Rebirth

I remember reading a story some years ago in the book Preemie Voices by Saroj Saigal. This is a collection of autobiographical letters from people who were once premature babies in the university hospital NICU Saigal worked for. I, like the contributors, was a preemie.

In this particular story, the author shared how she felt she has three birthdays: one, her actual birthday, the second, her original due date, and the third, the day of her rebirth. In this author’s case, her rebirth meant being diagnosed with Asperger’s Syndrome (her choice of words).

I haven’t experienced one such pivotal moment in my life. I mean, I too could choose the day I was diagnosed as autistic (March 16, 2007). Then again, my diagnosis has been removed and reaffirmed so many times that I could just as easily choose the last time I was diagnosed (May 1, 2017). Besides, self-diagnosis is valid too.

I could choose the day I was given long-term care funding (June 4, 2019). Maybe that is the most pivotal moment in my life, but it didn’t exactly mean I was reborn.

I could, of course, choose the day I became a Christ follower (December 7, 2020). Many people in the Evangelical Christian community say they are Born Again and indeed, rebirth in Christ is a common Biblical concept. However, I am more of the opinion that, as Christians, we are on a continuous path towards God. I believe that, each time I consciously pick up my Bible, or the cross my husband gifted me and which I use for prayer, or each time a message from God truly enters me, I am transformed a little bit. I don’t believe that I will be made fully new until the day of Jesus’ return.

All that being said, I do believe I am not the exact same I was a year ago. I am not even the same I was yesterday. Or when I started writing this post. In my view, every single moment is an opportunity for rebirth. Every second we are given is another second chance.

This post was written for Reena’s Xploration Challenge, for which the prompt this week is a theme: rebirth.

Heal

Today’s prompt for Five Minute Friday is “Heal”. I read several of the responses before writing mine. Some left me feeling all sorts of things, which I will try to articulate in the below freewrite.

Is it possible to heal from a hurt you can’t explain in words? Can something that you can’t describe in words, a memory that is just visceral, even be traumatic? I am referring to preverbal trauma, of course and, in theory, I know the answer: yes, it exists and yes, healing is possible.

However, in reality, how can I prevent my cognitive processes from constantly interfering with my experiences? Or should this be prevented at all? I mean, if I can rationalize that I’m now in 2022, living in the care facility and not in whatever danger my body thinks (feels?) it’s in anymore, does it even matter that I endured preverbal trauma?

After all, it’s a fact that I did: I was born prematurely, spent the first three months of my life in hospital and had several complicated surgeries before the age of five. The question is whether said possibly-traumatic events affected me and, if so, how to heal from them.

Early Experiences With Medical and Dental Care

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

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.