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.

Just Rambling

IWSG

I really should be posting my Insecure Writer’s Support group post today, but I’m not fussed. I didn’t write as much over the past month as I’d liked to and the optional question doesn’t appeal to me. For this reason, I’m just going to ramble. I will post the #IWSG link and image on this post, but I won’t really be sharing much writing-related news.

I mean, the optional question is how long you let drafts sit there before redrafting. The short answer is that I don’t really do drafts. I write my pieces in one go usually and publish them onto my blog right away. Of course, I do have freewrites and some works-in-progress that I haven’t published anywhere, but even my one published piece that I wrote back in 2014, I wrote in one sitting.

Okay, now that we have this out of the way, let me ramble about other stuff. Today, like most of the past month, has been mixed. I was okay for most of the morning and afternoon, but in the evening, I’ve really been struggling. My feelings that, if I drop my mask (figuratively speaking), everyone will run from me and no-one will want to care for me anymore, are intense. For those who might be visiting from the IWSG: I live in a care facility due to my multiple disabilities, including challenging behavior. Lately, I’m spiraling more and more out of control and this seems to create a vicious cycle of anger, shame, self-hatred and more anger.

Yesterday, I had an appointment with my psychiatric nurse practitioner. We decided there that I won’t go the diagnosis route for dissociative disorders, but that off the record at least we agree that I have dissociative identity disorder (DID). We won’t do a whole lot of system mapping. Not only have I done this already, but it seems counterproductive to the idea of needing to practice being present.

Speaking of which, I looked up the learning to be present exercise in the first chapter of Coping with Trauma-Related Dissociation and had my staff write it down. The book is in English (at least, my edition is) and my native language is Dutch, so I translated the exercises and where appropriate, adapted them to suit my needs. After all, one of the exercises is naming three things you can see around you. As I am blind, this won’t work. I do find that other exercises do help me. One in particular is the butterfly hug.

Tomorrow, my GP will get back to me about my medication. I would’ve gotten topiramate prescribed to me for my PTSD symptoms, but found out last week that it’d block my birth control pill from working. My nurse practitioner would originally have prescribed the topiramate, but now I need to work something out about getting on a different contraceptive first. This will hopefully be sorted tomorrow or at least then I’ll know when I can come in to see my GP about it. I really hope this medication (the topiramate) will help, since I’m on quite an emotional rollercoaster.

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.

A Favorite Childhood Gift

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

If The Staff Saw My True Nature…: Reflections on Not Belonging

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

We’re In Pain

So we’ve had a mouth ulcer for some days now and as of today, it really hurts. Our staff called the GP, since we can’t go to the dentist now due to our facility’s COVID-19 restrictions and also since they already knew it was a mouth ulcer. The medical assistant couldn’t decide what to do right away so she talked to the doctor herself. Our staff called back some time later. At first, the doctor said to just take paracetamol, but our staff nagged a bit, so now we’ll get some lidocaine gel. This will probably arrive tomorrow.

We somehow misunderstood the doctor’s telling our staff to just give us paracetamol as her thinking we weren’t in significant pain or that we were overreacting. This caused some of us a lot of upset. Over dinner, we were feeling really overwhelmed by the pain and also other clients’ noise. We somehow couldn’t speak until after we’d had a full-on meltdown. Then we got to express our pain and our staff fetched us some paracetamol. That did help some. We’re still in pain, but it’s manageable.

We generally feel very triggered of late. We’re currently reading a foster care memoir by Maggie Hartley called Who Will Love Me Now?. It’s about Kirsty, a ten-year-old being rejected by her first foster carers after they took her in from a neglectful biological mother as a baby. Understandably, Kirsty feels that no-one loves her now and is acting out a lot to prove this point.

I feel a lot of the more disturbed younger parts can relate to this. Thankfully, our parents never abandoned us, but they did threaten to institutionalize us a lot. Age ten was around the time this started.

I also showed a lot of the behaviors Kirsty shows. I mean, I would also often tell my parents that they didn’t love me. Though I didn’t experience the early abandonment Kirsty did, I do most likely suffer with some attachment issues. I can only speculate as to why this might be.

As we’re now in a place where at least so far the staff are saying we can stay, I notice we act out a bit out of a need to “prove” our point. Which is what, really? That no-one wants us, I guess. I’m not 100% sure how to let go of this feeling.

I did journal a lot in my Day One journals over the past few days. It feels good to let out my thoughts. I’m trying to make this a daily habit and hope my blog won’t suffer because of it.

I Think We Found a Relatively New Alter

So last Friday we for whatever reason landed in a bit of a crisis. Our husband would be visiting us on Saturday and for some reason, we convinced ourselves he was coming to say he wanted to break up with us. Like I said yesterday, it turned out he wasn’t. He’s such a great hubby!

The night staff checked on us at around 10:45PM. This had been agreed on after our crisis last week, because we were scared to press the call button at night. We told the night staff that we were anxious. She tried to tell us to try to get some sleep. Obviously that didn’t work out.

After we’d been going on the computer for a bit, we decided to E-mail our husband. Then, for some reason, we eloped and wandered around outside of the care facility for a bit. We after about half an hour tried to find our way back, but the doors to our home and to all other homes were locked. We started to scream out for help and finally, the sleepover staff heard us. She and the night staff came to our rescue. Of course, we were asked why we hadn’t pressed the call button. So far, I have no idea.

Then yesterday evening, we were watching a video on the Dutch Center for Consultation and Expertise website. It was about a young woman with severe attachment disorder. In the midst of it, our staff came into our room for something, I can’t remember what. We got really agitated and that’s when I realized this might be a relatively new alter. The girl in the video was called Deborah, so that’s the name this new one chose.

What is so unique about her, is her tendency to “test” the staff’s willingness to help us. Some of us, and this may include her, get triggered when we perceive we’re getting less help than we think we need. Some of us express this appropriately, but Deborah doesn’t. She, rather, gets really agitated and self-destructive. Unlike the Deborah in the video, she hasn’t been aggressive towards others as of yet, though inside she definitely feels like it.

We discussed Deborah’s needs with our assigned support worker just yet. She tried to reassure us that we don’t need to leave the care home. Deborah is lucky that she had me (Clarissa) nearby to explain.

Our staff will have a meeting with the behavior specialist and physician tomorrow to discuss our care. We may get a door sensor, which alerts the night staff when we leave our room. After last week’s crisis, we also gave some of the things we were thinking of using as self-harm tools to the staff. This should hopefully be enough, though Deborah’s behavior is in some ways getting worse. We hope it doesn’t get so bad that we need more support than our home can provide.

Clarissa

#WeekendCoffeeShare (April 5, 2020)

I more or less abandoned the What Day Is It Anyway? posts when A-to-Z started, but I wanted to write a check-in anyway. I am joining in with #WeekendCoffeeShare, although it’s a bit late for coffee. I did have a cup of decaf about an hour ago. I also just had a nice orange-pineapple-guava drink. I am not a big fan of fizzy drinks, but thankfully usually we have some non-fizzy soft drinks or juice in the fridge for week-ends.

If we were having coffee, I would ask you all how you’ve been doing on your third week of lockdown. I had a pretty good week. It was better than last week. Last week, after all, I landed in some crises due to missing my husband and all the change that is brought on by this COVID-19 thing.

If we were having coffee, I would share that on Monday, my home’s manager came to talk to me. I was scared at first. Thankfully, she came to reassure me that I won’t be kicked out of the facility for having challenging behavior. That was quite a relief to me.

If we were having coffee, I would share that I made delicious crispy chicken with the staff intern at day activities on Tuesday. I made them with dorito chips for the crisp. I think I’d prefer them with slightly more spicy doritos, but I had intentionally picked the cheese-flavored ones, as I normally don’t like the paprika or chili-flavored ones.

If we were having coffee, I would share that I didn’t do as well on my step goal as I did last week, but I still managed to get to 10K steps once and reached over 8K steps on three other days.

If we were having coffee, I would share that I struggled a bit with health anxiety at the end of the week. Like I mentioned in passing in one of my A-to-Z posts, I’ve been convinced for years that, once I’d find a suitable living place, I would get a serious illness and die. This caused me to feel some intense anxiety when I had some health symptoms. Thankfully, I was able to talk it through with my staff.

If we were having coffee, I would tell you that I would originally have had a phone appt with my community psychiatric nurse from mental health last Friday. I waited for twenty minutes for her to call and then decided to call the secretary. Turns out my CPN was off sick and the secretary had forgotten to tell me. Thankfully, I didn’t have a face-to-face appointment.

Because I was struggling a bit, my staff arranged for me to have a phone check-in with the facility’s behavior specialist. She was pretty good at calming my nerves. She reminded me to look at today only. I won’t die today and I won’t be leaving the facility today. That was helpful.

If we were having coffee, I would share that I’d been trying to record a video and then take a picture of myself for my husband. I reasoned he may like to see me now that he can’t come here. We don’t normally video call or anything, so he hadn’t seen my face in a month or so. Unfortunately, the picture I took showed my eyes and nose only. I wonder how other totally blind people learn to take pictures. Anyway, I finally had my staff take a picture of me. In this picture, I’m holding my stuffed panda. I often cuddle it when I miss my husband, because the panda is the largest soft toy I own. No, my husband isn’t fat like the panda, LOL.

How have you been?

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!