Can we pause the de-struction to make way for con-struction? Can we consider “struction stories”?
The following are my words. My words are meant to be an explanation of my truths. My truths are constructed by my beliefs which are constructed by my interpretations of my experiences. My experiences as well as my perceptions are constructed by my identities. My identities include (not necessarily in a particular order): female gendered, lesbian, biracial, mentally ill and/or trauma survivor, advocate/helper, writer, photographer, welfare recipient, emotional empath.
I struggle with many of these identities. Some are placed on me, some are unchangeable, some I have embraced easily and others have had to embrace me until such time I could accept them. But I am fortunate. The majority of my identities can be hidden, masked or modified depending on the situation. Even my skin color. I was adopted and raised by caucasian parents, I attended relatively non-diverse educational institutions where I felt safe in most of my identities most of the time. I have a knack for piecing words together and a passion for bringing understanding to the misunderstood.
There is much that I do not understand- but much that I do. And as I watch cars burn in Pittsburgh- the closest thing to a city as I have claimed as “my own”- and buildings burn across America, my heart was conflicted- I have always believed that violence begets violence. But I have also always believed that there is more than one side to any story. As I watched only white people destroy the police car as people of color stood back and begged the rest to not record black men or women, my first reaction was “NO! Record everything so we can ALL see the truth!”
But a few days ago, we all watched the truth. We all watched one man kneel on another man’s neck. We all watched 4 people with training on the proper techniques of how to control another person physically do exactly the opposite of what you learn in training. Perhaps there is a time when brute force is necessary in order to keep others safe. That is a different What If and that is not the case here. This man was not resisting arrest. This man was not caught in the act of violence. This man was not even screaming obscenities or slurs. This man was calling for his mother. This man was begging for air.
There are others begging for air. Men and women screaming about having to wear masks that they perhaps don’t believe are any form of protection for themselves or others. That is a different scenario that I am enraged by, because of my experiences and beliefs. However right now, I’m focused on the multitudes out there who simply don’t have the whole story about masks, viruses, and transmission. And that’s ok, because most of us don’t have to figure out how to protect ourselves against such threats. We have relied on medical professionals, scientists, researchers, experts and professionals in specific fields to let us know how we can best stay safe. They are sometimes wrong. How often are they right? How many medications, treatments, surgeries and devices are life saving? Yes- pharmaceutical companies, businessmen and others with varying agendas muck up the system down the line. That’s not the *beginning* of the story, though. The beginning of the story is: there is healing to be done.
The beginning of the burning car story is this: there is healing to be done. We all live in the same time and the same place right now. And there is so much to be healed. These stories can weave together and separate and rejoin. I understand that sometimes healing one wound means another will be affected. I understand that exercising personal freedoms sometimes steps on the toes of another person’s personal freedoms. I absolutely do not understand, however, how edicts or rules or words on a disintegrating piece of paper & written in an absolutely different world- over 200 years ago?- are being used as an arguing point for today’s reality. Yes, when guns with the same capabilities as the ones around when the right to bear arms was invoked it made sense. When, in order to reach your perceived enemy you had to saddle your horse, take time to figure out where your enemy is, get there and hope they’re there, take a shot maybe two and hope they’re accurate, but if not, reload your weapon during which time your enemy may flee or advance with their own weapon, and then take another few shots. But now? When a single weapon can kill hundreds of people in minutes? When you can perceive whole crowds as your enemy, find out where they’re likely to be on social media, put a clip in your automatic weapon, and spray down 5, 10, 20, 60 people with basically a single trigger pull? How is that even the same situation to be applying the same rights to? People have changed. Weapons have changed. Society has changed. Anyone who is different is the enemy, no one cares about their story.
Well, I care. I’ve restrained enraged black teens. I’ve stayed silent while bigger, stronger white men (and women) in places of power put their knees in the wrong places. Used excessive voice. Verbally degraded and escalated the situation. I felt powerless. I thought moving up in power would give me more power to enforce policy and procedures. It did not. The more I spoke up, the more I realized I was still in the minority. The more I realized that sometimes, when people are given power, it makes them deaf to the start of the story. And I am not claiming innocence. I shoved washcloths over the mouths of teens spitting on me. I gripped harder than necessary out of anger and frustration and being caught up in the moment. I said angry and unnecessary things to youth who were doing nothing more than screaming out their stories in ways that they had learned. I am ashamed at my actions, at my inactions, and at my inability to affect change. I am proud that I used the opportunities to try and do better, to apologize, to listen closer and harder, to ask questions when I didn’t understand. It wasn’t enough. But it was what I was capable of at the time. Most of the updates I get on the kids are stories of their death or their parts in additional crimes.
I used to identify as a pacifist until I heard that Ghandi didn’t believe a woman should fight back against her attacker. And, if playing dead saved lives, I might agree. Andrea Gibson said “I believe in such a thing as a non-violent fist.” And as I watch people of all colors raise their right fists as they back away from the white boys destroying property, my heart says “Yes.” My brain was surprised when my heart agreed with a police station on fire. Who am I, that I am condoning violence?
I am a woman with hope in her heart that lighting bricks on fire while abstaining from causing physical harm to other human beings is the right decibel to be heard. To be heard by white people (why do I cringe when I write “white people”?) who, over the increasing threat of COVID and forced quarantines, have hopefully experienced just enough fear about the threat of death to relate to the struggle of those protesting the murder of George Floyd (and absolutely too many others.) Until your life consists only of trying to survive- of being trapped in a world where just going to the grocery store may end in sickness or death or causing another person’s sickness or death- can you appreciate how difficult it must be to spend years, decades, lifetimes living that way.
I don’t believe blame is helpful in this situation. But I believe knowledge is. I believe education about the origin story is instrumental in healing. Tolerance. Patience. Acceptance that actions done out of rage likely occur after a multitude of other actions have failed to be successful in getting the message across. An infant does not cry because it wants to be annoying. It cries because it needs something. Food. A feeling of security. Attention. Yes. Attention. People act out because they need attention and instead of giving them attention, we condemn them for daring to ask for it. We ignore the quiet shuffling in the corner. We brush off the gentle tugs at our sleeve. We get annoyed at the signs littering our spaces, so we prevent them from entering our spaces even if they have every reason to be there. They knock louder, we reply with pepper spray. They break windows. We bring guns. They turn to leave. We shoot them in their backs. We follow them to their spaces to tell them what awful people they are. We point to their deplorable spaces and blame them for staying in such an awful situation, all the while refusing to accept that our actions and inactions have contributed to all of it. Not to mention somehow simultaneously ignoring how unsuitable their spaces are for mental and physical health wne well being. Why do we blame mental illness for white murderers actions, but blame skin tone for non-white murderers actions? What’s the rest of the story?
It’s not my place to force you to listen to the professionals about best practices in the time of a pandemic. It is my place to voice my own needs and make sure my own health is maintained as I see fit. That may mean asking you to put on a mask or keep your distance. This might make you uncomfortable. Just like it makes me uncomfortable when my mother is in the hospital with an unidentified illness and is on PPE Precautions (which she usually is until they figure out what’s at the root of her illness that particular stay)…There is a sign on her door that most of us ignore that informs us we have to wear a mask, gloves, and gown if we wish to enter. But you know what? I ask, every time. I ask a nurse and I confirm with my mother to determine if I should put on the gear or not, because the consequences of not doing so affect my mother and the healthcare professionals caring for her and I respect their system.
Where has the respect gone? Yes. Masks are uncomfortable. Speaking about racial inequality, inequity, and injustice is uncomfortable. Holding my tongue is uncomfortable. Hearing my voice is uncomfortable. And yes, I’m prone to overdoing a lot of things- thinking, acting, reacting, analyzing, sharing, empathizing. Because the only thing more uncomfortable than being judged, labeled or ridiculed for doing those things is the consequence of ignorance.
May 30, 2020
The long and the short of it- at the end of this blog entry is a call for donors to renew my website. However I can’t in good faith ask for donations without clarifying that I am a month and a half behind on bills, have about 25 dollars in the bank, a paycheck of less than $150 coming on Friday and have no resolution in sight to my financial situation. It started long before Covid and I take full responsibility for the bulk of it, even though I didn’t start the ball rolling. I was doing well at making progress until December. The rest of this entry will be a ramble of why my mind wants my body to go to the woods and stay there until decomposition is complete. But I’d prefer if people didn’t take my emotional state in to consideration when providing financial assistance, lol.
Anyways. So this has been the worst and longest consecutive few days of awfulness since BQ. Which is ironic, because my mood and anxiety has been so roller-coastery for the last month that you’d think I’d welcome a few days of stable emotions. Except this is not a good place to hang out in. It’s too easy to get stuck and the path down is far easier than the path up and once I’m here, it’s extra difficult to not succumb to the path of least resistance.
Why am I being so vague? Why are people so vague when they talk about their own negative emotions? Personally I think I do it because I worry about my audience- you can never know if what you say will be a trigger or tipping point or what the consequence of either of those things will be. So. Trigger warning for heavy shit. Suicide, cutting, depression, anxiety, financial destitution, etc.
So, the last few days have been difficult. I started this month’s on-call rotation on Friday. I hadn’t had a call since my March rotation, right when things started to shut down and get serious in this state as far as social distancing and such. Last month’s on call was rough because there’s always some level of anxiety associated with it, but generally it’s reasonable. But this month, my anxiety as a whole is higher and the depression is more intense than it’s been since December/January. And Monday was mother’s day and I miss my mum fiercely but also the anxiety around traveling to visit her and the possibility of contracting or transmitting anything to her is…well, it seems appropriate to me, but it’s also a bit debilitating so that’s not good. I mean. Anxiety is a bigger problem when it prevents you from doing activities you want to do, right? But what anxiety keeps you from doing activities that are scientifically more dangerous for you than they might be to someone else? Is that good anxiety or bad?
So I’m slipping in to the Freeze stage. Where I’m aware of the depression, the anxiety, the maladaptive ways in which I’m trying to cope with them but don’t have the resources at my disposal that help me cope more effectively or healthily so I get overwhelmed at being stuck in between a rock and a hard place. Yet logic tells me if I keep wiggling, something will come loose and I’ll have more options. The trouble there is, those options don’t always turn out to the be the best ones. Like yesterday, I was at my house working in the basement, trying to get rid of some of the disgusting cardboard for Trash Day because it needs to be done and the deadline is coming up. And at the same time, was engaging in a comment thread that I simply should not have engaged in but I needed to speak my truth because for a change, I was 99% positive that MY truth was the more common reality in the matter I was discussing, and was not willing to let another person’s negative reality prevent my sharing of resources that may have been helpful to the primary population I was sharing it with. But. I let myself get too worked up about it when I was already in a fragile state and I stared at my options for about 2 minutes before choosing and using. I am not proud of using sharps again, but it was effective. It stopped the noise in my brain long enough for me to recognize the danger I was in (at that point, really only the danger of making more superficial cuts on my skin. But I know where that leads to eventually, and I know enough to know I need to stop it sooner rather than later.) So I was able to finish what I was doing and head back to safety. Safety, at that point, was nesting in bed with my dog under a pile of blankets listening to familiar music- but nothing too sad and nothing too happy. P!nk was the perfect pick. And after a bit, I was able to uncocoon and medicate and feel human again, for a bit.
The problem is, those moments of feeling human are starting to slip from the normal to the exception. If I’m not constantly vigilant about pushing thoughts of being done away, they are right there getting more urgent the longer I sit with them. And it’s not even about wanting to be dead. It’s about wanting to be nothing at all. “Heaven, that wasn’t what you were aiming for. You didn’t think the other side would be better. You thought the other side would be nothing at all. Imagine choosing nothing at all. Imagine hurting that bad…”
I recorded this video on April 28. 2018 when I saw Andrea perform in Ithaca, NY. It was general admission, no seats and we were standing in the second row, essentially. It was such an intense experience, to be so close to someone who spoke thoughts I could barely admit to having. To listen to someone speak my language without me having taught it to them. I was able to get their autograph and a photo with Andrea, and mumble out a rushed “thank you for helping me save my own life”.
I have been blessed with so many amazing teachers- somewhat ironically, a large proportion of them are not only teachers by calling but also are/were teachers by profession, too. And helpers. And combinations. But endlessly patient with my slow progress, my stumbles, trips, falls, and mistakes. And endlessly encouraging and proud of my every step forward, every small and large accomplishment.
I am grateful that, even despite having no fucking clue how my mortgage and bills are going to get paid again or caught up again…I am 100% confident I will always have a comfortable room, couch, attic space somewhere to sleep on and space to store as many of my meaningful possessions as possible. I will never go any hungrier than anyone else in my circle because I am loved and cared for, and I know this with my soul.
But that doesn’t ease the anxiety. I do not want to lose my house. Because, despite it not being the safest place for me *right now*, once the threat of covid decreases to me, my home will again be a safe and comforting space. And while I know there are other places that I can be physically safe anywhere if I take the appropriate measures, it’s more about psychological safety. My home is the first place I felt truly rooted since probably 2001. Don’t get me wrong, I love to travel and adventure. But I need someplace safe to come home to. And I don’t want to rely on other people to pay my bills or keep me fed. I want to be financially independent again. While also maintaining my mental health. These go hand in hand. The better able I am to meet my own needs, the better I do mentally. The worse I am doing financially, the worse my mental health. There’s a definite relationship. I have tried really hard to get them to break up and go their own ways. So far I’ve been wholly unsuccessful. And while it is necessary for me to ask for help, it comes at a pretty big cost to my psyche. Not because of needing the assistance, but because I can’t be self-reliant. And more than that, I can’t pay anyone back financially. Asking for a loan is different than asking for a grant. Getting a loan is different than getting a grant.
Ultimately, I’m exhausted. And agitated. And irritated. And terrified. And overwhelmed. And beyond grateful that I have a quarantine buddy who puts up with me (so far) even though I’m a huge drain of mental and physical resources.
And I can medicate and alleviate so much of that for a time. And for a change, my current meds actually help me improve my mental health rather than just mask the symptoms for a time. They allow me to sort through all of the shit without getting stuck on the minutia long enough to let it drag me too far under. And it reminds me what it feels like to feel relaxed. And calm. And not on guard. And my brain can wander without fear of landing in suicidal or self harming waters, because they create a sense of emotional safety that lets me explore my own brain and share those explorations with others, to a degree, in a way that’s really difficult for me to share when I’m not medicated. Unfortunately, the meds also impair my overall focus in a way that makes things like driving unsafe, and while it helps me maintain my survival, it would greatly impact my ability to maintain professional boundaries with clients, so I can’t medicate when I am on call. Which increases the anxiety because I get stuck in a loop of “my anxiety is increasing and I sometimes I can’t alleviate it without meds but I can’t take meds cuz then I can’t perform my job functions if I need to and then I’ll be worse off than I am now and….” and the catastrophizing continues until I find a way to stop it in its tracks. Which sometimes can only be done by medicating. Or cutting. But I reaaaaally have NO DESIRE to get back on that particular path.
On the other hand. I think back to a kiddo I worked with who I immediately felt a connection with. And a kiddo who reminded me- and continues to remind me- why I am called to speak so bluntly. This kid completed suicide, and the comments on facebook, etc ENRAGED ME. The pleas that followed for people struggling to “reach out!” and “ask for help!!!” Fuck that. This kid was basically SCREAMING for help. But no one was listening to us. But I listened to her. And she knew it. Her face would light up when she saw me walk down the hall (until anyone commented on her disposition, then the mask would clamp back down). And she would test the waters and tell me about her decision to be a satanist. My initial “non-reaction” threw her off enough that when I asked her what kinds of things a satanist believed in, she talked longer tgan she ever had to me. Her answers indicated that she basically had no idea what Satanism was, just that being forced in to believing so strongly in a God that, in her eyes, prevented her from doing the things that she loved was not working for her. Yes, part of it was just general rebellion at having to follow rules. But the rest was straight up crying out that being controlled by religion was not working out the way others wanted it to. And even if the rules and restrictions weren’t as strict as she described them…they were affecting her enough that she threatened to hurt herself because of it, and essentially demanded treatment. Which she was denied, because others felt she was “just trying to be manipulative” and “this is her pattern, she’s just trying to get her way…” Ok. And? How is that any different than adults in her life forcing her to believe what they believe to the point they can’t hear her pain? I was removed from her case because I guess I was advocating too strongly for her and her parents didn’t appreciate my professional opinion. Ok. Fine. But fuck anyone who focuses on manipulation while ignoring the reasons behind it. Fuck anyone who says that girl didn’t fight like hell for years to be heard, that she didn’t try to seek out people who spoke her language, that she didn’t try hard enough.
So I speak my truths for her. For Nevin who hung himself as his parents slept upstairs, but the newspapers claimed natural causes. For L who shot herself in the neighbor’s driveway after they dismissed her more times than she could withstand. For Amy, who sparked a movement but in the end wasn’t able to keep her own spark lit for whatever reasons.
Don’t misunderstand. Many, many, many people go to great lengths to keep their pain hidden. And in many cases, they kept their cries silent, hidden, bottled. Sometimes it really does come as a shock because the person was so careful at keeping up the facade and sometimes suicidal thoughts hit at the most unexpected time, catching you so off guard the plans are set to action before you really understand the consequence of your actions.
But sometimes, too, the nothing at all is the only relief from the pain we can fathom.
Especially when, one by one, all of our reliable coping mechanisms are stripped from us. Even if just temporarily. Depression, anxiety, mental health issues in general alter the passage of time. Have you ever been in a car accident, or narrowly avoided disaster? Or witnessed a disaster? The way time slows as your car slides toward the guardrail. The way you can see the deers eyes clearly for an eternity as your car careens towards it but your car is going 40mph and it all actually happens in seconds….that kind of how time is all the time for people. Inconsistent. Too slow, too fast, just right.
And, just to be crystal clear, the professionals in my life know where my head is at. I know what numbers to call and where to go if necessary. This is not my cry for help. It is my way of holding myself accountable and my way of trying to ease the intrusive thoughts enough to not give in to impulsivity.
And it is my way of reaching out to others who may not know how to open the conversation with people in their own lives. Blunt honesty does NOT work in all situations for all people. But know this- you can start the conversation with me. I may only be able to listen. And I may not always be in a place where listening is healthy for me. But I have been so fortunate to have people hear me, even when I didn’t say a word. And I would have long given up this fight if it weren’t for them.
That being said, this blog will soon disappear due to my wordpress renewal coming up in a few weeks and my lack of income. As I said, I can’t in good conscience ask anyone to fund my “hobbies” without disclosing how far behind I am on all of my other bills. We all have different definitions of “essential” and “responsible” and I will survive without a paid wordpress account. But I feel like at least this place can be useful to people other than me, so it’s easier to swallow my shame and beg for a finite amount of dollars for something like this, because it helps me feel like I’m at least paying back/forward something, even if it’s not money…
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”
*I started this on March 19, and haven’t really edited, so I’m just posting the draft, so I can start fresh with today’s thoughts…*
I have a lot of opinions and thoughts to share, but I don’t really feel like Facebook is the appropriate place to share them right now. Not because I don’t feel like they should be heard, but because it stresses me out when I come across what I feel is hurtful/dangerous ignorance, and compels me to explain my point of view to people who just basically aren’t going to hear it anyways because they’re too busy trying to convince me why I’m wrong. Let me state for the record that I have NO NEED to be right. I don’t WANT shit to be so chaotic that most of the world is experiencing what people with panic disorders and anxiety issues go through on a daily basis. Or people with financial stressors. Or people with health issues. Or people without a support network to rely on. But the fact of the matter is, regardless of your opinion on how the world got here or if it’s a conspiracy perpetrated by [fill in the blank] or being used for [fill in the blank] for some unknown purpose, here we are.
Here we are.
This morning, I was exchanging emails with the medical records department where I had some testing done years ago. Here is the exchange (haha…the original question was made on their website where it says “Please enter your question here” and I didn’t expect a human response, actually):
- Me: How can i obtain the mri images to provide to my doctor, who needs to compare with current mri?
- Med Records (MR): f your doctor is in our system, they can view them already. If not the doctor that wants to see these needs to obtain a signed release of information from you to release these films to that physician and fax that to Medical Records at 724-284-4532 and the films will be ordered and mailed to the physician’s office.
- Me: Ok, is there a way i can just obtain them myself? I’m having neurological issues and need to see a bunch of specialists, who prefer the records at the time of visit. Most of them are about 2 hrs away, so obtaining signatures and appropriate releases for each one is kind of a nightmare and also impossible to do prior to my actual visits. Thanks, Holly
- MR: Right now we are a lock down at the hospital. Contact Radiology 724-284-4065 order the CD and you will have to make a time for me to bring this to your car to sign the release and see photo ID.
- Me: Ok, thank you! (I also appreciate the quick response. Stay safe.)
- MR: You are welcome thanks for being kind.
That’s it. The smallest act of kindness can go SUCH a far way. No, I’m NOT pleasant 100% of the time. And, right or wrong, my closest friends and family experience the brunt of my attitude or irritation. I can easily apologize to them…I am more familiar with their life circumstances at any given time and what they’re going through than I am of the cashier at a busy Dollar General or the person at WalMart who has to scan my basket as I leave. Or, in this case, of the people who are still providing me services and answers as best as they can despite the uncertainty of the state of the world right now. Maybe it’s because I can relate. I’m still on call and still “have” to provide in-person service if there is no other solution. Turns out I work in an “essential” field… I say “have to” because, ultimately, I have total power over whether I stay at a job or leave it. But realistically, if I want to stay in my house, keep my pets, have transportation that enables me to work what little I do, keep the utilities from being shut off, and buy necessary hygiene products…then I have to obviously have income. I am SO FORTUNATE because I know if push comes to shove, I have people who would provide me or my animals shelter, make sure I get to where I need to go, and have the essentials. I know this because I’ve lived it. I’ve lived rent-free in a crawl space above a garage. I’ve survived on friends’ cooking when I couldn’t afford food and didn’t qualify for food stamps. I’ve spent weeks in the psych ward knowing my pets were safe and cared for in my absence and come home to a stocked fridge/freezer. I’ve had friends who paid for my car to get fixed when I simply couldn’t and it was unsafe to drive. I’ve had friends send me money when they knew I was struggling and friends who offered to pay for my dinner because they knew I needed socialization but couldn’t afford to eat out. ALL OF THIS without me ever asking. When I actually ASK for help? I have NO DOUBT that my support system will support me.
I am BEYOND grateful and fortunate that I happen to have friends with financial resources that they can share. I started to ask myself…”why should they?” because for a long time, I didn’t feel like I deserved the help I was receiving. But. I’ve worked hard and steady since I was 15. I NEVER had unmanageable debt until I went back to school in order to try and get a degree in a more financially stable career (nursing)- so I’d be better able to pay my bills and not depend on others as much. And, beyond that…my friends, I assume, help me financially because they KNOW I would do anything possible to repay them if I could with cash money. But all I can offer, often, is myself…is kindness and patience, odd jobs (haha. Bat Catcher Extraordinaire and feeder of reptiles and rodents are two that come to mind first, lol) It helps that I enjoy doing these things, but if asked, I’d try to help with whatever I thought I was capable of.
So my question changed from “why should they help?” to “why should they HAVE to?” Once I was unemployed for 3 months because I quit a job that I was failing horribly at due to my own issues. Once I took a planned, scheduled week off to go to Arizona as a vacation. I’ve taken several emergency mental health breaks, which were basically me trying to avoid another hospitalization. And I’ve been inpatient 4 times, never less than 12 days. Otherwise I’ve been some combination of full time employment and/or school. Often this involved more than 1 job at a time, to make ends meet.
I’ve been pulling my bootstraps up since forever. And who the hell knows, maybe I’ve been doing it wrong. But you know what? My hands are still bloody and unusable from my efforts. And my usual course of action is keep trying until I absolutely can’t work anymore, force myself to take a roadtrip or voluntary hospitalization in order to avoid taking drastic measures to quell the pain and keep fighting the suicidal thoughts that never seemed to go fully away for so long no matter what medications I was on or what support I had. Then I get back up, go back to my job or find a new one and push on for a for more years or months. That’s what I know I’m supposed to do, that is what is expected of me as a “contributing member of society.” And you know what? I LIKE working. Having a purpose keeps me going. I always have been and I always will be a helper. I don’t want to stop working. And yet…right now, the pressure to perform is more than I can handle. Do I put a lot of that pressure on myself? Yep. But also, maintaining even a basic standard of living is really impossible on 23 or 24,000/yr. My brain can’t handle the jobs that will keep me fed at this time. And my body’s not doing so great at handling anything at this point. But on paper, I’m really employable. So I’m fully expecting to get denied Social Security, return to full time employment, and hang myself with my fucking bootstraps. It’s the American Way.
And this is absolutely not a plea for help. It is a plea that once/if the dust settles. that the people who are newly terrified about how to survive without being able to work will remember what that terror feels like. That the people who are newly terrified about being unable to get healthcare if/when they need it remember that fear once they’ve recovered. That the people who impede progress towards more equality for EVERYONE realize that when it comes down to it, we’re all more alike than different- that EVERYONE deserves a chance at more than killing themselves to survive.
Writing has been on my mind, but life and mood has had other plans. I think part of me has been afraid to open this window because I don’t have a clear idea of where I want a blog entry to go. However, this weekend was rather eventful and I’d like to have it documented for my sake in more than a FB post, so…you’re welcome?
As always, art update first: I have a piece in the local Women’s Art Show in the cafe uptown. Of course in my usual style, I was late to get anything together, but got in in under the wire despite a great deal of technical difficulty. I ended up printing black and white and am pretty happy with the results, even though I didn’t even have time to mat it….
I’ve STILL been rearranging and fixing up my art room. I finally have my collages back on the wall and I moved shelving from the basement to the closet so I can better organize all of my ‘re-purposed’ frames…Then I decided to take out the closet shelves, too, for more room. I’m pleased with the results because I can easily see and mostly easily access the frames without having to take out stacks to get to the ones I want.
Here is the “final” rendition of the art room, with my collages back on the wall in a more intentional fashion, and my mantel finished. I am in love with this space, and enjoy immensely just sitting and looking out of the window or at the walls.
Of course, the rest of the house is still not up to standards, but it’s getting there bit by bit. It’s been so nice to be able to deep clean and organize at my pace- to have the time and energy and emotional fortitude to keep working at things. In general, I’m far less overwhelmed with life in general and the depression is staying in a manageable zone, although the anxiety is out of pocket at many times throughout the day. It’s been increasingly present lately, but when I’m able to medicate it stays at a reasonable level, thankfully.
So. This weekend though? Ok, so, I’ve been struggling with headaches again, as well as joint/muscle aches and pains & swelling in my hands and feet (loosely diagnosed as possibly fibromyalgia just as an initial stab in the dark) and gastro issues (most likely related to an ulcer). Then on Friday, my left eye started getting really red and by Saturday was just completely bloodshot (although not painful until after I removed my contacts). Also, I was experiencing bouts of dizziness and just was feeling totally overwhelmed with all of these symptoms hitting all at once, but I didn’t want to go to the ER because nothing was especially worse than it has been, just happening all at once. So I contacted my doctor’s office after hours line, and my PCP just happened to be on call over the weekend! That was a lucky bit of…luck. She recommended that I go to the ER, which I did.
So, I got there around 5pm and they did a CT scan and diagnosed me with cystic neoplasm of the brain and he was worried about the placement of the things on the scan, so he insisted I be transferred to Shadyside hospital in Pittsburgh so their neurosurgeon could better diagnose. Several hours later, the ambulance arrived (because he wouldn’t let Pam drive me, which in retrospect was a good thing due to how long things took even being a direct admit to Shadyside ER). We got there around 4am and hung out in an ER bay for a few hours to finally be admitted upstairs around 6am. They did another CT scan as well as bloodwork and an MRI without and with contrast. Eventually, the neurosurgeons came in and was like “let me sit down…” at which point my stomach dropped. He explained that the MRI showed a mass pretty deep in my brain but, unlike 99% of the cases, he was unable to determine what it was from the scan. Like, at all. He was perplexed and seemed really interested by the mystery of it (yay me?). He sat and talked with me for quite some time, and seemed to be listening closely as I babbled about all of my current symptoms and previous issues (such as the MRI I had in 2017ish for headaches that showed a cyst thing that my neurologist wasn’t concerned about at the time…). Basically, he wants me to follow up with a neurologist and an ophthalmologist as well as obtain all of my previous pertinent records and then get another MRI in a month. Then he wants me to come to the clinic at Shadyside so my case can be further explored.
I also met with the oncology team who seemed relatively certain that whatever it is is benign, because the scans showed no other masses in my chest or abdomen. So, that’s good news. I’m not totally confident they can make that accurate of a determination about something that can’t be identified in the first place, but whatevs. So, getting discharged was a clusterfuck. We asked after the neurosurgeons said I was clear from his vantage to go, but were told the primary team had to be the ones to discharge me. So after meeting with the oncologist, I thought I was good to go. Turns out it was just a Physician’s Assistant and I had to meet with the Primary of the Primary team. Ok. A few more hours and she shows up and clears me. Time passes. I patter out to the nurses station and my nurse is totally unaware that I’d been seen or given the go-ahead to be discharged. Eeesh. We finally left around 430pm and got home around 6. I hadn’t eaten a real meal since 6pm on Friday night, and had only had some oatmeal on Sunday morning after I was admitted. I had gotten in some cat naps and dozing, but Pam had been awake just about the whole time from Saturday morning to Sunday evening! It was a long few days. I crashed hard about an hour after we got home, and today was much better. The weather was spectacular and I spend the day with my pup outside gardening.
Yesterday was also my birthday. I’m now 41, which is super weird. Emotionally, I have experienced some of the highest highs and lowest lows in the last 2 years. If my life were a statistical chart, the median would be be higher than it has ever been. But the highs and lows are pretty drastic. This could be because I’m no longer under the numbness of depression constantly, which allows for feeling all of the other emotions. So the fluctuation may be perfectly normal, just not something I’ve experienced in a long, long time. Physically…well. That’s been basically a shit show. Today was awesome- I had energy and the weather was perfect, and I spent hours doing yard work. But already, my body is screaming its dissent about my activity level. My hips, which I’ve never had an issue with before this past year, feel like I shoved metal stakes in at all angles when I move. My elbows hurt. My elbows. Seriously?? It’s very frustrating and hard to explain because the response I seem to get most often is a rolling of eyes and telling me I just need to move more and get back in shape. Well. Right. But it feels like trying to learn how to walk on a prosthetic before the stump has even begun to heal. There might be a way, but I don’t know it and I don’t feel, with all of the other issues going on, that I have the willpower to begin such an endeavor.
That being said, while I am not happy to find out I have masses in my brain…there is some validation. To be listened to by doctors and professionals. I struggle a great deal with believing my symptoms, even physical ones, are real unless other people can see them. I will literally be crying in pain from a migraine while berating myself for not getting more done or working harder. I’m a little bit ridiculous sometimes, although have gotten better at trusting that what I’m feeling is real and needing less outside validation to believe my own brain. It’s a very weird place to be, my mind. And no one can ever be in anyone else’s mind, so who’s to say if my experience is typical or atypical, truly. I am enjoying becoming more confident in my truths as I feel them to be and I am eternally grateful to the people in my life who have supported and continue to support me through all of my highs, lows, sane, “crazy”, and in between times as I work towards some sense of stability.
Perhaps one day my blog posts will be more focused and informative, instead of rambling and round-abouty.
Today is not that day. 🙂
Some updates, then on to some ramblings!
On the Art Front, I’ve been cleaning and reorganizing my art room (again, haha) and have found a great set up (although may turn the table to face the window, as that would add even more to the flow of the room…) and so have been doing a lot more scrap-booking and crafting.
I’ve started to update and redo the website for the art gallery. I was not interested in doing it and tried to decline the offer several times, but eventually caved. I continued to regret my decision until I met with a board member and we seem to have a similar vision and idea of how to get there. The main way being ditching the current design program and going with one that actually allows for so much more customization. I was going to try and make do using the old format, but holy heck, it’s like asking a photographer to capture a scene and then handing them 3 crayons and a napkin. Sure, a picture will be made…but it could be so much better with access to different tools! Since we decided to try and go with a different platform, I’ve been really enjoying creating something from the ground up, but basing it on the old site. Hopefully it’ll be ready to roll out in the not too distant future.
I’ve also been taking some pictures and have a lot of ideas for my own website that I hope to get working on soon. And I’ve been seriously deep cleaning my house and organizing which has been really wonderful. Of course. I have time for all of this now because I’m essentially unemployed. I’ve finished orientation, shadowing/training, and have had my first “solo” on call shift with the new job and now I’m not on call until the beginning of March. The decrease in anxiety from not working full time is palpable. It returns with a lot of force the weeks that I am working, but I’m trying to keep going because bills don’t care about anxiety. I’ve gotten re-enrolled in SNAP and MAWD (food stamps and health insurance) through the state. Thank goodness I ended up with a great caseworker, because the whole process can be really awful otherwise.
In light of going through the “welfare” process again, I’ve been thinking a lot about how we (I) assign value, worth, legitimacy and meaning to things. “Things” probably being my own thoughts, feelings, and experiences. Having to ask for assistance can be a degrading process, depending on who you’re asking, and it can really make you question your own worth. I have always been one to (over)analyze actions- why people do what they do or why they don’t do other things. I’m fascinated by reality- which is often how we determine our worth. The probability and perception of truly shared realities also captivates me. The possibility that even when people think they are sharing a reality, one can never know because it all depends on words and definitions, which are things we created in the first place. I was not at all impressed or surprised by the whole “gold/blue dress” phenomena because I’ve never believed people perceive things the same. We just don’t usually communicate specifically enough to realize the differences. Because if we did, we’d all probably drive ourselves over the edge. Paying attention to the tiny minutia of everything tends to be generally unhealthy for me because it’s different than being aware or being mindful. I’ve found that it often leads to a sort of paranoia that everything you thought you knew is not what you thought it was. There was a Calvin & Hobbes cartoon that kind of touched on this, where he was thrust in to an alternate reality where he could perceive perspectives other than his own….
Seeing multiple perspectives is helpful but in my experience can at times also be a hindrance. It is easier for me to make a decision the fewer factors that are involved because I have a great deal of difficulty assigning higher worth to some factors than others because I’m afraid I’m just not aware of all of the reasons why something is a factor in the first place! Of course, being aware of all/multiple perspectives has been super useful for many of my careers because I was working with people who were generally not in the best of situations. Being able to keep in mind that the people I worked with have their own perception of their reality (or reality in general) really helps me to approach them with less judgement and helped me avoid unknowingly stereotyping or lumping them based on my own experience or with others experiencing similar circumstances. Now, if only I could apply this way of looking at people to myself, I’d be golden, haha… (I’m getting better at it, at times!)
Ultimately, when considering people, I refuse to believe that outcomes will be identical even if circumstances are identical. We are more than mathematical equations. But, we are also somewhat programmed to compare/contrast things and then assign value based on the results. This is useful in many, many circumstances IF we are able to be open minded to the idea that “value” is also relative and dependent on one’s perception of reality… I mean, don’t get me wrong- I’m not saying that I feel that even people who ascribe to Nazism are justified in their harmful or extreme actions because of their perception of reality. That’s not it at all. I personally do believe there are core things that are “right” and “wrong”. I AM saying that I often question what makes MY idea of right and wrong any better than someone else’s, because I base my actions on my own fundamental values. I happen to value honesty, pursuing knowledge in many various forms, doing good for the sake of helping people not for any specific reward, personal autonomy that doesn’t infringe on other sentient beings, advocating appropriately for those who may need it, and as they say: “above all else, do no harm.”
And while I think these values make me a good person, I don’t think they make me better than others who may not share the same values. I worked for 5 years with teens in the juvenile justice system. Some would punch you in the face without much thought if they thought you were looking at them wrong. And while I worked to educate them that there were ways to deal with things that didn’t involve violence, I accepted that they were mostly a product of their particular environments and that their flying fists had nothing to do with who I was as an individual. They valued survival and came from a place where pausing to consider why a person was stepping up to them or pointing a gun at them would likely not end well for them. Making fully informed decisions is a luxury that people in survival mode/situations don’t always have access to. All I could do in that job was give them the tools I was supposed to, with my personal spin, and send them on their way- usually back to the same environment where they came from where many of those tools would be more a hindrance than a help. But I don’t view myself as having more value or worth. I do like to think I would make different choices- not because I think they are the “right” choices, but because they would align more closely with what I value. Or, if I do feel my choices are the most reasonable and useful options, I at least try really hard to remember that I’m making decisions based on all of the information that I have access to, and that others don’t have the same exact data to work from.
Meta-cognition is a really slippery slope for me and more often than not, leads to an increase of cognitive dissonance rather than a decrease. That’s why I write so much and try to be as detailed as possible in my descriptions of things. My last therapist once told me she had never worked with anyone who used so many metaphors. And it’s not that I lack the ability to be concrete, it’s that I really strive to be understood and to me, that means trying to explain my experiences by relating them in a way I perceive others are more familiar with. I mean. I also really, really love words. So. Sometimes a dangerous (or at least lengthy) combination!!
In other news….The other day, I posted this on my FB:
Perhaps I’m the only one sad about an early spring, but winter has always been my favourite season. And as I was sitting watching the birds outside of my window, I was struck by the absolute beauty of male cardinals against the backdrop of fluffy white snow. Then I was struck by finding instant beauty in a red bird, as red has traditionally been a color that causes me anxiety for various reasons.
As I sat pondering, I found myself thinking about cardinals being considered a sign from those who’ve passed, and the connection that red was Mel’s fave color slipped in place, and the moment was peaceful. And I let it be peaceful.
On the days that I struggle (with her death and everything else I’ve been struggling with), the battle is just as fierce and intense as ever. But there are in-between times and days now, times where I find myself able to catch the next breath instead of holding it in preparation for whatever shoe is about to drop. I acknowledge that the next shoe might be a steel toed boot. But that it also might just be a flip flop.
Being able to breathe really is a wonderful thing.
Almost immediately after posting that, I was hit with a wall of guilt because I realized I had gone quite a while without being solely focused on the grief her death threw at me. And then I was hit with feeling a little bit proud of myself because I realized I hadn’t specifically been avoiding this particular event and everything associated with it as I have historically done with most traumatic/difficult experiences in my life.
I’m traditionally been an all-or-nothing person in terms of emotions in that I either stifle them to the point of not feeling anything, or I am disproportionately consumed by their intensity. I believe the biggest thing I gained from ECT was a greater ability for emotional regulation. Not in the sense that before I had no control over my emotions and now I magically do, but rather there is a definite difference in the flow of my thoughts. Before, my thought process was basically like an always-overflowed creek and the banks of my brain were full of stuck thoughts- some good, some bad but all just caught up in each other and it was impossible to try and dislodge one without all of the rest either tangling more or being rushed off downstream. Finding sure footing was usually unlikely, and any attempts at progress often ended with me drowning under the water. It was exhausting, trying to hold on to the necessary thoughts and not be dragged under by the rest. But one of the first beneficial differences that I noticed from the treatment was a decrease in the speed and volume of the creek. So now, yes there are bad days when I lose my footing or there are so many intense thoughts that some things are bound to get stuck but mostly the flow of thoughts is way less chaotic and less prone to filling the banks with detritus. It is amazing, refreshing, and life changing to to be able to navigate my own brain in this new way. Some days I still end up drowning, but because the flow isn’t as quick, I find I’m able to regain my footing quicker.
Unfortunately, my writing is still pretty stream of consciousness- sorry (but not really!) The other day, my friend reminded me of The Diary of Obscure Sorrows. We listened to a TED Talk by the creator and it was wonderful to hear someone express what I often felt and thought about words and emotions.
John Koenig, Words & Emotions:
I could write pages on the subject of words but, I’ll leave you to explore his stuff for yourself, because hopefully you’ll find words that give you a similar sense of connection. Ultimately, that’s the whole point to me- connection.
So, New Year, New Me, right? No. Not accurate, for me. New year, yes. And certainly I’m not planning to stay stagnant (quite the opposite), but that doesn’t necessarily indicate a whole new me. I’ll just be modifying the same me that I already am.
There are many reasons that I haven’t written in months. 1 is a lack of a working laptop. That has been remedied. Another reason is the multitude of deaths that have occurred in the past few months. A lovely friend and ex-coworker succumbed to an illness she had been battling for a long, long time. A few days later, one of my clients completed suicide. We had met for a few hours just 4 days before. Then I had to have Bella put to sleep right before Christmas and the day after, my brother passed away. In and around all that, my work performance declined again. (Not to mention my general productiveness as a normal human being). I came to the conclusion that despite loving my job and doing exactly what my heart wanted to be doing, there were aspects that I just couldn’t reconcile. Things out of my control to change on my own, and I don’t feel anyone was willing to even think about entertaining the idea of making it a point of contention with the higher ups. Because, ultimately, it might just be something no one can change, because insurance companies and payees are giant douche canoes. But, my point is, I was no longer able to handle the stress and anxiety that came along with trying to conform my ethics to make my numbers work. Don’t worry if that makes no sense- the details are not essential to the plot! Of course, my mental health played a role, too. It’s really, really difficult to do the job that I was doing while trying to surf my own ocean of grief. Which wasn’t fair to my clients, but also wasn’t fair to me. And I tried really, really hard this year to get my mental health to an acceptable level of functioning, and the last few weeks of work I could feel all of that progress circling the drain…
So. 2020 finds me trying to process the loss of 2 beloved critters, 2 immediate family members (not to mention several non-immediate family members), several friends and acquaintances, and 2 former clients (both of whom completed suicide). Not to mention having to say goodbye to all of my clients from my last job. Now I have no steady income, I’m back in the welfare line so to speak, and I just came home from funeral services for my brother. It all feels very surreal
But there’s a flip side. 2019 brought the strengthening of many new and amazing, wonderful, supportive friendships- some of which may not have occurred if tragedy/trauma/grief hadn’t struck with such force.
It brought the opportunity for ECT treatments, which I truly believe added a buoyancy that my life was severely lacking and increased/enabled my ability to keep my head above water despite the near constant tsunamis I’ve been experiencing. Let’s face it, a year ago- had I suffered the same losses in such a short amount of time- or even spread out over a longer amount of time- I would’ve ended up hospitalized again, best case scenario. So. There’s no doubt I’m in a more stable place than I’ve ever been. However, just cuz I’m steady on my feet doesn’t mean the ground under me isn’t still buckling and breaking apart, let’s be clear about that. My grip is still pretty tenuous on many days.
2019 also brought the realization that doing what I love career-wise doesn’t necessarily mean I’m able to maintain a healthy work-life balance, unfortunately. It brought a lot of realizations, actually, both professionally and personally. I’ll spare the details but suffice to say sometimes even when we win, we lose.
But. The show must go on. I have so much more to write, but if I try to fit it all here, I will never publish this. Hopefully I will be able to accomplish all that I want to over the next few days/weeks and will then have time, tools, and energy to write more. I’m also toying with the idea of redesigning my website, since I need to update most of it at this point anyhow. Suggestions, topics, constructive criticism always welcome of course!
Well. One week to go with the ECT treatments, so maybe it’s about time I finally write the entry I’ve been meaning to write for ages?!
But first, some good news: I’m feeling somewhat confident that they have been helpful! By which I mean, I feel lighter. My boots aren’t as heavy. I’m not being shadowed by a dark cloud. It doesn’t feel like the ocean is living in my throat, tsunamis and all. And a multitude of other metaphors!
Am I anxious? Well. Yes. I’m honestly a little terrified to return to work. But it’s a fear that makes sense. I’ll have been off more than a month and a LOT can change in my field in that time. Not necessarily in the field, but with all of the individuals that I work with. Hell, a lot happens in the course of a day that can be hugely impactful on their lives. So. It’s an explainable nervousness. And I need to get a new car (by “new”, I mean “different” of course. I will never buy a brand new car again. What a waste of money…) Plus my laptop is dying a slow death and will probably need to be replaced in the next few months. My phone, also, seems to be crapping the bed. So, while I’ve managed to get/keep my finances into a more stable shape, I certainly don’t have any extra to drop on a car, laptop, phone or anything, really.
Other good things: September’s “First Friday” event at the gallery where my work is displayed honored the New Artists- of which I am one! It was the first 1st Friday I’ve attended and I was kind of in the spotlight with 3 other artists. I am not at all used to being in the limelight. Yes, I was a theatre kid but….TECH theatre! Darkness and shadows, that was my place!! And that’s just how I wanted it to be!! But the event at the gallery was fun (another sign the ECT has had an effect….in general, even when I want to participate in such events, they are still very difficult to get through mentally. But I did ok- even when I was informed the videographer was going to Facebook Live and interviewing me!!
Other Good Artsy Things: After a year of searching to no avail for some sort of storage solution for the mat board I inherited from Hil last year, I ended up with two suitable pieces of furniture and a ton of new-to-me mat board in the span of 3 days! And it was all super affordable! First, a local department store is closing and on a whim, after PK’s sister reminded us, we decided to go see if they had any fixtures for sale. They did! It seems to be what they stored their signage in and it is near perfect for my needs. The only issue was that full sheets of mat board would hang out a few inches on each side, but it was good enough!! So, PK’s son and grandson agreed to help us move it. PK decided to take the screws out to see if we could fit it in my car in pieces only to discover it was glued together quite solidly! So we put the screws back in and they heave hoed it into his truck. PK and I had taken several of the doors off the hinges at my house and removed the door stop strips from the art room door. Still, it was questionable right up to the end as to whether or not it would fit! It did!! I spent the evening finally sorting all of my mat board.
At some point, on another whim, I decided to search Craig’s List for anyone trying to sell more mat board, now that I finally had a place to store it. I happened upon a lady having an estate sale and getting rid of framing and embroidery stuff. I called and talked with her. The price was reasonable- for mat board, a mat board table that fit full sheets, AND some random framing stuff. The problem was, she lived quite far away and I’m still not allowed to drive. Also, I needed someone with a car big enough to be able to transport all of the mat board AND the table! (Another place where the shift in my brain is apparent…at this point- or before- I would’ve given up because I didn’t want to be an imposition. But I called Jenn and imposed! And she was able to pick me up and head over that evening. AND assisted in carrying a million loads of mat board and table pieces up a flight of stairs and through a relatively large house, and then helped me bring it all in to my house the next morning! It was not easy work, and she is a champ!!!
I spent the next day or two moving furniture, rearranging, and sorting, again, and being amazed at my luck and fortune. Just to get a random idea of what I had stumbled in to, I measured the amount of board and then counted how many pieces fit in an inch, then did some figuring. Although decent board costs more than $10 a sheet, I just used that as an easy figure. All told, I estimated that I walked away with at least $900 worth of materials (and realistically, probably closer to $1200 or more, since I got a table storage unit, too, and those are like, $700 alone- on the cheaper end- plus some random frames, too…) Trust me, I paid a fraction of that. A fraction of a fraction. I’m still in shock at the awesome deal. And Carol, the seller, was SO nice and helpful. She kept giving me little tips and tricks and hints. And. OMG. My excitement swelled over the next few days as I sorted and discovered, truly, how awesome I made out….the colors, textures, variety….and sheer AMOUNT. Not all full sheets, of course, and tons of scraps. But totally useful for me, since I can pick and choose how big or small I print things! It’s been super difficult to focus on things other than arting! I just want to start printing and matting and creating!
Alas, other duties are also pressing….such as pulling up the last layer of carpet upstairs and scraping up the backing that was glued to the floor.
Well, the above part of this entry was written a week ago on September 9th. I got side tracked and never finished, so instead of ditching it and starting over, I’ll just continue from here….
I had my last ECT treatment today. This is good and also terrifying. Mostly because the last few days have been really difficult, emotionally. I’m feeling more than a little overwhelmed with all that still needs to be done before I return to work next week, as well as the impending lack of car situation. Not to mention, next week somehow marks a year since MM died. That’s been hitting especially hard. All of this combined has me worried that the ECT hasn’t worked as well as I thought it had. But. I guess if I were to compare how I likely would’ve handled all of this last month, a few months ago, last year, a few years ago…I’m still managing better than I probably would have. Life is hard, that won’t change. I never expected it to. I just need to try to hold on to the feeling of wanting to keep going even when the going gets tough.
Also, I will admittedly miss some of the people at WPIC, where I had the treatments done. I am SO BEYOND IMPRESSED with my experience there. From start to finish, there was only one “major” issue, with one of the lab techs due to some inaccurate coding and even then- ladies from a totally different department went out of their way to get the issue solved for me ASAP. Without me even asking, and without making me feel like I was imposing on their entire day. I’ve spent a considerable amount of time dealing with medical and mental health facilities- for myself, my mum, my clients over the years- and I can honestly say, I’ve never had a more pleasant experience. Everyone, from the nurses to the techs to the security guards, was just…nice. Amicable. Friendly. Patient. Kind. No one made me feel like I was imposing on them just for trying to obtain services or get questions answered (a rarity in many places, at least in my dealings with doctors, hospitals, facilities, etc.) And more than that, the general attitude of the employees was just positive. Anyone who knows me knows I am an observer. I notice things. I pay attention to details. It wasn’t just that the staff was kind to the patients, but they also were respectful and kind with each other. Perhaps not all of the time, perhaps not when they were out of my view or hearing, but the general aura was just calm and courteous. Even when they were “bitching” about other coworkers or departments to each other (mostly out of range, usually) they still dropped in GOOD things to counter balance whatever they were griping about!! I was just really impressed. There were patients who were in much more severe states than I, who were probably more difficult to manage but still….I witnessed them being met with patience and civility. It can be easy to just go about your duties and still get your job done without being mean or abrasive or anything…to go through the motions without too much effort. For instance, several other people receiving treatment appeared pretty much catatonic- non verbal, non responsive. But even they were met with cheerful greetings and inquiries about how they were doing, and asked permission before things were done even though they didn’t have the where-with-all to necessarily give it, and had the processes explained to them even though they very well may not have even been able to hear it. It made me happy that they were still treated like the humans that they are and not just shoved through on an assembly line like some places do with such clientele. And, even when patients who weren’t necessarily of sound mind voiced concerns or refused…their treatment was put on hold until someone spoke to them (several someones!) to, I assume, make further determinations about things. But despite having consents on their charts (cuz they clarified and made note of having them every time), they weren’t forced to have the treatment. It just all appeared to be so very humane. I mean, honestly, it appeared to be what mental health treatment (and medical treatment in general) SHOULD be, but so often isn’t.
I guess my point is…because of the staff, I came through it all feeling respected, heard, and non-stigmatized. And perhaps I am lauding them so much because this has not been my general or common experience when dealing with the mental health field as either a client or service provider. I’m just in awe at how well I, and everyone I witnessed around me, was being treated. (I’m a little angry, too, because this should be the norm not the exception…) Anyhow. I would 10/10 recommend WPIC for all of your ECT needs!
In other art news, but also ECT related…last year I was so unwell that I didn’t even enter the annual art show that takes place during the fall festival here. That was the first time in probably more than 5 years I hadn’t entered. Even when I do enter, it’s generally a rushed, last minute, scrambling to get things in on time ordeal. This year? I entered my form early enough to get the early bird lower entry fee AND my pieces are printed, matted and framed. They’re not due to be turned in until Saturday. That’s 5 days, and all that’s left to do is put paper backing on them, install eye hooks and attach wire!
Which reminds me, I ALSO managed to remember to that I had a coupon for Michael’s and today I got a tape dispenser gun and the stuff I’ll use for paper backing ALL for half the price of the dispenser alone. Bit by bit….
I’ll leave you with some photos of some of the other things that’ve been occupying my time lately….