Messages in a Bottle #8: The Right to Say “I’m Sorry”

animals_misunderstood
Image: Lyrics from The Animals “Don’t Let Me Be Misunderstood.” Full song playable on Youtube here.

On three separate occasions recently, I have found myself writing about apologies. I wrote about how my Partner always apologizes for hurting me in an argument – even when we have both said hurtful things – because he knows that wasn’t something I ever heard growing up. Then I wrote in another post how abusers never truly apologize. (Saying “I’m sorry you took it that way” doesn’t count!) Never receiving a true apology – even when I begged for anyone to understand just how badly I was hurting – is part of my personal abuse history. Heck, it’s part of my abuse present. I haven’t yet met an official from the 9th Circle of Hell who gives a damn about the hurt that has been done to my sibling and to those of us who have to deal with the guilt of not having been able to stop it. I’ve only met abusers, bullies, and officials who wanted to sweep the issue under the rug as quickly as possible.

But, there’s another side to talking about apologies that I haven’t written about until now. I haven’t written about how I was never allowed to truly apologize. I made mistakes as a kid – of course, I was a lonely, neurodiverse, traumatized kid – and I learned early on to respond to others using all my weak spots against me by trying to do the same to them before they could hurt me first. If someone had shown they’d go for my jugular, I tried to go for theirs first. (Spoiler alert: it’s actually virtually impossible to truly hurt those who are willing to do that to you, so it never did much good.) I’ve also said stupid, impulsive things just because I have ADHD, I’m hyperactive, and rejection sensitivity hurts like Hell. I’ve responded to my Partner like he was part of my past because arguing itself made me forget my present.

My current therapist would say that I didn’t really need to blame myself for the hurtful things I said to people who had a history of saying hurtful things to me, especially when there were rather large age differences and power dynamic differences. But, when I truly decided I did not want to recapitulate my own family dynamics in another generation, it felt like I had to at least try to reach out my hands. It felt like maybe the first one to show vulnerability could make the change. We were a family broken by The System, and, thus, maybe – since we hurt each other because outsiders had hurt us first – we could find our way to healing once we understood trauma dynamics.

Another spoiler alert: showing vulnerability just made going for my jugular easier. It just opened me up to another long list of all the ways I’d screwed up over the years – dating back to age 6 at least – and how all of my failings justified anything that “might” ever have happened to me. Maybe vulnerability might have worked with one family member who is no longer with us (or maybe not) – I’ll never know – but it didn’t work with one with whom I tried it.

I’ve never received a genuine apology while growing up, but I also was never given the chance to offer one, either. I wrote in a previous post about how I was upset and triggered by some things another blogger wrote about ADHD. It hit me in a lot of the “it’s okay to hurt you because you should be normal but aren’t and it’s your choice” abuse buttons. That blogger apologized. She broke the cycle. She saw that I was upset, and she cared enough to write. That really was enough for me.

I also know the legacy of my past is that – even if I try to no longer allow others to hold past mistakes for which I’ve attempted to make amends over me – I’ll hold mistakes over myself forever anyway.

I’ve written a lot about fighting internal stigma within the chronic physical, mental, or developmental illness communities, but I initially forgot to include the most important caveat when we do so:

It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. 

That’s ironic, given that the very earliest journal entry I ever wrote was about the right to be forgiven. It’s likely naive and dangerous to forgive those who hurt us intentionally – they’ll take it as permission to keep doing it – but it’s cruel not to forgive those who hurt us unintentionally. It risks making us into the voice of the bully-in-someone-else’s brain. I wrote in my earliest journal entry how I didn’t want to ever be that again. My subconscious thus thinks that I should post that earliest entry to make sure that I’m always truly keeping myself honest to advocating for calling out stigma in a way that opens arms, not closes fists, since I know too well how easy it is to wield a litany of past mistakes against yourself for years.

The Messages in a Bottle blog post below is the very first homework I ever completed in my leather-bound journal in my very first twelve-week CBT course at student mental health services. It is the earliest Messages in a Bottle I will ever post unless, by some miracle, I find something buried on Dropbox that has survived transfer across literally every external hard drive in every state in which I have ever lived.

The song is by The Animals. There are a couple of their songs that hold personal meaning for me. Maybe I’ll write about the others eventually, but, per my notes, this is the one I was listening to when I wrote this first entry that I have never actually shown anyone until now.

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Déjà Voodoo

Update: I also posted this in the comments, but then I remembered that smarter folks than I often skip the comments. The author of the original blog post that inspired this one contacted me. She has taken it down and apologized. She also seemed like she was still beating herself up over it even after I accepted that apology, so I want to state openly that she doesn’t need to. In talking to her, I’m reminded again that being non-neurotypical so often means communicating is terrifying and awkward and hard. It definitely still is for me, especially in person. We all make mistakes. We all struggle with what we mean to say not ending up being what we actually say. Character is in how we respond to our mistakes, and she showed she had character by caring when her post so severely triggered me. If (when – I have ADHD after all!) I ever upset someone with my writing, I hope my readers will tell me so I can have the chance to apologize, too.

That is something that none of the other déjà voodoo writers I have ever contacted about internal stigma – including Dysautonomia International, who puts that kind of stuff on main public pages – have ever done. I think it was very brave of her. I’m leaving this post up because I’ve seen a lot more than just one déjà voodoo post out there, and, to date, only one person has said: “I’m sorry.” There are a lot of folks who still need to see this post.

But, the author of the post that originally inspired this one is no longer counted as one of those people in my book. I genuinely wish her the best in her blogging tenure, and I hope others will too. Being non-neurotypical is rough. We both know it. It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. We risk becoming those emotional abusers who keep torturing people for their “mistakes” years later without ever giving them a way to move on. I’ve also been on the receiving end of that type of abuse, and I don’t wish it on anyone who cares enough reach out to me.

Do you ever experience blog post déjà voodoo? You know, where you’d think you’ve written about a topic so many times by now that you could cease having to keep writing about it? Where you’d think you could finally put a pin in it? Yet, somehow, the thing that upsets you so much just keeps creeping up, zombie-like, such that you can’t let it rest?

I owe my subconscious an apology. I mocked it a few days ago for being so far up on its soapbox that it wrote an entire novel in my dreams about the need for internal unity among those of us with chronic physical, mental or developmental disabilities. I laughed because I’d written multiple blog posts on the topic already, and shouldn’t that be enough?

I should have understood that my chronically traumatized brain is so obsessed with the topic because it knows firsthand from too many years of experience what my heart doesn’t quite know how to accept: people don’t change. People will always seek to protect themselves first by selling others out. Or, at least most will. So, I’ll probably be writing about why that doesn’t work and desperately trying to appeal to the better angels of the blogger community for the rest of my blogging days.

I read another déjà voodoo blog post just now. This time it wasn’t dysautonomia vs. anxiety or PTSD vs. “true” mental illness. In this one, the author felt that the only way to express how life-altering it is to have ASD was to compare it to how life-altering it isn’t to have ADHD. The only way to gain acceptance for one type of neurodiversity was at the expense of another. The author stated their opinion that ADHD – while technically a form of neurodiversity – barely qualified for the category because it was simply an “accessory” diagnosis that could be “practically nullified” by treatment. (Yes, those were their chosen words.)

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Blog Awards Series #4: Mamas, Don’t Let Your Blogs Grow Up to Be About Cowboys

Anyone who ever thinks that the ADHD brain can be turned off has never had to deal with one while blind for a week. The days of wearing an eye mask on doctor’s orders did help me get more sleep than normal. It’s logical to fall asleep when it’s dark all the time anyway, but that didn’t necessarily make that sleep any less, um, “active” than my waking thoughts.

I had some bizarre dreams during my enforced lack of vision. For instance, have you ever seen those megachurches along interstate highways in the Southwest or Midwest – or just in California, period! – that look like ranches and have testosterone-laden names like “GUTS Church,” “Cowboy Church,” or “VIVE Church?” They feature boxing matches, baptisms in stock tanks, and battle-ready women’s weekends? Well, my brain created one for the horses those cowboys rode in on! It was called the Whipped Church and was led by Rev. Tacky, who preached that if parishioners were obedient to the Triple Crown in this life they’d roam free – unbridled and unwhipped – in the next. It had a food court where you could literally make hay about your faith and even a bookie onsite. (The horses, too, needed to get in on the betting action to be able to afford their “suggested” church donations.) Of course, as in many megachurches, Rev. Tacky was also known to stirrup some political diatribes alongside the entertainment!

I first assumed I should be ashamed for admitting to such a rowdy dream itself, but my Partner discovered a show called BoJack Horseman on Netflix uses a similar premise – horses running Hollywood – to satirize current events. Rather than being ashamed that my brain is so far out there as to produce that dream, I should instead probably be ashamed that my dream wasn’t quite far enough out there. I managed to somehow subconsciously mind-meld with Will Arnett and Amy Sedaris without ever having so much as received a Netflix recommendation about their show. (I actually kind of wonder how Netflix hasn’t ever suggested it? What demographic profile don’t I fit? Will I have to subvert Netflix’s impression of me by watching the show just because?)

My brain also decided it needed to write a YA dystopian novel. Full-length, with eight named characters, a beginning, middle, climax and denouement. And, of course, because my life is ruled by trauma right now, it decided that YA novel needed main characters who were more realistically affected by mental illness and the impact of worldwide trauma – that’s what dystopia is, after all – than most dystopian fiction I’ve read. I’m pretty sure the dream was prompted by the fact that the first book on tape I listened to during my week of no vision was one of those progressive feminist novels (not YA at all) that was clearly very proud of itself for including characters that were neurodiverse, but whose characters hit me in the uncanny valley about their mental illness portrayal. I couldn’t figure out why the book unnerved me so much initially, but my Partner agreed with my assessment of it after listening for a bit. He’s becoming a connoisseur of the trauma experience himself, sadly.

My subconscious apparently felt the need to continue considering the problem and ultimately determined that the characters felt like DSM-V checklists of their supposed diagnoses rather than people. They displayed all of the symptoms on the diagnostic questionnaire, but with none of the messy bleed-over between diagnoses or unique expressions of those symptoms built upon their own personality that have characterized my experiences and most of what I’ve read from other bloggers. It felt like the author did a lot of research, but she had no lived experience to make her symptom portrayals convincing. My brain is still so stuck on its soapbox about how we further stigmatize ourselves within the mental illness community by claiming some diagnoses are worse than others or that a person is better off if they are “high-functioning” vs. “low-functioning” that it had to create an entire book in my brain about the impact of within-group stigma in a future world with even more inequitable and ineffective mental health care to further prove its point.

I’d roll my eyes at myself for being that preachy in my dreams – literally and satirically – but I had my first generic PTSD nightmare last night since the spate of randomness. Even an entire YA “novel” about a terrifying possible future is a refreshing change from a replay of my real past. I got to at least direct the terrible things happening to my characters instead of having to (re)live them myself as the captive actor. I’ll happily stay diligent about wearing my eye mask for an hour daily to rest my eyes – my neuro-ophthalmologist recommended it after reviewing guidelines for eye care with Ehlers-Danlos – if it will continue to bore my brain into re-deriving better comedians’ ideas or playing novel writing instead of endless nightmares. My brain has already demonstrated that it can write trauma from re-deriving my own story. Anything my brain creates that isn’t a variation on my own trauma is a treat.

That said, my answers to Mackenzie’s questions prove why, nightmares or not, I would rather trust my own brain to write my story than anyone else’s.

Today’s questions courtesy of Life with an Illness:

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Improv #10: Seven Things for Self-Care

*Knock knock*

“Who’s there?”

“Seven”

“Seven Who?”

“Seven Eleven…”

“Dude, you can’t fool me. I know there’s only seven of you. When I’m seeing eleven then maybe I’ll believe I’m as think as my friends drunk I am. Now bring me my black coffee and tylenol delivery stat!”

There’s an Improv game called Five Things that seems to be fairly universal. The basic gist is that you sing a little song and then ask the person next to you on the spot to come up with five (or seven, or eleven or whatever arbitrary number) of a certain category. It’s a warm-up game to get you thinking in odd ways.

It’s also a song that will lodge itself into your brain forever. If you don’t believe me, watch here. You get bonus points if you stay on beat and/or come up with wittier or more advanced versions for your answers. For instance, to start you might ask for five types of vegetables and only be able to think of “potatoes, carrots, peas, turnips, and celery.” Later on, you might get a little more inventive: “Mr. Potatohead, Veggie Tales, Carrot Top, The Jolly Green Giant and Sweet Pea.”

I do not seem to have self-care lodged in my brain in the same way. Between the double-vision fiasco, being mentally frozen in the 9th Circle of Hell and general ADHDness, I have been kind of terrible about my self-care this past month. (Don’t worry! No real alcohol or mind-altering substances were involved in my lack of self-care. Line games are just things that have also become permanently lodged my brain.)

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Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

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For Better or Worse

CW: Anonymity is so inconvenient sometimes. I can’t, for instance, tell you the actual state motto of the 9th Circle of Hell. “Abandon Hope, All Ye Who Enter Here,” while appropriate, is actually not nearly as morbidly satisfying as the true state motto. If I ever write a memoir of my experiences in Hell – or, better yet, find a way to channel its traumas into some kind of a black-comedy stand-up – the title will simply be the unadulterated state motto. Some things are just too darkly ironic in and of themselves to be able to be embellished by even the most skilled satirist.

That said, the aforementioned “Abandon Hope, All Ye Who Enter Here” is appropriate enough as a placeholder that any post I write about the 9th Circle of Hell from now until eternity probably warrants a content warning. Keep that in mind. This post is a darkly ironic reminder that trauma really does affect everyone, whether they grew up in Hell or married into the family.

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Frozen in Time

CW: Don’t read this if you are in any sort of a bad place. I’m physically safe. I’m mentally shattered. You don’t need to do anything. There’s nothing anyone can do anyway unless they had serious political connections. I am not a danger to myself or others. No, the danger, as always, is from others, and this post is more about trying to survive their latest devastation. This post is about how it feels like it’s getting harder and harder to try to survive. It just never ends. It’s a dark post – even though I promise I’m safe – so please read with caution. I’m the scant protection someone else has from the 9th Circle of Hell. I won’t ever abandon that responsibility to ease my own pain. I’ve been on the other end of that type of abandonment and still feel the hurt and weight of the responsibility it left me with. I will survive this and keep fighting as best I can. I just wish deeply right now that I didn’t have to.

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Messages in a Bottle #7.2: 525,600 Words

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 daylights, in sunsets, in midnights, in cups of coffee.

In inches, in miles, in laughter, in strife.

In 525,600 minutes – how do you measure a year in the life?

How about love? How about love? How about love? Measure in love. Seasons of

love.

525,600 minutes! 525,000 journeys to plan. 525,600 minutes – how can you measure

the life of a woman or man?

In truths that she learned, or in times that he cried. In bridges he burned, or

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.

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Blog Awards Series #3/Messages in a Bottle #7.1: 525,600 Moments of Blog Awards

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.

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Houston, We Have a Problem

Explaining_is_Hard

That problem is, apparently, that I sound like an astronaut communicating through a crinkly 1960s com unit from the Moon – while my space suit springs a slow leak and I rapidly lose oxygen.

Did I ever mention that social anxiety makes absolutely no sense? I may be a bit underconfident when I perform on stage, but I at least can speak in multiple sentences without choking, in either the figurative or the literal sense.

This is not the case with job interviews.

Despite the protracted visit to Hell this month, I did manage to get off a small batch of applications to potential data science positions. This is a reasonable accomplishment, as these applications, even outside of academia, are not short. There’s no simple “slightly modify your resume, change a paragraph of a cover letter” and go. Each one requires references up front, transcripts, lists of published papers, and other odds and ends to create a complete portfolio. Each one has its own specific hoops** to jump through. Some I have seen even want samples of publicly available code on GitHub! We don’t even really use resumes. It’s all C.V.s. Oh, and I’m pretty much mentally broken right now and my typical protective mental walls have been dangerously breached by all the workplace bullying and 9th Circle of Hell full-scale substantiated systemic abuse.

All of those lodestones aside, I was able to complete one stage 1 phone interview. One of the rare legitimate benefits of ADHD is that if you truly enjoy what you do – and I do, just not always the workplace culture that surrounds it – hyperfocus can be harnessed to your favor. You can, for instance, pull off reading everything a lab has published in the past five years, plus review what consulting gigs and patents have been pursued in tandem, the work of their external research partners, and even their potential security of grant and/or venture capital sources. (I’m pretty sure a big part of the systemic breakdown of the current workplace culture is ultimately funding-related self-protective offensive attacks. I’d like some indication I’d be with a more established, stable entity instead of out of the frying pan and into the fire.)

There was nothing about that organization I didn’t know, and I had really carefully thought-out answers for the standard interview questions and what my background could contribute. Those answers were even good!

I managed to answer with great content, but the rushed breathiness of someone who basically was fighting a potential panic attack the entire time. Have you ever noticed how sometimes you can’t take deep breaths to calm anxiety, even if you try? You get physically stuck in a kind of hyperventilation. If I had forced deeper breaths (I briefly experimented while on mute), I risked going into a sort of coughing/retching fit. Being somewhat rushed and breathy – but not dry heaving – seemed better.

So, that sucks. I’m pretty sure in the past I’ve sounded like I speak a mile a minute and likely talked over people (because ADHD), but I at least haven’t sounded like I exhaust myself with my talking. Now, I seem to have the “don’t overwhelm with too much content too quickly” more under control, yet I get no benefit because some form of anxiety + idiotic autonomic nervous system functioning literally starved my brain of oxygen while I spoke! Did I mention I wasn’t actually – at least so I thought – even that anxious? My anxiety over this interview was nothing compared to the traumatic meetings I’ve had recently with the 9th Circle of Hell. My answers were good. I felt confident in them. If I had managed to speak like someone breathing the air around her instead of from deep inside a malfunctioning space suit, I’d even have said I felt pretty confident I’d get a second interview. But, apparently, when giving interviews after a lifetime of Hell, the devil is still in the delivery.

Has anyone else had that experience? You actually feel confident in what you want to say, but your lungs seize up and you can barely draw the breath to say it anyway? Any tips? This is kind of a scary new expression of my anxiety. Everything about my stress responses lately have been new and scary.

** For anyone who is going to suggest that perhaps I could actually make good on my claims about using statistics for social justice by applying to an advocacy organization, I have bad news. 1) There really aren’t a lot of grass-roots mental health or chronic illness groups that employ data geeks. 2) I am, still, a data scientist not a computer engineer by training, so sys admin positions don’t quite fit. 3) The ones that do have openings seem to want you to have already worked in advocacy. I saw one that actually seemed cool, but they explicitly stated their technical staff need to be “camera ready” to give solo press conferences about findings. Because even the data staff need to be PR-savvy, I guess the socially anxious aren’t the target mental illness demographic for mental illness advocacy by default? I still like the idea, but it seems like breaking into the world of making the world a better place is surprisingly complicated?