I Am Not a Calculation Mistake

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

Basic Mistrust

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Enneagram Type Four: The Abandoned Inner Child

Over the past few days, I’ve been reading more about the enneagram. Since I figured I’m probably a type Four, I read up on that type first in Helen Palmer’s book The Enneagram.

Let me say up front that Palmer doesn’t show pity for type Fours at all. We aren’t portrayed as the special snowflakes we often see ourselves as. That hurt, but in a good way.

First, Palmer describes the typical dilemma Fours face within themselves. Many remember abandonment or loss in childhood and are constantly focusing on regaining that which was lost. As a result, they constantly find themselves second-guessing themselves.

All Fours are prone to depression, though they may handle it in various ways. For example, some accept it fatalistically and succumb to despair. Others cope by constantly being on the move. That would be me, quite literally. Still others find a type of beauty in their sadness and convert it to melancholy.

When describing the typical Four’s family history, Palmer showed a bit more compassion towards us, but it was mostly through the quotes from type Four interviewees. One of them explained that she was an incubator baby and, while she was not literally abandoned, she did feel that way. Boom, that hit. I was an incubator baby too. Even though I was never literally abandoned – my parents aren’t divorced and I lived with them till age nineteen -, I often felt like I was only conditionally loved.

When I read up on core beliefs and schemas when I did schema-focused therapy back in 2013, I most clearly related to the abandonment/instability schema. I still do. I rarely felt safe with my parents and, after leaving the house at age nineteen, I moved from one temporary placement to another until I moved into long-term care in 2019.

Indeed, like the typical enneagram Four, I keep life at an arm’s length distance. I am always on the lookout for something that’s unavailable. Not really in relationships – I have been happily married since 2011 -, but in all other areas of life, certainly. I find myself constantly looking at another place to live, even though the staff and manager of my care facility have reassured me that I can stay here for as long as I want to. I think a core misconception I at least hold is that I can find happiness by chasing what’s unavailable. That’s not true, of course, but my abandoned inner child constantly looks to be rescued in all the wrong ways.

In the book The Enneagram Type 4, the author asks us how we’ve tried to rescue ourselves and how successful we’ve been. The underlying message is that we can’t and don’t need to rescue ourselves, since God is in control. God, will you please rescue me?

Joining in with the Hearth and Soul link party.

Life Challenges I’ve Overcome

Earlier today, I saw Emilia’s post about challenging life lessons. It was based on a prompt from Listify. I have this book too and thought it’s an interesting prompt indeed. It asks us to list the challenges we’ve overcome in life and explain what life lessons we’ve learned from them. Here goes.

1. I spent the first three months of my life in the hospital. I was born prematurely and had to be in the incubator and on a ventilator for several weeks. Then I spent the remaining time I should’ve been in the womb in hospital. Of course, I can’t remember this at all, but it might’ve caused some early attachment issues.

2. I lost my vision. Okay, I was born legally blind, but still relied on my vision quite a bit until I was around twelve. All official documents say that I lost what little vision I did have at the age of eight, because that was when my parents and doctor decided not to pursue further sight-saving treatment. In truth, though right now I consider myself totally blind, I still have light perception in one eye and had it in both eyes until at least age nineteen. At that interesting age of eight, I still had about 20/1000 vision. Yes, I was considered functionally blind. That’s how sighted people look at it. However, when I attended the rehabilitation center for the blind in 2005, I was told by someone who’d gone from fully sighted to totally blind, that losing the last bit of residual vision was harder than losing most of the sight he’d had before.

3. I endured childhood trauma. I wrote some about this before, but I don’t know whether my family reads this blog, so I won’t go into detail right now. It mostly boils down to my parents not having a clue how to raise a multiply-disabled child and as a result being pretty harsh. None of the trauma I endured was severe, but the long-term nature of it still means I have significant complex PTSD symptoms.

4. I was bullied. At the school for the blind as well as the mainstream school I attended, I was regularly bullied by my peers. It didn’t help that my teachers and parents more or less blamed me for the bullying. I was too nerdy, too socially awkward, too dependent, too much and not enough.

5. I endured some medical trauma. Well, I’m not 100% sure of this being genuinely traumatic, but I certainly endured a lot of hospital stays, surgeries, etc. Most times, the doctors and nurses were really caring. A few times, they were ignorant. For example, when I had my wisdoom teeth extracted in 2010, the medical staff almost didn’t put a sheet over my face because “she’s blind anyway”.

6. I experienced long-term psychiatric hospitalization. I’m realizing more and more how much of an impact this has on me. With my not having felt safe with my parents at least some of my life, and me having been more or less in temporary placements most of my adult life, I’ve never felt that I can be safe anywhere. As a result, I’m constantly challenging my current staff, believing they’ll kick me out of here anyway.

7. I survived two medication overdoses. Both happened in 2017 and I wasn’t really suicidal at the time, but I wasn’t coping either. I never actually realized how things could’ve gone until my mother-in-law told me after my second overdose that the medical staff had asked me whether I wanted to be resuscitated should it come to that. I can’t remember the question or what I said. Both of these made me realize that I needed more help than I was getting at the time. At the time, unfortunately, I had a rather unsupportive psychiatric treatment team, who were very much focused on my independence. As a result, it took me a year from my second overdose to be truly honest that I needed long-term care.

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

Born

Last Friday, the prompt for Five Minute Friday was “born”. I assume many writers, being Christian, will have written about the moment of their salvation. Even though or maybe because I consider myself a progressive believer, I didn’t have such a moment. I was saved 2000 years ago. Rather, something else came to mind. Here goes.

I am still not done reading the book Preemie Voices by Saroj Saigal. It is a collection of letters from people born very prematurely between 1977 and 1982, which was published in 2014. One of the letters I did read, however, spoke to me.

In it, the woman said she was born three times. Once, when she was actually born. Then, when she was supposed to be born, so her due date. For me, this would be September 29, 1986. I was actually born on June 27.

Then there was her moment of rebirth in a spiritual kind of way, but dit didn’t have to do with any organized religion. Rather, she considered the day she was diagnosed as autistic to be her day of rebirth.

I am also autistic. For me, the day of my diagnosis was March 16, 2007. It wasn’t some type of epiphany moment though. My support coordinator at the time called the physician who’d assessed me because she hadn’t heard anything about the results of my diagnosis after my assessment was complete. Neither had I. She was told I had been diagnosed with autism and the report had been sent to my GP. How blunt!

I didn’t even dare write about it on my blog till some days later. It was so weird. Because I was diagnosed three or four more times, I never quite considered this day to be of any significance. Sometimes I wish I had such a moment of rebirth.

A Phone Conversation with My Mother

Last Monday, my mother called me. She rarely if ever used to call me when I still lived with my husband, but now she’s been the first to attempt contact a few times already. I don’t know whether I need to feel bad about not contacting her first, as conversations usually get uncomfortable for both of us.

Like, on Monday, I had just been in an angry outburst when she called. I couldn’t avoid telling her, as I needed a few minutes to regroup. That caused the conversation to center on my (perceivped by either of us) problems and my mother’s attempt to solve them. She was offering me all kinds of advice. If I just stop panicking at frustrating situations or learn to cope with unexpected change, I’ll be able to live with my husband again. I never even said I want to leave the care facility. Of course though, I’m supposed to have this as my ultimate goal anyway. Who, after all, would choose to live in care if they didn’t absolutely need to?

I was terribly triggered by my mother’s unwanted advice. When processing this conversation with my husband yesterday though, I was reminded of her perspective.

You know, I was born prematurely. My mother already feels guilty about that to some extent, as if she was the one kicking me out of her womb. Well, obviously she wasn’t.

Then in our discussion, I disclosed to my husband that I was most likely exposed to valproic acid, an anticonvulsant, in utero. My mother isn’t certain of it, as she took different anticonvulsants for her epilepsy over the years. However, all valproates and most other anticonvulsants have some risk of affecting the fetus when taken by pregnant women. The realization that this might’ve contributed to my developmental disabilities, didn’t happen right away even though in the 1980s, valproates carried warning labels already. It probably came when I was last assessed for autism in 2017 and my mother was asked whether she took any substances or medications during pregnancy. At around the same time or shortly before, there was an article in the newspaper my parents read about large numbers of French women being given valproic acid during pregnancy as late as 2014. This lead to over 4000 children having serious birth defects and even more having developmental disorders. Up to 40% of children exposed to valproates in utero are autistic.

My husband expressed that this may be a factor in my mother’s trying to deny the significance of my autism. After all, if she did something to contribute to me being disabled, she’d have to deal with immense guilt if admitting its full significance. Then it is more understandable that she’s in some denial. It may also explain, I now realize, why she’s trying to “fix” me. I told her she doesn’t need to, but she remains my Mom.

For clarity’s sake, a pregnant woman getting a seizure may be harmful to both mother and child and my mother said this risk was fairly high in her case if she didn’t take meds. I don’t know, as my mother has been seizure-free for 30+ years and off meds for as long as I can remember. However, I mean this to undo the blame. The doctors did what they thought was best, at least that’s what I assume. My mother and I have some questions here too, as my mother also took part in a trial of aspirin to prevent premature birth, which obviously didn’t work. My mother at least did what she thought was best. She never intended to have me early or cause me fetal anticonvulsant syndrome. More importantly though, there’s no need to fix me. I’m content the way things are right now.

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.

Blindness: Dealing With Vision Loss #AtoZChallenge

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.