Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Writer’s Workshop: If I Could Change One Thing About Myself

Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It

The Wait Is Over…

Today, V.J.’s Weekly Challenge is all about waiting. It’s an interesting topic, considering that, as I said before, it’s been twelve years this week since I embarked on my journey to finding the right care. The wait is over. On June 4, exactly five months ago today, I was granted long-term care funding. I moved into the care facility on September 23.

It was an extremely long wait. Twelve years is roughly fifteen percent of a person’s lifetime, and they covered almost my entire adult life so far. In other words, I spent most of my adult life waiting. And now it’s over.

And yet, I don’t feel the sense of relief I was sort of expecting to feel. I, after all, hadn’t put my life on hold while waiting for this magical moment. I’m glad I didn’t, as that would’ve meant I didn’t have a husband now. You see, originally, when he told me he was in love with me in January of 2008, I planned on waiting to reciprocate his love until I’d moved into supported housing. I’m glad I didn’t wait.

And yet, my life did seem on hold in other areas for all of these years. I was always in a waiting position at least on some deep, emotional level. And now I can stop waiting and start living. I hope.

Then again, can I truly let go of that paralyzing feeling of apprehension that I’ve carried with me all this time? I still feel like I’m in waiting mode. Hibernation. This long-term care placement still feels temporary to me. Then again, well, guess what, life is temporary. I’d rather get a grip on it than spend the next so many years waiting for some magical miracle that won’t ever happen to make me feel all good.

Lately, I’m constantly reminded of a comment one of my fellow patients on the locked psychiatric unit made in those early days of my hospitalization. I can change my environment all I want, but I’m still me and I need to look to change myself instead.

Tomorrow, I’ll have a review with the behavior specialist and my home and day activities staff. I already discussed with my home staff wanting to get more out of my day than I do now. I came up with the idea of taking my Braille display and external keyboard with me to day activities, so that I can do more stuff on my iPhone than simple dice games and texting. I did this today and unfortunately felt immediately overwhelmed when I tried to read a blog post while a fellow client was making noise playing with macaroni. That almost made me give up and retreat into hibernation mode again. I hope I won’t give up though.

#IWSG: Writing Without Reading?

IWSG

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) day. This months’ optional question is about your thoughts re whether reading is required for writing.

In August, I did a good amount of both reading and writing. In September, my reading went almost entirely out the window and I also wrote far less than I intended. However, I still managed to write at least one blog post each week.

To answer the question, for fiction writing, I think reading is essential. Of course, this means your writing is a mixture of your own ideas and someone else’s, but a good fiction writer (which I’m not) can write imaginatively enough to appeal to readers looking for an original viewpoint. My own fiction writing has always bordered on plagiarism, if it wasn’t actually plagiarism.

For non-fiction, I tend to think that original viewpoints are good, but they require some level of familiarity. I have read blogs where the author’s words were so jumbled that I couldn’t make sense of them. I also happen to love personal essays or blog posts I can relate to.

I for one love both reading and writing prompted pieces. I like to read about other people’s original perspecctives on a common theme. For this, reading is essential for writing. Even so, I don’t tend to read others’ responses to prompts I participate in before posting my own. So well, there are two sides to this story and the truth is probably somewhere in the middle.

31 Days of Prompted Ponderings Landing Page

Okay, so I’ve not written nearly as much over the past few weeks as I’d wanted to. For this reason, I’m not sure whether the challenge I’m embarking on will be a success. Last year, I joined #Write31Days but didn’t finish. The challenge was discontinued this year, but Kate Motaung has done achallenge-within-the-challenge for years of doing 31 days od five-minute freewrites. I won’t do those, as sticking to five minutes once I’ve started writing is too hard. However, I will use the daily prompt words to hopefully inspire me to write everyday in October.

This is the landing page or table of contents for the challenge. In previous years, keeping my landing page updated was as much of a challenge as writing everyday, so we’ll see how this goes.

Anyway, I won’t have a theme for my challenge. I’m not even sure I’ll be able to use the prompts as main focus of my posts, but we’ll see. Enjoy!

Tanka: Identity

Identity is
Knowing who you are and where
You’re going in life
What direction you’re headed
Without much doubting yourself

This is my first attempt at poetry in a long while. It’s supposed to be a tanka. A tanka is a form of Japanese poetry related to haiku. It consists of five non-rhyming lines of five, seven, five, seven and seven syllables. I am pretty sure there are other rules, but this is the simple definition. I wrote it for Mindlovemisery’s Menagerie’s Saturday Mix. I was inspired to choose the topic by today’s Daily Addictions word prompt, which is “Identity”.

I Was Taught to Believe…

That, if I didn’t have my parents’ support, I had no-one’s and I would never get anyone’s support. “You are socially inept,” my mother said, “and you got it from us.”

This exchange happened in late April of 2006, when I had just been kicked out of my parents’ house. Not that I still lived with them, and not that I was ever planning on doing so again, but my parents made it very clear that they would no longer support me. I don’t even mean financially, but practically and emotionally.

What had I done to deserve this? I had told them I was delaying going to university one more year. I wasn’t giving up on it. I was still going to meet their expectations of me that I become a university student, grad student, Ph.D., professor, you name it.

And then I didn’t. In the fall of 2007, while attending the university I had originally been meant to go to in 2006, I gradually fell apart and was ultimately admitted to the psychiatric hospital. Though I was discharged in 2017, I never went back to university.

Though my parents and I are still in limited contact, I know I don’t genuinely have their support. Not emotionally. I mean, I see them twice a year, talk to them on the phone about once a month and get €1000 at the end of the year to spend on new technology mostly. I don’t know whether this will remain the same when I go into long-term care (or when they find out about it). And I’m not sure whether I care. They aren’t the type to stop talking to me at funerals or the like and I don’t really need their money or birthday presents or phone chatter, though they’re nice. I won’t go no contact, but if they decide to abandon me, that’s their choice.

Because, though I was taught that without my parents, I had no-one, this isn’t true. I met my husband in the fall of 2007. You know, the fall that was supposed to be the start of my academic career and ended up being the catalyst to my getting a life of my own. My husband supported me through the psychiatric hospital years. He supports me through the years we live together. I trust that he’ll support me through the coming years when I’m in long-term care. I may be socially inept, but that doesn’t mean no-one will support me. Love me even.

This post was written for V’J.’s Weekly Challenge. V.J. challenges us to think about the untrue things we were led to believe as children or in other dysfunctional relationships.

Working On Us Prompt: If Disordered Eating Isn’t About Food or Weight

Today, I am once again joining in with the Working On Us Prompt. I hope the link works, as it once again gave me an error 404 when I tried to visit it. There are really two question prompts for this week’s Working On Us. I may post a separate post about the second question. The first asks what if eating disorders aren’t about food or weight? What are they about?

As a person with disordered eating tendencies, I can totally empathize with this question. I mean, yes, I am obese, but that in itself doesn’t qualify you for help with disordered eating other than a monthly kick in the ass from a dietitian. Well, that just isn’t enough for me.

Then again, I was told by my psychiatrist that I do not have an eating disorder, because the amount of food I eat during a “binge” isn’t big enough. Well, I understand. That doesn’t mean I don’t struggle with my relationship with food or weight.

Because that is really what disordered eating is all about: the relationship we have to food and our bodies. It isn’t about how much you eat, how much you weigh, or how often you exercise. It’s about the thoughts that go on in your mind.

For clarity’s sake: at the time that I was told I do not have an eating disorder, I was in the early stages of recovery from purging, which in itself does warrant an eating disorder not otherwise specified diagnosis. I was never fully bulimic, but I was coming close. That’s not my point though.

I struggle a lot with disordered thoughts about food and my weight. In fact, I think about food the majority of the time and those thoughts are not usually healthy.

Once, when I read a book about someone with an eating disorder, her psychiatrist suspected she was an alcoholic too. She administered a simple screening tool, which asked whether the girl had tried to cut back on alcohol, was getting annoyed or angry when people commented on her drinking, ever had alcohol first thing in the morning, and then there was another question. She answered “Yes” to three out of four questions. Well, I can answer yes to the three I remembered here when substituting alcohol with food. I occasionally overeat first thing in the morning, have very regularly and unsuccessfully tried to control my food intake, and I do get angry like all the freakin’ time when someone makes a comment about my food-related habits.

Yes, I knnow that to the outside observer, I appear like just an unmotivated, overindulgent fatass. What they don’t see are the inner battles I fight each and every day to deal with my disordered eating tendencies.

Working On Us Prompt: Stigma

For the fourth time, Rebecca of Beckie’s Mental Mess hosted the Working On Us prompt last Wednesday. I didn’t get to participate before and I really wasn’t sure I could make it this week. After all, I couldn’t load the post at first and then it was my birthday yesterday, so I was occupied all day.

The topic of this week’s prompt is stigma. I forgot the exact wording of the questions, but I’m just going to use the opportunity to ramble.

In 2013, I was diagnosed with borderline personality disorder. This is, as many sufferers will know, a highly stigmatized diagnosis. Borderlines are thought of as manipulative, unfaithful, volatile, generally awful.

It wasn’t like I wanted this diagnosis. I didn’t feel I fit the criteria. I mean, I had at the time been in a relationship for over five years and it wouldn’t cross my mind to cheat. I wasn’t particularly attention-seeking either. I didn’t go around manipulating my therapist into offering me more and more support and threatening to kill myself if she didn’t.

Yet these are stereotypes. I do have a really unstable sense of self. I do have a lot of rapidly shifting emotions. I do fear abandonment. I do self-harm. I do dissociate and suffer with stress-related paranoia.

I must add here that my diagnosis of BPD replaced DID and PTSD, which generally get a lot more sympathy. The reason my diagnosis got changed, is that my therapist went along with a DID peer support group leader’s opinion that I had imagined my dissociative symptoms.

Years later, my BPD diagnosis got downgraded to BPD traits, but I got an additional diagnosis of dependent personality disorder. DPD is characterized by an inability to stick up for oneself, passiveness and clinginess. I don’t think I meet the criteria at all. The reason I got labeled with DPD is because I thought I neeeded long-term supported housing and my psychologist thought I didn’t. She told my mother-in-law upon my discharge from the mental hospital that I can stick up for myself really well. She said that the DSM diagnosis that comes closest when a patient suffers institutionalization, is DPD. Well, there is a difference between a dependent dynamic and a dependent person.

The same goes for all personality disorders: they describe patients, not dynamics. A person with a personality disorder may be more likely to engage in a certain dynamic, but the disorder isn’t the same as that dynamic. This is the reason narcissistic abuse really isn’t a thing. Yes, people with NPD are more likely to be abusers than those without NPD, but abuse is a dynamic, whereas NPD is something affecting the patient. Let me tell you here that I’m in Facebook groups for narcissistic abuse survivors, but only because they’re the only groups that acknowledge the specific psychological damage dysfunctional families can cause.

I fought the BPD and DPD diagnoses, because I didn’t feel I met the criteria. However, this does allow the stigma to continue. Of course, I do have BPD traits. That doesn’t make me a monster. And of course I was a pain in the ass of my last psychologist. That doesn’t mean I have DPD.

Fairy

Fairy. I have always identified with this word. Or elf. Or changeling. The mythology of fairies taking human children and replacing them with one of their own, a changeling, has always spoken to me. It is a common early explanation of autism in the centuries prior to Leo Kanner and Hans Asperger. Obviously, I don’t agree with this, but I do understand it.

When Elena, one of my most spiritual alters, first emerged, she didn’t see herself as entirely human. She was the first to claim a fairy, elf or changeling identity. ChangelingGirl is one of my most commonly-used nicknames on bulletin boards.

I still like the idea that I have some spiritual aspect to myself. I don’t fully believe in Indigo children or the like. Besides, the theory of Indigo children is rooted in racism, usually favoring White children over those of color. However, somehow, there is some appeal to it. I do believe everyone has some spiritual aspect to them though.

When the body was a teen and Elena was most prominent, we had these weird superstitious rituals. We would’ve been open to pendulums and the like if we’d known about them at the time. More recently, when we did know about alternative stuff like this, I’ve tried to explore the tarot. I have several tarot apps on my phone. Of course, they’re marketed as for entertainment only. I like to use them to inspire my self-reflection. I don’t care that there’s no scientific proof.

This stream-of-consciousness piece was inspired by today’s word of the day challenge.