To Live a Meaningful Life

Posted on by Astrid

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Developing My Fighting Spirit

Posted on by Astrid

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

Dreams I Had for Myself as a Child #Write31Days

Posted on by Astrid

Welcome to day 18 in #Write31Days. Today’s post is all about dreams and life visions. Specifically, I am sharing the dreams I had for myself as a child.

The first dream I remember having about what I’d be when I’d grow up, was a writer. I may’ve said as a KIndergartner that I wanted to be a princess or whatever, but as soon as I could write with some confidence, I wanted to make my career out of that. I remember my parents telling me pretty early on that writers usually don’t make a living writing, but I didn’t care.

As I said before, I started out wanting to write fiction. I didn’t keep a journal consistently until I was thirteen and fiction was all that I knew before then. I didn’t get access to the Internet until age fifteen, but by the time I had an Internet connection, I was hooked on non-fiction.

Another dream I had for myself as an older child and teen, was to become a teacher. My ideas varied as to which grade or subject I’d like to teach. I definitely looked up to my teachers, so it’s no surprise I wanted to be one.

When I was around twelve, I started to deveop a dream of becoming a psychologist. I wanted to help children who were likely to fall through the cracks, as I had a feeling I was. I started hoping every episode of my parents’ favorite news program had a feature on kids with psychological problems. Once, there was an episode on about autism and I was hooked. This was nearly ten years before my own autism diagnosis. I had a feeling I was somehow like the boy in the program. Similar with a seventeen-year-old girl who was being restrained in a psychiatric hospital in around 1997. She was too smart for intellectual disability services but didn’t belong in psychiatry either. Something clicked with me, but obviously I couldn’t put my finger to it. I still really can’t.

When I was sixteen, I developed another dream. I wanted to study in the United States once in college. I would be majoring in American studies at university in Nijmegen, which'd offer motivated, talented students the opportunity to study in the U.S. for six months in their third year. I was at the time pretty sure I'd be talented enough. I loved reading up about American cities on City-Data.com.

Looking back, obviously, I didn’t make any of my dreams come true. I write, but not for profit and I don’t intend on it ever at all. I have some education in psychology, but am nowhere near a degree.

At the back of my mind, there always was that seventeen-year-old girl in the isolation room in the psychiatric hospital. I’ve not become her either, but I’ve come close. Then I rose up above my fate and now I’m an advocate. I’m happy as I am now.

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?

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.

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.