Quality of Life: Its Impact on Me #AtoZChallenge

Hi and welcome to a late day 17 in the #AtoZChallenge. The letter Q post was what got me to quit the challenge last year, as I kept making up my mind about what I wanted to write about. Same today, until finally my husband suggested quality of life.

Quality of life is a public health concept determining the effects of health conditions or treatments on people’s functioning and wellbeing. It is a commonly-used term in assessing people a long time after an illness or medical treatment happened, to determine if treatment is worthwhile. For instance, in the mental hospital, we were expected to fill out quality of life assessments twice a year to determine if treatment was helping us.

Quality of life is subjective, but it is often tied in with objective measures of functioning. For example, someone who is unemployed is expected to have a lower quality of life than someone who has a job.

I feel very conflicted about the concept of quality of life, as in some cases, it is used to justify euthanasia or withholding of life-saving treatment. This is particularly the case with babies who are born prematurely. Here in the Netherlands, not all babies who can medically be saved, will be, as with those born under 24 weeks gestation, it is deemed that the risk of poor quality of life later on is too high.

I, having been born at the borderline of treatability in 1986 at 26 weeks, have always been concerned with this issue. In this sense, a comment by Dr. Fetter, who coincidentally was my treating neonatologist, in 2004, is striking. He said he sometimes meets former preemies whom he has saved about whom he thinks: What have we done?!” I was at the time 18 and just about to realize that I wasn’t going to be the successful university professor my parents hoped I’d be. I wondered whether I’d be seen as one of these “what have we done?” cases.

I’ve had some debates with my parents about quality of life. When I was in the NICU, my father asked Dr. Fetter what they were doing, setting the conditions so that I may survive? “No,” the doctor said, “we’re just keeping her alive.” He (or his nurse) added that, if my parents disagreed, they’d lose custody of me. My parents were legitimately concerned with my quality of life.

Now that I’m 32 and no longer live with my parents, and having told this story multiple times, I can somewhat distance myself from the feelings that come with this. Before this, I’d often feel that I had to prove I met my parents’ standards of a good enough quality of life or I’d sort of retroactively be left to die. This is, of course, nonsensical.

Premature Birth: Living with “Preemie Syndrome” #AtoZChallenge

Welcome to day 16 in the #AtoZChallenge. I am feeling very uninspired and unmotivated once again. In fact, when my husband suggested I postpone today’s post to tomorrow and do it on procrastination, that felt tempting for a bit. Instead, I am doing it on the effects of premature birth.

I was born at 26 weeks gestation. This means I was over three months premature. I weighed only 850 grams. I had to be put into an incubator and had to be on the ventilator for six weeks.

I already shared in my B and C posts about the effects of my premature birth on my eyes and brain. Retinopathy of prematurity caused me to go legally blind. A brain bleed, called an intraventricular hemorrhage, caused me to develop hydrocephalus and possible cerebral palsy.

Because some preemies have a ton of hard-to-explain issues that fall under no one particular diagnosis, the members of the PREEMIE-CHILD mailing list coined the term “preemie syndrome”. This is of course not a real syndrome, but it is used to describe the fact that many children who were born prematurely fit into multiple boxes of disability to a certain extent, but may not meet the full criteria. For instance, some children’s motor impairments are too mild to be classified as cerebral palsy. Mine might be.

It is known that preemies are at an increased risk of developing neurodevelopmental disorders such as autism or ADHD. Then again, some clinicians don’t diagnose these conditions in preemies, as they reason this is somehow a different condition. I am not sure how I feel about this, as I don’t care about the exact syndrome but more about the symptoms. This was exactly what my psychologist told me to do, and then she changed my diagnosis for all kinds of weird reasons. But I digress.

I don’t mean “preemie syndrome” as yet another label to identify myself with. It’s not that simple. It’s just that we tend to fall through the cracks and I want to prevent that.

Overeating and Overweight: My Relationship with Food and My Body #AtoZChallenge

Welcome to day 15 in the A to Z Challenge. The O is, for whatever reason, a difficult letter. I didn’t have an inkling what I was going to write about until today and then made up my mind several more times. I finally settled on two O words: overeating and overweight. Today, I am going to describe my struggle with emotional eating.

I remember when I was as young as five stealing candy from my parents. So did my sister, but I was always the one initiating it and taking the most. My parents thought it was funny.

Despite this, my diet was relatively healthy until I enrolled into mainstream secondary school at age thirteen. Then, my eating quickly got out of hand. I ate sausage rolls every single day. I also bought large amounts of candy every week, which I’d eat in one sitting. My parents noticed, but other than giving me a bit of a talking about it, they didn’t help me change my behavior.

I don’t really know why I overate in the first place. It was more of a habit, an addiction perhaps, than that it was tied to clear emotional distress. Of course, I suffered chronic stress, so that may’ve contributed.

I had some ritualistic behavior around food too. I didn’t know a thing about calories, but I wrote down everything I ate. This was often ended with a piece of self-hatred. It was true t hat I ate too much, but I made no attempt to change it other than by berating myself for it.

I was curvy from early secondary school on, but always maintained a healthy BMI somehow. This didn’t change till sometime in 2012. I rapidly started gaining weight and continued to gain weight until the summer of 2017. Then, I tried to lose weight. I lost about 10kg and then started gaining again. I haven’t been weighed in in several months and am pretty sure that, though I am not where I was in mid-2017, I’ve gained some considerable weight.

I honestly don’t know how I feel about this. I don’t like the way my body looks and the fact that I am at increased risk for illness and premature death. However, in a sense, I’m too lazy to really do something about it. It’s true that, once again, I experience a ton of stress and I think about overeating on a daily basis. However, I can resist the urge most days. I don’t eat the whole can of peanut butter or something. In this sense, I have the willpower to keep from bingeing. I would really love to get myself to stop doing it altogether. Since tomorrow is my usual shopping day, I am resolving here not to buy myself candy this week.

Names: The Story Behind My Name #AtoZChallenge

Okay, it’s time for day 14 in the #AtoZChallenge and I’m feeling incredibly uninspired. That is, I have a ton of ideas floating through my mind, but none that I can get ahold of. For this reason, I am choosing the same topic I used last year for my letter A post for the letter N. I am going to share the story behind my name.

I used to be very interested in names. I still am to an extent, but I don’t know nearly as much as some of the onomastics (namesakes) bloggers I know. I know what my name means only because I googled it last year. In fact, when I was still big into names, it was more a matter of listing as many interesting and foreign names as possible.

I have no middle name. My name is just Astrid. Because I was born prematurely, my parents didn’t yet have a name picked for me when I was born. For this reason, my incubator was for a few hours labeled “Baby Van Woerkom”. My father was so annoyed by this that he quickly came up with a name and that became Astrid. I am supposedly named after Swedish Author Astrid Lindgren.

Astrid means “beautiful god” or something like that. It is derived from norse mythology.

I at one point asked my mother what she’d have named me had I been born a boy. She said “Lennaert” and wasn’t sure how to spell it. I am currently using the Belgian spelling (I think). My father preferred “Leonard”, which I think is much better. Still, I”m glad I was named Astrid.

That being said, I’d like to have a middle name. In my teens, I variously used Elena (which matches horribly with Astrid) and Kirsten as my chosen middle names. Both are alters in my system, the ones most active at the time. I don’t think I can choose a middle name though, in case someone in my system would like to claim it. I don’t want to play favorites, after all.

Multiplicity: Living with Dissociative Identity Disorder #AtoZChallenge

Welcome to day 13 in the #AtoZChallenge. I had today’s theme in mind for a while, but then I realized I already shared about my experience of being multiple in early March for DID Awareness Day and Plural Pride Day. Several other possible topics floated through my mind, but none felt right. So instead of choosing a topic I don’t know what to write about anyway, I”m choosing multiplicity again. I will try not to repeat myself in this post. As such, I recommend those unfamiliar with dissociative identity disorder read the post I wrote last March first.

We are a system of, last time I counted, 26 alters. Most are female, ranging in age from one month to 42-years-old. Each has a different role in our system (the whole of me). We don’t subscribe to rigid categories of alters. Like, the currently most scientifically proven theory of dissociation distinguishes between apparently normal parts (ANPs) who do the daily living and emotional parts (EPs), who are stuck in trauma time. Though most of us can be put into one of these two categories, we prefer to refer to them by different terms. We for a while tried dialectical behavior therapy (DBT), in which the different states of mind are called rational, emotional and wise mind. We see the ANPs as rational mind, the EPs as emotional mind and wise mind would be if all these parts can constructively cooperate.

Another way of distinguishing alters is by categories such as protector, persecutor (often a perpetrator introject), inner self helper, etc. We do have an inner self helper of sorts. Other than that, our roles are more complex than these. I mean, some of our protectors can be highly destructive relationally.

As you may know, dissociation stems from severe, repeated trauma in early childhood. This used to be thought to only encompass sexual and ritual abuse, but more and more people are realizing that physical and emotional abuse and neglect can also cause DID. There is no evidence that the severity of one’s trauma can predict the extent of dissociation. For example, we didn’t endure major sexual violation at all, but still have a pretty large system. DID is largely seen as an attachment-based disorder now, so insecure attachment early on could predispose one to further dissociation even in the event of relatively “minor” trauma. I, for one, was at a disadvantage already due to being born premature.

I also think that people on the autistic spectrum are more likely to develop DID than neurotypicals, because living in a neurotypical world predisposes us to a lot of trauma. I remember once, when in a Dutch DID community, being told that autism is so pervasive a disorder that it keeps us from developing multiple personalities. There is absolutely zero evidence for this.

I had a nurse practitioner’s appointment last Thursday. At the end of it, we got to debate the end goal of treatment (even though I haven’t even been formally diagnosed with DID yet). The three phases in treatment are stabilization (learning coping skills and internal cooperation), trauma processing and finally integration. There are some DID therapists who believe merging of all alters is a requirement for completing DID treatment. Others mean rehabilitation into society when they say integration. We prefer cooperation to a full-on merger. We wouldn’t mind if alters merged spontaneously, but we have zero interest in forcing it.

Love: How I Met My Husband #AtoZChallenge

Welcome to the #AtoZChallenge day 12. Today I am going to share a positive story, because I am going to write about love. I have known my husband, Jeroen, for 11 1/2 years and love him to pieces. I want to share how we met in today’s post.

In September of 2007, I was living on my own in Nijmegen. I struggled a lot and felt extremely lonely. I at the time frequented a message board, where I posted that I felt alone. Jeroen was on this forum too. He had been wanting to expand his social circle, so he had decided to get to know some fellow forum members better. He read my blog, which I’d kept on WordPress since early 2007. From that, he decided he wanted to meet me. He sent me a PM asking to have a coffee or tea somewhere in Nijmegen. I accepted.

At first, I was unsure whether I’d be safe. What if Jeroen wasn’t the 18-year-old guy he claimed to be? To be honest, I didn’t know much about him from the forum even though he was an active member. He offered to meet me at the forum meetup in Utrecht, but I didn’t have the spoons to travel there, so I agreed to see him at the bus stop closest to university that the bus I knew drove by.

On our first “date”, we were both stressed. I fell off a step and dropped my coffee. When we sat down on a bench, he asked what type of music I liked. I answered “world music”, as I mostly listened to Latin American music.

After our first time meeting, he PM’ d me to tell me he had mixed feelings about it. So did I. But a few weeks later, he again PM’d me to ask whether we could meet again and I invited him to my apartment. That was probably a bit weird, but I knew no other place in Nijmegen.

When we had just planned our fourth “date”, I was admitted to the psychiatric hospital. I didn’t have his phone number, nor did I have Internet access. I gave my support worker my login details for the message board and asked her to contact Jeroen.

A few weeks later, my father called asking whether he could give Jeroen my phone number. I agreed. Jeroen had found my father’s E-mail address through the whois of his website (that he doesn’t do a thing with). I”m so glad he was (and still is) such a tech savvy person and didn’t give up.

It took us six more months from that point on to agree that we would be calling our involvement a romantic relationship. I am so glad I eventually agreed to love him back, as he’d been the first to say he was in love with me. We will be celebrating our 11-year anniversary of being a couple next month. We got married on the day we knew each other exactly four years on September 19, 2011.

Kids: Being Childless Sort Of By Choice #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.

Job: What I’d Want to Do If I Were Employable #AtoZChallenge

Welcome to day ten in the #AtoZChallenge. As with most difficult letters, I’ve had a theme word for today’s post in mind for a few days but wasn’t sure how to go about it. I am pretty tired already, so this will be a bit of a random ramble.

I am unemployable according to the Dutch social security administration. The guidelines for this were revised in 2015 and I was scared that I’d be deemed employable. After all, the guidelines say that someone who can do at least one task that is part of a job (so not a full job) and who has basic employee skills, is often employable. These skills that are part of a job, include for example doing the dishes. I thought I could do this until my husband informed me that I can’t. He also felt I didn’t have basic employee skills such as coming on time and accepting leadership. Apparently, the social security people agreed.

Until I had my major crisis at age 21, I thought I’d be perfectly employable and not just by the current standards. I was convinced I’d be able to have a regular, in fact high-level job. I studied linguistics and wanted to become a speech-language pathologist.

If I were to design my ideal job, I’d however be a type of social worker with some educational psychology involvement. I would be the person to find out what people in complex care situations really need and try to deliver that. Of course, with my poor social-communicative skills, I will never be a social worker. Educational psychology is also pretty much inaccessible a field to the blind because of its heavy reliance on statistics.

I think I’m pretty good though at coming up with creative solutions to problems at least when they are within my field of interest. I can be critical of my staff and often ask them why they do things a certain way. They are not always able or allowed to tell me, as I’m just a client. However, if I were a support worker, social worker or the like, I would not run into this.

Ever since I was old enough to be aware of my own unique situation within the care system at around age twelve, I’ve been wanting to be this kind of ed psych/social worker mix. I was convinced I could help prevent other people in similar situations to mine from falling through the cracks.

I tried to study applied psychology at college one year. With this one year behind me, I could’ve chosen a major such as social work or psychodiagnostics. I didn’t, after all, because my communication skills teacher told me I would be passed on the oral test if I didn’t continue in this field. This feels a little sad to me, but I still have the capacity to learn on my own terms. I will most likely never be employable, but I can still learn new things in this field.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

Healing From Childhood Trauma: Progress I’ve Made #AtoZChallenge

Welcome to the #AtoZChallenge, day eight. It’s already nearly 9PM as I start writing this post. I wasn’t home from day activities till 5PM, then had dinner and then drove 50 minutes one way with my husband to pick something up he had bought. On our way back, we stopped by McDonald’s, which was fun.

Anyway, today’s theme is healing. I was inspired to choose this theme by yesterday’s post, in which my final goal was to heal from my childhood trauma. Let me share today how far I’ve come on my journey.

My trauma-based symptoms first became fully apparent in 2009 or 2010. I had moved from a locked acute psych unit to a resocialization unit in early 2009. Once I developed trust in my staff, I apparently felt more ready to uncover the trauma-based conditions I’ve been living with all my life. You see, my trauma started early on and is in some respects ongoing.

When I started to open up about my symptoms, it still took a long time for them to be diagnosed as first dissociative identity disorder and PTSD and later borderline personality disorder. Borderline personality disorder shares a ton of symptoms with complex PTSD and I think that’s what I have.

I have never been in formal trauma therapy. The reason is that, first, it was hard to find a therapist with expertise on DID. Once I’d found one, my diagnosis had been changed and I was assumed to be making it up.

As a result, I’ve done most healing on my own. I got the book Coping with Trauma-Related Dissociation as soon as it came out in 2011. I worked through some of it on my own, but that wasn’t helping much. Talking a lot about my experiences was.

After I’d been talking through my experiences for a long while with my resocialization unit staff, my classic PTSD symptoms started to fade. Unfortunately, they’ve been back to an extent lately. However, my emotion regulation issues are a lot less pronounced.

I still have dissociative symptoms. Accepting them and validating my alters has helped me manage these symptoms.

Since I experience ongoing stress that reminds me of my trauma, I don’t expect to find the peace to fully heal anytime soon. However, I really hope I can continue to make progress.