Just a super quick update from my phone for anyone who doesn’t follow my Twitter: My house was part of the current flooding disaster taking place in Louisiana. Between 4-8 feet of water quickly enveloped our area early Saturday morning, August 13th, depending on the height of the ground. Despite getting multiple alerts sent to my phone in the previous days for other rivers, there were surprisingly zero alerts for my area. My neighbor woke us up just in time to save our outside dog from drowning, move the cars probably minutes before they went under, and get out before having to be part of the 30,000 people who needed rescued by boat and air. My house was highest up, so “only” 4-6 inches got in, but it was enough to cause major problems with my foundation, air vents, flooring, etc. My steps are gone.
For someone in my condition I know it is extremely important to avoid mold exposure. I’m currently in a hotel and will be for some time, perhaps a month while things are repaired. I will not be available for any online activity except for the short amount of time I spend updating Twitter, so consider this site (and most all forms of my online communication) on hiatus until further notice.
I am extremely, extremely lucky to have anything at all to return to: 40,000 homes were damaged or destroyed (so far), and in some parishes up to 75% of all homes suffered this fate. Only 15% of people affected had flood insurance because so much of this has happened outside of flood zones and despite what the news is telling people, flood insurance is cost prohibitive here due to what most consider price gouging.
I also didn’t lose much inside that I absolutely need, like my medical grade bed, refrigerator, etc. Most people affected by this disaster are in a shelter and have absolutely nothing to their name except the clothes they were rescued in, but will hopefully be moving to temporary housing soon while insurance and FEMA help them get back on their feet (like they’re doing for me and some of my family). It’s a real mess, a true disaster zone down here. No one is going to be talking about the flood of ’83 anymore. They’re going to be talking about this one.
If you want to help, please donate to the Red Cross. They are amazing, and can be trusted to put your funds to the best use possible.
In the past decade alone I’ve had to evacuate and stay for weeks/months in hotels at least four different times; at least one time, I lost my house. I’m really growing weary of southern Louisiana. I don’t think I want to do this any more, here.
Because of a pathological and unwanted sense of obligation to protect others’ public image, especially if it involved abusive and/or shameful behaviour, even more so if it was directed specifically at me. Because of decades of being made to feel that it was never their behaviour that was shameful but rather my speaking about it that was the problem. Because of decades of spiritual abuse that, also, mostly condemned those who spoke about wrongdoings instead of the wrong behaviours themselves. Because I was programmed to have emotional loyalty to people no matter how they acted or treated me. Because old habits die hard.
Reasons I absolutely AM writing this:
Because the very act of publishing this is an act of healing. Because the God I actually believe in supports those who speak the truth, not accuses them of being “unspiritual” if their truths make others uncomfortable. And because I can assure myself that no names or identifying characteristics will be mentioned, nor are they even remotely likely to ever read this.
So here’s something I’m actually excited to write about… Last month, or maybe the month before, I’m not sure but right before I returned to social media because I had healed enough to start responding to messages and e-mails once again… Some time ago, I faced my very worst fears in social media and relationships:
Someone not only misunderstood me, but thought the very worst of me, used my benign actions to justify their irrational belief that I was of ‘bad character,’ insinuated that I was being selfish with my time, and looked at things I’d written or shared on social media with an authentic energy and interpreted it instead as directly passive aggressive or malicious against them. Then they said what they thought they needed to say (I’m being generous, here), and blocked me everywhere, before getting to see the physical proof that they were actually 10000% wrong in their assumptions. Not a single conversation about what had been bothering them. Just accusation, character assassination, gone.
They took some of my worst fears, (1) that someone would use my words against me, (2) that I should never speak because people will just misinterpret it to mean something completely different and probably malevolent, (3) that someone would stalk things I did or said on social media to concoct a narrative in which they assume the worst of me, (4) that someone would guilt-trip me over the time I needed for self-care and (5) respond to it with accusations of selfishness and/or view it as an ill-conceived personal attack on them, and (6) that any or all of it would be used to justify abuse, character assassination, and/or emotional abandonment, and rolled it alllll into one. big. grand. gesture.
And guess what. I immediately recognized that it was completely unjustified.
I refused to accept blame for things I hadn’t done, because I knew none of it was true.
I didn’t go into hours, weeks, or months of self-abuse thinking I possibly deserved any of it.
And I survived.
Not only did I survive, but I even assertively stood up for myself (before they bailed, at least).
And, as a bonus, I didn’t move to contempt. Hurt over being thought of in such a way by someone I’d started to trust, yes; anger at being mistreated (a good sign for someone who’d always been punished for expressing anger), yes; disappointment and confusion, yes. But not contempt, not hatred, not a sudden need for self-protection by going on the offense, and no thoughts of “what a terrible person you are for doing all this.” They’re not. I know why they did what they did even if they don’t understand it, themselves. I’ve been a version of them in my past, believe it or not, when I didn’t know the true depths of my mental illness. And because I have compassion for the situations in my life that caused me to behave irrationally with others, I can have compassion for the situations in their life which caused them to do this. (Plus I lived with an infection for 7 years that reliably turned my brain chemistry upside down every 5-6 days. But anyway.)
As Elizabeth Gilbert wrote in Big Magic, about a woman who’d read her book and imagined a narrative within it that wasn’t actually written: “Their reaction doesn’t belong to you.” I’m only responsible for what I put out, not how it passes through others’ personal filters, for better or worse. I know now that I don’t have to allow those “worst fears” to have power over me anymore, because I know I will not only survive should it happen again, but that I have healed so much in at least this area, that I won’t be sent into a spiral of self-loathing, automatically assuming I deserved it. I can’t even explain the pit “old me” would’ve had to crawl out of in the past, the way it would’ve stirred up abandonment depression and sincere beliefs of “maybe I am everything they think.”
I’m making tremendous progress this year.
This isn’t even counting what happened at the beginning of the year, when I warned people about someone who had copied and posted my work but changed the words around to reflect their own story and history. Instead of any “thanks for letting us know,” and despite me sending them the link to my piece, I was met mostly with people incredulously claiming it wasn’t mine, and how dare I say such things. Ha! So part of my path this year seems to be learning to not be affected by blame or praise. But especially the blame.
“How equanimous are you when people express their views of liking or not liking what you do? Do you take it personally or understand they are simply expressing their own bias? Does praise or blame disturb your balance?”¹ “As the Buddha said, pleasure and pain, gain and loss, praise and blame, fame and disrepute constantly arise and pass away, beyond our control.” He said, “There is always blame in this world. If you say too much, some people will blame you. If you say a little bit, some people will blame you. If you say nothing at all, some people will blame you.”²
I think I’m doing pretty good so far. Don’t you think?
On second thought, don’t respond to that.
I cannot live my life letting fear of what someone might misinterpret decide what I do or don’t do, what I say or don’t say, what I share or don’t share. I’ve lived most of my life walking on eggshells for everyone else, and I’ll be damned if I’m going to spend the remainder of my life doing it, too.
Even now as I write and edit, I feel fear over what others will think about this. Maybe that won’t ever go away. But it doesn’t have to: I’m going to write, speak, share, and live, regardless.
I’m happy about all the progress I’ve made, even if it took something painful to help me realize it.
Takeaways for others, I hope:
I didn’t include this part of things, but make sure you’re not accusing someone of something that may actually be partly or entirely due to a technological glitch.
Don’t take your thoughts so seriously. Some meditation practices help us contemplate situations from the perspective of, “Do I really know this is what’s happening?” Much of the time, we truly don’t. This can help us find that place of spaciousness from which we can choose to respond instead of react out of past hurts or abuse.
If you have mental illness, try to remember your sick brain may colour your perspective of what’s going on. Although not everyone has the luxury of being able to find that spaciousness, not even myself, at all times; the key word is “try.”
Likewise, remember if someone has a disease affecting their brain, there’s very little chance it won’t also affect their thoughts, as well as the way they process information. Have compassion.
Above all, remember everyone is doing the best they can with what they have to work with, and for goodness sake, try to think the best of each other.
As you may have discerned by now if you’ve been witness to the longest unintentional hiatus this blog has ever undergone, my creative expression has been paralyzed lately. Not only due to the sheer mass of change, but the rate at which it’s taken place. That’s not the only reason by a long-shot, but it’s the quickest explanation I can give.
For the past several years, my posts have mostly read as a chronological account of everything I’ve experienced and how I’ve felt about it, generally accounted for as it happened. Up until recently, I didn’t realize the latter was actually a luxury, and one I could lose. Again, I’m circumventing a lot, but after a certain point that way of writing became impossible, because to write anything new first required procuring necessary back story; that itself became impossible, because I’ve been coping with unprecedented difficulties concerning processing and integration. How could I summarize for others what I was unable to decipher for myself?
There was also guilt involved. One post in particular I made last year was about finally experiencing an extended period of emotional stability after killing off the bartonella (infections). Yet fast forward and what came next were some of the most daunting and powerful months I’ve ever experienced, and they were anything but serene, anything but peaceful, with no stability, save for that quiet place inside my soul. I didn’t know how to magically jump from what I wrote before, to that, without any explanation in between. It was inconceivable. I was afraid my inability to appropriately narrate the explanation would make it seem like I’d just been avoiding my emotions until I could no longer keep up the denial and hit a brick wall. Which was not/is not true at all. Continue reading “This one is for you.”→
When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEMhelpsdistinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease.Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”→