A New Client Came to Our Home

Trigger warning: mentions eating disorder behaviors
So a new client came to our care home yesterday. It was completely unexpected also to the staff. They didn’t hear she was coming till Friday evening. She has some form of brain injury, dementia and she broke her hip, which is why she had to come here. She lived independently until this. She seems okay, but due to her dementia she needs a lot of support. This did upset some of us, particularly Rachelle. It completely wrecked with her sense of structure and also the trust she had in the staff.

Today we had an Easter dinner. We had had the choice between pizza or fries. We chose pizza, but weren’t sure about it after all, as everyone else got fries. This further upset us, particularly Agnes. Agnes was feeling off, so she wanted to binge, but the staff prevented her, saying she was full already. This led her to a teenage tantrum.

Then once we talked to her about the importance of sticking to a somewhat healthy diet, she wanted to purge. Thankfully we were able to talk her out of it. Then however Rachelle took over again, with me (Eleanor) being present too. We were able to articulate our feelings to some extent.

Part of the problem is Agnes wants to be independent and make her own choices, including unhealthy ones, but Rachelle really needs more support than we’re currently getting. Thisdispute between them was also triggered by the new client getting pracctically one-on-one support all day, while we were in our room by ourself a lot. There is an extra staffer for the new woman, but we still feel like a burden.

We talked to our assigned staff about maybe making some form of communication cards that don’t require speech, so that Rachelle (and others) can ask for help when we can’t quite talk. We also talked about us getting a more structured daily routine particularly on week-ends.

We’re not sure this will help, but we’ll see.

Eleanor with some others chiming in here and there

Hihi it’s Milou

So I writed this some hours ago but didnt feel like posting it here cause bigs want to keep the blog big and serious and stuff but thats not what we meant this blog for when we first started it so I will just write.

Hihihi everyone its me Milou. I’m 8-years-old and I have lots of fun today. Today this staff person taked me to the playground and I went on a seesaw. Of course with the body being big now I not fitted in the seat but I sitted on a side thing that bigs can sit on and still use the seesaw.

Then I got me and Lisel whos 5 some fun books. We tried amazon first but that wouldnt work for some stupid reason so we got some stuff off Apple books. All the books were free so yay we can have as many as we wants. I got one called 100 jokes for kids and it had lots of funny jokes in it. I’m a little old for this kind of books but cause they’re in english they still are fun for me.

Here’s one joke I remember now.

Q: What happens when the cows refuse to get milked?

A: Udder chaos!

Milou age 8

Carol and Jane

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

Jade

We don’t have an alter named Jade. We do have one named Jane, one named Janita and one named Jace (short for Jaclyn). But we have no Jade. Then again, we love jade.

Jade is a beautiful green gemstone. At least, that’s the color we know. There are also creamy white and blue jades. We had at least one, a green jade, in our gemstone collection, I believe.

It is supposed to be a protective stone, in terms of crystal healing. I’m not sure I believe in crystal healing, but to some extent, I guess I do. Jade is supposed to promote self-sufficiency. In that sense, I guess our alter named Jane would love it as her stone.

When I look at the supposed benefits of jade, I see it also promotes balance, harmony and moderation. To me, this signifies that it could be an especially useful stone for us.

It isn’t specifically suited to our Zodiac sign. That is, it is suited to Libra, which we are supposed to be if you take our due date as our birth date. Which I have no idea whether any astrologers even do. I guess not. Our regular Zodiac sign is Cancer.

Jade is connected to the heart chakra. The heart chakra’s color is green. At least, when I did a guided color meditation using the chakras, I was told to envision the heart chakra as green. I wonder whether there’s any connection between the main colors of gemstones and what chakras they’re most related to.

Synesthetically, the word “jade” is also green. Three out of the four letters are green and the overarching color of the word is an emerald green. I truly think it’s amazing!

Linking up with #JusJoJan, for which the prompt today is “jade”. I’m not sure I’m allowed to link up, since I didn’t previously participate this year, but oh well.

Friday Evening Ramblings

Hi all,

A lot has happened over the past few days. Last Tuesday or Wednesday, we were checking out the website for our current care agency and we found out they have stories from clients, family and staff on the website. One of the stories was about a woman who lives with minimal brain dysfunction. This is the old term for invisible effects of brain injury. She had this from birth. I loved reading her story. It was so relatable. Then again, some of us were feeling off. Like, this woman lives in housing for people with brain injury and some wondered whether we can do this too.

Then we had an idea. We read about a training program called Hersenz. This translates roughly to “brain etc.” It is kind of like a continued course about the effects of brain injury and learning to handle those at home. For like when you can’t be in a rehabilitation center but can’t quite cope at home either. I don’t know whether it’s for people who live independently only, as we have no intention of leaving this facility.
I then inquired about whether there’s a brain injury cafe in my area, where people with brain injury come once a month to discuss their issues. There isn’t as far as we can tell, so oh well. Oh, you all know that we have some level of brain injury from a brain bleed we sustained shortly after birth right?
We also have been thinking of asking whether we can have our story on the agency website too. That would be fab!
Today we had a meeting with our psych nurse and nurse practitioner from the mental health team. I can’t quite remember all that we discussed but it was a good meeting.
Oh by the way, I’m Danique. I’m 21 like Clarissa and I guess I split off from her. Not really sure why. I don’t care though. There’s someone softly telling me that splitting isn’t possible in adulthood unless you experience recurring trauma, which we don’t right now. Well I don’t care. We also think we found a younger one who is 11 and is called Janita or Janique Or Janelle but she isn’t really sure about her name.
I feel pretty awesome right now! I guess there’s someone else feeling triggered or sad or whatever, as I sense those feelings too.

Danique

#WeekendCoffeeShare (November 10, 2019)

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

Validating Jane?

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

Shark!

Stuffed Shark

So my husband came over today. I had originally planned on visiting him for the week-end, but then I’d have to go home to the care facility by ParaTransit taxi again. You get only 700 km at a reduced rate each year and the one-way drive from my husband to here is 72 km. This means that I can’t go each week for the rest of the year. So my husband proposed to come over for a visit.

We went to IKEA in the nearby city of Zwolle. I was looking for an office chair to use in my corner of our house. The way IKEA is constructed, you need to walk past a lot of other stuff before you can get to the desks and office chairs. This meant we could also check out the lounge chairs. I took my lounge chair (well it was originally my husband’s family’s but I used to sit in it all the time) to the care facility with me and would like a lounge chair at my husband’s house too. We couldn’t buy one right away, but we did see some good, some bad and some really rubbish ones.

At one point, we came across the soft toy aisle. My husband showed me a giant stuffed elephant and then an equally large stuffed shark. The littles were totally in awe! He asked us whether we wanted to buy the shark and we shouted “Yes!”. So we now have a stuffed shark. We took most of our stuffies to the care facility with us, so we’re very happy to have a soft toy at home with our husband too. We joked that of course we have our husband, but well, that’s different.

We also got some nice candy. Some of us were upset because we couldn’t have Swedish meatballs. Not that our husband said so – he didn’t explicitly say they were on offer, but he knew we knew about them -, but we had already had pancakes for lunch and figured it wasn’t healthy to have two meals. Everyone was content again when we got the candy.

We also ate out at a nice Indian restaurant. The food was delicious!

At Every Age

There’s so much I want to write about, but I can’t get myself to sit down and actually write. Well, sitting down is not the problem, as I’m probably still a pretty sedentary person, but actually writing is.

Today, I”m joining in with Finish the Sentence Friday (#FtSF). This week, the prompt is to write about your (or your child’s or whoever’s) favorite age.

I used to think being younger was better. I don’t really know why. Maybe I was conscious at an early age of the fact that life is finite, so growing up meant getting closer to death. I also thought that growing up meant an increase in responsibility, which scared me from an early age on. After all, I knew from as young as age nine on that I was supposed to leave the house and go to university by eighteen. That’s a huge burden of awareness to carry as a child that young.

Now I think being at every age has its beauty. I do worry that I’m declining in health already, and this is where the sitting down comes in. I really need to get more active, because I know that at every age, you can do something to improve your health and wellbeing.

I also think that, at every age, you can retain or regain some level of childlike wonder. We see this in the alters, who each represent a particular stage in development. Some are grown-up for their age, like Jace, the 9-year-old who was told about going to university and leaving the house. Others are more childlike, like Milou, who is 8-years-old and very playful. We also have an adult, Marieke, who, though she’s 32, enjoys sensory learning and play.

In my fellow clients at day activities, I also see the beauty in every age. They are intellectually disabled, most with a so-called “mental age” under six. Now the concept of “mental age” is highly ableist. However, learning about normal child development can teach us some interesting things about myself and others with developmental disabilities anyway. I was intrigued to read about emotional development as it pertains to people with mild intellectual disability and as it pertains to me in some way too. The consultant psychologist assigned to my case in my care-finding process, said I function emotionally at a 16-month-old level. This explains a lot of why I act the way I do. Interestingly though, we don’t have an alter who identifies with this age.

In short, I think every age and stage in development has its beautiful sides and its ugly sides. Childhood means your parents still have a lot of control over you, but it means you have relatively few responsibilities. Adolescence and young adulthood come with increased responsibility and freedom. I don’t know yet what middle age or old age will bring, but I’m confident I’ll find the beauty in it.

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.