This CW is so important it should be in neon flashing lights. This is a serious post. Serious like: mentions of 9th Circle of Hell current systemic abuse, mentions of the same kind of systemic abuse on another blog, and mentions of past suicidal feelings and coercive control. I really meant it when I said the lights were off this month, so please please be careful when reading this blog post. There is no date on this “past” post because it’s not truly a post written in the past. It’s a memory, from a time when I would never have written anything down, that has been bothering me. I think I need to write to exorcize that old ghost and thus fight my new demons more effectively. Be safe.
Written at some point prior in May 2018, intended for 5-26-18, my one-year blogiversary. The intro to this post (including why it is so delayed) is here.
525,600 minutes, 525,000 moments so dear.
525,600 minutes – how do you measure, measure a year?
In 525,600 minutes – how do you measure a year in the life?
the way that she died. (don’t worry, not a tw, despite what the lyric might suggest!)
It’s time now to sing out, though the story never ends
Let’s celebrate remember a year in the life of friends
I had to perform that song as a pledge event for my sorority in college. Pledging unending sisterhood or some such. Does it surprise anyone that I joined a sorority? Honestly, it kind of surprises me, too. I’m also kind of surprised I didn’t fall over while attempting to vaguely “dance.” Undiagnosed Ehlers-Danlos Syndrome explains a lot in hindsight about why I got kicked out of ballet class (and soccer) and hidden away in the back where no one could see me for that college initiation “performance.” But, rush was a thing that was a fairly big event even at my geeky college. I did it as something to do to fit in in a new place, and I was sufficiently mystified when offered a bid that I accepted it partly on some vague grounds of “leadership activities look good for grad school” and partly some deeper, “you mean there might be a school where I’m actually vaguely acceptable for who I am?” I am a very forward planner and easily flattered by simply not being rejected.
Today’s Questions are courtesy of Ease the Ride. They are both the hardest questions and the easiest questions to answer of all the blog awards, because there are really only three of them, and I had previously written a blogiversary post that, in theory, should have answered all of them. It was the post I intended to post for my one-year blog anniversary. I never posted it, so now it has become a blog award. The questions are as follows:
1) Write a paragraph of something positive about yourself
2) Briefly tell the story of your blog
3) Give two pieces of advice to new bloggers.
From what I can tell, we briefly hit temperatures that were literally hotter than (the 9th Circle of) Hell this week. And, just as the Northeast might get a break from the insane heat wave that is gripping most of the country – for two days at least – I might be leaving it for another roundtrip to Hell. Argh. The 9th Circle of Hell additionally lives up its name by having always been unlivable in the summertime for someone growing up with undiagnosed Ehlers-Danlos Syndrome and the dysautonomia that likes to hitchhike.
I recently(ish) read two separate blog posts (by Narcoleptic Aspie and Crafts, Chronic Illness and Adulting) about how bizarre trying to use a Fitbit or another fitness tracker is for someone with a condition that includes autonomic nervous system dysfunction. Lavender from two years ago completely agrees with that sentiment.
I also discovered this random “journal” entry – not even written in my usual locked leather-bound journal because I was simply too out-of-it to hand-write anything – floating around in the flotsam and jetsam of my personal Dropbox.
The date of syncing of the post was late-July 2016, though given that my text notes sync to Dropbox only when I use wifi, not data, on my phone, the note itself could have been written on my phone anytime within a few weeks of that date. Out of curiosity, I went back and looked at my phone to see what Samsung Health recorded as my low heart rate at around 5:30am in July 2016. (Yes, this does mean my phone is over two years old, for anyone asking. I drop it constantly I’m not going to replace it every time a new model comes out just to shatter another screen!) I suspect this entry corresponds to a heart rate of 46 on July 12th, 2016. My recorded high for that month (156) also seems to have come at a time I marked myself as “at rest.”
It’s strange to think that if, on that date, I’d considered that I actually did have those extremes of heart rate while simply sitting inside in the A/C – and that it was my body, not my technology, that was broken – I might have been diagnosed at least a year earlier. But, of course, I assumed the technology just wasn’t that reliable. (Also, would that I could go back in time to a moment when the world wasn’t ending right now, as was the case two years ago! You know it’s a Messages in a Bottle when it contains that line. The world most certainly isn’t okay in “right now, right now“!)
CW: Discussions of systematic abuse of various types.
This post has a much longer introduction here that explains why I am posting it today. Read that first if you want the full backstory (or forward story as the case may be). I won’t give the original date of this journal article. I’m already quoting almost verbatim the headline I found when I looked up the new hospital system I’d been referred to for outpatient treatment for ADHD in the new state I once hoped would be better than the one I grew up in. If I dated the journal article, I’d probably be sued for libel for mentioning it without having been a direct victim. I’m sure that hospital employs an army of lawyers to keep that article well buried, especially when referenced by families not directly involved. I wasn’t directly involved – in that abuse case, at least. I’ve been involved in others. I’ve been the family member speaking out against systemic abuse, and I’ve been threatened with libel for daring to speak the truth. It shouldn’t be libel when it’s true – but, hey, that this is the world we live in and the country we live in.
Go ahead and look up the article that I found in the city papers after just moving to a new city that led me to write the journal article below. You’ll find it. You will also – if you dig far enough to find that one – find dozens of others that are similar from other states. You’ll find enough that maybe you will wonder which article was the one referenced in this journal article. You’ll find enough that maybe you’ll take it a step further and wonder which of those articles is the one written about my original trauma. I welcome you to figure it out if you can, but I know what’s in print. I know that my little corner of the journalism world is buried behind a whole lot more recent stories of abuse. Stop and think about that for a bit. Then read this very meta post about a girl who was in one of those stories in the paper years and years ago later moving to a place she hoped would be better, but only finding in her new city paper another one of those stories of abuse, now written about the clinic she had just been referred to for her own care. Read her writing about her attempts to process a world in which this keeps happening and the therapist who was assigned to help her deal with it was part of the system itself. Then process that it never stopped happening for her even this week – and that’s why there is a whole separate post’s worth of introduction to this meta-post in addition to the post she apparently felt she needed to write just now. Is that a big enough picture for readers to believe that her trauma was real and that action needs to be taken to stop it from happening to others?
CW: Discussions of systematic abuse of various types.
This week has not been a good week. I’ve said before that I’m a primary caregiver (along with another family member who still resides in the state) of someone who needs full-time 24/7 medical, disability and mental health care beyond what is possible for us to provide at home. I’ve said before that one of the organizations licensed to provide such care was demonstrably abusive to my family member, and that we received no justice when we fought the state to try to close that organization even with all of our carefully gathered evidence. That organization is still open, still providing services to others, and that thought never leaves my nightmares.We removed my family member from that particular situation, but we didn’t change the system.
Over the years, other organizations that have been licensed providers in that region have been found to be abusive, too. The same state services that should have been protecting society’s most vulnerable have shielded the providers more than then they have ever shielded their patients. They have dolled out only slaps on the wrist, but slaps on the wrist don’t change anything. In rare instances, organizations have closed. (I’ll leave to your imagination what had to have been found for that to happen given what we discovered that didn’t lead to closure.) But, in most instances, they haven’t. I grew up with an acute awareness of just how common this kind of abuse is, how unlikely anyone is to help, and with further ramifications of the toll of that early exposure to trauma that then happened to me in other ways because the nature of early exposure to trauma is that it begets further situations that cause trauma for any person who grew up with it.
I fled from that state as soon as I could, and at one point I was naive enough to believe things would be better in other states. I then discovered decade-plus waiting lists for disability services in other states, and, quite frankly, that the abusive situations I hoped were unique to the Red State I grew up in happened in the Blue States, too. I am still on the list to try and re-establish services in the state I currently live in, but this Messages in a Bottle is both a current story of something that happened in the Red State I call the 9th Circle of Hell this week and a past story that happened in the Blue State in which I currently reside.
This post was originally dated 12/28/17. It chronicles a stretch of the 54 and the 55 – unpaved but “real” roads reasonably far off of Iceland’s Ring Road – as well as part of the Ring Road once we finally found our way back onto it heading North from Snæfellsnes to Hvammstangi. It was written from our little cabin at about midnight after we’d gotten in about an hour earlier. For those at home who are keeping score, the sun sets in Iceland in winter at about 4pm. So, we had been driving one-lane dirt roads along a fjord well after dark. The road conditions were “icy” with “blowing snow.” But, they weren’t yet a blizzard. That would happen later in our trip! Thank heavens our little cabin had a self check-in, as checking in with limited check-in hours might have been interesting. If you read my last Iceland post, you learned that the west of Iceland completely shuts down over Christmas and Boxing Day. It does open back up afterward, but there aren’t many restroom break opportunities along even the Ring Road, and many of the N1 stations that claim to be open those days are in towns off the Ring Road – or they close down about 2pm. This makes pit stops complicated. I have no photos of the moonlit fjord or the crazy drive because I’m a chicken, but I include some photos from the next two days at the end.
I feel like I should offer some post hoc commentary on this blog post, but maybe next time. I think I’ve mentioned before that one of the most frustrating aspects of any form of chronic illness seems to be that we also become extra vulnerable to any acute illnesses that are going around. The two do not not play nice together, and there are currently a lot of acute illnesses “going around.” In the week and a half since I’ve been back to work, I’ve gotten sick with two separate strains of crumminess that are going around the office and have dealt with a “flare” (or whatever you call an uptick in symptoms of dysautonomia) in tandem with both. This three-day weekend is being spent in bed.
This post was written on 12/27/17 in Northern Iceland, after grocery stores had re-opened, we’d had a full meal cooked in our little cabin and we had seen the Northern Lights for what would end up being the only time the entire trip, because we later ran into a blizzard!
So, most places I have visited over Christmas are either “multicultural” (read: opportunistically capitalist) enough, don’t celebrate Christmas/Boxing Day as national holidays or are otherwise open for tourists on Christmas Eve, Christmas Day and Boxing Day. Iceland isn’t.
Now, we knew this. We knew that we should either book a reservation at a high-end restaurant (the only ones likely to be open) before the trip – before the restaurant sold out – or plan to hit the local grocery store (our more affordable option) before about noon on Christmas Eve to stock up. We planned to stock up on Christmas Eve and drive to the Snæfellsnes Peninsula on Christmas Day, check-in to our hotel with its electronic self-check code, and use its kitchenette to make ourselves food while we explored the area on our own. We planned to avoid the lack of options by simply cooking like we always do. You know what they say about the best-laid plans…
Journaling just for myself has never felt like self-care. The bully-in-my-brain sees it as indulgent and self-justifying, and it has never felt satisfying to write anything creative that only my eyes would see. Plus, I find ways to hate anything creative that I write. I’m a much harsher critic than the Internet. I gave up officially journaling for therapy after my first-ever 12-week course of CBT. Student Mental Health Services shoved me into standard short-term CBT way back during my PhD because it was easier for them than their therapists digging deeper to discover that my classic anxiety and depression were side effects of less-common ADHD and C-PTSD.
I gave up CBT after that first generic catch-all course in favor of more somatic-based therapies, which I researched for myself. However, because I really did have ADHD even when undiagnosed, I initially threw myself into CBT with hyperfocus intensity for those original twelve weeks. I didn’t often share my answers fully with my therapist, but I at least answered them honestly for myself. My immersion included buying an expensive, leather-bound journal to use to fill out the homework. I filled out about half of the two-hundred-page journal between homework and attempts at personal journaling. I never knew what to do with that journal, because it contained personal thoughts that, for a while, brought me shame. I couldn’t throw it out, and I couldn’t figure out what else I could write in it that could go thematically with answers to therapy questions about my past that I never even showed that CBT student therapist. I just kept it with me.