Not Quite a (Traumagenic) System?

I feel so awful right now. The visit from my parents went so well and this is actually confusing me. I mean, I consider some of my childhood experiences traumatic. Quite a few, in fact. How can this be the case if I have such loving parents? I mean, yes, they’re still a bit odd. My father just talked about the birds and butterflies and flowers we encountered. He didn’t ask me any questions or share anything about himself. That doesn’t make him a CPTSD-engendering parent though.

I had a dream yesterday about me needing to take the SCID-D assessment for dissociative disorders and it came back showing that I don’t have a dissociative disorder. It was probably triggered by my having read a message in a DID support group about how plurality is now something anyone can claim because of endogenic (born multiple) systems etc. We’re not an endogenic system, but can we claim to be traumagenic? Can we even claim to be a system at all?

I mean, other than online and to a few specific people who know us closely, we don’t share our names. It could just be that I gave names to different emotions or aspects of myself that I find hard to understand. This is what my community psychiatric nurse said on our last appointment. She said the consultant recommending EMDR for my traumatic experiences hadn’t recommended any type of “deep-digging” therapy. Not that I want that, but on some deep level (no pun intended), her claim that my parts are feelings, made me feel invalidated.

I told my CPN that, whichever treatment approach I try, my parts always show up and disrupt the process. She countered that we hadn’t tried EMDR yet. I know, but this approach is known to cause worsening of dissociation in those with dissociative disorders. Can it get me to “split” even more, even if I’m not a genuine multiple in the first place?

When I shared my doubts/denial on an E-mail list for DID, someone replied that I sign my E-mails with lots of different names. Well, that’s as easy as typing on a keyboard. No-one needs to have any special characteristics to be able to do this. It doesn’t prove my multiplicity. Besides, I know there are parts and they have names, but are these parts truly differentiated enough?

In a sense, it doesn’t matter. I’m not planning on seeking a DID/OSDD diagnosis anytime soon and by the time I might have overcome my fear of psychological evaluations, I guess DID has been removed from the DSM. Either that or Onno van der Hart and other scandalous therapists have given it such a bad name that no-one in the whole country will support me. And that’s even assuming that said assessment would show some type of dissociative disorder. Then again, if I’m claiming plurality for the sake of it, am I not contributing to the stigma surrounding DID myself?

In addition to the dream I had yesterday, I have recurring dreams about my parents finding out I’m in childhood trauma survivor support groups. They always confront me and my husband always sides with them. I guess I should leave those groups in case it really happens. I mean, I’m not an adult child of normal parents, maybe, but then again who is?

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

What’s Up (June 2020)

Wow, can you believe it’s already the last Wednesday of the month? I truly can’t. Time flies! Today I’m joining in with What’s Up Wednesday.

What We’re Eating This Week

Well, like I said last month, I live in a care facility with food delivery, so I don’t get to meal plan. We’ve been having an insane amount of baked potatoes lately though.

What I’m Reminiscing About

Not really anything. I mean, occasionally memories pop up, but they’re usually neither pleasant nor significant to share about here.

What I’m Loving

Sunshine! The weather is truly beautiful out here. Tomorrow and Friday the temperature is supposed to rise to 30°C (86°F). That’s a bit hot for my liking, but oh well.

What We’ve Been Up To

Lots of walking! I loved taking several long’ish walks a day with my staff. Today it was a bit hot, but we managed two shorter walks anyway.

What I’m Dreading

My parents possibly being judgmental about my living situation. They will visit me for my birthday on Friday. As much as I try not to stigmatize my intellectually disabled fellow clients, I still fear they’ll feel shame.

What I’m Working On

I started working in the book DIY MFA yesterday and immediately was inspired to write a piece of short fiction. It’s not remotely good enough to go on the blog and it doesn’t have an actual ending yet, but I liked the writing process.

What I’m Excited About

My birthday! Tomorrow, the festivities will start with my mother-in-law visiting. On Friday, my parents will visit. That’s a little scary, but it’ll likely be okay. Then on Saturday, which is my actual birthday, my husband will be visiting. I invited him to get pizza delivered.

What I’m Watching/Reading

I’ve been watching Diagnosis on Netflix and reading the book by that same title, written by Lisa Sanders. I also finally started reading The Falling in Love Montage by Ciara Smyth. I’ve been excited about it ever since I first heard about it in like January. It was released earlier this month.

What I’m Listening To

I’m frequently listening to the Harp Music for Sleeping playlist on Spotify. It’s very relaxing. This afternoon, in fact, I fell into a deep sleep listening to it.

I’ve also been discovering podcasts. Early this month, I mostly listened to true crime podcasts. Now I’m occasionally listening to progressive Christian podcasts.

What I’m Wearing

A skirt and a black T-shirt. I have three skirts that are the exact same model yet a different color. As I am blind and haven’t labeled my clothes, I don’t know whether this is the blue, green or red one.

What I’m Doing This Weekend

Having pizza with my husband on Saturday, like I said. I’ll probably have a lie-in on Sunday.

What I’m Looking Forward To Next Month

Probably visiting my husband for a weekend again. Like I mentioned a few times, the visiting rules at my care facility will be relaxed come this Friday. This means I’ll be allowed to go home to my husband for a weekend again. I don’t want to right away, but I’m hopeful in July I’ll be able to go a few times.

What Else Is New

My husband has two weeks off work this week and the next. He’s getting workmen over to replace the outer doors and some other big things that need doing.

What’s up with you?

Five Things I Enjoyed During Lockdown #5Things

Today I’m joining in with the Five Things Challenge, for which the topic this week is things we enjoyed during lockdown.

Now I must say we had an “intelligent” lockddown here. Most businesses were closed, as were schools and restaurants. Many people still weren’t taking it seriously. After a week of school and business closures, on March 23, the prime minister announced stricter enforcement of the stay-at-home order. That’s when he invented the term “intelligent lockdown”. The care facility implemented a no-visitors policy after this. Still, there were no curfews or rigid restrictions on where or when you could be outside. As such, my list may be a little different from that of those who experienced a complete lockdown. Here goes.

1. Walking. Like I said, we didn’t have a curfew. Still, according to Fitbit, in the Netherlands too steps taken dropped significantly during lockdown. I, however, was able to increase my steps a lot.

2. Blogging. It’s great that the #AtoZChallenge was in April, in the midst of lockdown. I truly enjoyed blogging almost everyday during the strictest stay-at-home orders.

3. Reading. Similarly, suddenly I had time to read. Not only did I not go visit my husband or need to fulfill other obligations, but the day center was (and still is) closed. At the day center, I occasionally tried to read, but the noise was just too much. As a result, I had much more time to read. I don’t think I finished any of the books on my lockdown TBR list, but that’s probably because I’m a mood reader.

4. Saving money. Okay, that’s not something I did, but it did happen. I didn’t go out to dinner or have to buy transportation tickets to go to my husband. I didn’t get my hair done, which was really okay as I hate getting it done. In the end, I ended up saving some money. Then I bought my iPhone, of course.

5. Snacking. In the early weeks of lockdown, I was using the added stressor as an excuse to snack on candy and cookies and basically anything. Magically, I more or less maintained my weight throughout the lockdown. I’m due to get weighed in tomorrow again.

What were the positives of the lockdown for you?

Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

Gratitude List (June 20, 2020) #TToT

Hi everyone! How are you all doing? I’m a bit tired, but not ready to go to bed yet. Instead, I’m going to write a gratitude list again. As always, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. Sunshine. The weather was really good over the past week. We had some light rain some days, but most days were sunny and warm.

2. An anti-allergy medication. I have bad eczema that itched like hell for some weeks. I finally went to the doctor on Wednesday and got an antihistamine called desloratadine. It didn’t help at all the first few days, or maybe without the medication the itch would’ve been even worse. In any case, now it does seem to help.

3. An antibiotic ointment. One spot, which the doctor initially thought was the result of an insect sting, got inflamed. Thankfully, with some Fucidin applied topically, the inflammation is a lot less now.

4. The night staff. A few nights ago, the itch was so bad and the inflamed spot so painful that I got really scared. I called for the night staff to apply some oily cream to the eczema. She did this, but I remained very scared. Somehow, I had gotten it in my head that I’d get sepsis from this. I pressed the call button again at around 2:30AM. The night staff was so kind and reassuring.

5. Alternatives to bread. I don’t really care for bread for lunch, at least not when topped with the ordinary kind of things you normally put on bread, such as cheese, peanut butter, etc. Thankfully, we had some lettuce left over from making burritos last week, so I had a salad for lunch one day. Another day, I had noodles.

6. Pancakes. Today, two staff came to our home on a voluntary basis just to bake us pancakes. They were so delicious!

7. Reaching my step goal. I reached over 12K steps (my goal being 10K) on three days this week. Today, I didn’t do so well, so I will still need to get some 5K steps tomorrow to break my weekly record of just under 65K steps.

8. The visiting rules at my care facility likely being relaxed as of next week Friday. The announcement will go onto the facility’s COVID-19 page on Monday.

9. My parents offering to visit me. I called my Mom last Sunday and, as we were discussing the visiting rules, my father asked if they could come too. I initially was a bit hesitant and I’m very nervous, but also excited. They will be visiting me next Friday.

Oh, and now I can’t think of a number 10, but whatever. I’m grateful for being able to express my gratitude. Consider that my tenth thankful. Besides, the number is just a suggestion.

What are you grateful for?

Lovin’ Lately (June 19, 2020)

Hi everyone and welcome to another edition of Lovin’ Lately, in which I share all the things I’ve been loving recently. I’m joining in with Friday Favorites.

Today was a pretty busy day. It was the Friday we have day activities (every other Friday is a day off). As such, I’ve been pretty active. This is why I didn’t sit down to write until now that it’s past 10PM. With no further ado, let me start.

1. Netflix. Last Saturday, in an impulse, I decided to get a Netflix subscription again. I always get the basic one, as I, being blind, don’t need HD video or multiple screens to watch on. I wanted to see the Netflix original documentary series Diagnosis. This is really fascinating!

2. My yoga mat. My husband brought it to me last week and I finally unfolded it this evening to get some working out done. I tried several yoga apps, but haven’t found one that I like yet. Then again, I love doing yoga just the way I like it. I mean, I’m pretty inflexible and don’t have much strength in my muscles at all, but if I don’t practise, it will remain this way. I tried a beginner’s yoga class with the app Down Dog, but couldn’t follow it without being able to see the video. Still, I loved the feel of working out.

3. Journaling prompt collections. I’ve probably mentioned half a dozen times already that I love to collect books of writing prompts, particularly those geared towards journaling. This week, I got a few good ones. The Goddess Journaling Workbook by Beatrix Minerva Linden is great. I already worked on some of the prompts over the past few days, as you can see. I however also love The Year of You by Hannah Braime.

4. A stuffed pillow. I got to borrow one from another client here at the care facility earlier this week and was totally in love with it. I kept stroking its soft side as I dozed off to sleep.

5. My Fitbit. This is by no means a new product, but I just want to mention it as a way to celebrate the huge step achievement I reached this week. So far this week, I got over 56K steps. This includes a short elliptical workout this evening. My Fitbit doesn’t count the yoga workout.

What products have you been lovin’ lately?

It’s Been Three Months

Today, it’s been three months since the day center closed due to the COVID-19 lockdown. A few days earlier, we’d already been advised not to get visitors at the care facility, but the no-visiting rule didn’t take effect till March 25. Over at Mama’s Losin’ It, Kat asks us in one of her writing prompts this week how we’re doing three months into lockdown.

Of course, the restrictions are slowly being lifted. As of May 21, we’re allowed two visitors, ideally from the same household. They still need to maintain distancing, can’t have physical contact with us and can’t enter the care homes.

I found out yesterday that more restrictions may be lifted as of June 26. I already arranged for my parents to come visit me on the 26th, as my staff said this was okay even though my mother-in-law will be visiting me on the 25th and my husband on the 27th. I guess they’re being less strict as it’s my birthday on the 27th.

The new rules, if they take effect on the 26th, would allow limited outside activities, such as visits with family. Then again, a lot is still uncertain and is left up to the specific homes’ staff and management. Regardless, the day center won’t fully reopen till October.

I’m doing pretty well amidst the lessening restrictions. I mean, I’m really excited but also a bit anxious about possibly being allowed to go home to Lobith again. It’d be cool if I could have a real birthday celebration even if it isn’t right on the 27th.

With respecct to the day center, I’m happy it won’t reopen fully till October. I feel a lot more comfortable getting day activities in my own home, where I can retreat into my room. I also think I get more support now. I really hope a way will be found for me to retain a similar level of support once we return to the day center.

It’s interesting that, with quarantine having lasted for three months and still a lot of restrictions remaining, I hardly ever think of COVID-19 or the lockdown. Last week, another writing prompt I came across was about quarantine and I couldn’t think of what to write for it. Several people I know were tested for coronavirus recently, but I readily assumed they would be negative (and they were).

Other than that, we don’t shake hands and keep our distance whenever possible. That will likely continue for a long time still. generally though, I’m going with the flow, as they say.

Of course, I’m happy I can see my husband and family again. I’m also still very happy that this thing didn’t happen last year, because then I’d have to stay at home alone for so many months. Remember, the day center won’t reopen till October. Now this feels comforting. Last year, this definitely wouldn’t have been the case.

Mama’s Losin’ It

Listening to My Inner Voice(s)

The day two prompt in The Goddess Journaling Workbook is about listening to your inner voice. This is incredibly hard. Not just because I have multiple inner voices, but because a lot of them carry shame.

Today I found out Onno van der Hart, one of the world-s top experts on dissociation, had his psychotherapy license revoked indefinitely for violating a patient’s boundaries. He was the main proponent of the structural dissociation theory. This theory is controversial in its own right, as it dehumanizes alters. For example, therapists are supposed to only talk to the host or apparently normal part, who is then supposed to relay messages from the other alters or emotional parts. One of the main problems with this is shame. The host often feels uncomfortable sharing the other alters’ thoughts because they are painful.

So, as an act of radical rebellion, I am going to now let each alter who’s willing to speak on this issue share their thoughts.

I knew this. DID is bullshit. It’s not real, at least in my case. I’m so happy I am not diagnosed, as this Onno van der Hart, a so-called expert, took twenty years therapying with a client only to make her dependent and then dump her like a pile of poo.

I’m scared. I wish I still had the diagnosis so I could get trauma therapy. I want my therapist to comfort me. I don’t want to integrate, but I do want to process stuff. I’m not sure. I’m scared that no-one will believe me now that the Netherlands’ top expert on DID lost his license.

I don’t want no fucking therapy. I don’t want to be forced to be anything I’m not. I just want to be me and be myself and be accepted.

Fuck. I’m manipulative. The whole trauma thing is made up.

Well, I realize I’m not really even capable of letting each of us share their honest thoughts. I still find that I was going to redact out the four-letter words. I feel tons of shame surrounding this whole controversy and the DID thing as well.

As a side note, Onno van der Hart wasn’t sued for his theory of structural dissociation. I think it will continue to guide psychotherapists and the multidisciplinary guideline for treating DID. Van der Hart lost his license for boundary-violation, including unloading his own personal problems onto the patient, sending her unsolicited, emotionally laden E-mails, etc. My husband said he was just trying to cash on her and if no-one saw it, something’s wrong with psychotherapists in general. I’m not sure how I feel about that.