Lessons Learned from Regret #Write31Days

Posted on by Astrid

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

My Heroes #Write31Days

Posted on by Astrid

Welcome to day two in the #Write31Days challenge, in which I share 31 reflections on personal growth. Today, I am going to write about my heroes.

Heroes can be ordinary people or they can be celebrities or historical figures. My first hero is someone I knew in real life: my paternal grandmother. She sadly passed last May at the age of 94, but she lived a positive life up till the last days of her life. She was one to rarely if ever complain. Even when in severe pain, she remained positive.

My grandma married my grandpa in 1948 and gave birth to five children, my father being the eldest. When the youngest was eighteen, she divorced my grandpa. She was fiercely independent, getting a career for herself as a social worker. She traveled a lot and had lots of hobbies. My grandma’s motto was “Do what you want, as long as you don’t bother me”. I am not nearly as resilient as my grandma, but I’m trying to be.

My next hero is someone I never met in real life and never even talked to. She is Cal MOntgomery, a disability rights activist. About fifteen years ago, she wrote an article in Ragged Edge Magazine that changed my life. She described for the first time what it is like to live with the identity-destroying effects of ableism. Her internalized companions Mary and Bruce are in many ways similar to my Jane and Carol. Read this if you think that ableism can’t be traumatic.

Finally, I felt I needed to include a celebrity. I’m choosing Helen Keller. I don’t know that much about her, but I do know that she was an important women’s rights activist. I love many quotes from her too.

My Full Potential

Posted on by Astrid

This week’s Five Minute Friday prompt is “potential”. That definitely has me thinking. Kate Motaung, the woman behind the FMF challenge, wrote about the potential in a nine-month-old child. The potential to become anything. I loved this perspectve.

I am 32-years-old. Does this mean I can no longer grow? Not at all! My full potential is still waiting for me to unpack the gift that it is.

The prompt had me thinking. Often, one’s full potential is determined in terms fo success, of how much money you make, how many college degrees you’ve got, etc. At least it’s in my case. As such, I still do not feel that I’ve reached my full potential.

In other respects though, I have. I have for the most part let go of the limiting power of thhis “full potential” rhetoric that values success over happiness. I would very much like to grow, but not when it’s enforced by other people’s seemingly “objective” standards of what my potential should be.

This, as always, took me more than five minutes to write. I’m not that fast of a writer yet. Maybe I’ll be able to reach that goal at some point. Maybe not. We’ll see.

Leaving the Path Paved for Me

Posted on by Astrid

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regarding going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

The Greatest Moment of My Life

Posted on by Astrid

Today’s Question of the Day on Pointless overthinking is about the greatest moment of our life so far. I already briefly shared it in the comments, but I want to expand on my answer.

The greatest moment of my life so far is the moment my now husband proposed to me. This was June 4, 2010. I was 23-years-old and struggling with the aftermath of a traumatic childhood unfolding itself to me. My dissociative symptoms had become too unbearable to hide and I was slowly beginning to trust my staff at the psychiatric hospital resocialization unit with my feelings. That day, my named nurse invited my then still boyfriend into a room with me and her to explain some of my symptoms.

After that, my boyfriend took me to the place we had first met each other on September 19, 2007. It was a bus stop near the university’s dentistry department that I’d gotten off the bus from my home that day in 2007. Now, they were working on the road there, so we couldn’t sit at the bus stop. Instead, we sat down in the grass and my boyfriend proposed to me. I at first thought he was joking so I replied: “So you think that’s cool then?” He said yes and went on to propose we get married on September 19, 2011. “Mind getting married on a Monday?”

We chose our wedding date based on the fact that it was exactly four years since we first met. Four, for us, is a code word for kissing, because of a kind of wordplay in Dutch.

A week later, my boyfriend asked whether I’d informed my parents yet that we were getting married. I hadn’t, still thinking he had been joking. As such, I never said an official “Yes” to his proposal. That must’ve felt terribly hurtful to him. I told my parents, sister and grandma that evening.

My family’s responses were not overly supportive. My sister said we were a bit young (I would be 25 and my husband 22). My parents said we should go live together first. This is not a requirement for married couples anymore here in the Netherlands. We wanted to marry each other for no other reason than to prove our love. My parents felt, as did some of my professionals, including the psychologist who kicked me out of the hospital to live with my husband, that love didn’t mean much if you don’t live together as a couple. Fine by me, you’re entitled to your opinion, but we’re entitled to ours.

PoCoLo

Next Year

Posted on by Astrid

Last week, I wrote a post based on a journaling prompt from the book The Self-Exploration Journal about where I’d want to be years from now. The next prompt asks us to write about where, given our current daily activities and routines, we can realistically expect to be in a year.

If my daily routines and activities of the past sixteen months, living with my husband, have taught me anything, it’s that nothing is certain. I thought, after my last overdose in October of 2017 that I would be stabilizing now at my old day activities and with my home support. That didn’t work out, because within months I was told I’d have to leave the day center eventually.

Now I’ve only just settled in at my new day activities placement. I am pretty content with how things are there now, but am not sure I feel excited about evnetually going four full days rather than just mornings. I mean, I still struggle a lot with overload.

At home, spending my afternoons alone, I feel awful. This could be depression sinking in again, but I’m not sure.

Realistically, based on my current routines and activities, can I expect to move within a year? I mean, I badly want to, but am even undecided as to how I want to live. Maybe next year I’ll be living in another house with my husband. Maybe I’ll be in supported housing after all. Maybe – most likely – I’ll still be holding on by a thread as I live here.

Mental health-wise, I don’t expect I’ll be doing much better in a year. That’s partly because my mental health issues are rather complex and partly because we don’t have a clear treatment plan that everyone agrees on.

I don’t expect much improvement in my physical health either, though I do hope to be a bit more in shape. Based on my current habits, I cannot expect to be at or near a healthy weight yet, but will hopefully have lost some weight.

I would really like to do some more learning. I tried to learn German for a bit a few weeks ago, but my head spun with all the information. Maybe I’ll be able to do some learning as I go by engaging with the books and blogs I read. I’ll also hopefully keep up the daily writing practise.

9/11

Posted on by Astrid

Today is Tuesday, September 11. It’s seventeen years ago, also on a Tuesday, that the 9/11 terrorist attacks happened. I, like most people, know exactly where I was when I heard the news.

The terrorist attacks happened at around 9AM New York time. This corresponds to 3PM my time. I was in my room at my parents’ house processing the events of the day. Earlier that afternoon, I had been filmed with a hidden camera while riding in a taxi home from school. There at the time was this reality show in which a taxi driver talked to random but thought-to-be-interesting passengers. I, being blind and attending regular school, was definitely thought of as interesting. I didn’t think so, or at least, I wasn’t as eager to show off myself as I am now, so I didn’t consent to the recording being shown on television. I till this day, as open as i may be on my blogs, never consider putting up a video recording of myself.

I had just finished writing my diary entry for the day when on the radio I heard the breaking news of an airplane having crashed into one of the Twin Towers. Then at around 3:30PM, my father called me and my sister downstairs: “New York burning!” It didn’t fully register with me, though I did devote a full diary entry to it in the evening. I was at the time more fascinated than horrified. In fact, if I remember correctly, I was mostly excited about the downward spiral of the exchange index the following Monday. Yeah, I never quite got economics.

I never fully understood at the time how 9/11 would change the world. In fact, in early 2002, I drafted a story, set in 2016, about an Afghan and an American girl, both born shortly after 9/11, becoming penpals. I imagined that the “second generatin”, as I called them, would only still suffer generational trauma. Now I am not at all politically informed, but it doesn’t surprise me at all if the current terrorist groups in Syria are a direct result of the Bush administration overreacting to 9/11. And remember, Afghanistan will most likely not be the free nation I dreamed of in my story draft anytime soon.

Five Years

Posted on by Astrid

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

Years From Now

Posted on by Astrid

As regular readers of this blog know, I’m a fan of journal writing prompts. Today, I found a self-exploration journal on Amazon and, since it’s free, I didn’t hesitate to download it. It’s called The Self-Exploration Journal: 90 Days of Writing, Discovery and Reflection. The first prompt is to write down why you want to embark on this journey of self-discovery. I’m not even sure. I mean, I just write for the sake of writing. I don’t even commonly reread my blog entries, though I did often reread my diary entries when I still faithfully kept an offline diary in the first three years of secondary school. I loved that. Maybe I should make a habit out of rereading some of my blog entries too. But since I currently don’t, I don’t even know that blogging is going to help me discover myself.

I mean, who am I, myself? I see myself in so many fragmented aspects that I’m not even sure who “Astrid” is. All these aspects, parts or identities usually listen to that name, but even as I write this, I don’t feel “whole”. I’m just a part among parts that somehow, in an abstract kind of reality, make up the mind belonging to one body. We have just two hands, both of which we currently use for typing up this journal/blog entry. Which, I might say, is going nowhere.

The second question in the 90-day series asks me to write about how I want to look back on my life ten years from now. Well, I honestly have no idea. Four years ago, I wrote a lettr to my 38-year-old self. I think I may reread it today. Already nearly half of those ten years have passed, but I have no clue at the time what I dreamed about. I mean, three years ago, I did a post as if I was 79 already and looking back at the past fifty years. The only thing I remember that would-be-flashback including was that we’d still live in our current house. Now we’re not even three years on and my husband and I are already thinking of moving.

What does it say of me that I don’t envision that much progress even in fifty years? Does this lack of a truly progressive vision of the future impair my actual progress? Or is it the other way around? That I’ve learned not to expect positive change because the past taught me I’d always fail anyway?

The first time I did a “___ years from now” post was in September of 2006. A psychologist my staff were consulting had asked me where I saw myself in three years. There were, or so I thought, two possible scenarios: one in which I lived successfully fully independently or with just a person reading my mail once a week and was at university and the other in which I needed substantial support. I explicitly wrote that this “black” scenario didn’t have to mean I needed 24-hour care, but that I needed support beyond that which is normal for a blind person.

Three years later, in September of 2009, I had almost two years in a psychiatric hospital behind my belt, of which I’d spent sixteen months on a locked ward. I wrote a flashback then and remarked kind of cynically that stuff couldn’t get much worse than they were now in three more years, or I’d have to be in a homeless shelter or prison. Then, I reasoned, I wouldn’t have Internet access so the whole wide world wouldn’t know. As it turned out, in September of 2012, I was still on the same ward I was on in 2009.

I finally left the hospital in 2017 and live fairly independently with my husband. I guess at this point, I’m pretty content with my life. That doesn’t mean I have absolutley no dreams, but I must admit I don’t generally see these as realistic indeed.

An Eighth Grade Memory

Posted on by Astrid

I’ve been meaning to write a lot, but I can’t. I am having a lot of memories. That’s what they’re supposed to be. I already survived and am now safe and an adult, age 32, living with my husband. I don’t care, this pretty freakin’ hurts. One of my inner teens, Karin, hurts the most.

On November 17, 2000, I hid under a coat rack during recess. I don’t even know why. I mean, yes, I was feeling miserable and lonely. Kids in my class were bullying me and I had no friends. I was mainstreamed at the time, being the only blind student in my school.

My French teacher found me and called for the coordinator. My tutor had just gone on sick leave the day before and never returned to our school. The coordinator would act as my tutor from that point on. He sat across from me in the room where I’d been hiding under the coat rack. He held my hands and said: “Is something wrong?” I couldn’t communiicate. Not speak, not move, nothing. I was completely frozen.

Several months later, by the time my now tutor had become aware that I was feeling left out and lonely and being bullied by my classmates, he organized a class conference. Without me there. My classmates were allowed to say what they didn’t like about me. Then I was supposed to change those things. I was supposed to take better care of my personal hygiene and develop better social skills, so that I’d be less curt.

My tutor died in 2016. He cannot read this now, but my old tutor, the one who went on sick leave just before the coat rack thing, can. She found my Dutch website last year. Granted, it has my real name in the URL and this one doesn’t, but still. Maybe I shouldn’t write this, or publish this. But I want to. I want to get this off my chest.

I want to show that it’s not okay to blame a bullying victim for being bullied, even if the victim “elicits” it by acting weird. It’s good to teach a child about social skills and personal hygiene. I won’t deny that. It’s quite another thing to link that to bullying and say “You bring it onto yourself”. That’s what many people around me did say. That’s victim-blaming and it’s not okay.

Another thing I want to say is, if you wouldn’t subject a non-disabled student to something, chances are you shouldn’t subject your disabled students to it. Another boy in my class was being bullied too. My classmates asked for a class conference similar to the one held about me. The boy didn’t want it and this was respected. I was never even asked whether I wanted a class conference, because apparently, being blind, I was so special that I shouldn’t have a say. For clarity’s sake: I think class conferences like thsi one are an example of victim-blaming whether the bullied student agrees to them or not.