Well. Here we are. Let’s see if I can manage to start and finish a blog in one day/sitting. I used to write pages at a time, several times a day, every day. But time and other things have a way of altering one’s trajectory, sometimes temporarily (I hope.) I miss writing, I really do. I miss the communities where I would write and read others’ and leave notes and encouragement. It was about being connected. I have always connected better with the written word. But the flip side is…it’s a two way street. When no one writes back or even indicates that they’ve read…it loses the sense of connection. Sure, it’s still important (and vital) to my well being that I express myself, but often writing now leaves me feeling emptier than I started out. Like shouting in to a canyon. The view is breath-taking and nothing can change that. But many days, it can still leave me with a sense of being absolutely alone. In normal-times (aka B.Q.- obviously before quarantine!) that loneliness wasn’t such an issue. It could easily be filled with actual people. Even if it was just sitting in a sunny window at Michelle’s and not speaking to anyone…the baristas and owners always shared a smile, most knew my name and used it even. Sometimes being greeted by name with a smile could change the tone of my whole day. That’s something that I forget pretty frequently, but thankfully my subconscious remembers and still drags my body out the door to familiar places even when it doesn’t know why. And it’s not just the coffee shop. But so many of the little stores on Main Street. Even before I worked for George, he always offered a smile and a wave (if his hands were empty, which they rarely were, lol) as I passed his store. And Miss Jean, who I sometimes actually see in her work environment, but more often at the coffee shop or County Seat or just walking in town. This community is full of people who make my day brighter just at the sight of them, whether I know their name or they know mine. Businesses that I can’t afford (because I can’t afford anything) but who welcome me even with empty pockets. I miss seeing John sitting in the sunshine counting people in cars, philosophizing about everything outside his shop. Anyways. I digress…
I’ve seen so many posts, so many articles about using this time to become a Better You. So many places pushing ways to not “waste” your time in quarantine. And when these things come from an informed- or at least genuine- place of caring…I’m all for it. I’m ALL for gyms and educators and others sharing resources, challenging their members, encouraging healthy lifestyles in the midst of the chaos. I commend them. I commend those who are able to focus, stick to a routine, practice self care that is productive, and maintain a positive disposition.
I am not one of them. That’s not to say I’m not doing the best that I can. And it’s not to say I’m wallowing in self pity or content to gain 50 pounds and 3 more chins. But I saw a meme that said something along the lines of how sharing your story may help at least one other person. Which is something I always try to remember. That sharing my story doesn’t just help prevent me from suffocating under the weight of it- but it might be helpful to someone else. Even if it’s just a moment of “geesus, I don’t wanna end up like that! I’m gonna make a change!!” but mostly I hope it’s more a “oh. Maybe I’m not alone in my way of seeing things…” So. Here’s some story for you:
I wake up pleasantly most days. The first sensation is the soft sheets and comfortable temperature. Then I open my eyes and marvel at how perfectly the light comes through the curtains and shades- so white, but not too bright. I’m usually ok until I move. That’s when my brain registers the way my hands feel tight and swollen. I resist the urge to curl my fingers in to a fist to test how sore they are, but I do it anyways. I start to worry…yesterday I could curl them tighter without as much pain, couldn’t I? My palms didn’t burn and tingle as much a few days ago, did they? I try to do a body scan to relax- it used to be a somewhat effective way to calm myself down a few years ago- progressive relaxation. Not so much now. It highlights the ache in my ankles, hips, elbows. Places I’ve never hurt before. Places that have no reason to hurt now in the way they do, even if I’m in my 40s and awful about exercising. I have those aches, too. But this pain is deeper, in a way that I can’t identify sometimes if it’s muscles, bones, nerves, or something else altogether that hurts. It feels like if I could detach the muscles and tendons and untwist them from one another, and then scrape my bones smooth with a brillo pad, and then put everything back together again, I would feel better. (But I had anatomy & physiology, and I know that’s not necessarily how my body is put together.) And while stretching and exercise would help, it’s overwhelming- to be in pain before stretching, be in increased pain while stretching, and then be in even more pain after stretching. It makes it really hard to get to the point where the stretching eases the pain. And yes, it’s as much a head game as a body game probably. But my head’s not in the game right now. I take full ownership of that. But also, in the interest of full disclosure- when I try to get my head in the game and force myself to do things like stretch, it turns in to a war against myself and spirals into a slippery slope of “why bother??” And I know from past experiences in my head that the “why bother” quickly leads to suicidal ideation, and that’s just not a place I think I can pull myself back from right now. So. Yes. I do a lot of sitting on the couch. I do a lot of “I should go for a walk, do some simple stretches, exercise…” and beating myself up for not doing those things. But ultimately, the fear/reality of physical pain wins. The days that are the most bearable are the ones where I accept early on in the day that right now, self care might look like and might be “laziness” to others, but that I know what is going on in my head and in my body. That’s not to say I want people to discontinue encouraging me, pushing me, dragging me towards a better self. Because some days I CAN do more than other days, and admittedly I CANNOT be trusted to kick myself in the ass every day to see what I’m capable of. Not right now.
At first, when BQ was just turning to DQ (during quarantine), I was handling things really well. I was calm, I was able to keep a handle on my anxiety. I have spent a lot of time living in Crisis Mode. It’s my default mode, and I know how to do it. The thing is, the way I also survived Crisis Mode was by 1. working at whatever job I was in until I had no energy to put any of the self destruct plans in motion 2. keeping up appearances with the public in general because while “fake it til you make it” never sat well with me, I at least took pride in my ability to keep on a mask…As Ani sings…”But as bad as I am I’m proud of the fact That I’m worse than I seem ” 3. seeking the comfort of close friends who know my struggles and love me despite how unlovable I often feel 4. depending on the safety net of my support system to provide at least a handhold when my grip on the edge of the cliff broke 5. accepting that, if all else fails and I can’t reign in my brain, inpatient hospitalization was available as a last resort.
But now, in part to it being DQ and in part due to circumstances that were already in place BQ, most of my methods of survival are unattainable to me now. And again…these aren’t complaints. More observations than anything. Which is also worrisome, as I am feeling more and more the call of disconnecting, disassociating, whatever it is that I do when I feel more like I’m watching myself exist rather than feeling myself as I exist. It’s bittersweet because if I had better control of the disconnecting/reconnecting it would be a GREAT tool in this time. But I don’t. I have better control of it than I used to in that I have been able to stay in my body and stay connected in times that I never could before. But once that disconnect happens, I don’t feel like I’m much better at rejoining reality when I want to.
So. I eventually get up. Convince the dog to also get up- since our living situation has changed, she sleeps in her crate now instead of in bed with me. It took a few days, but now she goes in her crate during the day whenever she feels like it, so I know she at least doesn’t hate being in it and maybe even finds some comfort there. However, yesterday I threw her blanket in the wash and forgot so she didn’t have it last night. She didn’t complain loudly, just a whimper every few seconds. But I could also hear her tags jingle from her shaking, so I gave her one of my worn t-shirts to burrow under and that seemed to suffice. Anyhow. I usually have a cup of coffee and try not to feel guilty that I drink at least one cup a day now, sometimes two. I used to only have a few cups a week, so now I feel like I’m gonna be addicted to a cup a day. But! I have at least discovered that I can drink it with 1.5 spoonfuls of sugar instead of 2 heaping spoons of sugar and cream/milk. So. That’s…healthier? I’M TRYING, OK?!
After coffee…well. That depends. Most days I spend a few hours trying to fend off the existential dread of existence that seems to seep in when I’m not actively pushing it away, then I either give in to it and procrastinate every productive action with thoughts of how many other productive things I’m NOT doing, or I medicate. Some days I give up fending off the dread and medicate early. Those days are better days. Probably not any more productive, but at least I don’t feel like I’m engaged in a pointless battle every single fucking second of the day. See, that’s the thing. If I were battling for a purpose…well, that would be one thing. But right now on many days, the only thing I’m battling for is to make it to the end of what feels like another excruciating day, just to get up and do it all over again tomorrow. Because while I want nothing more than for Covid-19 to take a long walk off a short pier and stop killing people and/or beating them down from both physical and psychological symptoms…well, I was not in a great position at the start of all this. I was in limbo. I’m still in limbo, but now with the added threat of sickness and death befalling the people that I love (along with those I like, those I know, and those I hate but who don’t deserve death or illness…) Not even going to get in to how somehow my sponge heart also soaks up the misfortune of the millions of people I don’t even have on my radar…
And, I’ll still be in limbo after this. And maybe it WILL be a better world…maybe this will have shed light on the intrinsic cracks in every system that need to be fixed. Not that I believe they can ALL be fixed fully. But damn, they could at least be acknowledged instead of just ignored or viewed as “the way it is.” If this pandemic shifts not just the outward message but also the majority outward action to “it doesn’t have to be this way!” that will be amazing. I want that. I want to not be so discouraged by so many singular people in the government continuing to use even THIS situation as a way to step on people just to climb higher. WHAT THE FUCK ARE YOU HOPING TO SEE??? I seriously don’t get it. I don’t WANT whatever is at the top if it means other people have LESS because of it. Sure, if it’s accessible- TRULY and CLEARLY accessible to everyone and doesn’t hurt or actively/secretly take away from others…fine, give me a taste. Otherwise, it’s just something that will poison me. I have a delicate system, you know.
And no. I don’t believe that giving people “handouts” will help. It will enable survival, but it will also just perpetuate the broken system. Right now, survival is important. But it must be done in a way that doesn’t further fuck up the system and make it worse on the other end. I don’t know how to do that. I don’t know how that all works. From my perception, if the government can suddenly come up with a fuckton of money for small business or as they did in the past bailout large businesses…well. I am pretty damn sure this virus didn’t bring a printing press or cash money with it, right? So the ability was there before and the ability will be there after. I get that just putting more money in to the economy doesn’t fix anything long term. It DOES however, highlight the fallacy that money has any actual tangible worth on its own. It highlights that the thing with value is the service or product provided NOT the number printed on the paper exchanged for it. This whole thing highlights that the things we need for survival are not the things much of society has recently (past few decades?) viewed as worthy of more pieces of paper. At least not in a consistent or generally equal way. Yes, entertainment is important and an elite class of entertainers gets many, many, many pieces of paper for sharing their creations or skills with the world. Presumably, we pretend they deserve that many pieces of paper because they have worked harder or smarter or better than others with equal talents. A few years ago, my friend spent way more pieces of paper than I feel like she could afford, so that I could see P!nk in concert. And holy fuck, was it an amazing, powerful, soul-altering experience. If I were able, I would pay just as many pieces of paper to do it again.
But also, the other day Namoli Brennet had an online free concert. I’ve been a fan of hers since my 20s. More like an annoying groupie, actually! I tried to catch every concert when she was in the area, and over the years I’ve sent as many pieces of paper her way as I was able when she was trying to fund an album or a tour or whatever. Her music is just as powerful, just as meaningful. And my connection with her is worth more than any paper money I could give. The emails, postcards, autographs. The fact that she played my favorite song during her concert…because it meant it was probably a hundred other peoples’ favorite songs. Which means there are 100 other people in the world who appreciate and connect with her music just like me.
Don’t get me wrong- I’m not saying P!nk is in the wrong for charging a zillion dollars for a concert ticket. She’s stuck in a system, too, where she has to pay the venue, the insurance, her crew, travel expenses, etc. It is worth it, to me, to spend paper on the experience of seeing her live, of feeling the pure fucking energy in a stadium full of other people…some of whom maybe gave up a month’s worth of something just to attend. Others who were only there by the grace of friendship.
But here’s the rub. I can never repay my friend with as much paper. I can’t. So I feel guilty. I feel undeserving of the gift. This leads me to distancing myself from her, leads me to feeling like we’re on a different level. But we aren’t. I’ve just been duped in to believing that I can’t give her anything as meaningful because it won’t have the same cash value. THIS IS A LIE (right??). She gave me the opportunity to enjoy a really powerful experience. My sadness is in the reality that I couldn’t share that experience with her, or with anyone else I was close to, because of the lack of paper available. Why is that? Maybe it’s my perception of the value of connection. But I don’t think people should be denied experiences just because they lack paper. Should I be able to get the fanciest camera or most techy computer if I don’t have the paper needed for it? Not really. But at least the paper exchange for material things makes slightly more sense to me, to an extent. Probably because until the last 5 months, I was still able to make the decision to purchase even the cheapest version of those things. At the expense of other things, yes. But I still had the resources to make even poor choices and choices that would put me further behind in the future, probably. I own that. But also, in healing and maintaining a suitable level of mental health, the huge push is to “live in the moment. Be grateful for what you have…” etc. Right. These things are important. And I do much better mentally when I’m unconcerned about the past or the future. But no one puts out guidelines for that. No one qualifies it with “Focus on the present, not the past or future. Unless money is involved. Then definitely focus on the future and remind yourself that the mistakes you made in the past got you in the shitty situation you’re presently in and even though you can’t stop it from getting worse because the ball is already rolling and everything you do will only forestall the inevitable and keep the credit agencies from calling 18 times an hour…definitely just focus on the present.”
I need the fucking rules, ok? I need the handbook because even when I try my best, I am still in the gutter. And trying to explain the root of the matter gets mostly “you just want a handout!” “I had to pull myself up by the bootstraps, you do too!” “nothing is free” “be happy for what you do have!” Yes. YES. I GET IT. And I am. I can write an entire entry to explain my gratitude. Here are the things I am doing presently, which will hopefully sustain me until I’m back in my other state of limbo:
- I have tried to change the way I use social media. I skip my FB newsfeed and go right to groups and people I know don’t usually send me over the edge. I joined several support groups online and spend a lot of time trying to share my experiences in a positive way to those asking for such things. I created a FB group to post my pictures and moments of peace that I am able to find during this time. Because the best way for me to remember peace is possible is by sharing it when it happens, and being able to look back on it when I’m sinking. I’ve unfriended, snoozed, or blocked antagonistic people and those who I think just don’t get where I’m coming from. Usually after calmly stating my perspective and aiming for an open dialogue about the subject. If they continue to defend activities/inactivity that is in my opinion prolonging the situation we’re in or is just outright harmful, I cut ties. Not because I think I’m right and they’re wrong, but because they can’t even meet me part of the way in trying to understand where they’re coming from, they just fall back on “it’s not fair that X gets more paper than Y, Y worked for all of their other paper. X doesn’t deserve…” That’s about where they lose me. Their illusion that Y would get more paper if X gets less. No, honey. Z gets anything that X can’t have, not Y. Or especially the illusion that X is getting the actual same paper that Y worked for. Nope. X could be getting the paper that I worked for OR maybe X is getting the paper they actually worked for in the past and now they’re getting some of it back….Anyways. I don’t have friends in “real life” who aren’t open to conversations, so why should I try to foster online relationships without the same consideration? I don’t wish them ill or to end up with this virus or to lose the paper they worked so hard for. I just don’t need to associate closely with people who aren’t able to be open to even listening.
- I’ve tried to make “Can Do” lists instead of “To-Do” lists. There’s also a “Have to do” list. (Unfortunately, progress on all of these lists is mind numbingly slow. BUT! I mentally kick myself less for not completing Can Do items than I do for not completing To Do items. And since mental kicking also doesn’t seem to help me progress, any chance I can lessen the blows is one I’ll take…)
- I’ve been writing one on one to people more, in a more genuine way. Which is encouraging when they write back in a genuine way. I like to listen, to know people’s thoughts and how they’re really doing. It HAS been nice not having to engage in endless amounts of small talk when I’m not in the mood. But I also miss random chattering.
- All of this slowing down has left me with little choice but to closely observe my body and the shit show going on there. My only hope is that when I am able to get to all of the dr appointments that they can determine what the hell is going on when I present them with a 4,000 page dissertation on every issue I’ve got going on, lol. I sure as shit can’t sort any of it out.
Speaking of medical stuff. An update, for anyone still reading (kudos to you. I absolutely don’t have the attention span to read something of this length right now!!!). Internal medicine dr decided to go ahead with a tele-health consult regarding a scope instead of pushing it back another month or two, which will helpfully provide me some sense of how worried I should be about the constant burning/pain in my stomach, chunky acid reflux, nausea, and bowel issues. No idea if these are all related or just symptoms of other things. I don’t imagine they’ll go forward with a scope right now unless they decide things are that serious. Either way, I will either be one step farther from the Unknown or one step closer to an answer. The neurosurgeon has also decided to go ahead with the follow up MRI towards the end of April, but the face to face mtg with him afterwards has been moved to tele-health. They were going to reschedule it but apparently when the scheduler was clarifying that my symptoms hadn’t returned or gotten worse since I was in the hospital and I answered “Well. They’ve been the same. The only thing they did in the hospital was run tests and observe me…” she decided to NOT cancel it. So that’s…good. I wasn’t asking her to not cancel, I was just answering her afterthought question. So. Yeah, the constant headaches continue in varying degrees of severity. And the rheumotologist appointment hasn’t rescheduled yet, but it’s not til May so I imagine they’re busy rescheduling the current people and haven’t gotten to me yet. They may move it to tele-health, too, which would be better than nothing.
So. that’s about it for today….
And I’ve never tried to give my life meaning/ By demeaning youAni DiFranco, “32 Flavors”