Re(dis)covering My Creative Self

Posted on by Astrid

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.

Mutism or Manipulation?

Posted on by Astrid

When I was a teen, I’d often go mute whenever certain personal topics of discussion came up. My mental health was such a topic. Much as I wanted to speak, my mouth wouldn’t form the words I wanted to tell my teachers or other people who intended to help me.

Even though I felt intensely anxious, my silence was commonly viewed as an act of rebellion. A way of manipulating those around me into, well, I honestly don’t know what.

When my parents and high school tutor had finally agreed that I needed professional counseling – or rather, my tutor had convinced my parents of the need, I assume -, my tutor informed me that the counselor had to meet certain very specific requirements. He or she needed to know blindness, because, well, I’m blind. The second requirement, I can’t remember, but the third was that he or she had to be exceptionally intelligent. The reason for that one was the fact that I, too, was supposedly extremely intelligent. If the counselor wasn’t smart enough, my tutor explained up front, I’d outsmart them with my manipulation. By this, he meant my so-called refusal to speak.

To this day, I am still unsure as to what made him think my silence was an act of willful defiance. Of course, everyone manipulates others at times, but I am pretty sure my mutism wasn’t – still isn’t – part of it.

This post was written for today’s Word of the Day Challenge, for which the prompt is “silence”, as well as E.M.’s RWP, which is “rebellion”.

Annoying Things Enneagram Type Fours Do and Say

Posted on by Astrid

Hi everyone. I badly want to write, but am feeling a bit melancholic and yet not interested in writing a long navel-gazing post. Instead, I am going to reflect on the annoying things enneagram type Fours say and do. I saw this video a couple of weeks ago on YouTube. Watch it too if you’d like.

1. Fours are prone to melancholy. Oh, wait, I just said that. It can indeed turn to melodrama if it lasts too long, with me crying for no apparent reason or dwelling on negativity forever.

2. Fours struggle with dissatisfaction in their lives. The YouTuber here says that in relationships this can particularly be an issue, because Fours keep looking for the ideal soulmate that probably just doesn’t exist. I have never looked beyond my husband for a better, more perfect partner. Maybe this means my husband already is my perfect soulmate. Still, I can relate to this thing, as I always look to improve my life by improving my external circumstances rather than myself.

3. Envy. Yes, so yes. I always envy people who live in better external circumstances than me. I don’t tend to show it outwardly towards the person I’m envious of, but it’s there nonetheless.

4. Manipulativeness. Well, uhm, yes. I just told my nurse practitioner on Monday about a recent situation in which I was acting confused, but it was probably manipulation. I will go a long way to maintain relationships.

5. Fours may disappear and go radio silent for days. This is the only one out of this list I cannot relate to. In fact, though I do really try to push some people away by running off or ignoring them, this rarely lasts longer than an hour or so.

6. Fours have a hard time being around overly happy people. Or just generally people who are happier than me, in my case. I can’t stand people trying to distract me when I’m down and I usually can’t stand overly cheery people at all. I blame sensory overload, but maybe that’s not entirely true.

7. Fours want to be seen as special or different. Well, duh! I always look for ways to stand out, be it positively or negatively (usually the latter, honestly). In this sense, my parents were probably right when they told my psychiatrist that I’d been looking for ways in which I was different (other than blindness) ever since childhood. Honestly, though I do see the annoying aspects of the other things listed above, I don’t even fully see how this one is annoying. Well, maybe it can be seen as us Fours putting ourselves above everyone else. I’m not sure.

Confronting My Dependent Shadow Side

Posted on by Astrid

This afternoon, I downloaded a small collection of shadow work-based journaling prompts. One of them is to write about the time I felt most offended by someone. What did that person say or do? And more important, what was my reaction? I am encouraged to focus mostly on the emotions involved rather than the mere facts.

The first thing that came to mind, was my former psychologist diagnosing me with dependent personality disorder. This, though, didn’t really offend me: it scared me. After all, she claimed not just that I was being passive and clingy, as people with DPD often are, but that I was misusing care. I, obviously, disagreed and feared losing my care because of her diagnosis. This, indeed, did happen about six months later.

The moment I felt most offended though, was the moment in June of last year when my husband said he thought I might have DPD. He may’ve forgotten that this was the exact diagnosis my psychologist had given me in order to kick me out of the psych hospital, since he did not propose I move back in with him. His reasoning was, however, the fact that, even with one-on-one support for most of the day, I still struggle.

I felt intensely triggered and scared again, but also angry. However, I wasn’t necessarily angry with him, but with my own dependent side. After all, maybe, just maybe, he is right indeed.

Deep down, I do know it is crazy to want – to feel I need – one-on-one attention all of the time. I don’t even want it, truthfully. Right now, I’m very content being by myself. But then again, why do I feel so anxious some of the time when my staff leave? Why can’t I make simple choices? Why do I need my husband to take responsibility for any major parts of my life? These are telltale DPD criteria!

I am not even scared of the diagnosis itself. Diagnoses are just labels. But I am scared of losing the care I have now, like I did in 2017. And then the little voice, my independent part, is telling me that I coped just fine. I mean, I know I took two overdoses of medication during my first six months of living with my husband, but wasn’t that just manipulation?

Couldn’t I have a much better, much richer life if I unlearned this intense fear of needing to fend for myself? Yes, yes, yes, I could! But does unlearning this fear mean being given a kick in the behind and being forced to live with my husband again? Maybe there are steps in between. Like, today I poured myself a glass of fruit-infused water, spilling a little over myself, but I did it anyway. I felt intense anxiety, because I knew my staff noticed and maybe she’s going to expect me to always be able to do this independently. Then again, so what? Then the worst thing that could happen is I can’t get fruit-infused water if this staff is working my shift and I don’t feel like pouring it myself. Is that so bad after all? And just to say, the staff didn’t even tell me to pour the drink myself. I just noticed the bottle was in front of me and I decided to try to do it. I could’ve asked her to pour the water for me, in which case she’d likely have done so. She is a staff who generally encourages independence, which sets off my demand avoidance. However, the fact that I not only did something independently I wouldn’t normally have done, but took the initiative rather than being encouraged (read: pushed), gave me a confidence boost.

#WeekendCoffeeShare (January 30, 2022)

Posted on by Astrid

Hi everyone. I’m extremely late joining in with #WeekendCoffeeShare this week. I already had all my coffee for the weekend, in fact, so the title of my blog post is rather off, but oh well. The linky’s still open for another nine hours, so I’m going to take advantage of it and participate. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing that the weather is slightly better than it was last week. It’s warmed up a bit, at least. That being said, we’re supposed to get rain all of next week, so I’m probably still not going out much.

If we were having coffee, I’d tell you that today is my father-in-law’s 65th birthday. Retirement age is now 67 here I believe, so it’s not significant in that sense. At least, my father-in-law is keeping his dentistry practice until he’s 67. My husband did buy him a beer and I sent him a text, but that’s as far as birthday celebrations go, I think.

If we were having coffee, I’d share that I’ve been creating some quite interesting polymer clay things lately. One is a flower fairy, another a kawaii pig pendant and another a daisy. That daisy didn’t turn out as good as I’d like, but my husband did say he liked the fairy. I haven’t baked any of the things yet.

If we were having coffee, I’d use the rest of my post to whine about how my anxiety is still through the roof. I hardly slept at all Friday night. Then yesterday, I had an okay day until in the evening a fellow client started screeching. I tried to get the staff’s attention but they wouldn’t react until I grabbed the other client by the arm, then only told me that said client, who is non-speaking, couldn’t help her behavior. I’ve been feeling extremely unsettled and unsafe in my current care home ever since. I am all the more triggered because staff keep repeating that I’ll likely feel unsafe in any other place. They probably say it to mean every other place has its drawbacks too, but I take it to mean that my anxiety is my problem and I’m the one who needs to change so I just need to suck it up and stop complaining.

I’ve also been thinking about how I had fewer crises when living with my husband than now that I live in the care facility. Isn’t this telling? I mean, doesn’t this mean that I should get a kick in the butt and go back to living semi-independently? Granted, I had far fewer moments of joy too, but I’m not sure that matters if I was less dependent back then. Isn’t the goal independence, after all? Eek, that scares me, and that in turn should be quite telling, right? I’m probably just one giant mess of a dependent, manipulative, attention-seeking monster.

Okay, if we were having coffee, I’d end on a positive note and say I had a delicious tuna wrap today when going to the Subway drive-through for lunch with my husband. I also had one half of a Bueno candy bar, as my husband had bought it at the supermarket. I originally wanted to refuse as it isn’t on my food plan, but the dietitian had said exceptions are okay.

How have you been?

A Very Intense Day Today

Posted on by Astrid

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Three Years Out Today!

Posted on by Astrid

Yay, I’m three years out of the looney bin today! In a way, I’ve come so far. I’ve genuinely tried living independently with my husband. I mean, each time I was in a crisis in 2017, I told the consulting psychiatrist seeing me in the hospital that I was fine going home. I asked for more help each time, which I was given. This little (or not so little) voice inside my mind still tells me those overdoses were manipulative and I should not have gotten the help I asked for. They were impulsive each time, but at the time of taking those pills, honestly I didn’t think: “If I do this and survive, I’ll ask for more help.” Truthfully, I didn’t think much at all.

Then in early 2018, I had a crisis at day activities. That was what started me on my journey of admitting I truly couldn’t – or wouldn’t, as this not-so-little voice tells me -, live independently. At first, when the Center for Consultation and Expertise consultant asked me what I wanted, I said I wanted to live close by a living facility so that I could walk over or call for support. On September 20, 2018, I eventually told my support coordinator that I’d really want to go into a living facility with 24-hour care. She then called the consultant, who was still willing to help us on this journey.

We filed the request for long-term care funding in December of 2018. It was denied on February 27, 2019 on pretty weird grounds. We appealed and our appeal was granted on June 4, 2019 on actually about as weird grounds. I mean, the Long-Term Care Act fails to recognize the implications of multiple disabilities, but how the appeal lawyer managed to find a workaround, still baffles me. I don’t care though, as unless the law changes, we won’t have to apply again.

And here I am, nearly eight months into living in the long-term care facility in Raalte. Still, this not-so-little voice nags me each time I try to open up about my needs. My mother’s voice speaks to me again. When I’d just landed in crisis in November of 2007, she called me to reprimand me about going into the psych hospital. “You can’t even wipe your butt without your support worker’s help,” she said. It wasn’t true then and it isn’t true now, but I feel ashamed each time I ask for help, particularly with personal care stuff.

I had a session with my CPN from mental health this afternoon. I do an eHealth module on self-image, so we got talking about that. I got to say that one of my main reasons for having a negative self-image, is that each time I think positively of myself, or validate myself, this not-so-little voice tells me again that I’m manipulative. This seems to be at the core of many of my issues and yet I cannot even say rationally that it is certainly not true.

It’s My Choice

Posted on by Astrid

Yay, I got accepted into a living facility. The one in Raalte that I visited about six weeks ago. I will hopefully move before I’d otherwise move to the house my husband and I are buying in October.

It is mostly very exciting. I love the place and am really glad that the physician, psychologist and the team all agreed that I’d be a good fit for the place.

But… There is of course a but. I haven’t told my parents yet. I told them I got long-term care funding, but told them it makes it possible for my husband and me to live together wherever we want, not being restricted by our local authority. It could do that too, but that’s not the plan. And I didn’t tell them I’m moving into a care facility.

They will hopefully say that it’s my choice. That’s the best response I can get. Not that they support me, but that it’s my choice and I’m an adult so I’m allowed to make that choice. After all, they still feel I don’t need 24-hour care. They still feel that I’m just blind and extremely intlligent and using my IQ to manipulate the world into providing me care.

Well, so what? Of course, I don’t want to be manipulating everyone into providing me care. I don’t want to be a little attention-seeker who thinks the world owes her a living. I wish I could snap out of my need for care and live a successful life by non-disabled standards.

At the same time, maybe if I didn’t care that I’d have to be sedated to the point of sleeping all day, I could do with less care than I’ll be getting in the living facility. As someone once asked, how can you literally need 24-hour care, since you’re (hopefully) sleeping during the night? This person was by no means trying to suggest that sedation could lessen my care needs, for clarity’s sake, but it could. And I’m making a choice not to sleep the day away. If you think that’s me being manipulativve, fine by me. That’s your choice.

I am writing this post for today’s Daily Addictions. The prompt is “Choice”.

When This Is All Over: A Letter From My Future Self

Posted on by Astrid

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

Silence #SoCS

Posted on by Astrid

#SoCS Badge

I read Linda’s prompt for Stream of Consciousness Saturday (#SoCS) almost every week, but I’m not often inspired to write something for the topic. Today though, the theme is “silence/silent” and I was immediately reminded of something. As a teen, I would often go silent or “locked up inside”. I couldn’t speak. This would last for minutes to sometimes an hour. It was related to stress. I would often fall silent when talking to my tutor. He was a kind man, but he acted more like a counselor than a teacher and I couldn’t cope with his questions.

At one point, this tutor had decided he could no longer help me and he was looking for a psychologist to refer me to. He said this shrink would have to be very intelligent, because so was I. He added that he felt I was manipulating with my silence. Well I wasn’t. I was scared.

I learned when I was around seventeen about selective mutism. This is a condition that’s related to social anxiety, in which children (usually preschoolers or a little older) can speak, but won’t in certain situations, such as at school. The diagnosis is not to be made in a person who has autism, unless it is very clear that the symptoms are not merely due to autism. I was at the time not diagnosed with autism, though I was self-diagnosed. I joined support groups for parents of kids with selective mutism anyway. That’s where I learned the expression “locked up inside”.

I rarely have nonverbal episodes like this now, but I still do on occasion. Usually in this situation, a younger part is trying to come forward. I can often hear chatter in my head, but it somehow won’t cross my lips.

This situation is different from going “blank” inside, when I can still function but seem not to have any thoughts in my mind, or am detached from them. These moments usually are a lot briefer, lasting from seconds to minutes. They are also related to dissociation, like “zoning out” or something.

The tutor who witnessed most of my nonverbal episodes, indeed eventually referred me to a psychologist with the blindness rehabilitation center. Said psychologist had been educated in the Rogerian school, which is not really suited if the client is nonverbal for the most part, as I was at the time, at leasst in session. I continued to experience these nonverbal episodes for years when seeking mental health help. Now I am thankful I can sometimes talk openly in session. Not always or often, but sometimes.

It helps that my nurse practitioner asks the right questions. He phoned me yesterday for a check-in. He asked directly about possible suicidal thoughts, so I was able to be honest and say I had them, but not as badly as I’d expected given the latest in my long-term care application. I’m mostly glad I have him.