The Greatest Life Lesson #Write31Days

Posted on by Astrid

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?

What Emotions Drive Me to Bad Habits? #Write31Days

Posted on by Astrid

Welcome to day eight in #Write31Days. Today’s post, like last week Monday’s, is yet again focused on emotions. I took another prompt from The Self-Exploration Journal. It asks what emotions drive me to bad habits.

I have a few self-destructive habits, some of which I engage more regularly in than others. For example, I overeat on average at least once a week, but only self-injure by cutting occasionally. Then there are these little habits that I engage in so often that I barely even notice them anymore, such as nail-biting or most recently teeth-grinding. Just a few minutes ago, my husband asked me to stop grinding my teeth.

Basically, I can be pretty sure that the type of emotional state that drives me to engage in all of these bad habits is stress. Stress is usually thought of as a type of anxiety, but it is not necessarily fear that drives it.

I tend mostly to engage in the little bad habits, like nail-biting or teeth-grinding, when not feeling much of a clear emotion at all. Rather, I tend to be in a state of worry, thinking in circles.

When emotions do reach the point where I notice them, they are pretty close to boiling point already. When this happens I may engage in self-harm behaviors or overeat.

When I look closely at what emotion causes me to engage in these self-destructive behaviors, I see that it is usually a sense of loneliness. Loneliness is not an emotion or so I’m told. At least it isn’t a primary emotion. Sadness is and that’s often what’s underneath this sense of loneliness.

Anger can also drive me to engage in self-destructive habits. Usually though, I am angry at something too minor to matter. The emotion underlying this anger is once again sadness.

What emotions drive you to bad habits?

What Is My Body Telling Me? #Write31Days

Posted on by Astrid

Welcome to day seven in #Write31Days. Man, I’m getting tired of this challenge, as it doesn’t look like any of my readers care for it. However, I try to remember what the challenge organizer said, that this isn’t about gaining followers. It is instead a writing challenge to get you writing every single day.

Today I picked yet another prompt from The Self-Exploration Journal. It is: “What is your body telling you?”

I find this a really hard question to answer. I don’t focus on my bodily sensations much, yet when I do, they tend to overwhelm me. I regularly have a meltdown because I simply need to use the toilet. Usually this happens when I am not in a position to find the bathroom independently and the need-to-use-the-toilet sensation has robbed me of my speech. I also commonly have meltdowns because of hunger, pain or being cold.

As I focus on my body, I notice how my mouth hurts from having burned it on a hot snack I just ate. I notice my nose is a little runny.

I have distressing pain in my neck and shoulder muscles. It’s not as bad as it was yesterday, but still bad enough to distract me as I type this post. Good thing that this post is focused on my body.

If I have to guess what my body is telling me with these sensations, it’s probably to take a step back. I was impatient with my snack, thinking I’d need time to write this blog post too so I’d better eat my snack fast.

I’m not sure what the neck and shoulder pain are from. My husband says it’s most likely stress, but is that from doing too much or giving in too easily?

I know about the spoon theory, which describes the limited energy levels of people with chronic conditions. My support worker, who works mostly with people with acquired brain injury, reminded me of it on Monday. This morning, I was quite tired from the mere acts of showering and getting dressed. Yet I still can’t shake that little voice that says that, before I had support, I did these things too and never complained.

So my body tells me to take a break. Now I need to decide whether to listen or overpower its noise with my own and go on.

Where Do I Belong? #Write31Days

Posted on by Astrid

One of the questions in The Self-Exploration Journal is simple, yet not so simple to answer. It is: “Where do you belong?” For today’s #Write31Days post, I am going to attemtp to answer this question.

I am a restless person. Even though I crave stability, I keep fleeing from wherever I am. I can never seem to find a place where I feel I belong.

I must say though, it probably has to do with control. I have a pretty horribly external locus of control. This means that I have a feeling that others or circumstances control my life, rather than life being a bunch of choices I make. This isn’t necessarily healthy, but in y case, it is somewhat realistic.

I grew up with parents who had my life planned out for me. I knew by the time I was nine that I’d leave the house at eighteen to go to university. It scared the crap out of me. Lately, I’ve been feeling an insider who holds these memories.

I left the house at nineteen to go into independence traing. That wasn’t what my parents wanted, but I for the first time in my life showed some major rebellion. Even then, I needed my parents’ albeit reluctant approval to actually take the step.

I continued to consistently seek approval from others for my major decisions. This may’ve been a major reason I got moved into independent living after the training home despite the fact that the staff and I agreed this wasn’t the best possible placement for me. The staff after all, had promised my parents they’d prepare me for independence.

I landed in a mental hospital three months into independent living. By this time, I’d lost every bit of self-determination I had. I didn’t know what I wanted and just let the psychiatrist admit me to the hospital.

I regained a small amount of self-determination over the years of my hospital stay, only to have it all destroyed by my last psychologist. She said I was being dependent, not for letting others make choices for me or for needing their approval, but for demanding care she felt I didn’t need.

Now I’m living with my husband. I don’t feel safe here. Not relationally – my husband is lovely. I mean that I lack the support I feel I need.

So I often flee this place too. I don’t feel like I belong. But will this ever change? Will I ever find the peace of mind to live a stable life without needing to constantly be on the run?

Maybe if I get into long-term care, I will. After all, then I’ll hopefully finally feel safe without the pressure of needing to be re-assessed for care at least every year. Then I can have goals that I can take years to maybe meet or maybe not. Maybe then I will find a place where I belong.

My Greatest Dream in Life #Write31Days

Posted on by Astrid

Welcome to day five in #Write31Days. So far this month, I’ve used a bunch of prompts from various sources already, each with a different perspective on personal growth. Today, I picked a prompt from one of my older collections of journaling prompts, a book of 100 self-help journal prompts by Francie Brunswick that I have in my Adobe Digital Editions. Adobe Digital Editions is no longer accessible with my outdated version of the JAWS screen reader, but I managed to get it working a little with NVDA, an open-source screen reader.

The prompt is to journal about your greatest dream or the ultimate goal you have in life right now. I do have goals, but if I have to be really honest, my biggest dream is to feel mentally stable and safe.

I have suffered with depression on more than off ever since middle childhood. My parents tell me that, before then, I was a cheerful, laid-back child. I still had social and emotional deficits, but they were manageable. According to my parents, my psychiatric struggles didn’t start until I was around seven. They blame it on my becoming aware of my blindness.

I am in contact with an autism-specialized consultant for getting me proper care. She says that many children with normal or above-average IQ and autism get stuck in school at some point. Usually the first point of actual breakdown is the beginning of secondary school. I remember this point really well. One day, in my first year of secondary school, only one month in, I wrote in my journal that I’d rather earn a high level high school diploma in six years than have to settle for a lower level with more special education support. In the years that followed, I kept hearing this inner voice: “YOu don’t want to go back to special ed, do you?”

The next point of breakdown usually happens in college. I finished one year of college only with a lot of support. Then I broke down at university. I never fully recovered.

Over the next eleven years, I resided in general mental health facilities until being kicked out for allegedly being dependent. People had control over my life all this while and I never felt safe. Now I’m away from the controlling professionals and my parents, living with my husband, but I still feel extremely unsafe.

I was originally going to write down my goal more specifically. I was going to write that my biggest dream right now is to get into long-term care. That sounds extremely off though. I’m still not free from the interalized stigma surrounding long-term care. Still, I think I should be too “high-functioning” for it. I’m scared that, if we apply for long-term care funding, the decision-maker will read this blog and say that someone who can write a blog, should not need 24-hour care. That’s a terrible misconception that could cost people their lives. And yes, that includes me.

My Successes in Life #Write31Days

Posted on by Astrid

Welcome to day four in #Write31Days. I use this challenge to write on personal growth. I’m struggling a lot, so as to get myself to think more positively, I decided to take the day one prompt from Lisa Shea’s journaling prompts on positive thinking. It asks us to list our successes in life. This is rather difficult, as my successes are often used against me. For example, the fact that I completed a high level high school, is used as “proof” that I don’t need lots of care. I am just going to write anyway and see where this takes me.

1. I completed a mainstream, high level high school. This doesn’t just show my academic ability, but my persistence too. I hated it with a vengeance from the moment I started it, but finished it anyway.

2. I completed my first year of college. Same shit really. I liked my major though.

3. I tried to live independently. I failed, but I still consider it a success because I tried the best I could. Again, this shows my persistence.

4. I have been a pretty consistent blogger for over fifteen years.

5. I got a piece published in an anthology. In 2015, my piece was published n a book on typed communication by autistic people.

6. I learned to use an iPhone. I thought last year that I may not be able to learn to operate new-to-me technology anymore, but I was.

7. I prepared my own breakfast today and didn’t spill it everywhere.

8. I am surviving. Having been suicidal on too many occasions to count and having run into a little too many other dangerous situations, I’m proud to be alive. Not happy, but proud.

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.