable as the rest of ya'll when I'm sick. Just need to plan out when to do the next bag changes and continue to eat a lot of soup in the meanwhile. Small modifications within an otherwise normal part of life.
Thursday, March 29, 2018
Tuesday, March 27, 2018
The Creative Funk
As Andy has been going through his 100 Day Music Challenge, he has been learning a lot about himself and rethinking how he approaches music and art in general. He's been excited in sharing some of the reflections with me, and I have been excited to hear them, though at the same time, I wear a very particular smile. He tells me that his channel has been seeing a lot more views now that he's been putting out a lot of content--I've been telling him that for a while. Andy reports that when he's in a steady practice of making music that he finds he wants to continue to do so and even that it comes more readily to him--I've also been telling him this for a while. The idea that art does not needs to be perfect before it can be shared was also a "new" thought for him. I've talked to my brothers about new things they've learned about life, and I've had the thought in my head "well, yes, I've told you that." But these are lessons that no matter how many times I would have told them would not have been absorbed, not in the way that they have now internalized them. So I've learned to squelch the "I told you so" and/or "I could have told you that" and instead smile and congratulate them for learning something new about themselves and the world. I know that there are still some things today that I similarly haven't discovered for myself, while patient friends and family wear that same smile and shake their head. We all learn differently and at our own pace.
Now in making art, Andy and I have been involved in creative practices of some kind or another for a significant portion of our lives, but I have better discipline and, in some senses, more experience (objectively, a degree in Creative Writing). As such, there are a few ways that I'm more "mature." Andy has been working on some different projects now in music, including working through an a cappella version of a song from a favored band of ours, Structural Disorder (check out them out here or on Spotify), called "Peace of Mind." For this project, Andy had about 38 different tracks of himself that he was layering. And it was and still is an ambitious project. He reached a point recently where he was ready to throw his hands up, that everything he was doing was making it worse and he was beginning to lose faith in his ability to do the project. This is a critical point in making art, when to keep tweaking and when to leave well-enough alone. And there is also the point of feeling down in your own process.
In part of my due diligence in being a good support system and cheerleader for Andy, I did have to break that silence and try to impart some of what I've learned about the creative process. Specifically, there is a common point in the creative process where one is certain that EVERYTHING they have done is absolute garbage. The following graphic actually sums it up quite well.
Andy was solidly in the 3 and 4 camp. I've done that whole cycle I don't know how many times. And even the old stuff that is decidedly not "awesome" still has merit and good points in being part of my growing process or as an experimentation of some kind, to make the words work better in the future. Additionally, it's hard to find a working metric--I'm not as successful as X and I don't have as many followers as Y and my writing doesn't sound like Z--and, no, I don't think I'm going to write the next great American novel; but what I can do is continue to express things in my own unique voice and work better to improve against my older self. Creative anxiety doesn't go away, but it can be borne more easily in time. It's a particular kind of worry. Art--whether it's a drawing, a sculpture, singing a song, a play, inane blog posts--requires revealing a part of yourself, being vulnerable in some unique ways, whether the work is something deeply biographical or simply showing what it is you can do. That's scary work. It is risky, but then it has a different kind of reward, too. There have been many blog posts that I have scrapped or delayed at least until I could turn them into something a little more polished. Sometimes, these become my favorites and sometimes they limp along anyway as they are and it's time to look at the next gathering of thoughts instead.
Now in making art, Andy and I have been involved in creative practices of some kind or another for a significant portion of our lives, but I have better discipline and, in some senses, more experience (objectively, a degree in Creative Writing). As such, there are a few ways that I'm more "mature." Andy has been working on some different projects now in music, including working through an a cappella version of a song from a favored band of ours, Structural Disorder (check out them out here or on Spotify), called "Peace of Mind." For this project, Andy had about 38 different tracks of himself that he was layering. And it was and still is an ambitious project. He reached a point recently where he was ready to throw his hands up, that everything he was doing was making it worse and he was beginning to lose faith in his ability to do the project. This is a critical point in making art, when to keep tweaking and when to leave well-enough alone. And there is also the point of feeling down in your own process.
In part of my due diligence in being a good support system and cheerleader for Andy, I did have to break that silence and try to impart some of what I've learned about the creative process. Specifically, there is a common point in the creative process where one is certain that EVERYTHING they have done is absolute garbage. The following graphic actually sums it up quite well.
Holistically, I'm pretty damn proud of the body of work that is this blog. There are some overbearingly pedantic posts, some absurd components, a couple genuinely bad posts, a few moments of real truth, and a few things in between. There are days when I'm certain that this is a waste of time all the same, hitting the low point of that cycle. I don't tend to linger there as long as I used to. This blog has led to many interesting discussions with different people. It has helped me process through a lot of different things. This blog has helped me learn how to ask for empathy that I need. It has merit to me, and I treasure those discussions where someone else identifies with its contents or has a good laugh.
Thank you for being a part of it. I hope that you, as either a silent lurker or vocal reader, can learn from my experiences or see some of your own in a different light, think about things differently and find your own voice. To come back to the beginning of this post, I imagine that hearing things will still be different from actualizing them for yourself, but there is joy in sharing these together. It helps to have an audience--even the silent parts of it--and it helps to have feedback. ...And I have now rewritten this paragraph enough times that it's time to leave it be, too.
I am asking this next component plainly: Andy could use some encouragement. He has a harder time pulling himself out of that funk. Please check out THIS LINK and watch/like/comment, all of the above. There are many, many other videos to see here, too. Right now, that kind of encouragement would mean a lot to him and consequently to me. Thank you in advance.
Tuesday, March 20, 2018
Melvin and Me, Part 9: Melvin Away from Home
My confidence is continuing to grow, expanding my comfort zone of where I will take myself and not worry constantly about my ostomy bag. Some of this is due to specific adaptations, new habits, and calm in my own ability to handle a crisis. Some of this, too, is simply the overall adjustment to Melvin as part of my life. Here are some of the components that I've noticed, starting to re-introduce social situations back into my routine.
With Crohn's, I've had to keep an eye out for bathrooms in my vicinity for a long time; it's second nature by this point to log in my brain the location of the bathrooms or briefly scope out where it is likely to be in whatever restaurant, building, whathaveyou that we go to. I'm never sure when I might need one. That certainly doesn't go away now with Melvin, though it is a little different. I wonder whether I will be able to navigate that particular bathroom to empty out my bag. I wonder if I will receive a condescending look if I go into the handicapped stall (honestly, I feel this one is a matter of time). I wonder how many people think I haven't flushed the toilet, just because Melvin's "dust" doesn't usually settle well with one flush, and I'm also worried about making people wait so I don't want to sit there and watch it each time. Or other times, there is a clump of poop that sticks at the top of the bowl, where it's easier for me to aim and where there is less water to help wash it away; sometimes, I grab another piece of toilet paper to push it along, annoyed in the back of my mind that these weren't necessarily built with my needs in mind. I wonder whether the toilet paper will actually rip with only one hand or if I'll sit there flailing a bit, trying not to use three feet for a six inch job. My preferred method, too, it two squat in front of the toilet to minimize splashback, which is at least partially visible to the person next to me--I wonder how much other people wonder.
Even going to someone's house doesn't free me from all these worries. Firstly, I look at how you set your toilet paper. The toilet paper should come over the top. No, there is a right answer to this: it should come over the top. Here's why: when I am trying to get the toilet paper one-handed because the other hand is keeping attention on not spilling the contents of my bag on the floor, toilet, my shoes, etc., I need the paper to roll out smoothly and tear smoothly. If the roll is underneath, it takes extra fumbling to get it to roll out nicely. I do make a mental exception to cat owners and those with small children, since I know that they can also take advantage of how easily the toilet paper rolls out. Also, I am face to face with everyone's toilet, public or private, and I do judge that, too, whether I mean to or not. Not to say that my house's toilets are pristine, but I always do take a longer view of this area than most. These things cross my mind in an instant, sizing up the scene after I close the door behind me.
Regarding visiting with friends, there is one other weird element worth mentioning--I do not like dogs as much as I used to. If the dog jumps up and is tall enough to reach my stomach upon doing so, I'm worried. I am not keen on the idea of those paws more or less directly on my intestine. During my first run with an ostomy a few years ago, we had a neighbor with some very poorly trained dogs. While the dog was jumping up and placing its paws directly on my abdomen, I froze and was decidedly uncomfortable with the situation. The neighbor kept assuring me, "oh, he's friendly!" as if that made it okay. It did not. I was genuinely scared and rightly so. Just a couple thin layers of cloth and plastic between me and some serious issues with those paws. It is not safe, and I still feel a rise of panic thinking about it. Now those with smaller dogs are not completely off the hook--there is a second issue with dogs. Melvin smells weird. I mean, apparently really weird to dogs, at least. Their noses are drawn right into that spot on my stomach as they try to sort out what in the heck is going on there. I'm patient the first time, let them take a few test smells if their nose isn't too firmly fixed there. If their nose stays glued to my side, I will push them away from me on the couch, chair, sidewalk whatever. That being said, I wouldn't want anyone to feel they had to put any well-behaved dog away if I were coming over--it is still your dog's space before it is mine--but I would hope that my pushing the dog away from my intestines is understood without offense taken.
Other than visiting someone's house nearby, I pack the car a little bit differently once we are a certain distance from home. There is a small black bag that spends a lot of time in the glove compartment of our car, with a complete bag change and supplies. If I'm going to be out of an hour radius from home for more than half a day, I probably have a second bag change, just in case something catastrophic happens as well as a change of clothes. Something that stays close by, something that is handy in my luggage, and the knowledge that I will excuse myself and ask for help when it is needed. Andy is one of my best helpers, so his proximity is another factor in my confidence--how available and/or helpful will help be if I need it? Related question, do people really vomit at the smell/sight of poop or is that just a thing in the movies?
While I have a great many shower conversations and components planned, I know that I cannot plan for every contingency, which means I've mostly stopped trying. This is overwhelming and simultaneously liberating because I feel confident that we'll figure it out in the moment. It's that part in the planning when I'm ready to just go with the flow, knowing that I've done everything I can. That being said, I'm sure I'll still have a good story the first time Melvin goes through the airport, hopefully just to report that all went well.
My confidence fluctuates from time to time, particularly when I have a leak, but I don't feel chained to my home and my stock of supplies. This has been an important part of reclaiming my life, feeling comfortable and confident in my environment again. That radius will continue to grow as time continues on, I think. And I look forward to these new adventures. I imagine, too, that some things are changing so slowly that I don't even realize that I'm making these changes. It just is. I don't think that I can say that it's normal yet, but it's real without being quite as heavy. There are still waves of grief that roll through, but they at least don't feel as frequent, unless I've just gotten used to that, too. Moments when I'm working out and wary about performing a move because it brings my knee close to my abdomen, twisting to reach something and hearing plastic crinkle, a sudden sneeze that hurts specifically along my weakened abdominal muscles, and others are sometimes nothing and sometimes entirely devastating. But the world continues along anyway, and I continue to be my small part in it.
With Crohn's, I've had to keep an eye out for bathrooms in my vicinity for a long time; it's second nature by this point to log in my brain the location of the bathrooms or briefly scope out where it is likely to be in whatever restaurant, building, whathaveyou that we go to. I'm never sure when I might need one. That certainly doesn't go away now with Melvin, though it is a little different. I wonder whether I will be able to navigate that particular bathroom to empty out my bag. I wonder if I will receive a condescending look if I go into the handicapped stall (honestly, I feel this one is a matter of time). I wonder how many people think I haven't flushed the toilet, just because Melvin's "dust" doesn't usually settle well with one flush, and I'm also worried about making people wait so I don't want to sit there and watch it each time. Or other times, there is a clump of poop that sticks at the top of the bowl, where it's easier for me to aim and where there is less water to help wash it away; sometimes, I grab another piece of toilet paper to push it along, annoyed in the back of my mind that these weren't necessarily built with my needs in mind. I wonder whether the toilet paper will actually rip with only one hand or if I'll sit there flailing a bit, trying not to use three feet for a six inch job. My preferred method, too, it two squat in front of the toilet to minimize splashback, which is at least partially visible to the person next to me--I wonder how much other people wonder.
Even going to someone's house doesn't free me from all these worries. Firstly, I look at how you set your toilet paper. The toilet paper should come over the top. No, there is a right answer to this: it should come over the top. Here's why: when I am trying to get the toilet paper one-handed because the other hand is keeping attention on not spilling the contents of my bag on the floor, toilet, my shoes, etc., I need the paper to roll out smoothly and tear smoothly. If the roll is underneath, it takes extra fumbling to get it to roll out nicely. I do make a mental exception to cat owners and those with small children, since I know that they can also take advantage of how easily the toilet paper rolls out. Also, I am face to face with everyone's toilet, public or private, and I do judge that, too, whether I mean to or not. Not to say that my house's toilets are pristine, but I always do take a longer view of this area than most. These things cross my mind in an instant, sizing up the scene after I close the door behind me.
Regarding visiting with friends, there is one other weird element worth mentioning--I do not like dogs as much as I used to. If the dog jumps up and is tall enough to reach my stomach upon doing so, I'm worried. I am not keen on the idea of those paws more or less directly on my intestine. During my first run with an ostomy a few years ago, we had a neighbor with some very poorly trained dogs. While the dog was jumping up and placing its paws directly on my abdomen, I froze and was decidedly uncomfortable with the situation. The neighbor kept assuring me, "oh, he's friendly!" as if that made it okay. It did not. I was genuinely scared and rightly so. Just a couple thin layers of cloth and plastic between me and some serious issues with those paws. It is not safe, and I still feel a rise of panic thinking about it. Now those with smaller dogs are not completely off the hook--there is a second issue with dogs. Melvin smells weird. I mean, apparently really weird to dogs, at least. Their noses are drawn right into that spot on my stomach as they try to sort out what in the heck is going on there. I'm patient the first time, let them take a few test smells if their nose isn't too firmly fixed there. If their nose stays glued to my side, I will push them away from me on the couch, chair, sidewalk whatever. That being said, I wouldn't want anyone to feel they had to put any well-behaved dog away if I were coming over--it is still your dog's space before it is mine--but I would hope that my pushing the dog away from my intestines is understood without offense taken.
Other than visiting someone's house nearby, I pack the car a little bit differently once we are a certain distance from home. There is a small black bag that spends a lot of time in the glove compartment of our car, with a complete bag change and supplies. If I'm going to be out of an hour radius from home for more than half a day, I probably have a second bag change, just in case something catastrophic happens as well as a change of clothes. Something that stays close by, something that is handy in my luggage, and the knowledge that I will excuse myself and ask for help when it is needed. Andy is one of my best helpers, so his proximity is another factor in my confidence--how available and/or helpful will help be if I need it? Related question, do people really vomit at the smell/sight of poop or is that just a thing in the movies?
While I have a great many shower conversations and components planned, I know that I cannot plan for every contingency, which means I've mostly stopped trying. This is overwhelming and simultaneously liberating because I feel confident that we'll figure it out in the moment. It's that part in the planning when I'm ready to just go with the flow, knowing that I've done everything I can. That being said, I'm sure I'll still have a good story the first time Melvin goes through the airport, hopefully just to report that all went well.
My confidence fluctuates from time to time, particularly when I have a leak, but I don't feel chained to my home and my stock of supplies. This has been an important part of reclaiming my life, feeling comfortable and confident in my environment again. That radius will continue to grow as time continues on, I think. And I look forward to these new adventures. I imagine, too, that some things are changing so slowly that I don't even realize that I'm making these changes. It just is. I don't think that I can say that it's normal yet, but it's real without being quite as heavy. There are still waves of grief that roll through, but they at least don't feel as frequent, unless I've just gotten used to that, too. Moments when I'm working out and wary about performing a move because it brings my knee close to my abdomen, twisting to reach something and hearing plastic crinkle, a sudden sneeze that hurts specifically along my weakened abdominal muscles, and others are sometimes nothing and sometimes entirely devastating. But the world continues along anyway, and I continue to be my small part in it.
Tuesday, March 13, 2018
Vaguebooking and other Internet Faux Pas
One of the marvels and downfalls of Facebook and other social media sites is that everyone now has a podium, a place where they can state what is on their mind and be heard by potentially a large number of people. That is a daunting thing in the same breath that it is liberating and empowering.
What does it mean to have a podium? It means that you have the power to potentially influence people, that you have a megaphone now, even if it's only on your own page. Unless you have been blocked or filtered out, you have the potential to show up on hundreds of (or more) feeds. Here's the trick, though: EVERYONE has a megaphone, which means there's a lot of shouting to be heard. Your voice is out there, sure, but there's still a great deal of difficulty in truly being heard, as we all wade through the sea of information to find the voices we want to listen to.
What to do with this newfound power? That is the million dollar question. I cannot answer that for you. I find for myself that the answer is fluid, that I have different things to say on any given day and otherwise I don't have to wrap it in a pretty, GRAND PURPOSE kind of package. Many seem to flounder in finding the difference between social presence and power. Worse yet, they might inadvertently turn off their audience by breaking some of the unwritten rules of online social interaction.
This is not to say that everyone on social media has this mindset specifically (many people are happy to share a recipe or family pictures without engaging in any of the following, for example, while others are vocal without falling into these pitfalls), but that there are many who abuse or do not know what to do with this situation. What this list represents are some of the results of this culture shift and/or some faux pas many people do not realize they are committing. This article is not to specifically condemn anyone but instead to bring consideration and awareness when comporting with others out there in the digital arena, why others might have muted your feed or don't respond the way you feel they should.
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Re-Posting without Fact Checking
Ugh. I've seen articles spread like wildfire that are patently false. Unfortunately, the only time we collectively stop to consider the sources or the potential facts of an article/video/etc. is on April 1st. Sometimes, too, it's apparent that people didn't even read/view the link in question before sending it on. There is a healthy bit of skepticism that is missing here. Every article should be subject to the same scrutiny as the ones on April 1st. It seems that we care more about who shared it than whether or not it has validity. I've been guilty of this one, too. A couple of hints though: consider the source itself (is it, say, The Onion? or a site that has a clear and obvious bias?), consider the date of the source (if it happened, say, three years ago, it probably has nothing to do with this current whatever), remember that sensationalist titles should be suspect by default (e.g. "Documents Prove without a Doubt that [effigy of choice] is a Stinking Liar"), and perform a quick search, looking for CREDITABLE sources that confirm it.
There's a special subcategory for this one: Missing Persons posts. Is there a date on this post or how can you otherwise be sure you're not spreading around information from 2012? Is there any contact information? Is that contact information any kind of credible? If there is neither a date nor someone to contact, it's quite possibly just a search for likes and shares. Yes, I think most people consider when they share these that they're doing something small but helpful, but I need to put this out there: what if the person who made that original post is an abusive party? What if you are helping someone find their victim again, after said victim finally got themselves and/or their children away? Unless you know the situation, I would suggest not passing these things along, being on the edge of caution.
Vaguebooking
Yes, we are a culture of likes and attention. Can anyone remember back to a time when advertisements were not asking for likes on Facebook? When you weren't asked to prove your fervency to a cause by sharing/liking some status? Vaguebooking is a specific ploy for attention, that is fishing for comments or conversation, demanding that people be engaged. Examples of this include, but are not limited to, the following:
Complete Lack of Filter
I find that everyone's day to day life can be interesting, that I don't know someone's experience. But there is a difference between being honest and being a jerk or being on the unnecessary/gross side of transparent (e.g. "Check out this poo I made today!"). Being authentic to oneself is one thing; being passive aggressive is another. There is a difference between saying what's on your mind and releasing private information that maybe would be best handled with a conversation with the individual first.
Clickbait/Sharebait
Think about article titles as a broad category. Yes, in order to get advertising revenue and all else, these are measured in clicks, shares, likes, and traffic in general.
What does it mean to have a podium? It means that you have the power to potentially influence people, that you have a megaphone now, even if it's only on your own page. Unless you have been blocked or filtered out, you have the potential to show up on hundreds of (or more) feeds. Here's the trick, though: EVERYONE has a megaphone, which means there's a lot of shouting to be heard. Your voice is out there, sure, but there's still a great deal of difficulty in truly being heard, as we all wade through the sea of information to find the voices we want to listen to.
What to do with this newfound power? That is the million dollar question. I cannot answer that for you. I find for myself that the answer is fluid, that I have different things to say on any given day and otherwise I don't have to wrap it in a pretty, GRAND PURPOSE kind of package. Many seem to flounder in finding the difference between social presence and power. Worse yet, they might inadvertently turn off their audience by breaking some of the unwritten rules of online social interaction.
This is not to say that everyone on social media has this mindset specifically (many people are happy to share a recipe or family pictures without engaging in any of the following, for example, while others are vocal without falling into these pitfalls), but that there are many who abuse or do not know what to do with this situation. What this list represents are some of the results of this culture shift and/or some faux pas many people do not realize they are committing. This article is not to specifically condemn anyone but instead to bring consideration and awareness when comporting with others out there in the digital arena, why others might have muted your feed or don't respond the way you feel they should.
Re-Posting without Fact Checking
Ugh. I've seen articles spread like wildfire that are patently false. Unfortunately, the only time we collectively stop to consider the sources or the potential facts of an article/video/etc. is on April 1st. Sometimes, too, it's apparent that people didn't even read/view the link in question before sending it on. There is a healthy bit of skepticism that is missing here. Every article should be subject to the same scrutiny as the ones on April 1st. It seems that we care more about who shared it than whether or not it has validity. I've been guilty of this one, too. A couple of hints though: consider the source itself (is it, say, The Onion? or a site that has a clear and obvious bias?), consider the date of the source (if it happened, say, three years ago, it probably has nothing to do with this current whatever), remember that sensationalist titles should be suspect by default (e.g. "Documents Prove without a Doubt that [effigy of choice] is a Stinking Liar"), and perform a quick search, looking for CREDITABLE sources that confirm it.
There's a special subcategory for this one: Missing Persons posts. Is there a date on this post or how can you otherwise be sure you're not spreading around information from 2012? Is there any contact information? Is that contact information any kind of credible? If there is neither a date nor someone to contact, it's quite possibly just a search for likes and shares. Yes, I think most people consider when they share these that they're doing something small but helpful, but I need to put this out there: what if the person who made that original post is an abusive party? What if you are helping someone find their victim again, after said victim finally got themselves and/or their children away? Unless you know the situation, I would suggest not passing these things along, being on the edge of caution.
Half-Baked Theories
This is similar to not checking sources, but significant enough to warrant its own section. The distinction here is that there is a difference between passing information on and writing up a new rationale or explanation of your own that doesn't have a logical leg to stand on. If you were giving a speech in front of a live crowd, chances are you might at least spend some time considering what you wanted to say, practice, and otherwise make sure that your information was presented as cohesively and persuasively as possible. It's so easy now to make a glib statement in a tweet that we hit send without fully thinking it through. I would never claim that people haven't said stupid things before Facebook, but now there are more speakers, producing comments and posts at a rapid speed, so I would argue that there are more stupid things being said as a whole, in a documented, public place. I did not know how many child psychologists, and animal behavior specialists I knew until everyone had something to say about Harambe (~sarcasm flag~). And everyone was an air traffic control expert, lawyer, or department of transportation guru now that United Airlines has had their PR fiasco. The parents should have done X, the airline should have done Y, and none of these assertions really help. They are an attempt to insert yourself into the situation, to be seen and involved in something that does not involve you. When it's so easy to press send and weigh in on a situation, it seems that less and less people consider what they are saying and whether or not it has any logical basis or sometimes even makes sense. For example, I submit the following:
Above, Allison states, in not so many words, that we should just get over it and get a better job. Her outlook on the situation according to her comments is what we should do instead, despite all of our very real experiences and realties regarding my healthcare needs, is that we are wrong for being worried in the first place. The truth of the matter is, there is no job that we could get that would properly cover all of my medical expenses. We actually have great insurance, but it is still very expensive to keep me healthy and functioning, which is how we keep our insurance in the first place. And we know we're some of the lucky ones. One bad day--either a surprise cancer diagnosis or an accident at work--can be the death knell on a family's opportunities and finances. All of those careful decisions, though, and the resulting burdens are glibly dismissed in her retorts.
This leads me to an important subcategory: Yourself/One Story as the Only Truth
This is similar to not checking sources, but significant enough to warrant its own section. The distinction here is that there is a difference between passing information on and writing up a new rationale or explanation of your own that doesn't have a logical leg to stand on. If you were giving a speech in front of a live crowd, chances are you might at least spend some time considering what you wanted to say, practice, and otherwise make sure that your information was presented as cohesively and persuasively as possible. It's so easy now to make a glib statement in a tweet that we hit send without fully thinking it through. I would never claim that people haven't said stupid things before Facebook, but now there are more speakers, producing comments and posts at a rapid speed, so I would argue that there are more stupid things being said as a whole, in a documented, public place. I did not know how many child psychologists, and animal behavior specialists I knew until everyone had something to say about Harambe (~sarcasm flag~). And everyone was an air traffic control expert, lawyer, or department of transportation guru now that United Airlines has had their PR fiasco. The parents should have done X, the airline should have done Y, and none of these assertions really help. They are an attempt to insert yourself into the situation, to be seen and involved in something that does not involve you. When it's so easy to press send and weigh in on a situation, it seems that less and less people consider what they are saying and whether or not it has any logical basis or sometimes even makes sense. For example, I submit the following:
 |
| There are many, many examples that I can point to in this conversation. |
This leads me to an important subcategory: Yourself/One Story as the Only Truth
Mathematically speaking, one cannot calculate an average without at least three data points. And I could go on for a LONG time on how correlation does not equate to causation. These are the kinds of arguments that hinge entirely around "well, this is my experience so this is how it always is." In the above example, Allison states that she doesn't lose any sleep worrying about things so Andy losing sleep is because he's wrong and also states twice that they don't want to be covered by insurance (spoken to people that have a very visceral understanding of how expensive healthcare can be, no less). This point gets a little squiffy in some situations, because one friend telling me that they had bad service at such-and-such a place will give me pause, but I don't tend to apply this to large situations. In any case, asserting that this is the way that something is or should be for everyone based on that personal idea or experience is trying to govern everyone else into your way of thinking with or without data to back you up or grace to allow for differences of opinion. Great example of this is the idea that poor people "deserve" to be poor. There are SO MANY complexities in poverty and all kinds of fantastic data that help clarify that there are cycles and patterns and even just bad luck (getting sick or some other health issue within the family, for example) that lead to this, rather than the assumption "oh, they just made bad decisions." Or even on a small spectrum, a barrista spilled coffee on me once does not mean that all Starbucks employees are callous, vengeful hipsters. The world is more complex than that.
Also, it is worth mentioning that there is a big difference between an opinion and a belief, and I'm meaning the "well, it's just my opinion" cop-out in arguments. "I like chocolate more than vanilla" is an opinion; "I think that non-white people are lesser than white people" is something completely different and patently racist. It's uncomfortable, but beliefs need to be challenged from time to time, to see if they're worth keeping. In the meanwhile, we cannot blindly accept things that conform to our biases because it makes us feel good.
Personal Attacks as an Argument Clincher (ad hominem)
This tends to happen most often in either political or religious posts, as far as being part of the conversation. Tempers fly and the debate is lost into a tumble of assertions about how so-and-so is a terrible person.
See also the comment above from the first screenshot series, specifically the "Maybe you need to stop being so entitled."
After seeing one individual attack on a friend's posts repeatedly, I started into the following:
Is it arrogant to quote myself? Ah, well, here it is anyway: "Attacking the person is not the same as attacking the argument; in fact, it cheapens or distracts from the point you're making. We can have respectful discourse without resorting to personal attacks." I don't call Bart a cruel person or a jerk or make any spoken assumptions about him--I simply point out a couple of concerns I have with his printed behavior. Even with Allison in that top screenshot, her actions are the problem, not that she is "a horrible person."
Poor Grammar/Spelling/Capitalization
I automatically mentally dock an argument or post a few points if they cannot take time to spell out words like "be," "are," and "you." If your argument is slurred together in a run-on sentence, the lack of clarity also detracts from you point, as well as distracting away from the whole conversation as people then subsequently point and laugh at egregious typos, again stripping authority out of your own argument by not doing a simple proofread (excuse me for a moment while I double-check my entire blog post). In the first screenshot of this article, the "Reax" Allison uses certainly doesn't help her cause.
I will also include the use of ALL CAPS. It still surprises me how many people do not know that this is the computer equivalent of yelling at someone. Yes, the occasional word can be put into caps for emphasis, but DON'T GO AROUND YELLING AT PEOPLE UNLESS YOU MEAN IT. See? Ugh, I don't even like looking at as an example. No one wants to be yelled at, even from a computer screen. Yes, the emotion might be extreme, but please use sparingly all the same--regardless of the intent, it does turn people off.
Game Invites
Stop. Just stop. These have gotten a little more subtle, switching to "So-and-so needs such-and-such for their game," but the intent is still to try to get you into the game.
This tends to happen most often in either political or religious posts, as far as being part of the conversation. Tempers fly and the debate is lost into a tumble of assertions about how so-and-so is a terrible person.
 |
Extra points if you call people out for Name Calling earlier in the conversation
Double points for doing it in the same sentence
|
After seeing one individual attack on a friend's posts repeatedly, I started into the following:
Poor Grammar/Spelling/Capitalization
I automatically mentally dock an argument or post a few points if they cannot take time to spell out words like "be," "are," and "you." If your argument is slurred together in a run-on sentence, the lack of clarity also detracts from you point, as well as distracting away from the whole conversation as people then subsequently point and laugh at egregious typos, again stripping authority out of your own argument by not doing a simple proofread (excuse me for a moment while I double-check my entire blog post). In the first screenshot of this article, the "Reax" Allison uses certainly doesn't help her cause.
I will also include the use of ALL CAPS. It still surprises me how many people do not know that this is the computer equivalent of yelling at someone. Yes, the occasional word can be put into caps for emphasis, but DON'T GO AROUND YELLING AT PEOPLE UNLESS YOU MEAN IT. See? Ugh, I don't even like looking at as an example. No one wants to be yelled at, even from a computer screen. Yes, the emotion might be extreme, but please use sparingly all the same--regardless of the intent, it does turn people off.
Game Invites
Stop. Just stop. These have gotten a little more subtle, switching to "So-and-so needs such-and-such for their game," but the intent is still to try to get you into the game.
Yes, we are a culture of likes and attention. Can anyone remember back to a time when advertisements were not asking for likes on Facebook? When you weren't asked to prove your fervency to a cause by sharing/liking some status? Vaguebooking is a specific ploy for attention, that is fishing for comments or conversation, demanding that people be engaged. Examples of this include, but are not limited to, the following:
- "Ugh, everything sucks. :("
- "Wondering if it is worth it"
- "So down right now"
- "You don't know how good you had it"
- "Today was incredibly weird"
- **A series of angry emoticons**
- "I have good news. :)"
- "Nice means means people walking all over you" and/or "No good deed goes unpunished"
- "Well, that went well..."
- "Why are all [insert group of persons or profession here] such jerks?"
- "Don't even ask me how I'm doing today."
- Any non-sales related statement that ends with "Message me for details."
These are all formatted specifically to have someone reply back asking for sympathy or an explanation so that they can tell the whole story, instead of just stating the situation. There are subtle forms of this, too, where specific details are left out just so someone has to ask about it (e.g. "I have a new job!" without any information so that the comments section has to then ask "Where is it at?"). It's a low-key kind of manipulation that rubs me the wrong way.
Complete Lack of Filter
I find that everyone's day to day life can be interesting, that I don't know someone's experience. But there is a difference between being honest and being a jerk or being on the unnecessary/gross side of transparent (e.g. "Check out this poo I made today!"). Being authentic to oneself is one thing; being passive aggressive is another. There is a difference between saying what's on your mind and releasing private information that maybe would be best handled with a conversation with the individual first.
Clickbait/Sharebait
Think about article titles as a broad category. Yes, in order to get advertising revenue and all else, these are measured in clicks, shares, likes, and traffic in general.
- "I bet no one will share/like" or "I hope I get just one share"
- Can a veteran/baby with Downs Syndrom/dog missing a leg get a like?
- Share if you think I'm cute!
- 1 Like = 1 AMEN
- Number 7 will shock you!
- You won't believe what [random celebrity] looks like now!
- [Picture of record player, lawnmower, potato peeler or whatever] Share if you know what this is!
- Anything that is structured as a poll, e.g. like=yes, share/angry face=no
You know what? A dog doesn't care if they get a share--the person re-posting the picture does. And an angry face still counts as a "like" in metrics. I take particular grievance with the "I bet no one will have the guts to repost" or "no one will like this picture" kind of posts, again, because this is the low-key manipulation. This is a different way of farming for attention, whether it is for a company or personal gratification. Wanting that reinforcement through clicks and likes is a real thing. Hell, I check my blog hits all day when I put a new post out there. But I can also keep in perspective that these are not necessarily a reflection of my self-worth.
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Again, I am not writing this as a cease and desist kind of manifesto. These are habits that have grown as part of online culture. However, I do want at least draw some attention to them, to help make us aware of some of the pitfalls that we fall into and, maybe, choose to avoid them. There are solid psychological reasons why we do these things, and there are solid psychological reasons why they annoy us, too. We don't have to resort to tricks to demand attention, but when we're working toward finding our own voice with this new-found platform, some social guidelines are still important.
Thursday, March 8, 2018
Poll Results and General Announcements
Hey, all!
I have the poll results: Discursive Thoughts and Other Ramblings will stay the title of my blog for the time being, with two more votes than Melvin and Me. I'm still considering how I might want to work this in as a subtitle later or if I will reintroduce the voting at a later time to see how things change.
It does occur to me, though, that I didn't take the time to discuss why I was considering the change in the first place.
On the original title, Discursive Thoughts and Other Ramblings: Firstly, I was surprised at a few discussions I had where persons didn't know the meaning of this original title. And then I had to sit there and try to articulate it, which was harder than I had expected. My understanding (and the top dictionary definition) is that this would imply that I would be jumping from topic to topic, chaining together ideas without any particular flow from thought to thought. Yes, this means that the "and Other Ramblings" is a little bit redundant, but I prefer to think of it as emphasis. This is also an attempt at self-depreciating humor. However, what did surprise me when I Googled my blog title was the number of hits regarding Buddhism and the second entry in the dictionary that defined discursive as simplifying larger concepts through analytical reasoning or otherwise logical thinking/processes. I appreciate very much how both can work and want to believe that I somehow did it on purpose.
Regarding Melvin and Me: My life has significantly changed now with the permanent colostomy that I playfully call Melvin. This is a perspective on the world that is definitely outside of the norm, and I think all the more interesting because of it. Why not make it the showpiece? Also, it is catchier and a little less pretentious. However, I found that some of the resistance to this title was that other bodies did not want Melvin to define me--I appreciate that thought, however, I have confidence that it won't.
So, that said, I am considering shaking up the design of the website that incorporates Melvin in some capacity but otherwise keeping the title for the time being. Thanks to those that took a moment to vote!
Now, some of you may have noticed that February, while being a shorter month, was a very prolific month as far as blog posts. I have made a very healthy change into my schedule--I have put some dedicated writing time into my week. And it feels gooooooood. I find ideas flow more freely (at least for now), and I carry that certain kind of peace when I have created something that is good to have with some consistency.
Some of you may have also noticed that Tuesdays seem to be my posting day of choice. That consistency happened initially by accident, but I feel I can say with some confidence that I will be making this my official update day in the future. There may be a bonus post in the week (most often Thursdays, case in point), but Tuesdays are the schedule I am holding myself to.
Additionally, I do want to discuss a fear I have had. I don't try to think of my blog in terms of what will make people click on posts or what will get the most reads, but I admit that those elements cross my mind from time to time (feedback is nice, after all). As part of this, I have worried before that I've had too many heavy posts in a row or two many long ones and need to break it up with something funny or quippy or short, even when I don't feel any of those things at the moment. Andy suggested I stockpile these moments, to which I patiently explained that I had already gone through those. So, I have resigned to try to stop worrying about the mood of the blog, that if it is heavy for a while, it can be heavy for a while. I can also give myself the freedom to write something glib. Not everything I put out there has to be a long confession, introspective, philosophical, or whatever else, but there have been a lot of serious things to talk about for a while, and that's more what I've needed. (And now we'll have an upcoming blog on why I write this blog, that my brain is on that tangent...)
Anyway, thank you all for taking the time to read these components that I string together. I have spoken to a good handful of folk that have found something that resonated with them and it fills a warm place in my heart. I'm all too happy to discuss things further with you, too.
Much love, all. Until next time.
I have the poll results: Discursive Thoughts and Other Ramblings will stay the title of my blog for the time being, with two more votes than Melvin and Me. I'm still considering how I might want to work this in as a subtitle later or if I will reintroduce the voting at a later time to see how things change.
It does occur to me, though, that I didn't take the time to discuss why I was considering the change in the first place.
On the original title, Discursive Thoughts and Other Ramblings: Firstly, I was surprised at a few discussions I had where persons didn't know the meaning of this original title. And then I had to sit there and try to articulate it, which was harder than I had expected. My understanding (and the top dictionary definition) is that this would imply that I would be jumping from topic to topic, chaining together ideas without any particular flow from thought to thought. Yes, this means that the "and Other Ramblings" is a little bit redundant, but I prefer to think of it as emphasis. This is also an attempt at self-depreciating humor. However, what did surprise me when I Googled my blog title was the number of hits regarding Buddhism and the second entry in the dictionary that defined discursive as simplifying larger concepts through analytical reasoning or otherwise logical thinking/processes. I appreciate very much how both can work and want to believe that I somehow did it on purpose.
Regarding Melvin and Me: My life has significantly changed now with the permanent colostomy that I playfully call Melvin. This is a perspective on the world that is definitely outside of the norm, and I think all the more interesting because of it. Why not make it the showpiece? Also, it is catchier and a little less pretentious. However, I found that some of the resistance to this title was that other bodies did not want Melvin to define me--I appreciate that thought, however, I have confidence that it won't.
So, that said, I am considering shaking up the design of the website that incorporates Melvin in some capacity but otherwise keeping the title for the time being. Thanks to those that took a moment to vote!
Now, some of you may have noticed that February, while being a shorter month, was a very prolific month as far as blog posts. I have made a very healthy change into my schedule--I have put some dedicated writing time into my week. And it feels gooooooood. I find ideas flow more freely (at least for now), and I carry that certain kind of peace when I have created something that is good to have with some consistency.
Some of you may have also noticed that Tuesdays seem to be my posting day of choice. That consistency happened initially by accident, but I feel I can say with some confidence that I will be making this my official update day in the future. There may be a bonus post in the week (most often Thursdays, case in point), but Tuesdays are the schedule I am holding myself to.
Additionally, I do want to discuss a fear I have had. I don't try to think of my blog in terms of what will make people click on posts or what will get the most reads, but I admit that those elements cross my mind from time to time (feedback is nice, after all). As part of this, I have worried before that I've had too many heavy posts in a row or two many long ones and need to break it up with something funny or quippy or short, even when I don't feel any of those things at the moment. Andy suggested I stockpile these moments, to which I patiently explained that I had already gone through those. So, I have resigned to try to stop worrying about the mood of the blog, that if it is heavy for a while, it can be heavy for a while. I can also give myself the freedom to write something glib. Not everything I put out there has to be a long confession, introspective, philosophical, or whatever else, but there have been a lot of serious things to talk about for a while, and that's more what I've needed. (And now we'll have an upcoming blog on why I write this blog, that my brain is on that tangent...)
Anyway, thank you all for taking the time to read these components that I string together. I have spoken to a good handful of folk that have found something that resonated with them and it fills a warm place in my heart. I'm all too happy to discuss things further with you, too.
Much love, all. Until next time.
Tuesday, March 6, 2018
Baggage that I Bring to Others
[Two important notes: each of the links below are referring back to one blog post or another related to the subject. And Spoiler Alert: if you have not seen/read Steel Magnolias there will be some discussion of the plot below]
I had the pleasure of a mini-date with one of my favorite people recently--Mamma P and I went out to dinner to talk about things, life, and all else in between before going to see Tristan in Steel Magnolias that evening. I had not (and still currently have not, as of writing this) seen the movie version. In fact, I didn't know what the story was about except it was in the Fried Green Tomatoes camp that would at least focus on female bonding through adversity of some kind.
And then, if the first act, Shelby has a diabetic emergency. Immediately, my stomach fell and I thought "Oh, shit, she's going to die." Not that the phrase "diabetic emergency" normally triggers that in my mind, but how it was introduced on her wedding day, well, that seemed significant. Andy gets annoyed with me when I do that while watching a new movie or tv show with him, when I break down some important elements of the plot in the beginning--there are troupes that one can pick up on over time, if you have some idea of what you're looking for. This is not to say that I'm always right with some of these guesses, and knowing how some elements are likely to play out doesn't ruin it for me, meaning that I can pay attention to how the hints are interspersed otherwise. However, with this one, I focused my energy to mentally prepare myself in a different way. There are two points that I want to address with this.
1. Shelby is determined not to let her physical ailments slow her down, to live her life on her own terms. I know Shelby in that moment. I have every reason to treat myself as though I were made of glass, except that I could never stand it. There's a point where a character tells Shelby something to the effect of "I wouldn't have known you were sick a day in your life." Shelby takes this as high praise. I have so much cognitive dissonance over that line that I'm struggling with where to start.
I would be pleased to be told that, too. But I would also be exasperated. But I would also be proud. And I would also be angry. And I would also have a very particular half-smile and say thanks.
I've talked about this obliquely in some other ways before. The character of Shelby has clearly had all kinds of discussions with her family and husband about her condition and particularly when it worsens. She wants to choose on her own terms how to take care of herself and even control who knows about her condition. I choose to be very open about my disease and that means that I'm also very open about some of the parts of it that are hard to talk about (from farting to sex to depression and anxiety and all the baggage that implies). But at the same time, I like to have some control of how visible I am or am not; it's an interesting balance.
I think what Truvy was trying to tell Shelby as part of that line was that she felt she was strong. I've had a few musings about what it means to be strong, but I don't think that the absence of "appearing" frail has anything specifically to do with it, more about how Shelby wanted to think of herself and how she chose to cope with her reality. I know that in order to receive the compassion needed, sometimes, one has to be visible or directly ask for it, as much as I would wish people could just somehow know before even I do that I need it.
I don't expect to be treated as though the disease wasn't there, wasn't a part of me--because regrettably it is a very significant part of my life--but I also don't want it to be my defining characteristic, to not be seen as a sick person. It's a tricky balance, to ask for compassion and acknowledgement and otherwise reach out for the help I need to without feeling like I'm smothered or coddled in a way that's debilitating.
I feel that we're supposed to keep Shelby mostly as a "but she died so young!" kind of tragic figure, identifying with her courage and her resilience to a point, but then the focus seems to shift more so to the resilience of those that survive her and their relationship with each other. Shelby's health drives the majority of the tension for the play. I identify with Shelby too much to assign her in my brain just as the main plot device. Shelby is more than her disease and her crumbling body.
She is me.
2. This next thought pulls into that conversation about baggage, combined now with that same idea from above: "Shelby's health drives the majority of the tension for the play." Even when Shelby does die, we're left with her friends and family trying to sort out what to do now. One of my brothers mentioned once how "inconvenient" it was when I was sick. Another family member mentioned once how we would be further along on our financial goals if I hadn't gotten sick. Neither of them meant to be hurtful, stating a particular truth of the situation, but it still stung a bit.
I think about the kind of baggage I inflict on those that love me a great deal.
Worrying about how much you worry someone almost seems silly, but here it is, all the same. I don't exist in a vacuum, meaning that what happens to me effectively happens to those around me, too, to some degree. My health has had a similar gravitational pull--a swirling vortex of medical terminology, juggling pills, a half-dozen specialists, cancelled plans, arguments about insurance, and the general frustration of it all--on my friends and family that rocked Shelby's family. Objectively, I know it's not my fault, that I'm not to blame for where my body has failed, but I also feel some of that guilt anyway. I know that people worry about me.
I can think of at least eight people who would take my place if they could. Of those, five have told me outright, and I believe them. I also know that I wouldn't let them because of that same love; that, and I wouldn't wish this reality on anyone.
I know it's not logical to feel guilty, but that doesn't stop the feeling. I spoke with my therapist about it one day, and we had an important discussion on the difference between being "sorry" and being "regretful." Telling a friend or family member that I was sorry for this burden that they carry because of me rests at least some of the culpability on me, takes some measure of fault. Saying that I regret the burden placed on them because of the situation takes it a little more out of me, that I recognize more so that this is not something that is anyone's particular doing but that I am sad to see it there all the same.
I deeply regret the pain and worry that my disease has inflicted on a great many people. I haven't figured out the best way to carry that particular piece of baggage yet. But I appreciate you, that you care enough to worry; I don't take that for granted. And there are moments when I feel you, and there are moments when I feel alone anyway. That isn't anyone's fault either, when I feel that particular kind of alone, and it is the hardest point, I find, to figure out how and where help is needed. At least, I cannot seem to articulate well what I need in those moments, meaning that I end up with a good, long cry instead, until words start happening again.
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Long story short (too late), I knew that the play was going to be emotional, but I had not anticipated that it would hit in that kind of way, play off of guilt and fears that I had thought I was dealing with well, thank you very much. And art truly does hit you in a different way, as you bring yourself into it. I expect that at another point in my life, I might identify more with someone else, when I'm no longer the same person through the natural progression of life. Still, I honor and appreciate where I am today. There is depression. There is pain. There is worry. There is fear. There is hope. And there is also me.
I had the pleasure of a mini-date with one of my favorite people recently--Mamma P and I went out to dinner to talk about things, life, and all else in between before going to see Tristan in Steel Magnolias that evening. I had not (and still currently have not, as of writing this) seen the movie version. In fact, I didn't know what the story was about except it was in the Fried Green Tomatoes camp that would at least focus on female bonding through adversity of some kind.
And then, if the first act, Shelby has a diabetic emergency. Immediately, my stomach fell and I thought "Oh, shit, she's going to die." Not that the phrase "diabetic emergency" normally triggers that in my mind, but how it was introduced on her wedding day, well, that seemed significant. Andy gets annoyed with me when I do that while watching a new movie or tv show with him, when I break down some important elements of the plot in the beginning--there are troupes that one can pick up on over time, if you have some idea of what you're looking for. This is not to say that I'm always right with some of these guesses, and knowing how some elements are likely to play out doesn't ruin it for me, meaning that I can pay attention to how the hints are interspersed otherwise. However, with this one, I focused my energy to mentally prepare myself in a different way. There are two points that I want to address with this.
1. Shelby is determined not to let her physical ailments slow her down, to live her life on her own terms. I know Shelby in that moment. I have every reason to treat myself as though I were made of glass, except that I could never stand it. There's a point where a character tells Shelby something to the effect of "I wouldn't have known you were sick a day in your life." Shelby takes this as high praise. I have so much cognitive dissonance over that line that I'm struggling with where to start.
I would be pleased to be told that, too. But I would also be exasperated. But I would also be proud. And I would also be angry. And I would also have a very particular half-smile and say thanks.
I've talked about this obliquely in some other ways before. The character of Shelby has clearly had all kinds of discussions with her family and husband about her condition and particularly when it worsens. She wants to choose on her own terms how to take care of herself and even control who knows about her condition. I choose to be very open about my disease and that means that I'm also very open about some of the parts of it that are hard to talk about (from farting to sex to depression and anxiety and all the baggage that implies). But at the same time, I like to have some control of how visible I am or am not; it's an interesting balance.
I think what Truvy was trying to tell Shelby as part of that line was that she felt she was strong. I've had a few musings about what it means to be strong, but I don't think that the absence of "appearing" frail has anything specifically to do with it, more about how Shelby wanted to think of herself and how she chose to cope with her reality. I know that in order to receive the compassion needed, sometimes, one has to be visible or directly ask for it, as much as I would wish people could just somehow know before even I do that I need it.
I don't expect to be treated as though the disease wasn't there, wasn't a part of me--because regrettably it is a very significant part of my life--but I also don't want it to be my defining characteristic, to not be seen as a sick person. It's a tricky balance, to ask for compassion and acknowledgement and otherwise reach out for the help I need to without feeling like I'm smothered or coddled in a way that's debilitating.
I feel that we're supposed to keep Shelby mostly as a "but she died so young!" kind of tragic figure, identifying with her courage and her resilience to a point, but then the focus seems to shift more so to the resilience of those that survive her and their relationship with each other. Shelby's health drives the majority of the tension for the play. I identify with Shelby too much to assign her in my brain just as the main plot device. Shelby is more than her disease and her crumbling body.
She is me.
2. This next thought pulls into that conversation about baggage, combined now with that same idea from above: "Shelby's health drives the majority of the tension for the play." Even when Shelby does die, we're left with her friends and family trying to sort out what to do now. One of my brothers mentioned once how "inconvenient" it was when I was sick. Another family member mentioned once how we would be further along on our financial goals if I hadn't gotten sick. Neither of them meant to be hurtful, stating a particular truth of the situation, but it still stung a bit.
I think about the kind of baggage I inflict on those that love me a great deal.
Worrying about how much you worry someone almost seems silly, but here it is, all the same. I don't exist in a vacuum, meaning that what happens to me effectively happens to those around me, too, to some degree. My health has had a similar gravitational pull--a swirling vortex of medical terminology, juggling pills, a half-dozen specialists, cancelled plans, arguments about insurance, and the general frustration of it all--on my friends and family that rocked Shelby's family. Objectively, I know it's not my fault, that I'm not to blame for where my body has failed, but I also feel some of that guilt anyway. I know that people worry about me.
I can think of at least eight people who would take my place if they could. Of those, five have told me outright, and I believe them. I also know that I wouldn't let them because of that same love; that, and I wouldn't wish this reality on anyone.
I know it's not logical to feel guilty, but that doesn't stop the feeling. I spoke with my therapist about it one day, and we had an important discussion on the difference between being "sorry" and being "regretful." Telling a friend or family member that I was sorry for this burden that they carry because of me rests at least some of the culpability on me, takes some measure of fault. Saying that I regret the burden placed on them because of the situation takes it a little more out of me, that I recognize more so that this is not something that is anyone's particular doing but that I am sad to see it there all the same.
I deeply regret the pain and worry that my disease has inflicted on a great many people. I haven't figured out the best way to carry that particular piece of baggage yet. But I appreciate you, that you care enough to worry; I don't take that for granted. And there are moments when I feel you, and there are moments when I feel alone anyway. That isn't anyone's fault either, when I feel that particular kind of alone, and it is the hardest point, I find, to figure out how and where help is needed. At least, I cannot seem to articulate well what I need in those moments, meaning that I end up with a good, long cry instead, until words start happening again.
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Long story short (too late), I knew that the play was going to be emotional, but I had not anticipated that it would hit in that kind of way, play off of guilt and fears that I had thought I was dealing with well, thank you very much. And art truly does hit you in a different way, as you bring yourself into it. I expect that at another point in my life, I might identify more with someone else, when I'm no longer the same person through the natural progression of life. Still, I honor and appreciate where I am today. There is depression. There is pain. There is worry. There is fear. There is hope. And there is also me.
Thursday, March 1, 2018
Melvin and Me, Part 8: On the Social Rules of Farting
When I wake up in the morning, I tend to hear the plastic crinkling at my side--the bag has caught everything it has supposed to over the course of the night. Sometimes that means that there is warm blorp of poop, but more often in the morning, the bag is almost entirely full of air. This is an odd superpower: I can more accurately quantify the amount of gas I fart than the average person. Farts, toots, or etc. are a natural part of the digestive process, as food molecules are broken down and converted into usable energy. However, I like to think of them as the screams of the digested food, because it makes me laugh. Melvin doesn't "fart" in quite the same way--the sound of a fart is majorly composed of your own butt cheeks vibrating and flapping as the force of the gas escapes between them...and you're welcome for that visual. Melvin is often a simple, quiet "pfffft." Sometimes, there's a "blurble" as some fecal material travels with it. In the end, though, if all went according to plan, it stays contained in the bag, inflating the bag incrementally.
There are different kinds of appliances. Some of them have built-in carbon filters that allow air out, still containing the rest of the contents without issue. Having a bag full of air is more reassuring to me--I know that if the air cannot get out without my help that nothing else is getting out either. However, this does mean that I have to take extra trips to the bathroom just to release out this gas. I lift the tabs on the bag that the ostomy belts can connect to, where the bag clips on to the part of the appliance that sits on my skin. I pull it up just enough to let the air out of the balloon, as it were.
I do have to be careful not to pull it up too far, so that only air is coming out instead of everything. I could also open up the other end and empty everything out that way, but having an option to release the air tends to be a helpful shortcut.
So here's the question of the day, then: there are social rules about where and when one should fart, when it is under their power to do so, while still understanding that there are farts that just "sneak out" due to repositioning, age, or other conditions. And I can't say that I've seen consensus about it. I've heard from some folk say that you should go to the bathroom to fart, others who try to keep a respectful distance or otherwise wait until they're alone, and then some collective agreement that you can do what you want in your own home. However, barring unforeseen disasters, when I vent my ostomy bag, burp Melvin, fart, or whatever else you want to call it, I have control on when that happens. So, when and where can I do that?
Now, Andy will tell you that having all of that gas over the course of a few hours concentrated in one place gives it a particular pungency. In fact, if he playfully farts "on" me, he starts running when I reach toward my side to retaliate. How true this is or isn't, I'm not really sure because I'm self-conscious about it and don't feel that I'm an accurate judge on this. Does the scale of "pungency" matter?
I'll throw another scenario out there--if the bag gets too full, from air or whatever else--it will find a way to vent that on its own, meaning that it will blow out and become a mess rather than the minor inconvenience of working with an inflated balloon at my side. Let's say I'm at work, and through a series of high priority projects, I cannot leave my desk. I notice that the bag is really full. I don't think that the client will respond well to my request for a bathroom break to take care of it, because they are sixteen shades of mad. However, this rather full bag of gas is making me anxious and no longer able to put my full attention into the call--could I just vent a bit of it there in my cubical? Does it help to chase it immediately with some room spray to try and cover up parts of it?
What if I am in that that comfy spot on the couch, wrapped in a blanket, with all necessary items in reach, and otherwise very content...and then I notice that my colostomy is full of air. Is it okay to vent the bag then? Should I be relegated to the bathroom in my own home?
What if I am in that that comfy spot on the couch, wrapped in a blanket, with all necessary items in reach, and otherwise very content...and then I notice that my colostomy is full of air. Is it okay to vent the bag then? Should I be relegated to the bathroom in my own home?
Could I lift my shirt and vent it when I'm outside? Are the rules different when a bathroom is not readily available?
I suppose part of the difference is that I cannot be inconspicuous--I'm very obviously lifting my shirt and exposing part of my abdomen to get to the appliance. Everyone else can fart as they want to, crop-dusting in the mall or finding a corner for a moment. Is that what makes it different? While others with ostomies have certainly found their own guidelines, I have a chance to write some of my own.
I'm genuinely looking for input on this one. Really, I don't know what the social rules are for this.
I'm genuinely looking for input on this one. Really, I don't know what the social rules are for this.
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