Misunderstood

I am currently reading Forty Days on Being a Four, a book of reflections by Christine Yi Suh, who identifies as an enneagram type Four. In the day one reflection, she discusses the story in Luke 7:36-50 in which an unnamed, sinful woman enters the house in which Jesus is eating with a Pharisee. The woman’s dramatic display of emotion makes Christine Yi Suh think she’s a Four. Indeed, she is greatly misunderstood by the Pharisees, who see just her sinful lifestyle and don’t understand that she is in fact displaying her faith, love and devotion towards Jesus.

The reflection ends with the question in which ways I, being a Four, have been misunderstood. Well, for one thing, I’m often not even seen as a Four. Others would most likely describe me as a Five, because I’m such a thinker.

In fact, one of the main ways in which I feel misunderstood, is that my intellect is overrated and my emotional life underrated. As a child, I was described as self-centered, selfish even. I often got the feeling that I was seen as unfeeling. I am not and never was unemotional at all.

Indeed, I do feel that the depth of my emotional life is often misunderstood. I used to joke that I should give my parents the table of contents of the DSM-IV (we were still in IV era at the time), so that they could pick a random disorder to label me with when I wasn’t being my desirable, intellectual self. I mean, they often labeled me as dramatic, psychotic even. I wasn’t.

People who really know me, know that deep down, I’m definitely sensitive. I may not show it on the outside as much as the unnamed woman in the story does.

Another way in which I am often misunderstood, is in terms of my behavior. Too often, my challenging behavior has been seen as a willful act of defiance. In this sense, I do relate to the woman in the story, who lived a sinful lifestyle up till the point she met Jesus. Like Jesus saw beyond her acts, so He hopefully sees beyond mine. Like this woman was saved by her faith, so hopefully am I.

I also see that other people who know me, look beyond my distant, intellectual façade and also beyond my dramatic emotionality. They don’t see my intellectual and distant appearance as a sign of lack of emotion. They also don’t see my dramatic displays of emotion as mere manipulativeness, like my family used to. They, in fact, see me as a sensitive but also caring woman.

Like the woman in the story, I am sinful. I mean, my challenging behavior was there when I was a child and in some ways still is there. However, I recognize that I am not just my behavior. Like Bobby Schuller says, I am not what I have, I am not what I do, I am not what people say about me. I am the beloved of God.

The Shifting Image of My Care

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

Why I Love My Hair

Two weeks ago, I shared my response to a prompt in Lisa Shea’s book on gratitude. I expressed gratitude for my health. Today, I saw another prompt in the same book. It asks the journaler to write down what they love about their body. I realized midway through writing this post, that I already covered this topic several years ago. The first thing I mentioned being grateful for then, is my hair. Today, I am sharing in more detail why I appreciate my hair.

I have long, dark hair. I of course already have some grey patches here and there, but that’s okay.

When I was a child, my mother used to hate my long hair, because it got messy pretty easily. She also felt that my habit of hair-twirling was annoying and that I’d hide behind my hair.

She at one point yelled at me that she didn’t care what I did with my hair – cut it off, get a perm or whatever -, but I couldn’t have it the way I had it then. I can’t remember whether I listened. At least I don’t anymore and love my hair the exact way it is now.

I occasionally wear my hair in a ponytail or braid, but usually like it just fine hanging over my shoulders. I do wear a hair clip to keep some hair from covering my eyes though.

I went to have a haircut a few weeks ago. Until then, my hair was so long it’d touch my breasts when hanging loose. Now it just about covers my shoulders. I like it this way, because I could still put my hair into a ponytail if I wanted to but it doesn’t hang in my food as easily as it used to.

I have slightly wavy hair. After my recent haircut, the waviness got more pronounced. I like that. My sister has totally straight hair. Most people I know like mine better.

It’s not even that I take great care of my hair. I wash it with regular shampoo three times a week, occasionally using anti-dandruff shampoo instead if needed. I don’t use conditioner. I at one point wanted to experiment with homemade hair masks, but haven’t gotten down to that yet. Even without extensive hair care, my hair is pretty easy to brush through. Of course, I get tangles when I’ve had an unquiet night, but usually it’s pretty neat.

Do you like your hair?

My Twelve-Year-Old Self Would Be Surprised

Today, Emilia of My Inner MishMash had a very interesting question of the day. She asks what twelve-year-old you would never believe about your current self. This is the perfect question to get me reflecting on how I saw my life at age twelve.

Honestly, there is nothing about my current life that would be so far off that my twelve-year-old self wouldn’t believe it. I mean, I alternated between seeing my adult self as a professor and seeing her as a care facility resident. That first image, I saw as the “good” one. I would be a linguistics or mathematics professor. Never mind that, at least here in the Netherlands, mathematics isn’t a suitable university major for a blind person.

That second image, I saw as the “bad” one. I have probably written before about the sixteen-year-old girl in the media in around 1997 or 1998, when I was eleven or twelve. She had a low IQ, but not so low that she’d fit in with intellectual disability services. She also had severe challenging behavior. The reason she was portrayed in the media, was the fact that she was being restrained and held in solitary confinement in an adolescent psychiatric hospital. I totally identified with this girl.

Of course, currently, I’m not being restrained or secluded. I have some experience of manual restraint and seclusion, but not to the extent this girl did.

This gets me to the part that would probably surprise my twelve-year-old self most about my life right now: that I am relatively happy. For what it’s worth, I totally thought that, if I had to be in long-term care as an adult, I would be utterly desperate.

Another thing that would’ve totally surprised twelve-year-old me, is that I’m married. In truth, it still surprises me at times that my husband is willing to share his life with me. Though as a teen, I imagined becoming a mother later, I never quite considered a partner in my life. Besides, being married doesn’t at all fit in with the “bad” image of myself as a care facility resident.

Lastly, like I commented on Emilia’s post, the one thing that my twelve-year-old self wouldn’t believe about me, is that I found my faith in God. After all, I was raised atheist and was at age twelve clueless about faith. My teachers at the Christian school for the blind made me participate in prayer, something I had a huge aversion to. Honestly, till this day I struggle to pray at set times of the day because it feels more like a ritual than an investment in my relationship with God.

What would surprise twelve-year-old you most about your life right now?

Faith Is a Verb

Last Saturday, my husband told me about a book he had been reading. He said: “It’s a Christian book.” As a progressive believer who struggles with her faith a lot, I wasn’t sure I wanted to read a Christian book. Two weeks earlier, he had recommended Mere Christianity by C.S. Lewis to me and I hadn’t picked it up yet. After all, some of the passages he read to me had me angry.

My husband though explained to me that the book he was recommending now was perfectly suited to my recent struggles. You see, I have been struggling with feelings of worthlessness due to my not living the life my parents had envisioned for me.

The book is called You Are Beloved by Bobby Schuller. My husband was so convinced it’d help me, that he offered to buy me the eBook on whichever platform suited me best. I said I’d look whether it’s available on Bookshare, an accessible book service for the print disabled, first. And it was. I downloaded it as soon as I had access to stable WiFi.

I looked up Bobby Schuller first before starting to read the book. My husband isn’t very conservative either, but still more conservative than me. I wasn’t sure I’d like what Schuller had to say.

I so far only read the introduction, but was immediately enthusiastic. Not just for Schuller’s book, but for my faith in general.

I don’t have a church I belong to normally even without COVID. In fact, I usually listen to American church services despite living in the Netherlands. I hadn’t listened to them in a while though and the ones I usually listen to are so progressive they’re hardly Christian at all. On Sunday, I decided to listen to the prior week’s sermon (since the current week’s wasn’t available yet due to time zone differences) from First United Methodist Church in Baton Rouge, LA.

In it, the pastor discusses Ephesians 4:22-5:2, in which Paul tells believers how to be Godlike. The pastor also quotes an original Methodist work that explains the character of true believers. It said, among other things, that we are happy – always happy. The pastor uses this to tell the believers that the goal of the Christian life is not just to go to Heaven after we die, but to be Christlike in the current life too. This very much resonated with what my husband said to me when recommending Schuller’s book: that faith is a verb.

My husband meant to say that, if we truly believe that God loves us, we will also extend this to others and live an ethical life. He also said that the goal of every religion, not just Christianity, is to find true peace of mind. In other words, the goal is not just to sit on a cloud and play the harp after we die (in case that’s how you picture Heaven), but to experience the kingdom of God here on Earth.

Schuller’s main point, by the way, is that we are not what we do. We are not what we have. We are not how others see us. We are beloved by God just because we are.

”Grace

Grief

Today’s Five Minute Friday prompt is Grief. When I first saw it, I knew I just had to write on it, but I didn’t know what to write. In a way, I still don’t know. But let me write anyway.

I have been close to clinically depressed over the past few weeks. I don’t know whether this is grief for something I have lost. Perhaps my old, functional self.

Then again, that functional self was a façade. A mask. Layers upon layers of masks formed within those early years of my life, when I still functioned. On the surface, that is.

And here I am, in a care facility, waiting for the manager and behavior specialist and the funding authority to figure out if I can get one-on-one support. And now I grieve the loss of that façade. I am intensely sad. I worry that if I am truly myself, if I peel off all the layers and layers of masks, an intensely wicked, horrible monster will remain. I can almost literally picture the monster in my mind’s eye.

Everytime I think I’ve found the real, authentic me, and it’s a good thing, it turns out to be yet another alter. I wonder what remains if they all go. Will the intensely wicked, horrible inside of me seep through to the outside world?

I am not very religious, but I do believe in God. Especially in these hard times, I pray. I pray that God will help me remove the layers and layers of masks I’ve put up over the years. I however also pray that, beneath them all, the monster will turn out to be some kind of prince(ss) from Beauty and the Beast or whatever. At least not as wicked as I see it as.

Okay, this turned out very different than I had imagined. This piece does reflect my innermost thoughts. For those who haven’t read my previous posts, I do not see my inner monster as some kind of universal thing, like original sin. In fact, I am convinced that most people are both good and bad. The wickedness applies only to myself. And yes, I know I’m not some type of criminal, but I still see myself as intensely bad.

What Recovery Means to Me

Yesterday, one of the daily word prompts here on WP was Recovery. I didn’t see it till it was already time for me to go to bed, so I’m writing about this word today. Today, I am sharing with you what recovery from my mental health conditions means to me.

First, there are a few things recovery doesn’t mean to me. Recovery isn’t the same as being happy all the time – that’d be an unrealistic goal. It also isn’t the same as independence. I don’t intend on ever living independently again and there are few things with respect to life skills I’d really still want to learn.

Recovery does mean no longer being scared when I’m able to do something independently. Currently, I constantly expect people to overestimate my abilities, so when I can do something independently, I think people will expect me to do it all the time.

Similarly, recovery means no longer being afraid of my feelings, both good and bad. Affect phobia is a thing, you know? I currently tend to dissociate from my feelings a lot. I also often counter joy or sadness with anger, because that’s the easiest emotion for me to express.

Recovery means having a relatively stable sense of self. I don’t necessarily want to integrate all alternate parts of my personality, although it’s okay if it happens spontaneously. We do want to achieve cooperation among ourselves. This also means being able to accept the seemingly opposite sides of me.

Recovery means, as a result of the above, no longer needing to rely on negative coping strategies such as self-harm, rage or impulsive behavior. I will no doubt still have times when I indulge into an unhealthy habit such as overeating or buying stuff I don’t need. That’s okay, since I don’t think total self-control is a realistic goal. I just don’t want to use these as coping skills when feeling overwhelmed, and I no longer want to engage in self-harm at all.

Lastly, recovery means no longer expecting people to abandon me if they know the real me. Currently, I have such a negative self-image that I believe any positive aspects of me are a façade and at the core I’m so wicked no-one should want to be associated with me. Overcoming this is probably the hardest thing to achieve, as expectation of abandonment is such an ingrained thought pattern. I really hope to someday stop seeing myself as one giant manipulator though.

In addition to the word prompt, I am linking up with #LifeThisWeek and #SeniSal.

Empathy

I’ve been thinking about empathy lately. A few weeks ago, I wrote that I have been looking at my personality from a highly sensitive person or empath theory perspective. Though this is still somewhat fitting, I indeed experience this strange mix between low empathy and hyperempathy.

I mean, I pick up on the general atmosphere in a room pretty easily. I also absorb others’ emotions. I feel when other people are sad or angry in distress. I cannot pick up on happiness as easily, but I’m learning.

Then again, when presented with a social situation, be it in theory or in real life, I show very little empathy according to neurotypical standards. I have absolutely no idea how to articulate how people are feeling.

I recently saw a post by Ashley on alexithymia. Ashley contrasted alexithymia with borderline personality disorder, in which people are overly emotionally sensitive. Well, I have both. Or maybe I just have the autistic women’s general mix between high and low empathy.

The interesting bit about alexithymia is, when being assessed for it in 2017 as part of my last autism assessment, one of the scales was on interest in talking about emotions and such. I scored normal if not high on that one. Similarly, when taking personality tests like those based on the MBTI, I usually score higher on feeling than thinking. That’s because I somehow want to see myself as a sensitive person. That doesn’t necessarily mean that I am though. Like I said before, my husband sees me as an obvious INTJ.

My community psychiatric nurse signed me up for a psycho-education course on autism this past week even though I know quite a bit about it already. Looking over all the criteria, I thought: “That must be so hard to deal with… Oh wait, that’s supposed to be me.” There was a bit about lack of empathy too and that made me feel awful. As much as I “wanted” an autism diagnosis when last assessed for it, I don’t want to be seen as having low empathy.

This post was inspired by today’s RagTag Daily Prompt.

Three Years Out Today!

Yay, I’m three years out of the looney bin today! In a way, I’ve come so far. I’ve genuinely tried living independently with my husband. I mean, each time I was in a crisis in 2017, I told the consulting psychiatrist seeing me in the hospital that I was fine going home. I asked for more help each time, which I was given. This little (or not so little) voice inside my mind still tells me those overdoses were manipulative and I should not have gotten the help I asked for. They were impulsive each time, but at the time of taking those pills, honestly I didn’t think: “If I do this and survive, I’ll ask for more help.” Truthfully, I didn’t think much at all.

Then in early 2018, I had a crisis at day activities. That was what started me on my journey of admitting I truly couldn’t – or wouldn’t, as this not-so-little voice tells me -, live independently. At first, when the Center for Consultation and Expertise consultant asked me what I wanted, I said I wanted to live close by a living facility so that I could walk over or call for support. On September 20, 2018, I eventually told my support coordinator that I’d really want to go into a living facility with 24-hour care. She then called the consultant, who was still willing to help us on this journey.

We filed the request for long-term care funding in December of 2018. It was denied on February 27, 2019 on pretty weird grounds. We appealed and our appeal was granted on June 4, 2019 on actually about as weird grounds. I mean, the Long-Term Care Act fails to recognize the implications of multiple disabilities, but how the appeal lawyer managed to find a workaround, still baffles me. I don’t care though, as unless the law changes, we won’t have to apply again.

And here I am, nearly eight months into living in the long-term care facility in Raalte. Still, this not-so-little voice nags me each time I try to open up about my needs. My mother’s voice speaks to me again. When I’d just landed in crisis in November of 2007, she called me to reprimand me about going into the psych hospital. “You can’t even wipe your butt without your support worker’s help,” she said. It wasn’t true then and it isn’t true now, but I feel ashamed each time I ask for help, particularly with personal care stuff.

I had a session with my CPN from mental health this afternoon. I do an eHealth module on self-image, so we got talking about that. I got to say that one of my main reasons for having a negative self-image, is that each time I think positively of myself, or validate myself, this not-so-little voice tells me again that I’m manipulative. This seems to be at the core of many of my issues and yet I cannot even say rationally that it is certainly not true.

Valid? #SoCS

I’m not sure I’m valid. I joined some groups for highly sensitive people and empaths on Facebook. I relate to literally almost every trait associated with being an HSP/empath. Then again, I’m also autistic and this means I don’t have the cognitive ability to know what’s expected of me in social situations.

I’ve heard there’s some theory about autistics being hyperempathetic where it comes to feeling others’ emotions but less able to know what another person needs. Something with cognitive empathy being lower than emotional empathy. Or was it the other way around? I have no idea and am too lazy to google it now.

I always feel like I want to see myself as a lot more positive than I am. I mean, some people close to me have said I even have some narcissistic traits. Some people think of me as a pretty stereotypical autistic and I’ve always felt good about that, as it validates my feelings of being different and my need for support. Empath/HSP only validates my feeling different.

Yet sometimes I feel that my seeing myself as somehow highly sensitive, is a way of obscuring my negative traits. It’s not that I don’t see them, but that I label them positively in a way. I mean, 90% of empathy traits are worded at least somewhat negatively. For example, have you been told you are “too sensitive?” Do you need alone time a lot? When a friend is distraught, do you feel it too? Heck, I sense negativity a lot, but isn’t that just me being a generally negative person?

I have a feeling that part of the reason I want to see myself as unique somehow, has to do with an external locus of control. I don’t want to see my huge flaws and instead go label them as assets or blame them on my childhood trauma.

And yet most people say I have a negative self-image. My CPN from mental health wants me to do a module of cognitive behavior therapy on helping me get a better self-image. Maybe I need to learn to see myself as just the ordinary person I am without either negative or positive stuff that make me different. After all, when I say I’m a pretty good writer, people close to me often say: “Well, about average for someone with your education.” Apparently I’m quite arrogant in this respect.

So am I allowed to feel different or is that just an excuse to set myself apart from the herd? Remember, feeling like you can only be understood by certain people, usually those with high status, is a narcissism trait in the DSM. I’m not sure. I want to feel okay about myself, but doesn’t that mean seeing my negative traits too? And seeing them as well as the positive ones for what they are: just traits? I guess I’ll learn this in the module.

I’m joining in with #SoCS, for which the prompt today is “val”.