Rebirth

I remember reading a story some years ago in the book Preemie Voices by Saroj Saigal. This is a collection of autobiographical letters from people who were once premature babies in the university hospital NICU Saigal worked for. I, like the contributors, was a preemie.

In this particular story, the author shared how she felt she has three birthdays: one, her actual birthday, the second, her original due date, and the third, the day of her rebirth. In this author’s case, her rebirth meant being diagnosed with Asperger’s Syndrome (her choice of words).

I haven’t experienced one such pivotal moment in my life. I mean, I too could choose the day I was diagnosed as autistic (March 16, 2007). Then again, my diagnosis has been removed and reaffirmed so many times that I could just as easily choose the last time I was diagnosed (May 1, 2017). Besides, self-diagnosis is valid too.

I could choose the day I was given long-term care funding (June 4, 2019). Maybe that is the most pivotal moment in my life, but it didn’t exactly mean I was reborn.

I could, of course, choose the day I became a Christ follower (December 7, 2020). Many people in the Evangelical Christian community say they are Born Again and indeed, rebirth in Christ is a common Biblical concept. However, I am more of the opinion that, as Christians, we are on a continuous path towards God. I believe that, each time I consciously pick up my Bible, or the cross my husband gifted me and which I use for prayer, or each time a message from God truly enters me, I am transformed a little bit. I don’t believe that I will be made fully new until the day of Jesus’ return.

All that being said, I do believe I am not the exact same I was a year ago. I am not even the same I was yesterday. Or when I started writing this post. In my view, every single moment is an opportunity for rebirth. Every second we are given is another second chance.

This post was written for Reena’s Xploration Challenge, for which the prompt this week is a theme: rebirth.

Because I’d Had a Stroke…

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.


This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

#WeekendCoffeeShare (February 19, 2022)

Hi everyone on this gloomy Saturday evening. I’m joining #WeekendCoffeeShare today. I’m right between my dinner and my evening coffee and I cannot offer you a drink other than water right now, as my staff is busy and I don’t want to leave my room. I’ll get to that bit later. So, can I get you a drink of water? Otherwise you’ll have to wait until my staff returns. Anyway, let’s have a chat.

If we were having coffee (or water, in this case), I’d share that we’re quarantining right now, as four or five of my fellow clients are positive for COVID. Four are confirmed and the fifth one can’t be tested but is treated as having COVID too. I took a lateral flow test right after dinner this evening and so far I’m still negative, as are the four other clients supported by the same staff as me outside of my one-on-one hours.

This is the reason the staff are busy, with the staff who care for the COVID-positive clients having to wear PPE and the other staff having to remain out of these clients’ way. It is all rather chaotic.

If we were having coffee, I’d share some of my new clay creations with you too. Like I think I said yesterday, I finally created a cactus on Monday evening.

Polymer Clay Cactus

Then on Wednesday, I created my second-ever polymer clay cane. This one I did using a heart-shaped cutter for the image. I managed to do the reducing all by myself! Then I had my staff cut it into slices, which we then made into beads.

I also created several possible charms to go with these beads. One is a heart which I do kind of like. The other was a unicorn, but I threw that one away. I now only need to make more beads, because, even though I have more than just the four beads shown in the picture above, I don’t have enough for a necklace.

If we were having coffee, I’d share that, this afternoon, I have been experimenting with photo editing and meme making again. I didn’t have any success, of course. I mean, I found a photo editing app called Snapseed, which is relatively accessible with VoiceOver, but the one thing I wanted to do, ie. add text to an image, was not. That is, I couldn’t for the life of me figure out how to enter the text I wanted to add onto the image.

The result of all my experimenting is that now I have eight apps in my Photography folder on my iPhone rather than the four I used to have. And those four already seemed excessive, being that, besides the camera and default photos app, I only use one out of the two image recognition apps I have. Oh well.

If we were having coffee, I’d share about my nurse practitioner’s appointment on Thursday. I am so thankful we were still allowed to leave the home back then, because the appt was really productive. With respect to my new medication, the pregabalin, my nurse practitioner recommended I wait and see another two weeks before concluding it’s ineffective for my anxiety. We discussed my anxiety in a little more depth and also for the first time in a long while went into my diagnosis. He actually said he believes my diagnosis is DID (dissociative identity disorder) or at least some variation of it (ie. other specified dissociative disorder). I quickly talked over it saying it doesn’t really matter, as I know firstly he can’t diagnose me (but then again the psychiatrist can) and secondly I still haven’t had the extensive assessment required for a DID diagnosis in most places here in the Netherlands. That being said, it felt so good to be validated like this! My nurse practitioner also finally will make room for us to discuss my flashbacks at a later appt. He said the reason he didn’t go into it right then was the limited time left in our appt, but he’d definitely like to discuss it with me. That feels kind of weird, but in a good way.

If we were having coffee, lastly I’d share that I’m so glad the storms are finally over. Last Wednesday night, I hardly slept at all due to the high winds. Thankfully, last night and the night before that were better. My husband’s and my house did suffer some damage to the roof though. Hopefully insurance will be able to cover the cost of getting it repaired.

How have you been?

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Treatment Plan

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.


This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.

What It Was Like Being a Patient on a Psychiatric Ward #31Days2021 #Blogtober21

I’m still not too inspired to write. Today’s optional prompt for #31Days2021 is “patient”. Obviously, most people will write about “patient” as in the adjective derived from patience. I won’t. I want instead to share what it was like being a patient in a psych hospital.

As regular readers of this blog will know, I spent 9 1/2 years in a mental hospital between 2007 and 2017. I spent my first sixteen months on the locked ward. This is pretty much as I imagined it before I entered the psych system myself: floridly psychotic patients screaming and exhibiting other erratic behavior, staff running around trying to control it. Like I said yesterday, I witnessed people being secluded and being forcibly medicated several times. I was an informally admitted patient, so I couldn’t be subjected to any form of restraint. This isn’t to say it didn’t happen, as I said.

The staff/patient ratio at my ward was around 1:5 during the day. This means there’s not much time for staff to keep regular tabs on what patients are up to if they aren’t kicking up a fuss. I, in fact, at one point got told I would be put into time-out if I “needed more care than we can provide”.

After those sixteen months, I transferred to an open resocialization unit and later another open ward. The staff/patient ratio there was around 1:10, sometimes even less. As a result, patients had to help one another out sometimes.

On the locked ward, I had treatment plan reviews once every six weeks. This was because the ward was basically a crisis intervention/stabilization unit, where officially you could stay a maximum of six months. I must say there wasn’t much in the way of therapy. Of course, most patients admitted to this unit, suffered with psychotic disorders, for which the main treatment is medication. For me, it was decided I just had to figure out a place to go after pulling myself out of the worst crisis and, for this reason, I had mostly contact with the social worker.

On the resocialization unit, I did get psychotherapy. This was where I was diagnosed with (complex) PTSD and dissociative identity disorder in addition to autism. Thing is, once I moved to the other ward, these diagnoses were all removed. It was decided I was just care seeking and dependent and needed to be kicked out of the hospital.

We did have day activities most days on each psych unit. However, not all patients were able to participate. I, for one, usually was not.

In summary, my entire psychiatric hospital stay was one lengthy journey of changing diagnoses, social workers who tried to find me a place to live but had a very narrow view of what I needed, limited nursing support and hardly any day activities. I did start two of my three current daily psych meds while in the hospital. However, I must say, looking back, I hardly made any progress during those 9 1/2 years.

Dissociative Identity

The person in the mirror is not me. The person who carries this body’s name, doesn’t really exist as its own identity. We, as in, me and about 40 other insiders (also known as alters, parts or headmates depending on your perspective), share the body. We each have our own names; none of us claim the body’s given name, even though we’ve never felt comfortable claiming a collective name for ourselves other than Astridetal. We all have our own ages and more or less age-appropriate abilities too.

This evening, I was talking with our assigned staff after another small crisis in which one of the more emotionally immature insiders came forward. I was talking about the fact that we switch between alters more than I’d like to admit on a daily basis. I mean, Annemiek is our crafty insider. When we do polymer clay or jewelry-making, she’s out in the body. She, however, can see in the inner world, even though the body is completely blind. So when she gets frustrated with the intricate aspects of crafting, she shoves someone else forward.

Deborah was out this evening. She is 22-years-old, but very emotionally immature and very mistrusting of others. She is one of the ones claiming to need even more one-on-one support than we already get.

Our staff knows about our existence, but she didn’t know how we juggle the frequent switches on a daily basis. Some of these switches are not as overt as Deborah’s coming forward this evening. For example, when Annemiek is crafting and everything goes to plan, she can be pretty well-collected.

At one point, the staff suggested we create a list of insiders. We used to have one here on the blog, but deleted it as this blog evolved from a mental health blog to a more eclectic blog. Sadly, it turned out I hadn’t saved the file anywhere, but I had created a list some nine years ago for a former therapist. That one was quite eye-opening, as not only have a lot of insiders emerged since then, but some old ones have changed roles. It was very interesting looking at and updating the list.

Sometimes, it hurts that I’ve lived with these strangers for so long. I know for certain that some of us emerged as early as 2001. That’s twenty years ago. Even so, I suspect some of us have been inside this body for far longer, as is commonly the case with people with dissociative identity disorder (a diagnosis we do not currently have, by the way, but used to). I cannot at least remember a time without alters.

This post was written for Reena’s Xploration Challenge #197.

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

Disagree

Today’s prompt for Five Minute Friday (#FMF) is “disagree”. Initially, I was going to write a post about how (lack of) open disagreement with others was used against me. When my then psychologist diagnosed me with dependent personality disorder in 2016, she thought that my lack of open disagreement with many of her controversial opinions, proved I had this condition. It honestly to me proved that she was in authority even though she had no clue what she was doing.

I eventually deleted that draft and started over, but I still want to write along those lines.

In Christianity, we are often taught to not just respect, but obey authority. Children are expected to obey their parents in everything. Wives are expected to submit to their husbands.

As a survivor of childhood trauma as well as many abuses of power, I struggle with these commands.

That being said, the command to be obedient as a child and submissive as a wife, does come with its respective obligations on the part of the parents and husband. In Colossians 3:21, Paul writes for example: “Fathers, do not embitter your children, or they will become discouraged.” In other words, the Bible is not a reason for harsh treatment and abuses of power. Besides, of course the Bible does not say anything about people in modern-day, informal authority positions, such as the aforementioned psychologist.

Now, five years on, I am very happy that I eventually did stick up for myself and sought an independent second opinion on that diagnosis. Then I applied for long-term care. Now that I have the right people (loving, respectful people) around me, I no longer need to fear authority. I can respectfully disagree with people, whether Biblically I’m supposed to submit to them or not. I am still working on feeling confident in my role as a grown-up woman. God and His Word help me on this journey.

Okay, this post took me much longer than five minutes to write, as I had to look up what the Bible actually said and also because I got distracted several times. I hope that’s okay.

Scars Remind Us #WQWWC

“Scars have the strange power to remind us that our past is real.” ― Cormac McCarthy, All the Pretty Horses

Today’s topic for Writer’s Quotes Wednesday Writing Challenge (#WQWWC is “Healing”. I originally intended to post another quote, but then I had to address the fact that the source person isn’t an author. Not that I’ve read anything by Cormac McCarthy. Frankly, I just stumbled upon this quote on Goodreads by looking for quotes on this topic. However, the quote really speaks to me.

My psychiatrist’s appointment last week opened me up to a whole lot of trauma memories. Up until that point, I hadn’t thought that anyone would ever believe me again, after my dissociative identity disorder and PTSD diagnoses had been removed and everyone had basically decided I wasn’t a real enough trauma survivor at least until or unless I got re-assessed. That’s how I interpreted my psychiatrist’s insistence that I get evaluated for dissociation when I was still living with my husband. She was a great psychiatrist, but she never quite considered helping me with my trauma symptoms without a diagnosis. Then again, neither did I. Now I may even be ready, sort of, to ask for the re-evaluation myself.

The memories have been coming flooding back at me over the past week or so. I mean, I had flashbacks before, which is why the psychiatrist proposed I start topiramate, but they weren’t as bad as they are now. Unfortunately, I won’t be able to start on the topiramate until next week, as my care facility’s physician is on vacation and she needs to okay the prescription.

That being said, the fact that my psychiatrist is willing to prescribe me this medication specifically for my trauma-related symptoms, to me means she takes my trauma seriously. No-one before has ever suggested I try any medication or therapy for my trauma without my first going through the assessment process. Which, to me, means needing to prove my past and the resulting experiences are real first. Well, I can’t, because my dissociation makes me doubt my own reality.

Besides, one of my core traumas is not being validated for who I am. This has meant I’ve had to wear one mask or another, or sometimes several at once, my entire life. For this reason, I do not know who I am at all and constantly doubt my reality of experiencing post-traumatic stress symptoms.

In this sense, it is rather hard to process that most of my trauma didn’t leave physical wounds and that the traumas that did cause physical wounds, aren’t the worst ones. If my traumas had left physical wounds, there would be physical scars to remind me that the traumas were real. Now, there are mostly just emotional scars. I am still learning to validate the experience of my emotional wounds.