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.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I’m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

Mother As Source

I was finally able to read The Emotionally Absent Mother again, since transferring it from my computer to my iPhone. Until I did this, I was unable to read any of my EPUB eBooks, because the program I used for it was no longer supported by my screen reader. I missed reading this book in particular, since it had a lot of eye-opening questions in it. I last wrote about it last August, when I shared about good enough mother messages. Now, I am moving on in the book and starting with the roles good enough mothers have. The first one is mother as source.

This section starts with the assertion that mother is what we’re made of. It goes on to assert that, both literally and on a more spiritual level, we come from mother. Literally, we come out of her womb. Spiritually, nature is often seen as coming from the ocean, which is in mythology seen as a mother goddess.

This whole assertion seems a bit off to me. Like I said in my post last August, I was raised primarily by my father as a child. Obviously, I came from my mother’s womb, but this is hard to imagine.

One of the thought-provoking questions in this section is to imagine yourself in your mother’s womb. If you can’t imagine this, you are encouraged to imagine being engulfed by her energy. This gave me uneasy feelings. I have never felt able to see that I come from my mother. In fact, my parents used to joke that the neonatologist brought me into the world, not my mother.

Good enough mother-sources are able to create a positive and welcoming environment for their children with their presence. They make the child feel proud to be of her. As such, the next question in the book is whether you wanted to be similar to your mother or as different as possible (or anything in between). If someone were to say you’re so like your mother, would you be proud?

I have to clarify here that my mother herself didn’t and still doesn’t have the healthiest self-esteem. She used to say, and it came across only half jokingly, that I inherited all my bad characteristics from her and all the good ones from my father. As untrue as this is, I didn’t grow up feeling proud to be like my mother, because she didn’t convey that she had any characteristics to be proud of.

With respect to my father, who primarily raised me, I wanted to be like him as much as possible. Until I was an adolescent, I saw my father as the ultimate embodiment of success and every other positive quality. Then I started realizing that he too has his flaws. I now feel more closely related to my mother than to him.

The next question is whether you can imagine being proud to be of your mother. Do you identify yourself in relation to her? My short answer to this is “No”. I identify myself more in relation to my mother-in-law than my own mother.

In short, I do not feel my mother was able to be a good enough source. Of course, physically she wasn’t, by no fault of her own. By this I mean that all her pregnancies were complicated and the one with me ended in my premature birth. I don’t want to say that somehow she rejected me, because I know she didn’t. Once I was born, in fact, I was more unconditionally – or should I say less conditionally? – welcomed by her than by my father.

Of course, the stress of having had four pregnancy losses prior to being pregnant with me, could’ve caused her body to be less welcoming to a fetus. That, however, and I want to be very clear about this, isn’t her fault, or anyone’s fault. There is nothing my mother did to cause my premature birth!