As an outsider to the medical world, there are many things that annoy me about the system. I have no real views on triage, medical decisions, etc., I trust in the science and only have strong views when science wants to dictate QoL decisions or sidestep the philosophical issues. But the part where I do have frustrations is in the delivery design.
I’m not the only one who has noticed this, patient advocacy groups rant and rave all the time, and while I have empathy for their concerns, often times I see their complaints and think they’re looney tunes. Yet having experienced ERs for myself, Jacob and Andrea, I am often completely puzzled and frustrated by the complete lack of information that is shared.
I’ve blogged before that I once went to ER with chest pains that I hoped was mere indigestion, but with family history, prudence won out. I sat in the ER for five hours thinking I was having a heart attack before anyone looked at me, while a woman with a bleeding head wound sat near us in triage. Which left me feeling, “Well, if a bleeding HEAD wound doesn’t get looked at sooner, what hope do I have?”. And I’m there with CHEST PAIN. Isn’t that what I’m supposed to do? Well, of course it is. But when I arrived, they did their little heart monitor thing, checked me out, SAW NOTHING, and put me far down the triage list for priority. As they should have, because there was no sign of a heart attack. I don’t have any issues with all of that, it worked as it should.
Except they didn’t tell me. The nurse took the reading, and they don’t diagnose and tell me I’m okay, otherwise I’m likely to leave, something else happens, I die on the street and they get sued. But I’m sitting there for five hours WITH NO INFO about what’s going on, am I having a heart attack or not, etc. With some outside perspective, or some inside baseball knowledge as they say, I know that waiting in an ER is actually a good thing. They’ve triaged me — if they’re not whisking me into the back, I’m not that big a crisis. The longer I wait, the lower my priority was when I came in. Not reassuring, as they could have just forgot about me as far as I know, but still, they rarely lose track of someone, so more likely that I’m not “that serious”. Relax, right?
With Jacob, going to the ER was always a crapshoot. Like many ERs, you get triaged right away, then go to the waiting room, then move to the assessment unit and wait, and then into a room for someone, etc., before you are seen. There’s no info while you’re waiting. It’s just, “We’ll call you.” Which of course is almost the worst thing you can say to someone who’s stressed, other than “calm down” or “relax”. Yet there’s no real solution. There are advocacy groups who argue that you should get a ticket when you come in, like you do in a deli. “Now serving #33.” Except I know that triage doesn’t work that way, even if it doesn’t help me handle it much better.
I could go into an empty ER with four other people. I could be triaged against a 3-level priority system as “Medium”, along with one other person, and say 2 others are “high” and 1 is “low”. In theory, that means I’m “tied for third” in line, right? Except while I’m there, five more patients come in, same ratings. Now there are 4 that are HIGH, which bumps me down to tied for fifth. But even in MEDIUM, there are now four of us. I might not be the most critical of the four, or one of them needs something very specific that only one doctor on that night will handle, or they’ve put in a consult request and that person happens to show up before the other four HIGH are treated.
We’re all in little buckets, but the buckets are not all managed by the same people, and while they might empty bucket 1 first, there is no guarantee which fish from bucket 2 will come out first or when. We’re also sub-triaged within the group. They do tend to group like-patients together and if all four of us have identical issues, sure, the first one is likely to be served first. But if they gave out numbers, then people would get frustrated faster — “hey, why is #47 going in ahead of me just because he’s dying and needs care immediately and I just need stitches?”. Even telling people they are HIGH, MEDIUM or LOW is info none of them have, but it can work against you. “Oh, I’m LOW? I might as well leave.” Except it’s still LOW for an ER, it might be HIGH if you were to go to a clinic, who might just immediately send you to the ER anyway.
I say all this because Andrea is at the hospital this week, which is not supposed to be one of our weeks at the hospital. Of the four week cycle, with W1 being treatment, W2 is recovery from side effects, W3 is starting to feel okay, W4 is more likely to be closer to normal. Except in Andrea’s case, this being week 4, she’s been dealing with fluid in her lungs that has been present for several months. It got worse this month, not better as they hoped, and so after a long weekend of increasingly laboured breathing, she checked with patient care for her treatment on Monday and they said, “Yeah, come on up to Emerg.”. Which she did at about 10:30 Monday morning.
And waited. And waited. And waited. Sometime late in the afternoon, they did an X-ray to discover her fluid has increased in lung 1 (now more serious) and also partly in lung 2. Yay. That explains the breathing alright. Sooo, instead of waiting for the chemo to clear it up, they’d likely drain. So ER talked to hematology, and Pinocchio talked to Gepetto, and Kermit fell in love with Miss Piggy, and 36 HOURS later, they decided to give her a room. Yep, she spent 36h in the ER back area, one night without a real room but finally a bed at least, slept like crap, and then all day today waiting to hear SOMETHING. Apparently, the doctor who does the drainage only comes in Wednesday and Friday, from 5-6 p.m., and there’s no real coordination for them. They come in, drain a bunch of people, if they all get done in an hour, great. If not, see you Friday.
So she’s definitely in until tomorrow night, and if they don’t do it then, either she stays until likely Saturday or she’ll send me to Home Depot to get a nail gun and some tubing or a very long thin siphon.
Andrea and I have a standing joke, don’t even really remember how it started, where we say to each other, “Apparently, breathing is over-rated”. And apparently, that’s true now. Because if you’re not a priority when you’re a CANCER PATIENT in active treatment, what exactly constitutes a priority for a) a bed, b) a room (she got one tonight), and c) someone to drill a hole in your side?
After this week, we might need to revisit the treatment metaphor. The zen / “healing” motif might have dropped, and it is looking more like enduring a battle at this point. She’s a trooper, but if it was me? I’d be climbing the walls at the lack of information about what’s happening, who’s talking to who, and what the options even are that are being discussed / considered. The black hole is terrible for morale, even if there are no obvious solutions. Hopefully, she’ll sleep tonight. We were hoping to take Jacob up to see her tomorrow, but nobody 12 or under. I’m tempted to say he’s 13 but they might turn us away at screening and then we’d be messed up.
Earlier this month, I posted a few times about changes to my online life and how it was going to impact my level of social interaction, particularly in a world that will still be socially-distanced for our family for a while yet. I was worried that my harsh adjustment would prove too painful, and while the pain was real, the mitigation steps have eased it a bit, or at least distracted me.
First and foremost, I’ve re-embraced the writing world. I joined a couple of online critiquing groups, sure, but I haven’t done much with them yet. Instead, I reached out to a few people who were part of a critiquing group almost 10-12 years ago, and the person who ran it is still running one. There was room, I threw my hat in the ring, and the group agreed to have me join. Hot dog! It is a low-intensity zoom group, and my first session is this Sunday. They meet once a month, and although I had already missed the deadline for this month, I have others’ writing to critique. Sunday night, I’m in like Flynn. It’s only monthly, sure, but it’s a bit more intimate / intense encounter, even if by Zoom. Fingers crossed.
Second, I rejoined the Capital Crime Writers group, a local writing group, and they meet once a month for a guest speaker. It’s still virtual, which I’m happy to see, so for $40 a year, I rejoined. I’m still debating the Ottawa Independent Writers’ group, it’s a bit more expensive ($75 a year), but I don’t know if I’ll want a third. I have enough trouble attending the various astronomy groups I have open to me. Writing is part of my heart and soul though, way more than astronomy ever will be.
I also confess that I had an epiphany about some writing I’ve been struggling with for a few years. My new idea would give all of it an internal coherence, and even some potential marketability, in ways that NONE of my previous stuff has done. It has a strong combination of goal-setting, performance, and mental health / personal well-being, and when the lightning hit me, I felt totally energized. Often I get this bolt out of nowhere, it jazzes me for a day, and then I find a glitch in the approach. Something that doesn’t quite work. This one has been percolating around my brain for a solid week or so, and it’s still holding up to my self-attacks. I think I may need to have coffee with my friend Ryan and see if the framework holds for him too. I don’t think I’ll include in the “marketing” that the basis is a strange mashup of CB radio, a Buffy the Vampire Slayer character, and the Government of Canada’s modified risk framework, all layered on top of about a dozen different techniques for self-actualization and goal-setting. Yep, it’s weird…but as I said, it seems to HOLD TOGETHER as a framework. If I could catch the right guru’s attention? The thing could revolutionize part of an industry. And then several other self-help industries. Obviously, not with me at the helm, but still. The lightning is still sparking, which feels incredible and scary at the same time.
But I digress, that’s about writing, not about the social interaction side.
My other news is that I used the Slowly penpal app. I mentioned some of the details earlier — it’s an app that simulates a “letter” being sent in that you send an email / message, but it delays delivering it for a couple of days. So you’re not reduced to immediate reactions, instant gratification, reduced to texts that say ‘sup. I filtered on a few areas of interest / hobbies, and added filters for men only who were similar in age. I am avoiding risk of anyone matching who is looking for a slow version of a dating app, I’m just looking for more interaction with someone. Literally a penpal is about my speed for this area.
And I matched with a guy in the US, about the same age, two kids in college, etc. He’s into board games, writing, blogging, reviews, TV, etc. We’ve exchanged a couple of “letters” so far, and even if it doesn’t turn into a lifelong penpal friend, it’s been nice getting to know him. He also has a podcast, so I’m going to check it out. We’ve been chatting most about board games so far.
I’ve also received a few other matches — because I am in the system, other people can “match” with me. Those I’m less enamoured with as they seem to have almost nothing in common with me other than we’re using the same penpal app. One of the 4-5 seems okay, the others I’ll respond to be polite, but I’m not anxious to add them to my interaction list yet. One thing that I “blocked” from my profile was people who just want to talk about their pets. I like cats, I like dogs, but about 3 minutes in, if I can’t actually SEE the pet myself in person to get to know it, I’m likely done. Two of the “letters” I got were still about 60% about their pets. I’m fine if they want to talk about pets, but it’s not going to lead to any particular insightful commentary from me or more questions. I blocked a few other areas too, but it isn’t very “blocky” in that regard for people who find YOU. It just blocked people from MY search.
Of the other 4-5, I think one is likely a scammer and one is likely a woman looking for a boyfriend, or both. Another one also seems VERY young, but it could be a language barrier thing (many of them are writing in their second or third language), but they came off very teenager-y, despite the app being designed for adults. I haven’t responded to any of them yet, taking my time.
I’ve also been having several long conversations with people on my FaceBook Messenger app in the last week or so. More so than I would have previously, probably would have just said a quick hello, or something and moved on. These have been a little longer, a little more detailed, and it’s been nice catching up. I’m sure part of it is the pseudo-pity-party that was in my blog and FB posts that I was doing a harsh adjustment to my FB profile etc. But still…I’ve enjoyed catching up. 🙂
As I noted previously, much of my social interaction of the last two years has been limited to FaceBook. But for reasons I won’t repeat here, even I don’t want to navel-gaze that much, that window is heavily curtained now. So I need to find some ways to compensate for that decrease, or risk turning into a hermit or even bigger squirrel than I am already. I have a life, however socially restricted it is now, but if I’m going to “boost” my social interactions without necessarily risking health incidents, I need to be a bit more creative about alternative sources of social interaction. To get “out” more without getting “out” more, perhaps.
I read an article about how to boost social interaction, and have been going down rabbit holes today looking at various options that people have suggested throughout the pandemic for those feeling isolated. Jacob has faced similar isolation, and when I look at some of the personal factors going forward (not the why, but the how), there’s a fair amount of symmetry. For him, we talked about three categories — things that he likes to do, that he can do by himself; things he likes to do with other people; and a third category that is a combination of either expanding the things in the first two columns so as to enlarge his interactions with others or finding new activities that would be done with others. Which leaves me finding ways to compensate for the lack of FB. I’ll need to find ways to boost interactions, albeit with new people I imagine.
Writing
This is one that I do mostly on my own, particularly for blogging, as it’s not much of an active hobby for sharing. Jacob and I did some writing together as part of NaNoWriMo, not collaborative but just writing in the same room to encourage us both to write, but most writing I do by myself. Whether anyone reads it is another story, and whether or not I get much feedback is yet another. My HR posts garner reactions, but most posts don’t. I’ll write the other posts anyway, although some days I wonder why I bother publishing it on the internet. I could simply just put it in an e-file, maybe Jacob will read it someday or not. The HR guide, some other things I want to write when I retire, those are worth sharing, but the regular blogging? It’s really just for me. Ways to put pen to paper, so to speak, nothing really different than a conversation with myself in a diary. As a hobby for “self”, it’s fine. I can do it anyway. But it is lonely at times, writing something that no one is likely to read, finding a great turn of phrase that no one will ever see.
To get out of that rut, I will try to do more for broader writing like fiction and non-fiction, and in the past, I’ve tried being part of a writing group. I probably need to find another group for that again, but admittedly, finding ANY writing group is easy…finding the RIGHT writing group is really hard. More about chemistry and fit than bodies. I don’t know if that might lead to more loneliness in a sense — yes, someone will read my stuff, and I would push myself through to the publication stage, but most books fall flat, and I’m not sure how I would feel about that. Would I be satisfied that I wrote it? Or would the fact that no one read it drive me into despair? How thick is my skin? With my blog, I can at least tell myself that the world doesn’t know I exist. If I’m in Kindle Unlimited, I can’t really claim that, now can I? However, the point was to boost social interaction, and a writing group could help get me there.
For the blogging side, I have interacted with other bloggers but rarely has it lead anywhere interesting. Ignore the fact that almost none of them are writing about similar topics, that’s a given. But most interactions end up being about trying to grow their brand on Instagram or monetize their site, neither of which particularly excites me. I’ve toyed with a couple of specific niches for blogging and curation that would increase my interaction with others, there’s one site design/format that I really enjoy for another area that I could emulate, I’m just not sure it’s quite what I want to do yet. It could be a significant investment of time over several years, even starting light. But one of the things that the person I would be emulating really enjoys is the literally hundreds of interactions he gets per week from his followers. If I want comments and to be seen, that’s a potentially effective way to go. Something I need to think about some more.
Follow-up tasks
Work on PolyWogg Guides (HR, astronomy, etc.)
Find a writing group for fiction
Decide on a topic for a new curation site
Expand my engagement on Reddit fora for my HR guide and on Cloudy Nights for astronomy
Exercise
A lot of the online suggestions are basically about boosting interaction, making friends, etc. through group exercise. Most of it is stuff that doesn’t really appeal to me. I’m not going to go to the gym, I’m nowhere near ready to take fitness classes together, that’s something I’m mostly limited to doing on my own at home. And right now, I’m not even set up well to do that. I need to fix it for activities, but the overall health side might eventually lead to bigger things. I would like sometime to perhaps get into cross-country skiing, and I might be able to join a club that does that…one of the articles described it more as “activity” buddies than finding friends or simply interacting, something perhaps in between the two.
I find it intriguing that some of the lists suggest there’s a difference between a gym that is something “general” as opposed to doing something like a martial arts class or taking up rock-climbing. I don’t completely understand why the people who do those see those as unique, that somehow the “activity” buddy category is different, but maybe it’s because some of the others require a specific “buddy” to do them. Not sure about that.
It’s also a bit intriguing that some of the sites include getting a dog under exercise. However, I also found that many of them had completely different views about how having a dog would help. Some see it as a friend in and of itself, often suggested as a companion for those who live alone or just feeling isolated regardless of their living conditions. Others saw it as a gateway to social interaction, i.e., the obvious interactions when out walking a dog and everybody wants to stop and say hello. Others saw that as merely superficial interaction, but not “friend building”, while others saw it as either a buddy activity (meeting others who would walk at the same time) or friend building (getting to know more people at say a dog park and hanging out, perhaps even leading to non-dog park encounters). I am not getting a dog, we’ve discussed it previously in the pandemic, and it was a clear no. I think Jacob would really benefit from having one, and from sharing looking after one, but he feels it is too much work. He’s probably right. And at my current fitness level, despite it helping with it, it’s probably true. I could easily feel overwhelmed by such a commitment, at least for now.
Follow-up tasks
Improve my fitness level
Wait until our household risk profile improves
Consider cross-country skiing or kayaking at some point
Take classes
This one is not as obvious to me as it should be. The theory is sound, sure, people envision lots of people with similar interests taking a class at a community college or university, getting to know each other, talking in class, going for coffee afterwards, etc. But almost all of my interests in potential courses are about taking online stuff, where interaction is minimal.
I might do a photography class / photo shoot at some point, and I’m willing to take some astronomy lessons here and there, but it’s not particularly likely to lead to a lot of increased social interaction. To be blunt, I’m not a social butterfly. I tend to shut down in groups where I don’t know people. Which isn’t to say that I can’t learn, or that I don’t need to push myself more, but as an avenue, it’s limited. If I’m not forced to interact, like say in the fitness classes above, I might not.
I’ve seen some classes (pre-pandemic) for people, more activities than classes, for playing euchre or bridge once a week, and I would be willing to do that, but they’re primarily for retired people, so the schedule is almost always during the day when I’m at work. Not sure that’s much of a way forward. But I’m going to do a psych class, and even if it doesn’t lead to increased social interaction with anyone, at least it will be interesting.
Follow-up tasks
Consider an in-person class of some sort when household risk levels improve
Consider photography shoot
Start psych class
Penpal option
Okay, so maybe this is a little desperate sounding. It sounds a bit depressing to me that I need to resort to this, but mostly I’m ticking all the boxes. I’ve got other ways to interact with people, and I didn’t wipe out FB entirely (of the 26 people still in my contact list, 6 are people I could easily get together with some times although no one I would likely see weekly or anything, we’re not that close anymore, and honestly, with our household risk level, I can’t do much unless it’s outside anyway). Anyway…I digress.
There’s a site called Slowly that simulates penpal letters. It’s won a ton of awards, and the way it works basically is you create a simple profile, hiding whatever parts of your identity you want, enter some areas of interest, and it will “match” you with someone of similar interests. I created an account, matched with a guy in the US who likes writing, science fiction, reading, television, movies, board games, etc. I can’t remember the exact list, but we had seven areas in common. The “penpal” simulation is that you send them a message, but rather than delivering it like a text or msg in social media, it estimates how long it would take to send an actual letter from your location to theirs. If the post office was ACTUALLY that fast, they’d be more popular. 🙂 The average delivery time is two days. The rest looks like any penpal relationship. There’s lots of advice built into the site about how to avoid scammers, how to block people, etc. But otherwise, it’s a simple app. I suspect there are people on there who might want to use it more like a dating app, so I filtered it only to men with similar interests, and people closer to my own age group (45-65). I’ve seen a few sites that have mentioned lots of older people use it who have few social contacts in their life, shut-ins and/or isolated elderly people, and I’m not against exchanging with them. My only hesitations actually were a) seeming like I was feeling too “lonely” as opposed to just wanting to maximize alternative social interactions and b) it generally works off the phone. I don’t really enjoy typing that much on my phone, but I figured out after I sent my first message that you CAN switch to a site on the desktop, have to use a QR code to do it, but it seemed better.
On the humourous side, the app encourages you to write LONGER emails to introduce yourself to people in order to spark a variety of conversation topics. Yeah, cuz I need encouragement to say MORE. Maybe my use will go nowhere, maybe I won’t like it, maybe I get no response to some attempts. Or the more likely scenario, just no connection/chemistry with the penpal. But I gave it a go, it was an easy outlay of time.
Follow-up tasks
Try out a penpal app
Gaming
Lots of people and sites turn to gaming as a way to boost social interactions. Some do it in person, which I can’t really do for awhile given our household risk profile, but eventually, I wouldn’t be against joining a biweekly boardgame group. There are a couple around, but I’m not ready for that yet.
I am also unsure how I feel about trivia at pubs. I confess I love the premise of having dinner and playing trivia on the traditional e-tools. Way back in the dark ages, a friend used to go regularly to play with a group at Puzzles in Westboro, and it was fun. Not something I would want to do every week, and to be honest, the competitive side rarely has any interest for me. In fact, it can reduce enjoyment more than enhance. I really enjoyed Puzzles as the group tended to share answers, so almost like playing as a team. Occasionally we would end up with someone who was uber-competitive and while they were happy to steal our answers when they didn’t know, they wouldn’t share their guesses until after the first couple of answers were eliminated (thus reducing your ability to ring in or get decent points). And competition with the other groups? It was for FUN, but some of them took it way too seriously. And again, I didn’t want to go EVERY week, I’m not that committed. For me, it would be more like once a month, stop in, play a game or two, eat some wings, hang out, and move on. The other challenge for me though is that unless I’m with a group of people and we’re all yakking away, the games are reallllllllllly slow. It takes WAY too long to get to the next question. Some pubs just run their own trivia rather than the mechanical version, but that too can sometimes be less fun than it might appear, particularly if some of the fellow social misfits around me are drunk. I’m not looking for drama, more just a shared experience I guess with some interaction.
I’ve considered some of the bigger online gaming things, more like Call of Duty etc., but well, I’m just not good at them. Nor do I have a group of frat buddies to synch up with, and I don’t want to crash Jacob’s group of friends. Cringe, as he would say. I do have some interest in a few maker spaces online, but that’s a different kettle of fish. I also fear, as many do, that the type of interactions in the MMORPGs can be a bit more reinforcing of anti-social connections than quality interactions, while at the same time sucking people into the online world and thus reducing OTHER existing interactions. I’m not looking for something to take over my life, I’m looking for a bit of a boost, some extra interaction, not a new addiction.
Follow-up tasks
Consider trivia group
Consider board game group
Consider online gaming
Hobbies or volunteering
Volunteering is out for now, I couldn’t handle the commitment, just too many other pressures in the last two years. I’ve cut way back on my volunteering in fact, and I’m good where I am. Everything that is left is both scalable and time-shiftable. None of it requires me to do SOMETHING NOW.
But most of the sites that list volunteering also have almost identical wording regarding a hobby — in short, finding a group of people with a shared interest (not quite the same as taking a class, this assumes you have some skill perhaps). My challenge is not finding hobbies, I have LOTS of things that qualify as a hobby, it’s finding ones that are shareable.
Television watching — while that sounds simply like being a couch potato, for me it is always been far more active than that…I crave new premieres, like a fantasy football pool player. I predict winners, I watch and review premieres, I try to see what all the networks are doing for serialized storytelling. I’m fascinated by the choices writers make — or don’t make — in their setup of various series. But even writing reviews, or engaging in online communities and fora? It’s not really what I want to do … I’m happy to talk to a fellow storyteller lover, but I don’t want to wade through 500 fanboys and fangirls who think more about what the one character was wearing than the narrative arc of the author. I have NEVER found anything online that wasn’t the lowest common denominator. What I want — I think — is a forum for professional television writers, at least people in the business, which of course I am not and wouldn’t be allowed to join. But writers about TV writing? Bloggers like Ken Levine? I’m all OVER that. But it isn’t something that’s going to increase my social interaction. I’m not looking to go to a Xena convention. Not that there’s anything wrong with that, I like ComicCon, I’m just not willing to pay hundreds of dollars to stand in line to see a “star” for 2 minutes. I have however been enjoying recently some online Q&A sessions that were available for free by the cast of things like Wynonna Earp and Arrow, but that doesn’t increase social interaction.
Reading — this is a painful one for me to talk about, I confess. I couldn’t really find what I wanted, so I created my own. The PolyWogg Reading Challenge. People talking about books, no drama, all good. Except with my FB cutback, that had to go too. Not going into that again, already discussed, already done. But losing that interaction is painful. I know it doesn’t exist elsewhere of that sort, it’s why I created it. There are a few online book clubs I could play around with, but the signal-to-noise ratio is way too low for my tastes (not enough substance, too much noise). Sigh. I do reviews, but nobody reads them, and I’m not interested in deep-diving into Good Reads anytime soon. The real question is if I should stop doing the reviews at all as it is a hobby that does NOT increase interaction, it drives me the opposite way. I don’t mean that I’ll stop reading. But why write reviews that no one will ever read or are likely to interact with? I need to think on that some more. On the other hand, I’m not constrained in any way by the rules I had in place to run the book club, I can read whatever I want. I will miss the recommendations of others though. Double sigh. Moving on.
Cooking — I really don’t have enough energy to build a cooking blog. I like cooking, there are some things I enjoy, but I don’t have enough commitment to engage people in a sustained way on cooking. I just don’t know or care enough about it. For me, it’s a “read, steal and make” hobby. It isn’t a “let’s discuss” hobby. On the other hand, there are normally lots of cooking classes, something to consider when I retire perhaps. Nothing for now that would boost social interaction.
Photos — In a sense, this SHOULD increase social interactions, particularly when I share them. Except I have no one to really share them with anymore, not really. I can share them on my blog, sure, but no one really sees them when I do. My goal was to be able to share from Flickr to my blog, and from my blog to social media. But a lot of who would have been interested in that was the 125+ friends that I just chopped to 25 close friends and family. I haven’t mentally worked through yet if it is worth it to keep it going. I likely will, but that seems more like an astronomy thing with other photos than a dedicated photo gallery. I don’t know. Andrea and I talked lots about an online gallery, always available, plus yearly books, but we never got around to making them. I want to put them up around the house, some key photos from the years, and we never get to it. But while I’m digressing about the usage, the real point is that at present it will do NOTHING to produce interaction. In the past, when I posted a set of photos, someone would comment, “Oh, I really like the photo with the big leaf”, for example, or “Looks like a great vacation, love the water.” It was relatively superficial, sure, but at least they provoked a reaction. Now that I’m not sharing that stuff, not sure if there’s anything that will help with interaction still or even if it is worth having online and paying for that privilege.
Long list of blog topics — I mentioned this in passing above, but I blog about a lot of topics. TV, movies, books, music, etc. But if nobody is reading them, that seems like a hobby that increases distance and isolation, not closes it. I don’t know what to do about that yet. Mostly wondering if it is worth it anymore if that chance of interaction has decreased from relatively remote but not zero to virtually zero. That’s a problem for another day. It’s just another one where I wonder if spending time doing THAT actually drives me away from others. Which is fine when I want to self-isolate, but I need to rebalance now.
Astronomy
I am in a complete state of confusion about my astronomy. I’ll try to work through the idea in my brain, but I’m not sure it will make any sense. I guess I’ll start with the nature of the hobby itself. First and foremost, it is mostly being alone in the dark looking at stars. That’s the nature of the hobby for most people. Even more so if I’m trying to do imaging, which means others aren’t able to look through the scope visually (usually). I’m also a fair-weather astronomer, it’s not like you can say, “We’re going Thursday!” and count on the weather to hold nor do I do hardly anything in the winter. I looked into an observatory last summer, but it didn’t work, and honestly, it would have increased my isolation as I would have been in the backyard alone.
Alternatives to that are to drive out to Almonte and use the observatory there. It wouldn’t be a lot of interaction, it’s more like six or seven people all individually doing their own thing. You wander over, you say hello, you go back and do your thing, someone might note that there’s a really good view of something that night, that’s about it. Some actually view together, but I don’t really have that vibe with the other people in the hobby. Jacob would go for some of that, but I’m not including Jacob or Andrea in my calculations of how to expand social interactions, those are just normal life things.
The most likely form of interaction would be the monthly star parties. The challenge is that we haven’t been able to have them for the last two years, and more pointedly, nobody has ANY idea of the risk factor when we do. Being outside limits the risk, wearing a mask would limit the risk. But to look through the scope, you have to put your eye against the eyepiece. Cleaning it in between viewers is fine, but it’s harsh on your EP if you’re using any sort of sanitizer. For most of the volunteers who would run scopes, including me, it gives us the willies. It’s PROBABLY safe, but well, that’s not the same as knowing it is safe. And with our current household risk level, it doesn’t even matter. As much as I enjoy the star parties and a night of full social interaction despite being an introvert, I can’t participate in them anyway. It’s just not worth the risk. Maybe by September, but then, it’s not even sure, and then we’ll be starting to get into the cold weather again. If they do sidewalk stuff, I might try for that using Jacob’s scope.
Far more likely is for me to engage in online discussions on the Cloudy Nights forum. I have some ideas of what I want to do for some astro projects, and it might actually lead to some interesting discussions. Not as good as in-person or even online with people I actually know, and there’s still the risk of a low signal-to-noise ratio. If I get time to start writing my Astro guide, that too should generate some interactions with people, the downside is it will be all more or less cerebral. Not unlike work interactions for people who are retiring — you lose much of your daily social interactions, as it wasn’t a “friend” network so much as a “work” network.
Put differently, it will increase “interaction”, I don’t know that it will increase “social interaction” or a sense of connectedness.
Wrapping up
I had some action items for myself at the start, but it seemed to peter out as I went. They became more “maybe this, maybe that” and less clear about my way forward. I have a whole list of maker projects I didn’t discuss either, generally because they are almost all about me sitting in my basement doing stuff by myself. Not exactly likely to increase socialization. A 3D printer COULD in theory, but I’m holding off on that for now. I’m worried that it will just generate more stuff that I need to store, and I need to do some purging of other stuff first. I still want one, just not sure when. There IS a maker community there and I’m still following them on FB, but until I actually commit to buying a printer and get into it, it’s not much of a draw for me, with no real way to contribute or participate.
I have some steps, and I’ve already taken some. Still need to parse those other ones a bit more I think.
Let me be clear that I am not throwing myself a pity party. That’s not what this is about. I like to hold myself accountable for my behaviour, and sometimes, I don’t like my results when I do.
I normally describe myself as carrying a fairly high level of stress. That’s not a complaint, it’s just context. Overall, I am blessed in my life. I know that. It doesn’t seem to make other things easier to deal with, but it should. It’s hard to keep the blessings in mind when other parts go to hell in a handbasket. I don’t blog about my relationship with my wife, that’s not my story alone, so not mine to share alone. Like many couples, we have our share of challenges, although ours are more bland than spicy. Regardless, I know my life is better with her in it, which is easy to remember.
Over the last two years of isolation, I’ve seen a change in myself. I am, in short, less tolerant of noise. In the past, particularly online, I would skip past it and ignore it. If people were repeatedly spewing it, I’d disengage and mute or unfriend them. Easy peasy lemon squeezy. If I don’t want the interaction in my life enough to warrant the pain, I disconnected. Pity parties by people are a frequent hard stop for me. The passive aggressive posts where someone has had a meltdown and says, “I know which ones of my friends will respond” are attempts to manipulate people, and I don’t do those games. When it comes to relationships, I don’t do games, I don’t do drama. When it happened in the past, I walked away. One long-standing relationship relatively ended when the person thought it was okay to have that kind of meltdown as a daily reaction to something small, she liked drama in her life, and the chips could lay where they fell. Not an option for me for many reasons. I’ll come back to that.
But as much of my interaction has moved online in the last two years, I found myself being increasingly sensitive to what I often felt were unfair reactions to things I said. I’d respond to something, express my view, and someone would say, “Well I think you meant THIS.”. Except I don’t usually have trouble expressing myself, or dance too far around issues. If I had meant THAT, I would have SAID that. And I found myself feeling like I had to spend more time nuancing things, over-explaining myself, preventative wording. Sometimes I was too tired to anticipate every possible reaction, my writing isn’t as robust as it was 2 years ago, ideas don’t flourish and flow to the keyboard as they once did. I have to plod through more than I used to, more method than muse.
As with most online interactions, tone is very hard to convey, and for me, perhaps doubly so. Often I write things as a way for me to work through an issue, grappling with the nuances, much as my blog does. I view it as expressing my PoV, sometimes explaining why I feel the way I do. Yet others have seen me as harsher than usual, more argumentative than usual, rankling more than usual. And mansplaining.
I confess I find that word offensive, perhaps because I have spent too much time in my life looking at legal issues and human rights, psychology and economics, politics and power. I’ll slip to the side for a minute because it is relative to my reaction and self-assessment. While it would be nice if conversations could discuss facts, argumentative structures and frameworks, ad hominem attacks are far too frequent. To me, I feel there is a hierarchy of ad hominem attacks of people…not that they are different in levels of offensiveness, they’re all wrong, but in terms of how I react to them. My reaction to certain types of attacks are harsher than others.
To me, perhaps the most offensive of all are the ones steeped in racism. Some are so offensive that we can’t even say the words, shortening them to N-word, for example. The long history of disenfranchisement is clear, the limiting of power of voice, to dismiss someone’s views because of race. Some are steeped in long bloody histories, some are more recent and subtle, but there are few things to me more unique than race. There’s nothing to do to change it, even if you were so inclined, nothing personal in the attack, but simply to say “You have no voice as an individual because you are a member of a class” is the ultimate form of intellectual disenfranchisement. To not only dismiss, but to also denigrate the ideas they have now and will ever have. Growing up, I knew some things I heard were wrong, but I didn’t always know exactly why or how. I didn’t have the background or exposure to articulate the inherent injustices in phrases aimed at Jewish people or Gypsies/Roma because they weren’t presented as racial attacks, almost backhanded compliments but still leaving me uneasy that somewhere in there was something not right. As a white man, I find it odd that this one ranks with me as the first level as I have no personal experience with it. Maybe because I see what extreme forms of it can lead to in wars or slavery or gaps in domestic justice, I don’t know.
I feel my second category, one of intellectual capacity tied to other disabilities, is one that I would have thought of differently 20 years ago. I would have placed it fourth. The terms spaz or retard are offensive, yet are not redacted in public discourse, they still appear in print, newspapers will print it if someone says it. More often than not, it is used as an insult to someone who has no disability, but that by extension, if you were in that category, obviously your opinion would be worthless. I didn’t have much exposure to disabilities growing up, knew very little about the challenges or levels, yet found myself back in 2005 working on the UN Convention on the Rights of Persons with Disabilities. I had been educated in Gender Equity at CIDA, indoctrinated in the Rights of the Child in law school previously (although also more instinctive), and learned a lot about “No decision about us without us”, the challenges of guardianships to capacity, etc. And I threw myself into it, trying to fill gaps in my knowledge and experience, listening to those with lived experiences, seeing their rights sometimes reduced by what appeared at first to be an elegant civil framework or solution that was theoretically designed to help. Yet I can still remember hearing a joke from someone close to me about the “short bus” to school, and thinking it funny, even as late as 2006. It was darker humour, and it slipped by my filter. But then Jacob was born and has CP as well as visual issues. My wife has visual issues too, but I have never seen her in any way as disabled or even as a person with a disability. And he could qualify for that short bus, particularly if he has to use a wheelchair at some point. With that personal sensitivity, my ranking likely rose to level 2.
So what moved down in my slots? Ageism and sexism. Ageism has always bothered me, although often in forms that others don’t see. I see it often for teens. I grew up with a lot of adults around, as the youngest of six kids, with my oldest sister being married when I was four. As such, spouses and family friends were added to the mix, and we were not kept “out of sight, out of mind”. So I listened to conversations around me, and while I wasn’t ready to jump in when it was family friends, I wasn’t told not to speak when it was just family. Yet I have seen people attack kids they don’t know because they think they have a right to intervene, to tell them what to do, because of their age. I’m not talking “be careful” type stuff, I’m thinking of examples where I saw a woman in her 60s attacking two young girls on the bus because they were laughing. And not very loudly, they weren’t bothering anyone, they were actually rather reserved. But she didn’t like it, and started giving them a hard time. It bothered me so much I had to intervene. Now, I don’t know if that was ageist stuff or what, as I have another issue that affects me which is someone trying to bully someone else by being unpleasant or aggressive. Forcing them to do what they want through a willingness to be rude, for example. But I frequently see older people being unfairly rude to kids as if it is okay. And the kid often takes it. I know some people are more incensed by the disrespect they see FROM kids, I’m more incensed by the disrespect to kids, because I don’t feel they can protect themselves as well.
I confess that have never understood sexism in any form, thinking that someone’s role should be based on their sex, it simply makes no sense to me. I suspect because many of my teachers in the subjects I liked were female. They taught me math, they taught me computers, they encouraged me to write. My parents were fairly traditional in their gender roles in the house, restrictively so, and that impacted my own capacity growing up, but it never seemed “normative” to me. I didn’t see cooking and cleaning as supposed to be women’s work, I saw it more as descriptive as reflecting traditional gender roles, and the limits seemed more situational to me. I was blind to the horizontal reality, I too often saw women succeeding and likely unconsciously thought, “Well, they’re doing it, things have changed?”. Law school gave me a reality check in ways that the women I knew around me had not. I could see more of the barriers, the frameworks that reinforced both race and gender division lines. Gender Equity work at CIDA and in my other work helped me to see the struggle more clearly and like most men, I struggle at times to know what role I play in not being someone who makes something worse for someone vs. someone who makes things better. But it doesn’t anger me usually on “behalf” of women because I don’t feel I need to rescue a damsel in distress, at least not in a general sense (I might in a physical issue or for emotional support, hard to nuance that someone (male or female) in emotional distress calls to me).
I also don’t feel that I need to represent all men. I’m not an exemplar that someone can point to of anything. I’m just PolyWogg. Warts and all, as they say. One thing that I have struggled with over the years as a mental exercise is the conflict between subjective perception and objective reality. It started as a semi-thought experiment that came out of a real-life example. I was walking down the street one night, and I noticed a woman alone ahead of me, walking a bit slower than I. Now, if it was a guy, I wouldn’t have likely thought much about it. I would have just kept walking and passed by him. There could be a 1000 reasons why that might make the guy uncomfortable, but it wouldn’t register with me. As it was a woman, I crossed the road to avoid the situation. She then crossed the road ahead of me. Since I wanted the other side originally, I was a bit annoyed and amused, but crossed back, not really thinking about it, just slowing my pace to avoid her. And she crossed again. I don’t know if she was looking for something, maybe she was trying to stay in the lighted areas, I have no idea. But now I was caught in a mental quandary. I knew that I was no threat to her, but she didn’t know that, and does her perception override my “reality”? And if you move to the beat of Marshall McLuhan, is her perception ACTUAL reality? Does her perceiving me as a possible threat mean that I really am a threat? Philosophically, it rattled me. In the moment, though, I was somewhat stuck…where I was going was just up ahead, and if I crossed, I would end up crossing again almost immediately in front of her. I slowed down and waited until she passed. But if she was aware of my presence, I have no idea if she was, what did she think? Was I a jerk? Could I have been more sensitive somehow? Such a simple interaction, and while lots of people seem to have views, there is no “right” answer amongst women. They can all tell me what they think I should have done, and most of them don’t agree. Because they don’t represent their entire sex. They’re just themselves. They can share their lived experience, but that doesn’t make it universal.
I have traditionally been more comfortable around women than men. And over the years, when I was single, I frequently had numerous female friends and relatively few male friends. With the women, I was more open with my feelings, more “emotional” if you will, partly as I felt perhaps like I was in a safer space somehow. Was that sexist? Perhaps. But a legacy of that is that if someone asks me a question at work, I am frequently more willing to share my “truer” feelings with women than men. With men, I’ll talk more about “options” or “variables” at play in a situation; with women, I’m more likely to share my actual opinion. Is that sexist? I don’t know. I feel less open with men, constrained more. If it is sexist, is it towards men more than towards women? Obviously, none of that is universal. Some men, I’m quite open about opinions or feelings about something. Some women, not at all. Does that make it all contextual? Each relationship is unique. But how I interact with them changes. Yet as men “in general” (if there is such a thing), become more aware of the historical things they were blind to, seeing how to avoid conflicts in complex relationships is kind of part of the deal. Yeah, you can write off comedians who say you can’t joke about stuff. But I know better-than-average men who question some stuff that is probably fine, partly because intention matters too. And they’re talking about it, not to complain about a loss of male privilege, but because they are reflecting and talking about their behaviour, as they should.
Which I try to do every day, to be honest. Not because I’m trying to be perfect or enlightened but because I believe very strongly in personal accountability. Not as a normative state for everyone, but as a normative state for me.
So let me come all the way back to the term mansplaining. I find it incredibly sexist and demeaning. I’ve deleted friends from Facebook who thought it was a completely innocuous term. Except it is the same basis for most sexist behaviour you see. It takes the voice away from someone who said X or Y, reduces all of what they said to a class and not the individual, is a complete ad hominem attack and would be identical to dismissing a woman as hysterical. Maybe you don’t agree. But here’s the reality. I don’t give a flying fig if you agree or not. Just as the woman’s perception decides if being called hysterical is sexist in reality or not, I too get to decide if being accused of mansplaining is sexist and offensive or not.
And yet, in many ways, regardless of how offensive I find it, it doesn’t change the original perception. Both realities coexist. They dismissed it as mansplaining, I thought I was expressing my opinion as everyone else seems to do. Yet if I disagree, and explain why I feel it doesn’t apply, I can be dismissed as mansplaining. Well, I’m a man, and I’m explaining the reasons for my opinion, not sure quite how to avoid that reality.
Don’t get me wrong, I can come across as arrogant in interactions, in person or even more so online. Not intentionally, but because I expect people to converse about ideas, not personalities. So, much of my interactions online are about me explaining things. It is also an area that I regularly get positive feedback on, my ability to explain why I think x or y is true, how HR works, how to prepare for competitions, different ways to do things in WordPress, or perhaps a new approach to learning astronomy or explaining which telescope to choose. As an analytical introvert, I deal in facts and frameworks and ideas, not tone.
I usually try to soften my views online when I type…I can easily get too far into my head and forget there’s a person with their own issues on the other end. “That’s interesting…it doesn’t resonate with me that way, perhaps because I feel this or that is important”. There have been many times where I write something and when I’m done, I just delete it. I just can’t soften it enough without it seeming way too argumentative. Or just way too long.
One of my favourite lines of all time online is the simple YMMV. Your mileage may vary. Because I am not omnipotent. I have areas of expertise, and lesser areas of knowledge, and sometimes both of those lead to strong opinions in certain areas. Let me give one such area before I talk about the self-assessment.
For kids like Jacob who have congenital cataracts, the generally-accepted protocol is two-fold:
If the light is being blocked partially, but enough light is getting through to let them learn to see, then delay surgery until they are strong enough for the surgery;
If the light is being blocked totally, they are not learning to see, do the surgery as soon as is feasible.
I say that based on not only our own experiences dealing with the pediatric ophthalmologists (PO) and our optometrist, and discussing it with friends who are optometrists, and learning directly from Andrea’s own experiences, I also binge-read several scientific studies at the time of the decision. Subsequently, I’ve participated in an online forum of parents of Aphakic children since Jacob was born, i.e. the last 12 years, and they regularly share journal articles, other resources, etc., and all of them predict the same outcome — you need at least some light or long-term vision outcomes are reduced. If the cataract totally occludes the eye, surgery is recommended **if possible**.
There are lots of reasons why that might not be possible. They could be in the NICU with LOTS of other issues going on that make them weak. They could have compromised immune systems, ongoing respiratory problems, or simply live in countries where PO options are not available (frequently seen in adoptees who weren’t treated early in life). That’s relatively settled science but it doesn’t mean there is only one decision. Lots of variables intervene.
The second point of discussion though is whether or not people use contact lenses or glasses and whether they do daily insertion and removal or long-term insertion and removal (week, month, etc.). I have read TONS of stuff on this that came through the group, plus my own research, plus asked the PO and optometrist every time. I’m a squirrel, I wanted to understand even AFTER we had made our decision. Is there something NEW in the science? Has clinical evidence changed the recommendation? And the answer is generally geographic and personal. The science itself is relatively clear — daily insertion and removal is generally the best outcome for infections, optical health, etc., but that is only if **all other variables are equal**. They almost never are. If you’re a single mother of 4 children, and you’re struggling to just look after them, adding daily insertion is likely to be a terrible option for you. If the steepness of the cornea isn’t within set parameters, then the lens is likely to fall out if a soft lens. Harder lenses are less permeable, but if they can fit them better or stay in better, maybe longer-term insertion is the way to go. There are WAY more variables.
Yet in the groups, these issues — early surgery, daily insertion — are also likely to start rumbles. Not because we disagree on the science, but often because people will say “Do this” as if it is the only way, and someone else is like, “Hey, wait a minute”. When someone new joins the groups, the first post is almost always the same — “Here’s what’s happening, help me understand it.” They’re looking for a simple, plain language view that doesn’t tell them to do X or Y, but just helps them understand it. I know, because I was there. I’m always looking for the gateway framework from which all other learning will flow more easily.
On a frequent basis, whether it be in a CP group or the Aphakic group, I’ve responded to someone’s first post and said, “Welcome to the group, breathe, etc.” and then laid out a simple framework that I’m always clear “works for me” and that their mileage may vary. So much so that I frequently get people from the groups sending me separate messages telling me that in 10y of dealing with the issues, they’ve never seen it explained so well; other times, admins have asked if they can pin it to the featured areas as a reminder for a while or turn it into a FAQ.
On one level, that is a humble brag. On another, it is simply part of my zeitgeist as a person. My mind often creates frameworks for understanding things that other people don’t see the same way. When I share it, if I have time and energy, I try to stick in all the caveats about “my opinion”, what resonates with me, YMMV, etc. Because it is a framework that works for me.
Yet sometimes I don’t do that. I forget to add in all the niceties. I type quickly, I say my piece, and I move on. If I’m posting it, and my avatar isn’t god, I feel like it’s my opinion and that should be clear enough.
Earlier this week, I did so on a FB post that Andrea shared regarding ADHD. It was a series of memes that a woman posted about what ADHD looks like for her based on her experience and that it looks different from men’s ADHD. Andrea shared it with the line that “as I know some of you have been recently diagnosed with ADHD, sharing for interest”.
Now for way too much context. ADHD came up as a possible explanation for the way my brain works back in high school, and at university, and because I’m a resident squirrel aka analytical introvert who lives in my head who has spent a LOT of time self-analysing myself, I’ve also read a fair amount on ADHD over the years. Which means when she posted, I immediately clicked to go through it. Some of the high-end scientific and psychological stuff eludes me, too technical in CBT at times for my tastes, but I feel I have an above-average awareness of the issue, including some recent articles about differences between men and women for ADHD to see if part of the reason why I seem ADHD-like is because I’m a secondary “green”, more in tune with emotions and they’re equating socio/psycho/emotional side vs. more Type As.
I liked the post, even thought about sharing it, but as is so often the case, my liking it gets bogged down in details. I like the thrust, but don’t like part 2; or I feel part 3 is misleading. I didn’t share any of those comments, not something I would normally engage on. As is common with me, There were a few nuances in it that I disagree with, niggly stuff in the way it was presented, but it seemed bang on for explaining to those WITH ADHD how it frequently presents. Several of Andrea’s friends commented positively on it, seemed like a good post. As I said, I would have considered sharing it myself, except for the niggly details and one larger nuance that I felt was a bit too leading. And then one of our common friends basically said, “Oh, I’ve experienced that, I wonder …”. The person in question regularly does this, she jumps to a simple explanation for stuff, and it is the exact thing that bothered me about the memes. As a description of what someone experiences with ADHD, for what my opinion is worth, it is one of the better examples I’ve seen over the last 10 years. But the details that bothered me was that “simple” diagnosis is frequently one of the biggest challenges in ADHD over the last 30 years. And seeing a friend fall into that trap bothered me. I dashed off a quick response to her to say, “No, wait a minute, it’s good for explaining / describing” but gave some of the problems with using it as a diagnostic tool. I didn’t nuance everything perfectly, I didn’t try to. This person doesn’t understand nuance well, and softening it would mean she would miss my point entirely.
So I gave her the quick version of my framework from the last 30 years of reading about it, and particularly what it looks like in adults. For me, it comes down to three elements of diagnosis — symptoms, prevalence and impairment, and coping mechanisms. Am I an expert? From from it. But I am a bit better informed than the average bear, and her usage of it was WAY less than that of an average bear. For context, I’ll explain why I bothered to respond to her. It was NOT a quick reaction, it was based on something substantive.
From the scientific literature, the diagnosis of symptoms is REALLY hard. Almost everything that occurs in ADHD also occurs in people who are just dealing with life. Distraction, inability to focus, obsession, hyperfocus, etc. None of them are unique to ADHD. It’s one of the fundamental problems of the 1980s for diagnosis in kids and the prescription of Ritalin, it was often mis-used that if a kid experienced those symptoms, they must have had ADHD. In the 1990s and into the 2000s, that focus shifted from simpler “symptoms” to issues of prevalence and impairment. One area that I find fascinating myself is that the symptoms also figure heavily for analytical introverts, i.e. me. It’s why I’ve spent so much time reading about it over the years, wondering if maybe that is part of my psyche (it’s not). Equally fascinating is that those under stress and anxiety or grief can demonstrate the exact same issues. Others have shared that fascination, it’s not unique to me, but it has suggested to some that it is primarily an input processing issue more so than an analytical issue, i.e., when stressed or anxious or grief-stricken, input processing is frequently affected with similar outcomes. Not 1:1, according to most researchers, but fascinating nonetheless. It is the issue that bothers me the most about the memes — it suggested that although it appears this way, experiencing these things does not mean you have ADHD. It’s symptomatic of something, but lots of things would give the same symptoms. It’s why I didn’t share it. I can see myself easily in every one of the memes, for instance. It seems like a fantastic description IF YOU HAVE A DIAGNOSIS. But my friend was using it to MAKE a self-diagnosis.
Yet the same research seems to show that the symptoms are generally the same in women and men, as is the likely prevalence. The meme suggested the symptoms are different, which I found a bit niggly. This is incredibly true for physical things like heart attacks and strokes, and it is a popular and highly useful / revealing bit of wisdom to share that can save lives. But in psych research, it doesn’t seem to hold that the symptoms are different but rather that the interpretation of the symptoms are often highly sexist. As noted in the memes, woman patients have historically been dismissed as simply being ditsy, i.e. it isn’t just they are unable to focus, or can’t figure something out, it’s diagnosed that they’re just women, and women shouldn’t worry their pretty little heads about complex things. One of the active challenges in the literature is getting the symptoms identified properly as being the same. Once done, most research seems to estimate that prevalence may be the same between the two binary sexes. It’s still open to debate in the literature, as most things like this are, but it made me reluctant to share, and I didn’t feel I should be trying to edit someone else’s work, it was really good description, just not diagnostic enough. I wanted more context.
However, another challenge raised in the psych research is that women frequently DON’T report because although the symptom is the same, their own gender role, societal interpretation of the gender role, and their own self-beliefs result in different levels of impairment and coping mechanisms. The memes described it as the symptoms, which seems inaccurate to my understanding of the research. A misclassification, if you will, in a larger framework. The danger is that an example of a woman feeling overwhelmed at home and wanting homelife to be perfect is not exactly a sign of ADHD, at least not according to the experts. That only reinforces traditional misdiagnoses…if she is a mother, or has an imbalance in gender roles or self-beliefs about the household and families, it MAY manifest there as something like a Tiger mom. Not because she IS a Tiger mom per se, but because her ADHD is manifesting itself in that area of her life — her impairment level and resulting coping mechanism, maybe even over-compensation, could produce Tiger mom-like behaviour. Not every woman with ADHD and kids will produce a Tiger mom response; not everyone who is a Tiger mom is because of ADHD. And coping mechanisms for men and women are VERY different because they often cope/compensate in different areas of their life, but that seems to be more based on their actual work/life roles, if I’m reading the research right. Women who are very work-oriented often have very similar coping mechanisms to men who are very work-focused, for example.
So, in response to the friend, I was fairly blunt. No, symptoms are not different, it is more about coping mechanisms than symptoms, and experiencing this alone doesn’t mean you have ADHD, it is experiencing this on a sustained basis with impairment while having no other obvious cause (like anxiety or grief).
For that, one of Andrea’s friends pointedly used sarcasm to tell me my mansplaining ADHD was lovely.
I was offended, I confess but not as personally as you might think. The reaction is not atypical for her towards any man and one of the reasons I unfriended her long ago was because of her frequent offensive generalizations about men as jokes. I do however object more to the term mansplaining now that I have a 12-year-old son. Normally I would let it go completely, more wondering why I haven’t completely blocked her instead of just unfriending her, but I chose not to ignore it this time. As I said, I’m less tolerant of noise these days and partly as I wasn’t even responding to her, I was responding to a very specific person’s belief that if she had experienced those, she might have ADHD, i.e., using it as a diagnostic tool. If she didn’t like what I wrote, I felt it was none of her fucking business, to be honest. So jumping in with her regular sexist comments about men pissed me off, and so I asked if I should respond equally to suggest she was being hysterical. Was it offensive? Yep. Was it meant to be? Absolutely. I’m tired of her shitting on people without challenge from anyone. In my defence, I am not the only person who feels her behaviour is caustic at best, and others have blocked her accordingly, which she likes to wear as a badge of honour that “she speaks her mind”, regardless of how offensive she actually behaves towards people. My wife loves her, sure and that earned her friend a certain amount of deference over the years, but I would never let her friend talk that way to my son.
Now, does all of the above — my actually having some better-than-average insights into the literature about adult diagnosis of ADHD and some of the factors that limit attention related to male and female “symptoms” vs. “reactions”, or that I was responding to someone bluntly who doesn’t get nuance — factor into her response? Not really.
If she felt I was mansplaining something, she’s entitled to that opinion, and even if I don’t feel like that was what I was doing, it doesn’t make her wrong. Nor do I expect the benefit of the doubt from her. Her perception, her reality. Just as my perception of how offensive she was is also my reality. Two realities coexisting.
What I didn’t expect was my wife to agree with her, and to even go further and call me a troll.
When she told me so, I confess I was shocked. She wouldn’t listen to why I was offended and dismissed me completely, no benefit of the doubt at all that I might have reasons for my reaction, didn’t seem to care at all.
I normally am able to hold myself in check when I’m pissed, but with the impact of the last two years, the increase in emotion since she started chemo treatments, some health issues going on for me, I’m not at the same level of resilience. Maybe if I was, I would have nuanced things for our mutual friend a bit more, or I might have dismissed it entirely. Or I might not have reacted to the offensive friend at all. However, things affect me more than they normally do, and since I’m spending more time online, some of that reaction is based on online stuff. Yet Andrea’s reaction was more immediate. Not online, nowhere to hide, nowhere to retreat, we were in the car driving her to do errands.
That isn’t meant to excuse anything, it’s just part of my harsh self-assessment of the situation. If I want to control my behaviour, I have to know how I got to a situation I didn’t see coming. I lost my temper and said something even more offensive to her, and in front of Jacob.
I work really hard NOT to ever lose my temper. Because when I do, I don’t care what I say, I am in “hurt” mode and I will lash out verbally with whatever I think will offend the fastest. While I occasionally get irritated and things will burst out, I do not lose my temper. I will always walk away long before then. But I know some of my triggers. I anticipate them. I plan for them. When I was younger, feeling “trapped” would increase the risk of losing control of my mouth. Feeling bullied increases it. Feeling disrespected can be a trigger if done aggressively. Feeling trapped and bullied and disrespected are not a good recipe. So I have coping mechanisms. Walking away if things get heated are obvious. Making sure if I go somewhere, I always have an exit option for driving or whatever. I do not let myself feel trapped anywhere, unable to get away. If people are into drama, they are not part of my life. Two family members are at the top of that list, as is an ex-girlfriend. If people are relatively doing manipulative stuff, they’re not part of my life. If they come at me with malice, they’re gone from my life in an instant. No regret, no reprieve.
That isn’t about being kind or not tolerating abuse, or any of the popular reasons people often use. It’s simply that giving into those feelings is not who I want to be, regardless of anything I want to tell myself was provocation. Even if someone was attacking my family, and I jumped in to protect them, even if it seemed justified to stand up for them with some sort of verbal attack back, that doesn’t mean I would like my behaviour afterwards. Even for good reasons, I don’t want to behave like that, ever. Sure, dismissing my views because I’m male, accusing me of being a troll, with no benefit of the doubt for who I am and what I believe, or any semblance that I’m her husband and deserve a bit more respect than that? Yeah, that pushed me past the point of control. Which pisses me off ever more — not at her, I never care about other’s behaviour towards me, they have their own shit to do deal with and for her, it likely seemed less aggressive and more deserved. I am pissed at myself that I didn’t see my reaction coming and lost my temper, and did so not only to her, but also in front of Jacob.
I didn’t see any triggers in the equation. I was “trapped” in the car, so couldn’t walk away, but I was the one pushing the conversation, not her. I was the one venting about her friend. I didn’t feel I was out of control, or even near it. And she wasn’t bullying me, or coming at me with malice. Yeah I felt disrespected, but that isn’t a new experience in my life, and not normally something that would put me over the top. It stings more coming from her, but that shouldn’t have put me over the edge.
And going back, the trigger that started things off was an interaction on Facebook. But no, I don’t mean FB is the culprit. I mean that I didn’t see an interaction on social media leading to my lapse in judgement. And it doesn’t matter if I agree with the assessment. The self-reflection, the harshness turned on myself, is that perception is reality. If I am doing something so egregious that my wife thinks I’m actually being a troll, well, that battle is long since lost. My judgement is way off, and I can’t afford that risk when my resilience is so far down.
Which means Facebook and social media is neither a safe space for me, nor apparently for them with me in it. I have withdrawn. It pains me to do so, as it has been my primary source of social interaction at the moment, but I will not be the person who makes things worse for others. If I can’t rely on my judgement, if I can’t navigate complex relationships in a way that doesn’t harm, then I cannot be part of them. It isn’t a childish “taking my ball and going home”, it’s closer to an alcoholic deciding they cannot drink again. Because it isn’t the first drink they want, it’s the first ten. I can’t simply pause and all will be well.
I disconnected my FB account from Andrea’s and even unfriended her. If my online actions hurt her, they’re not worth it to me. I also basically went through and disconnected almost all friends and family that are likely to connect both of us together, and closed my involvement in a reading challenge group I was running. That one is less about her and more about the fact that I’m the only guy in a group of 32 women, which is definitely not a place for expressing my views about things, if my judgement is so distorted.
I’ve deleted almost everyone from my FB account, leaving primarily people I am friends with at work and some long-time friends that I knew before Andrea, plus my family. I dropped from about 130+ to 25. And I’m really only keeping the account active so that it is easy to message me directly, if some of them choose to do so at some point and to maintain my linked to the PolyWogg.ca FB page. It shares my blog posts, and some people follow only through that page. I’ll still follow other people’s news on FB in that smaller grouping and some of my pop culture feeds but I won’t be expressing much.
Which leaves me finding ways to compensate for the lack of FB. I’ll need to find ways to boost interactions, albeit with new people I imagine. I have a fairly high degree of interaction on Reddit related to my HR guide, and on CloudyNights related to astronomy, plus some work on 3D printers which I might put on hold. I was reading a post earlier today about, well, basically how to make more friends as an adult if you don’t drink i.e., somewhere other than a bar, and the suggestions were:
Get a dog;
Take classes;
Meet people at the gym/yoga/fitness class/rock climbing place;
Make friends on the slowly app (like penpals);
Find an activity/hobby partner;
Volunteer;
Never eat lunch alone;
Dungeons and dragons;
Join a sports league;
Get a motorcycle;
Get a new hobby;
As I said at the top, this isn’t a pity party. Honestly? I’m one of the most self-reliant people I know in terms of interactions with others. I can go a pretty long time with little to no interaction, I just know that it’s not that healthy. And I still live in a house with two other people, so it’s not zero, plus I still have my existing connections. I suspect I’ll pass on the dog, and I’m limited in what I can do outside the house because of the high-risk nature of our household profile. Lunches don’t seem likely. Me thinks I’m likely to focus on the classes albeit virtual (to keep my mind active), maybe try the penpal app, definitely expand options for potential online gaming, and consider some new hobbies. I don’t need to add any of that though to my list of projects, most of them were already in my todo list, I just need to prioritize some of them.
And when I want to express myself about something, I have this blog.
Last week was Andrea’s first chemo round (1 of 6), and she’ll blog about the details when she’s ready. In the meantime, I’m dealing with my own reaction to the treatment.
Leading up to it, I didn’t know what to expect. As I mentioned previously, I was looking for a metaphor, and Battle Buddy seemed good. Sort of. But as she started, it wasn’t really fitting. It’s one of those weird things that for some, fighting cancer is all aggression. Beat it, stomp it, kick its ass. Take it on and kill it. And for that kind of fight, maybe Battle Buddy would work. But it isn’t how Andrea sees it. She isn’t seeing it in terms of a war. She’s taking treatment and healing. So something more managed, a process perhaps. Or maybe embracing life for inner peace at some stage. But not with a whole of universe / life and energy / zen approach either. She’s not embracing crocs and tie-dyes, and making edibles. At least I don’t think she will be.
But for me? It’s like it’s both an invisible disease AND an invisible treatment. She had treatment on day 1 of 28, two drugs by IV. As I said, she’ll talk about the experience herself, but for me, it was…well…anti-climactic. Certainly nothing resembling a battle. As I noted, it’s more like “Let’s get that stuff slowly dripping into you!”. It’s about as eventful as dialysis, which no one would see as some giant battle. The drugs are harsh, but while they were going in, I didn’t really see much happening. She had a reaction, and that was obvious, but the main part of the reaction was itchiness and some hives.
From the outside looking in, I can’t see how itchy it is. I can’t see if something is hurting. She had pains and aches in the days afterward, but she’s not debilitated by the treatment. No nausea, no hair loss, no crippling weakness that confines her to beds for weeks, no nurse coming by to check on her. She’s had issues in the last 7 days, I’m not minimizing them in any way, I’m just saying from the outside, I can’t judge them. I don’t SEE anything. It’s weird.
From the beginning, I have seen nothing. I can’t tell she’s sick except to the extent she tells me how something feels. Outwardly, it’s invisible. I can neither see signs of the disease nor see what the treatment does. There’s no surgery, no scar, no recovery as she moves, like after her C-section or appendectomy.
It feels weird. She is the “sickest” she has ever been in her life, and I have no idea what’s going on unless she tells me. Which makes it hard to know what to do to help her. I can’t really anticipate anything.
Way back when she was pregnant and put on bedrest, I freaked out when I came home one night and found out that she had got off the couch and thrown a frozen pizza on our pizza stone, opened the oven and put it in, bent and lifted and moved around the kitchen. It seemed like a ridiculous risk to take, and as much as I want to respect my wife’s right to choose in any situation, that’s not the same as respecting the actual choice. And I know there’s a risk in any serious illness of treating the person like an invalid, assuming debilitation that is greater than the reality.
So I wonder…if she doesn’t eat anything, should I be coaxing her to? If she wants to make dinner, should I be throwing myself in front of her and saying no? Do I tell her I won’t let her do her own laundry (normally I do it), take out the garbage (shared), make a sandwich (normally we do our own), assemble dinner, or actually cook dinner?
The correct answer is, as it always would be, whatever works for us together, to talk and decide. Yet I also know that she’ll push herself to do stuff that she normally does, not out of desire but a sense of obligation, without worrying if she’s up to it, and I’ll worry but avoid stopping her as I neither want to argue with her about it nor make her feel like an invalid who has to give up independence.
Back last winter, when I was dealing with my leg wound, I felt like a wuss. It was driving me into depression, and ignoring infection or the pain, it was originally just a scratch. I felt like I was doing the man-cold thing. Yet it was knocking me on my ass mentally, emotionally, etc. When I eventually had the experience where I looked like I was flayed, it felt like “At last I have proof, this isn’t just me over-reacting!”.
I don’t have that with Andrea’s experience either. Her discomfort of the last week? I can’t judge it, I can’t help nudge her in any direction. She has a tendency in many situations to be passive, to not push, so part of my likely job in the six months is to help her self-advocate or to advocate when she’s not feeling up to it. But how do I advocate when I can’t point to anything as a problem? If she’s not sleeping well, for instance, how do I as an external person help advocate if I don’t think the doctors are doing enough? She experienced strong headaches over the last week, and the medical response was “take Tylenol”. Is that sufficient? Should she be pushing for something more aggressive? Should I be helping push? I don’t now.
The symptoms and problems are invisible, the silent disease that everyone expects, but I wasn’t expecting the treatment to seem invisible either. If you saw her in the house, and knew her well, you might notice she’s a bit more tired than normal, less energetic, less interested in going out to do something, shorter periods of focused concentration. But just visiting? You would see nothing.
But I can point to my symptoms. I’m also unfocused. I don’t really want to be at work, I could care less about what is going on with my files. It’s not a priority for me. It isn’t a distraction to be there, because there’s nothing specific for me to worry about. Some people find it helps to keep working, as I did when Andrea and Jacob were home together after he was born and going through issues. As stressful as that time was, sometimes it helped to zone out and just do my job. A break from the all-day reality of working about Jacob or his future.
For Andrea’s treatment, I don’t feel a sense of dread. I feel confused more than anything. If I can’t see harsh aspects of treatment, and I can’t see signs of the disease, will I underestimate how bad it is and miss signs when she really needs me? For day 1 of her treatment, I was with her, but I didn’t really DO anything. I just hung out with her. I helped her walk to the bathroom, I handed her food from our packed lunch, I handed her the water bottle regularly. But I wasn’t “entertaining” her, we didn’t play games/watch TV/read/listen to music. We just sat there. Drip, drip, drip. I was the first to notice her rask and hives from the reaction to the drug, but that was by mere seconds before the nurse would have seen it. I listened regarding meds, etc, which is useful in and of itself.
Don’t get me wrong, being there is enough, I know. I just expected there would be more to do, more support that was obvious. Almost like a guide that would be called “what to expect when you’re not expecting”. And without that, I feel a bit at loose ends. I don’t feel like working on anything productive, for fear that I’ll be needed for something. Even if I did, my focus isn’t really there. Writing this has taken me a week to figure out what to say. And I’m trying very hard to leave room for Andrea to blog about her own stuff.
Week 1 of round 1 is done, and she waits for her next round to start in 3w. What will the next 3w look like? No one knows. What will R2, R3, R4, R5, or R6 look like? No one knows. Will there be an R7? No one knows. We just wait and see. We have a date for her last supposed treatment, and it coincides with some stuff going on at work too. A graduation date of sorts. But what will that look like?
Will she be able to go out more? We’re likely in continued lockdown as a household for 6 more months, less interested in the lifting of mask mandates than we are in keeping her even safer than she has been in the last 2 years. The Ministry of Education is lifting masks at school after March Break, and even Jacob is mixed in his reaction. He likes not having to wear one all day at school, but he would rather keep doing it in his class if it would keep his mother safer. The idea of going to a hockey game, or an event at the local theatre, all of it sounds good. Even being in a movie theatre. But right now?
My reaction is the same as when Andrea was on bedrest and decided to put a pizza in the oven. The benefit is not worth the risk. Which puts us almost completely in a holding pattern, or at least it feels like one. While we can’t put our whole life on hold, it’s hard to plan when you don’t know what to expect.
I’m planning to do some stuff in the backyard, to make sure she can use the gazebo almost daily. To be able to go for walks each day in the neighbourhood, once the snow clears, or to take her to the malls and let her walk with the old folks. To be able to do some socializing outside for dinners on the deck if possible, even if indoors here might not be viable options.
To illustrate the pernicious nature of the uncertainty, consider that I had been thinking of buying a 3D printer to go in the basement. Right now? My reaction is that it isn’t a priority and I’ll figure it out in the fall. Why? No reason. I just don’t know if it’s worth the mental energy right now to try to learn something new. I’ve got other things I can do. But if I stretch the reasoning, I’m basically saying I can’t buy a 3D printer right now because my wife is going through chemo. Huh?
So what am I actually doing instead? Binge-watching comfort food in the form of shows that I have already watched in their entirety. Grimm, Arrow, Mentalist, Star Trek: TNG, The West Wing, Alias, etc. I have some new stuff in there, or at least new to me, in Supernatural, Once Upon A Time (I stopped watching mid-series), but it is all relatively familiar pablum. I have some writing I want to be doing, or more accurately, that I want to want to be doing, but right now? I feel like we’re on hold.
People often say they feel the same, waiting for the other shoe to drop. In my case, I haven’t even heard the first one drop yet. It’s weird.