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.

My Declaration for My 36th Year of Life

Like I mentioned before, I turned 35 on Sunday. A few months back, I had downloaded a birthday journaling tool from the International Association for Journal Writing website. I didn’t really get to journal about any of the prompts in it, but one that stuck out to me is to write your declaration or decision for the upcoming year. It sounds a bit like an affirmation, but I’ll not just repeat it to myself. Rather, in this post, I’ll describe steps I can take to make my declration work.

First, my declaration is: “I will thrive, not just survive.” I will focus the 36th year of my life on improving the quality of my life in some major areas.

I have been debating whether in the long run, I want to stay in my current care home. I’m not yet completely sure, but my aim is to focus on getting as close to my ideal as I can get. However, it may take several more years to find me a more suitable care home, if we can find one at all. This means that I’ll need to focus on improving my quality of life with the resources I have available now.

To make this happen, I’m trying to focus on moving from anxiety and obsessiveness into some level of enjoyment, possibly even happiness. I took the first steps by writing down some things I may want to improve on during my day activities time. For example, I’d like to learn to do some more activities other than blogging and reading by myself, so that when staff leave, I am not completely left out. Today, I tried to work on a bracelet on my own and it worked.

This evening, some kind of staff supporter came round my care home to observe the staff as they care for several clients, including me. She recommended that, when staff leave me, they give me a soft toy to indicate I’m not alone. This also might ease my obsessign over the time they’re going to leave.

I also will be looking into starting some “bigger” project, like a course, again. I don’t think I’ll want to do Open University again, but maybe some hobby-related course.

I’m also thinking of acquiring a small fridge and simple microwave for in my room. That way, I will be able to make soap and body care products in my own room rather than in the overstimulating kitchen, so I should hopefully be able to do more by myself. Then, I’ll hopefully be more satisfied in my activities.

To sum it up, I will try to focus my attention away from ruminating about the past or future and onto enjoying the present. This is probably the hardest part. I am reminded of a Center for Consultation and Expertise case video about a young woman with lots of challenging behavior, for which the staff kept countless checklists of her behaviors etc. They were aiming to manage her behavior, but once they moved away from this and onto looking at how she can have a good day, the behavior also decreased. This might be the case for me too.

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.