I Was Taught to Believe…

Posted on by Astrid

That, if I didn’t have my parents’ support, I had no-one’s and I would never get anyone’s support. “You are socially inept,” my mother said, “and you got it from us.”

This exchange happened in late April of 2006, when I had just been kicked out of my parents’ house. Not that I still lived with them, and not that I was ever planning on doing so again, but my parents made it very clear that they would no longer support me. I don’t even mean financially, but practically and emotionally.

What had I done to deserve this? I had told them I was delaying going to university one more year. I wasn’t giving up on it. I was still going to meet their expectations of me that I become a university student, grad student, Ph.D., professor, you name it.

And then I didn’t. In the fall of 2007, while attending the university I had originally been meant to go to in 2006, I gradually fell apart and was ultimately admitted to the psychiatric hospital. Though I was discharged in 2017, I never went back to university.

Though my parents and I are still in limited contact, I know I don’t genuinely have their support. Not emotionally. I mean, I see them twice a year, talk to them on the phone about once a month and get €1000 at the end of the year to spend on new technology mostly. I don’t know whether this will remain the same when I go into long-term care (or when they find out about it). And I’m not sure whether I care. They aren’t the type to stop talking to me at funerals or the like and I don’t really need their money or birthday presents or phone chatter, though they’re nice. I won’t go no contact, but if they decide to abandon me, that’s their choice.

Because, though I was taught that without my parents, I had no-one, this isn’t true. I met my husband in the fall of 2007. You know, the fall that was supposed to be the start of my academic career and ended up being the catalyst to my getting a life of my own. My husband supported me through the psychiatric hospital years. He supports me through the years we live together. I trust that he’ll support me through the coming years when I’m in long-term care. I may be socially inept, but that doesn’t mean no-one will support me. Love me even.

This post was written for V’J.’s Weekly Challenge. V.J. challenges us to think about the untrue things we were led to believe as children or in other dysfunctional relationships.

Working On Us Prompt: Suicide and Suicidal Thoughts

Posted on by Astrid

I have lots of things I want to write about, and yet all I do is sit behind my computer and try to figure out which feed reader would be best (or least bad) on my Windows PC. I’ve yet to make a final decision, but I’m frustrated with it for now.

I’m joining in with Beckie’s Working On Us Prompt again. This time, the topic of discussion is suicidal ideation and suicide attempts.

As regular readers of my blog know, I do experience suicidal ideation on a regular basis. I have in fact lived with re-occurring suicidal ideation ever since the age of seven or so. My most severe suicidal break however was in 2007, when I was 21. Ironically, my parents thought that, since I had had suicidal thoughts on and off ever since age seven, I must not be serious and it all must just be “for attention”. Well, let me be very clear on this: suicidal thoughts are no fun and, if they ever happen “for attention”, there probably is a very good reason the sufferer is seeking attention.

I had never attempted suicide when I had my break in 2007. This break too involved “just” threats. However, it doesn’t mean I wasn’t genuinely struggling. I genuinely thought death was my only option. Same when, in 2002, I wrote a goodbye letter but had no idea how to go about actually taking the final step. People commonly say that, if you truly want to end it all, you will and, if a suicide attempt fails, it must not have been serious. That’s not necessarily true. People die from impulsive suicide attempts and people who’ve tried to kill themselves many times and are adamant they want to die, may still be alive.

In 2007, I was hospitalized, because my suicidal ideation was so serious that I needed help for it. That is, because I was suicidal due to be overwhelmed living independently and going to university, it helpd already to be taken out of the situation. That doesn’t mean my suicidal thoughts were gone immediately. That took at least three months and they’ve returned frequently since.

I did not actually get much help overcoming my suicidal thoughts. When I was on the locked unit, I had no therapy and no medication other than PRN oxazepam. I started therapy at the resocialization unit, but it was mostly just supportive.
In 2017, after my discharge from the psychiatric hospital, I made two suicide attempts by overdosing on medication. I am hesitant to call them suicide attempts, because both were impulsive and I’m not sure my intent was to die. I was most definitely depressed though. My suicide attempts were “for attention”, yes, but I had a very valid reason to seek attention.

I Got Approved for Long-Term Care!

Posted on by Astrid

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

Dealing with Some High School Memories

Posted on by Astrid

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Was I Sometimes Raised as a Golden Child?

Posted on by Astrid

I have been feeling really off lately. I keep having flashbacks. I also keep having what I’d describe as flashforwards, where I imagine my parents’ reaction to the different possible outcomes of the long-term care situation. These then lead to more flashbacks. One particular flashback I keep having is to a phone conversation I had with my mother when I’d just been admitted to the mental hospital in 2007, or maybe it was shortly before then. She yelled at me “You can’t even wipe your butt without your support worker there”. While this was and still is exaggerated, I do have issues with my personal hygiene, including sometimes with toileting.

I have noticed that there’s a lot of shame attached to my needs. Like, there is this constant nagging voice in my mind saying that I really do manipulate everyone into giving me more care. After all, am I not getting by? This part of me is telling me to erase everyone from my life and just go live on my own, since even if I lived with my husband and no support, there was still my husband to be manipulated.

I was discussing all this with my nurse practitioner last Thursday. He said even if I do manipulate people (and I no doubt do, as does everyone else), these people also let themselves be manipulated. Like, if they have an attitude like they’d rather help me with every little thing than endure my frustration, it’s no wonder I become dependent.

There was this show on Dutch television last Sunday about a second grade class. I didn’t see it, but a term used in it that was repeated often throughout the week, was “curling mother”. I have no idea whether that’s the correct English term, but it refers to a parent who helps their child with everything until they’re eighteen and then magically expects them to have learned independence and leave the nest. My nurse practitioner was reminded of this when I described my parents. It feels odd, because even though yes my parents did help me with every little thing, this expectation that I move out at eighteen was made very explicit from an early age on. It wasn’t like my parents were hoovering over me not realizing that they’d not be there for me forever. In fact, I’m pretty sure they couldn’t wait for me to move out. It just ugh, feels so off. Like I was spoiled somehow because my parents did everything for me.

At this point, I remember a discussion in an inner child healing group in which the original poster commented on some author or speaker saying that the golden child of narcissistic parents suffers a lot. This person was confused, because the golden child is the child favorited by the narcissistic parent, the child who doesn’t get abused (or so it seems). Some people said that the golden child suffers a lot because, well, they are only the narcissist’s favorite as long as they live up to their perfect standards.

I was raised in a household where the golden child/scapegoat roles reversed repeatedly. For those not aware, the scapegoat is the main target of obvious abuse in a narcissistic family. As such, I can relate to a lot of golden child attributes. Like, I was often praised excessively, bragged about and let off the hook. Then again, I was, and this was always very clear, expected to livve up to my parents’ perfect-image plan for me. Once I stopped doing this, I was placed in a clearer scapegoat role.

It still feels off to think of myself as having been spoiled. I know Pete Walker says spoiling is a severe kind of trauma too. However, in society, it is often treated like the spoiled child is to blame for being spoiled. And they definitely aren’t. Only as adults can they choose to undo the effects of this trauma, but they have to admit it first. I have to accept this.

#WeekendCoffeeShare (December 29, 2018)

Posted on by Astrid

Oh my, it’s Saturday again! This means it’s been nearly a week since I last wrote a blog post. I really wanted to write more, but I’ve been feeling badly uninspired. Today, a few ideas are floating through my mind, including several blog challenges. However, I’m finding that I struggle to put much effort into a blog post. For this reason, I’m settling on a #WeekendCoffeeShare post.

If we were having coffee, I’d ask you how your holidays have been. Mine have been good but exhausting. I went to my parents for Christmas Eve and stayed there overnight. It was okay. We managed to avoid discussing my life, which is a good thing, since my parents are very disappointed in how I live my life. Like, my mother can feign a bit of interest in my activities at the day center for severely intellectually disabled people I attend. My father can’t even pretend to be interested. I’m fine with it, sort of. At least by avoiding talking about me, we don’t risk ending up in a fight. It was a much more relaxed visit than the ones at which I’ve tried to talk about my life.

If we were having coffee, I’d share about the gourmet dinner we had on boxing day at my in-laws. It was fun and tasty, but I did end up with a lot of IBS symptoms for a few days following it.

I’d also share about my plans for buying a Macbook. I did share this with my parents and sister on Christmas Eve. I’d not even told my husband before, because Macbooks are rather expensive and I was afraid he wouldn’t approve. Not that he has to. Buying a Macbook would mean I could use its built-in screen reader and no longer depend on JAWS, the main screen reader for Windows, which costs like 1000 euros and hasn’t been improved much sinnce it was first released. In theory, I could get JAWS paid for by health insurance as a needed adaptation, but I’ve been waiting for my insurer’s approval for nearly a year. My husband was in fact pretty supportive. We found an older Macbook Air model for a reasonable price. I can’t wait to go to the store to take a look at it.

I don’t have any plans for the week-end. Besides resting, that is. I’ll probably just chill out with some TV shows or books. My husband’s oldest sister is going to visit us for new year’s eve. That should be fun.

Mother As Source

Posted on by Astrid

I was finally able to read The Emotionally Absent Mother again, since transferring it from my computer to my iPhone. Until I did this, I was unable to read any of my EPUB eBooks, because the program I used for it was no longer supported by my screen reader. I missed reading this book in particular, since it had a lot of eye-opening questions in it. I last wrote about it last August, when I shared about good enough mother messages. Now, I am moving on in the book and starting with the roles good enough mothers have. The first one is mother as source.

This section starts with the assertion that mother is what we’re made of. It goes on to assert that, both literally and on a more spiritual level, we come from mother. Literally, we come out of her womb. Spiritually, nature is often seen as coming from the ocean, which is in mythology seen as a mother goddess.

This whole assertion seems a bit off to me. Like I said in my post last August, I was raised primarily by my father as a child. Obviously, I came from my mother’s womb, but this is hard to imagine.

One of the thought-provoking questions in this section is to imagine yourself in your mother’s womb. If you can’t imagine this, you are encouraged to imagine being engulfed by her energy. This gave me uneasy feelings. I have never felt able to see that I come from my mother. In fact, my parents used to joke that the neonatologist brought me into the world, not my mother.

Good enough mother-sources are able to create a positive and welcoming environment for their children with their presence. They make the child feel proud to be of her. As such, the next question in the book is whether you wanted to be similar to your mother or as different as possible (or anything in between). If someone were to say you’re so like your mother, would you be proud?

I have to clarify here that my mother herself didn’t and still doesn’t have the healthiest self-esteem. She used to say, and it came across only half jokingly, that I inherited all my bad characteristics from her and all the good ones from my father. As untrue as this is, I didn’t grow up feeling proud to be like my mother, because she didn’t convey that she had any characteristics to be proud of.

With respect to my father, who primarily raised me, I wanted to be like him as much as possible. Until I was an adolescent, I saw my father as the ultimate embodiment of success and every other positive quality. Then I started realizing that he too has his flaws. I now feel more closely related to my mother than to him.

The next question is whether you can imagine being proud to be of your mother. Do you identify yourself in relation to her? My short answer to this is “No”. I identify myself more in relation to my mother-in-law than my own mother.

In short, I do not feel my mother was able to be a good enough source. Of course, physically she wasn’t, by no fault of her own. By this I mean that all her pregnancies were complicated and the one with me ended in my premature birth. I don’t want to say that somehow she rejected me, because I know she didn’t. Once I was born, in fact, I was more unconditionally – or should I say less conditionally? – welcomed by her than by my father.

Of course, the stress of having had four pregnancy losses prior to being pregnant with me, could’ve caused her body to be less welcoming to a fetus. That, however, and I want to be very clear about this, isn’t her fault, or anyone’s fault. There is nothing my mother did to cause my premature birth!

The Greatest Life Lesson #Write31Days

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Welcome to day eleven in #Write31Days. Today, I picked a prompt from 100 Self-Help Journal Prompts by Francie Brunswick. It asks us about the greatest lesson we’ve learned in life and what makes this lesson so important.

Here I’m going to be a bit repetitive, as I covered this topic already in my letter to my younger self. The greatest lesson I’ve learnd in life is that you need to stay true to yourself.

I have some codependent tendencies. In other words, I tend to be a people-pleaser. For years, I thought that to make up for the burden that I was due to my blindness and other disabilities, I’d need to let other people make everyday decisions for me. In that sense, at age seventeen or eighteen, I definitely would’ve met the criteria for dependent personality disorder. Not because I wanted others to do stuff for me or because I claimed support I didn’t really need, but rather because I allowed others to take responsibility for my life. Conversely though, practically, I thought I had to be extremely independent, never asking for help, for fear of losing other people’s approval.

Until my mental crisis of 2007, I let my parents rule my life. That may be normal’ish for someone at that age, but it wasn’t healthy. Then when I went into the mental hospital, I let my social worker make decisions for me. She was a very authoritarian person, threatening me with forced discharge from the hospital or guardianship if I didn’t do as she wanted.

Then, of course, I let my psychologist on the long-term care unit make decisions for me. Ironically, when she diagnosed me with dependent personality disorder in 2016, she used as one of the reasons the fact that I wouldn’t openly disagree with her. I told her half-jokingly that I assumed she’d remove my diagnosis again if I fought her hard enough on it. She wouldn’t. Her diagnosing me as dependent was based on her screwed beliefs about disability and mental health.

I am now 32. I have the most supportive care team I could wish for. However, if I ever get to deal with less supportive staff in my life again, I know I can and must stick up for myself. I cherish Leonie, my fights-like-a-lioness insider, who emerged when I most needed her, when fighting my psychologist on the DPD diagnosis. I have a right to be myself. I am not dependent on anyone for making my decisions.

How My Friends and Family Would Describe Me #Write31Days

Posted on by Astrid

Welcome to day ten in #Write31Days. Today, I’m writing on how others see me. The prompt from The Self-Exploration Journal I’m basing this post on asks how my family and friends would describe me. They probably assume that my family are mostly supportive. My parents are not. But it still helps to look at how tey’d describe me to get to know myself. I am going to list a few qualities I’m told I possess.

1. Strong-willedness. Most of my family and friends agree that I’m pretty strong-willed. This can be a positive thing or a negative thing. I tend to fight fiercely for what I think is right. On the other hand, what I think is right is not always what others want.

2. Intelligence. My father pretty much reduces me to the three digits of my measured verbal IQ at age twelve. It’s 154, if anyone’s interested. My IQ was measured again last year and was down to 119, but my parents feel I wasn’t trying my best then.

3. Determination. Some of my friends view me as quite a go-getter. Other people tend to think I’m quite the opposite. It tends to depend more on their view on my disabilities than on me.

4. Humor. Way back in like 2005, my psychologist asked for my parents and sister to each come up with three qualities of me. My sister came up with my sense of humor. It tends to be pretty dark and cynical. I remember, when I had just been hospitalized on the psych unit, already cracking jokes about the differences between the patients and the staff.

5. Manipulativeness. I just had to list this one. Particularly my parents describe me as manipulative. In a sense they’re right. Then again, what strong-willed, determined person isn’t manipulative in the face of authority figures telling them what is best for them? I think that being manipulative isn’t necessarily a negative thing. All communication is in some ways manipulative, as its aim is to influence others. So can I just say I possess a bit of healthy manipulativeness?

What qualities would your friends and family say you possess?

A Letter to My Younger Self #Write31Days

Posted on by Astrid

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?