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.

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?

I Am My Top Priority?

Today I decided to buy The Goddess Journaling Workbook by Beatrix Minevera Linden. This book of journaling prompts focuses on the Greek goddesses to explore yourself and keep a manifestation mindset all through the year. The first goddess to be explored is Persephone. She was led into the Underworld by Hades and ate a pomegranate there. This fruit was the fruit of the dead, so Hades could really keep her in the Underworld forever. Eventually, Hades and Persephone’s mother Demeter reached an agreement to keep Persephone in the Underworld half the year and in the upper realm the rest of the year.

Persephone’s story is used as a metaphor for our darker side and our mistakes that follow us throughout life (like Persephone’s eating the pomegranate did). The first prompt in Persephone’s chapter is titled “You are your top priority”. It asks us when we didn’t put ourself first.

Well, my first thought is: am I really supposed to be my own top priority? My husband often says he values me more than himself. I tend to reply that I value him more than myself too. Whenever I doubt that I value him more than myself, I feel guilty. But really, I currently choose myself over my husband whether that’s supposed to be so or not.

It wasn’t always this way. Until I made the decision to try to go into supported housing on September 20, 2018, I always put others first. Not just my husband, but literally almost everyone seemed more important than me.

I was diagnosed with dependent personality disorder in 2016. Though the diagnosis was made for all the wrong reasons, there is some truth to it. I remember my psychologist used my lack of resistance to her opinions against me and she was right. Until I decided to ask for a second opinion in November of that year, I never openly fought her list of ongoing misdiagnoses and mistreatments. It’s interesting that, later, she said I am very assertive but maintained that I have DPD nonetheless.

What also comes to mind, is that as a child and even as a teen, I always did what others wanted and put them before myself. I remember at one point using the Persephone myth to describe how I felt about my relationship to my classmates in high school. (Remember, I went to grammar school, so the classics were taught a lot.)

Still, I was thought of as self-centered or selfish even by my parents. This is probably because, in a materialistic way, I did put myself first. I was often jealous when my sister got gifts. Indeed, she did get more than I did, but I got more attention, albeit most negative.

Now I do generally put myyself first. I decided to go into long-term care despite no doubt disappointing my husband a bit. I mean, of course I struggled greatly living semi-independently, but it wasn’t like I was dying. Or maybe sometimes it was, because I did take two overdoses that could’ve killed me. Then again, wasn’t I selfish for doing this?

Linking up with Life This Week.

Expressing Faith By Expressing Anger

Last week, for some reason, I felt called to listen to a church service. When I do, I usually listen to United Church of Christ services, though occasionally I check out Protestant Church in the Netherlands services locally too. The service I ended up listening to was delivered at Mayflower Congregational UCC in the Oklahoma City area. It was titled “disorientation”.

The topic was how many Christians think they’re not healthy or whole enough to attend church. Many Christians are taught to believe that we shouldn’t show our distress or be angry with God. Though I grew up in an atheist home, I too was taught not to complain or be angry. “Gets angry easily” was often written about me in psychological reports. This may have been so, but anger in itself isn’t bad.

Rev. Lori Walke, in her sermon from May 10, talks about the psalms, nearly half of which are psalms of lament. In one of the psalms she discusses, psalm 13, David cries out to God in anguish:
“How long, Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.” (Psalm 13:1-4 NIV)

Rev. Walke goes on to recite the rest of the psalm:
“But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the Lord’s praise,
for he has been good to me.” (Psalm 13:5-6 NIV)

This expression of anguish shows, according to Walke, that David deep down still has faith. After all, if he didn’t believe his anger would do anything, what good would there be in expressing it? As such, those who hold their anger inside and keep silent, usually are more hopeless than those who cry out.

This is why Walke invites us all to take our troubles to church. We don’t need to put up a happy face all the time. Indeed, in our expression of anger, we also show an expresssion of faith.

This totally struck a chord with me. I was taught as a child not to express my anger. Like I said, it was said about me that I was angry too easily. When I landed in the mental hospital at age 21, I even for a while had the unofficial nurses’ “diagnosis” of “angry and dissatisfied”. While there definitely was some truth to this, stuffing my anger only fueled my hopelessness. It was in my expressing my despair that I also showed that deep down I still believed in a good outcome.

Joining in with Let’s Have Coffee.

When I Was Five

This week it’s 29 years ago that I spent a week in the children’s hospital with a collapsed trachea. It closed up on the night of April 28, 1991, the night after we’d celebrated my mother’s birthday, two months before my own fifth birthday. I was unquiet all night or so I’m told, getting up to go to the bathroom a dozen times. Eventually, my parents discovered what was going on and I was rushed to the hospital.

Thankfully, my trachea opened again within a day or two. I don’t know whether I had to be on a ventilator. In fact, I remember very little of these first few days. Then, on May 3, I had surgery to take out my tonsils and adenoids. That surgery had been scheduled for May 21 at another hospital anyway, but the children’s hospital could fit me in earlier now that I was there anyway.

After surgery, I had to stay in the hospital for another few days because I had a breathing tube inserted. That is, I’m not 100% sure the breathing tube was before or after surgery. I remember trying to talk through my tube, which was pretty much impossible.

This was probably also the time in hospital that my parents brought me their supermarket’s brand of peanut butter to eat, as I wouldn’t eat the premium brand the hospital had. Can you tell I was spoiled or autistic or both?

Finally, I got home on May 7. I was already a calendar freak, so I actually remember this without having been told.

As I write this, my inner five-year-old is trying to speak up, but she can’t. I don’t know whether this hospital stay was particularly traumatic for me, even though the going to the bathroom compulsively became a habit of mine in my teens. I may have made Lisel (that’s my inner five-year-old) up, because after all I remember this particular hospital stay so well.

I do think falling ill in early 1992, was more of an adverse childhood experience for Lisel (or me, if you think Lisel is made up). I remember I had some form of the flu, but in my own memory, it wasn’t entirely medically explained. My parents will probably say I’m trying to find clues that aren’t there so am making them up. I mean, they never talked about this experience when, in my teens, I was trying to remember when my negative mood started. They claim, as did I at the time, that it started when I was seven and having to learn Braille. In other words, I was going blind and I knew it but refused to accept it, so was becoming defiant to show a middle finger to the world. It’s easy to say it doesn’t matter. In a way, it doesn’t, but too often, I feel my parents are hiding the truth from me as a way of denying that I had significant mental health issues before the all-important age of seven. I mean, if my problems started at seven, I cannot possibly be autistic or have a dissociative disorder or anything originating in early childhood, right? Besides, I could have been old enough to be manipulative.

Am I being manipulative indeed? Or am I an early childhood trauma survivor? I don’t know and I’m not sure Lisel knows the answer.

Joining in with V.J.’s Weekly Challenge.

Mother As Place of Attachment

It’s already been eighteen months since I last wrote about what I read in The Emotionally Absent Mother. Still, the book hasn’t just sat there. I struggled to move on from Mother As Source. The next section is titled Mother As Place of Attachment. Somehow, this is a really hard section. I don’t really know why. I mean, yes, part of the reason I struggle to move on in writing about this book, is that I do it publicly and what if my parents read this? Then again, I don’t really care. I’m in groups on Facebook for childhood emotional neglect and emotional abuse survivors too. Though the member list of private groups isn’t available to non-members, I’m pretty sure they know somehow. Honestly, regarding this, I care more about my husband’s opinion than my parents’.

But there’s something specifically about this section that is hard. I’m not even sure what. Maybe it’s just that I don’t have a lot of early memories of my mother. I attribute this to my father being the homemaker and primary caretaker in our household. But fathers can “mother” too.

The first question asked in the section on your mother as place of attachment, is to rate your sense of connectedness to your mother on a scale of 1 to 10. The next question is how your sense of connectedness evolved over the years.

Well, with my mother, I am generally at a 5. I don’t feel she “gets” me, but we do get along okay. Like I said when discussing mother as source, I don’t feel that I’m made of her, but she isn’t from another planet either. Or maybe she’s from Venus. I mean, we’re not constantly disconnected.

Over the years, my sense of connectedness to my mother has stayed the same. I never quite felt like we had a strong bond, but I didn’t feel totally alienated either.

My father is a different story. We had a strong connection, maybe around 8, when I was a child. Now we’re at a 3 at best. Like I said in my mother as source post, as a child, I saw my father as the embodiment of intelligence, success and well what other positive characteristics are there really? When I got to question his having sole ownership of the truth at around age 15, things started to change. Or did things change earlier on? I’m not sure.

Another question is about bodily contact. This is where I get to question whether the schism occurred earlier than age 15. When I was a young child, my father definitely did give both my sister and me lots of opportunities for bodily contact. I remember when my sister and I were little, my father would wrap us in a towel and drag us to our bedroom. He called this “swordfish” and my sister always asked for “sordsish”.

My mother says that, around age 7 or 8, I stopped wanting to sit in my parents’ lap. From then on, bodily contact like hugging or good-night kisses was very ritualistic. I remember around age 11, being forced to read a certain number of pages in Braille if I wanted a good-night kiss. This at the time felt very distressing. I haven’t studied emotional development except in the context of intellectual disability, so I have really no idea whether it’s normal to still want good-night kisses at that age. I guess not.

As a side note, I did initiate physical contact such as hand-holding with practically every adult until I was at least 12. In my psych eval report from age 11, the ed psych notes that I claim not to need a cane but grab her hand immediately anyway. That first bit was no doubt related to my difficult accepting my blindness, but I don’t think the second bit is fully. Even as an adult, I truly crave physical contact and am a bit indiscriminate in who can give it to me. I mean, I am pretty clear that no male staff can provide me with physical comfort (or help me with personal care). With regards to female staff though (and the entire current staff of my home is female), I do accept physical comfort. I honestly don’t know how my husband feels about this.

PoCoLo
Keep Calm and Carry On Linking Sunday

Working On Us Prompt: Family Relationships and Boundaries

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

#WeekendCoffeeShare (August 25, 2019)

It’s Sunday, yay. I am once again linking up with #WeekendCoffeeShare. I just had a cup of green tea and a glass of water with my evening meds. Let’s catch up.

If we were having coffee, I’d share that I am mostly excited. On Tuesday, I heard through my support coordinator that I’d been accepted into a long-term care facility. It’s the one in Raalte that I’ve shared most about. Raalte is a little over an hour’s drive from my current home and nearly 1 1/2 hours from the house we’re buying, but so far my husband seems okay with it. He asked to see the place, so we were planning on driving there this week-end for a quick look around the grounds. Then the weather got in the way, as it’s too hot to drive for that long.

If we were having coffee, I’d also update you on the house-buying process. The financial aspect is nearly finished, so most likely it’ll indeed all go through.

If we were having coffee, I’d share that my parents were in the area today. My father bought some type of outdated physics measuring device from when he was in university or so it seems. We met our parents near the house we’re buying. They seemed content with it.

If we were having coffee, I’d share that we (as in, multiple me) are still feeling a little conflicted about the whole thing. I guess it’s mostly our wish to conform to our parents’ image of us. We could finally show off something about ourself, being homeowners soon, and yet we’re choosing to live in long-term care instead. Of course, I haven’t told my parents yet, but they’ll find out sooner or later anyway.

If we were having coffee, I’d then proceed to talk up some light-hearted stuff. I’d share what I’ve been reading (look for a post on that tomorrow). I’d also share that I’ve been enjoying various blogging prompts over the past few weeks. I love venturing out into new territory with stream-of-consciousness writing and trying my hand at poetry.

How have you been?