Colors, Changes and Connections

Posted on by Astrid

Today, I am joining Denyse’s #WWandPics link-up. Denyse apparently has been sharing posts following an alphabetical theme. Today, she talks about the letter C. I could do this alphabet thing too, but then I’d have to start at A. Instead, I’m taking inspiration from her “C” words to write my post.

Denyse’s first “C” word is “change”. Of course, things are changing in my world too, though I’m not yet sure when. I got informed last Saturday that my new care home will keep my current day schedule for now. That’s in spite of the fact that it apparently indeed does cover two hours more care a day than I get funding for. I still don’t fully understand the technicalities, but I don’t really care, as the number of support hours I get according to my day schedule was never the problem. It was how cut up into at most 60-minute activity blocks it is. It’s okay though. Better than the alternative my staff have been suggesting, saying I need to find a way to cut back on those two hours and go down to 30-minute activity blocks.

I asked my support coordinator about having a care plan review. We haven’t had one in nearly two years due to my moving to my current home right when my last review was due. My support coordinator is going to get the new one to schedule a review once I’m settled there and he will attend too.

He also finally sent my mother-in-law an activation code to access the daily reports on me and my care plan. As far as my mother-in-law is concerned, they mostly report really superficially. For those who are wondering, back several years ago it was agreed upon that I wouldn’t get access because it might cause distress, but I did want someone in my family to have access especially now that I’m struggling significantly. Most daily reports apparently go something along the lines of “mostly had a good day, slightly stressed over ___”. I don’t know whether it’s deliberate, but that’s certainly downplaying my distress.

The support coordinator for the new home did ask my current support coordinator to confirm what color paint I want on my wall, despite the fact that I’m pretty sure I already told him through my mother-in-law. It will be pink, since lilac wasn’t available. Truthfully, all other colors except maybe blue sounded awfully ugly to me. And yes, despite being blind, I do have some concept of color from when I could still see a little.

Through all this change, I am happy about my online connections. I have multiple disabilities, so am in Facebook groups for various conditions. I am also in a few Facebook groups for former preemies or NICU babies in general. The Dutch one is organizing a get-together in September. I sent the organizer an E-mail to sign up, then decided to ask some further questions in the Facebook group. As far as I’m aware, the get-together will be held in a café-style meeting room, so I’ll most likely be able to get the ParaTransit taxi driver to get me right to where I need to be. On the one hand, I’m reminding myself that I used to attend the DID charity meetups independently each month from 2011 till 2013 and even rode the train there by myself. On the other hand, it’s 2023, not 2013 and I’ve probably declined cognitively at least a little. Then again, if I don’t try, I’ll never know if I can do this. I would really love to connect to other NICU survivors, as honestly I’m beginning to realize I might not be alone in experiencing significant attachment issues and they might in fact have started this early on.

Quality of Life As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter Q post in the #AtoZChallenge. Today, I want to talk about quality of life. This is a concept often used in medical ethics to determine whether someone’s life is “meaningful”, in this sense, “meaningful” enough for life-saving treatments. For instance, when I was a baby and sustained a brain bleed, my parents wondered whether I would later have sufficient quality of life for life support to make sense.

People with intellectual and other disabilities are, in this respect, often seen as having a lower quality of life regardless of their subjective experience compared to people without disabilities. After all, many people with intellectual disabilities cannot work, live independently or have long-term romantic relationships. That is, not in the same ways that non-disabled people can.

However, if we judge people’s quality of life by their earnings, their ability to live independently without any supports, and non-disabled people’s ideas of what constitutes a “normal” long-term romantic relationship, we are discriminating against rather than affirming people with disabilities.

Another way of employing the concept of quality of life is to look at what exactly brings meaning to each individual’s life, rather than to measure how meaningful each life is by how well-accomplished an individual is. This way, quality of life is useful even for people with profound intellectual and multiple disabilities. The Dutch Center for Consultation and Expertise has created a questionnaire on quality of life, which should be used as a stepping stone for first determining a person’s quality of life and then ways in which it can be improved.

For people with profound intellectual and multiple disabilities, quality of life really is often determined by tiny things. I mean, even for them self-determination and independence might be underlying values, but these are reflected in very small things. For example, I read about a discussion on the quality of life questionnaire between a family member and staff of a profoundly and multiply disabled person. The topic concerned his daily walks. One of the people involved said the client probably preferred to be taken on walks at least twice a day, while the other said he seemed not to like his walks at all. The difference turned out to lie in the way the people approached the walks: the person with whom the client didn’t seem to want to walk, pushed the wheelchair at a rapid pace without stopping, while the other walked slowly and took frequent breaks to show the client his surroundings. This shows how quality of life may be as simple as a slower walking pace.

My Life Story Isn’t Over Yet

Posted on by Astrid

Hi all. Today I’m joining Tranquil Thursday. This replaces Throwback Thursday while Lauren is dealing with her health issues. This week’s topic is (un)written aspects of our life story.

I am 36. On average, this means I’m about at midlife or slightly before there. This should mean about as much of my life story has been written already as the part that’s still unwritten. I struggle to see it this way though. In my mind, I’m perpetually in end-of-life mode.

Especially since moving to my current care home, I no longer make plans. I blame the chaotic situation here, but I’m not sure that’s all there is to it.

I do look back at a life that has been hard, but it definitely has had its positives. Meeting my husband and getting married is an absolutely amazing thing about my life.

As a teen and young adult, I always wanted to write and publish my autobiography. I obviously never did. It had as its working title “Some former preemies will go to university”, after the title of an article in the newspaper my parents read in 2004. The article was about giving preemies born at 24 weeks gestation a chance at active treatment. The neonatologist arguing for this said that some preemies will later go to university. In other words, they’ll prove their worthiness of having been treated actively.

As regular readers of this blog will know, I received active treatment as a preemie too, even though my parents weren’t completely sure I should. I did, indeed, at some point go to university. And failed miserably. But I did sort of prove my worth. Or did I?

My life story isn’t over yet. I might indeed someday be relatively successful at life, whatever that may be. Or I might deteriorate even further than I am now. Then again, everyone deteriorates in old age. And if you need to have had a college degree and worked for 40’ish years before that in order to prove your life is worth it, human values are rather distorted.

Rebirth

Posted on by Astrid

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

Posted on by Astrid

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.

Quality of Life: Its Impact on Me #AtoZChallenge

Posted on by Astrid

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

Posted on by Astrid

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.