Monthly Archives: December 2015

Book Review: Unspeakable by Abbie Rushton

Yay! I reached at least one of my goals for this month. I finished not just one, but two books I’d started reading earlier in the year. Already in January, before the book was published (or at least before the eBook was), I found out about Unspeakable by Abbie Rushton and decided I wanted to read it. Like with Girl in Glass, other things that seemed more interesting came in the way, so I didn’t finish the book till a few days ago.

Synopsis

Megan doesn’t speak. She hasn’t spoken in months. Pushing away the people she cares about is just a small price to pay. Because there are things locked inside Megan’s head – things that are screaming to
be heard – that she cannot, must not, let out. Then Jasmine starts at school: bubbly, beautiful, talkative Jasmine. And for reasons Megan can’t quite understand, life starts to look a bit brighter. Megan would love to speak again, and it seems like Jasmine might be the answer. But if she finds her voice, will she lose everything else?

My Review

This is a fascinating book and it doesn’t go as I’d expected it to go. When I first started reading this book, I thought it’d shed light on selective mutism, in which a peson (usually a child) is unable to speak because of severe social anxiety. Though technically Megan might meet the definition of selective mutism, much more is behind her silence than social anxiety. When reading the first few chapters, I was bored easily, because I had no way of making sense of the story. When I read on, however, this boredom turned into curiosity, then suspense and eventually I was completely captivated. The book has some fascinating twists and turns and some thrilling cliff-hanges, some almost literal. Once I got through the first few chapters, the story kept me thrilled until the very last page. That’s a rare occurrence with the type of fiction I usually read. With this book, Abbie Rushton tells a great story on friendship, love and crime. For those who, like me, are pretty faint-hearted, I’d like to disclose that the story ends on a good note. I can’t wait to read Rushton’s next book, which will be out in the spring of 2016.

Book Details

Title: Unspeakable
Author: Abbie Rushton
Publisher: Little, Brown Book Group
Publication Date: February 2015

Fear of Joy

Fear of joy. Some people find this hard to imagine, but it is real for some of us who’ve experienced depressive symptoms. It is real for me.

I have a really hard time experiencing joy without sabotaging it with fear. I don’t deliberately do this, but quite often I tend to feel intense anxiety when I notice I am in a good mood. Then obviously my mood goes down again.

It’s probably because of expectations. There is this man on my unit who always says he’s doing so-so or bad and never says he’s doing well. He says it is because, if he says he’s doing well, they’ll think he’s no longer mentally unwell and will expect him to leave the psychiatric unit. I can relate to this. Now I myself don’t want to be on this unit forever, like this man does. What I can relate to is the expectation that, if I’m well once, I should be able to keep the feeling and not fall unwell again. Worse yet, I fear that if I say I’m feeling well, I will be expected to cope with less support, more independence. In this sense, I can relate to the fear of being kicked off the unit if I say i’m well. Though I don’t want to stay on this unit forever, I do want to maintain a certain level of support.

Of course, everyone, whether we’re mentally ill or not, experiences highs and lows. People who aren’t mentally ill aren’t expected to keep feeling well forever if they say they’re well once. Why should people with mental illness be expected to be cured if we say we feel well once, then? The truth is, no good mental health professional or understanding relative expects this out of us.

Of course, I remember the situation a few years ago where a woman with depression was denied sick leave benefits because she “didn’t look depressed” in Facebook photos. That sort of thing may happen, and I’m sometimes afraid of this too. Like, yesterday I told my named nurse I’m afraid of not getting community support once I live with my husband. The reason is my staff aren’t coming to the tiny village to assist me with my application and the social consultant there isn’t coming to my institution. This means I’ll need to file the application all by myself. Of course, my husband will be there, but I doubt he knows what care I’ll need. Now I’m at once afraid that I’ll not be able to clarify what I need so that the consultant won’t be able to get me care, and that I sound too capable. The care needs paperwork that the Center for Consultation and Expertise created for me in 2013 lists my intellectual giftedness. I’m tempted to delete that in the process of updating it for the current application. The first reason is because I have no clue what significance a high IQ has over a normal IQ when applying for care. I mean, it means I can’t get care from the intellectual disability agencies, but I couldn’t if I had a normal IQ either. However, the other reason is I fear it will be seen as significant by the social consultant and they’ll determine that if I’m so intelligent, I should be able to solve my own problems.

This is what’s behind my fear of coming across like I’m doing well, and consequently my fear of experiencing joy. Of course, like I said, every understanding person should realize that having a good day doesn’t mean being cured of your mental illness. Then again, I’m not sure most people are all that understanding. Could be my stress-related paranoia though.

Book Review: Girl in Glass by Deanna Fei

A few months ago, I read on a preemie parent blog about the book Girl in Glass by Deanna Fei. I bought the book, but bought a few others after that one that I thought would be more interesting. As a result, I only finished this book today.

Synopsis

Deanna Fei was just five-and-a-half months pregnant when she inexplicably went into labor. Minutes later, she met her tiny baby who clung to life support inside a glass box. Fei was forced to confront terrifying questions: How to be the mother of a child she could lose at any moment. Whether her daughter
would survive another day–and whether she should. But as she watched her daughter fight for her life, Fei discovered the power of the mother-child bond at its most elemental.

A year after she brought her daughter home from the hospital, the CEO of AOL – her husband’s employer – blamed the beautiful, miraculously healthy little
girl for a cut in employee benefits and attached a price tag to her life, using a phrase, “distressed babies,” that set off a national firestorm.

Girl in Glass is the riveting story of one child’s harrowing journey and a powerful distillation of parenthood. With incandescent prose and an unflinching eye, Fei explores the value of a human life: from the spreadsheets wielded by cost-cutting executives to the insidious notions of risk surrounding modern
pregnancy; from the wondrous history of medical innovation in the care of premature infants to contemporary analyses of what their lives are worth; and finally, to the depths of her own struggle to make sense of her daughter’s arrival in the world. Above all, Girl in Glass is a luminous testament to how love takes hold when a birth defies our fundamental beliefs about how life is supposed to begin.

Review

As regular readers of my blog know, I was a preemie. My parents were concerned with my quality of life, asking some of the same questions Fei asks the doctors and herself. I cringed sometimes as I read Fei’s repetitive worrying about her daughter Mila’s health issues and their possible consequences, which sometimes led her to question whether she should be alive. At one point, Fei tells the doctors that she and her husband are not religious and do not have ethical issues with letting their child go if she faces severe disability. At times, I had a hard time reading on, because I was reminded of some of my interpretations of my parents’ reasoning on quality of life. For example, when Mila has a brain bleed, Fei repeats this over and over again: “What about her brain?”

Once Tim Armstrong, the CEO of AOL, uses Fei’s daughter as an excuse to cut employee benefits, Fei seems still not entirely accustomed to the idea that Mila is not just “generally okay” (Armstrong’s words) but is a blessing. Now I personally don’t like such terms to describe human beings either, but it seems that Fei is still a bit uncertain whether Mila should have been kept alive. This could be her post-traumatic guilt though.

However, Fei stands up for her daughter’s right to medical care. She investigates the issues surrounding health insurance and the right to medical care in the United States. Fei claims that, in every other developed country, the question would not be raised whether Mila is worth the alleged $1 million. Of course, I was reminded of the guidelines restricting treatment of premature babies to those born past 25 weeks gestation in the Netherlands. No employer may decide that certain babies aren’t worth the cost of treatment, but that doesn’t mean no such decisions are made. Similarly, while in the Netherlands employers don’t have access to health information (although they might if you buy your mandatory health insurance through an employer collective), governments do.

Fei cites a few court cases in which quality of life and the right to medical care were at stake. Unfortunately, she concludes that “obviously”, Sidney Miller, who was a preemie and now has multiple severe disabilities and is unable to walk, talk or feed herself, crosses the line of good enough quality of life. I disagree, but that’s a topic for another post. Fei uses her and other cases to discuss the idea that Mila or any other preemie should have to prove their worth. This idea, which is central to Armstrong’s reasoning and to Mila’s care, evoked a lot of emotion in me.

In general, I found Girl in Glass evoked the full spectrum of emotions in me. Mostly though, it evoked sadness and anger. Reading this book was in a way therapeutic, because Fei articulates the sentiments so well that I’ve been feeling for a long time. She also does a great job of investigating all the issues surrounding the health care system when it comes to premature babies.

Bok Details

Title: Girl in Glass: How My “Distressed Baby” Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
Author: Deanna Fei
Publisher: Bloomsbury Publishing
Publication Date: July 2015

The Best Decision of My Life

Today I heard about a type of journal where you get a question for every day of the year and answer it each year for five consecutive years. It unfortunately is a paper journal and there is no eBook version or website for the questions. I however heard that one of the questions the person writing about this found the most inspiring was: “What was the best decision you ever made?” I find this question inspiring too so am going to answer it on my blog.

I’m going to be pretty selfish here. I mean, I should of course say the best decision I ever made was to marry my husband. Maybe I’ll answer that next year, when I’ve lived with him for a while. I hope so. This year, however, I’m going to choose a decision that was hardly a conscious decision. I mean the decision, in 2007, to allow the crisis service psychiatrist to hospitalize me.

I wonder what it says about me that this came to mind first, rather than the decision to marry my husband or to enter in a romantic relationship with him. I’m a bit afraid it means I’m not fully ready to see myself as a wife first and a psych patient only after that. I have to be honest, after all, that when my staff push me regarding going to live with my husband, I still say I have no other options and only then say that I of course want to be with my husband. I for clarity’s sake don’t mean this to say that I don’t want to be with my husband most of the time. Instead, I use these phrases to counter the staff’s assertion that I choose to enter independent living. I never chose independent living, I chose to be with my husband, and part of the reason I’m going to live with my husband in our new house in the tiny village is no other options have come up.

My relationship with my husband obviously means a lot to me, and I don’t think I’d be remotely as happy as I am now without him. But without being hospitalized, I’d be off a lot worse. Never mind the fact that my husband most likely wouldn’t have pursued a relationship with me had I not been hospitalized.

My hospitalization, frankly, allowed me a chance to live. I know, I most likely wouldn’t have died by suicide had I not been hospitalized. Even though back then was the darkest time of my life and I seriously contemplated suicide, I know in hindsight that I didn’t have the means to take my own life. I also would most likely not have died by any other means if I hadn’t been hospitalized. In this sense, was my hospitalization maybe not necessary? I don’t know, but it certainly gave me a chance to live rather than merely survive. This is why consenting to psychiatric hospitalization was the best decision of my life.

A Letter to My Body

Dear body,

I am sorry. I have not been taking good care of you lately. I have not been exercising regularly, have been binge eating a lot and have slept at all the wrong moments and been awake at night.

Of course, I could blame my eating disorder and see it as something entirely separate from myself. I could blame the holiday season. I could blame the winter blues (or general blues, since I’m not sure if it’s seasonal at all) for my laziness regarding exercise, my increase in binge eating and my poor sleeping habits. Then again, that’d be avoiding my responsibility.

Sometimes, I feel as though you don’t deserve to be taken care of. I feel you’re ugly, fat and unheathy anyway. You’re fat, but at least my husband doesn’t consider you ugly and you could be a lot less healthy than you are.

Besides, right now I don’t have as poor an image of you as I had before. I like my skin feeling softer when I apply shower cream, then scrub it, then apply body butter. I particularly even like my belly, which is the part you seem to be storing most of your fat.

I want you to know there’s nothing you did to deserve me stuffing you with binge food and depriving you of the exercise and sleep you need. I’m stressed, but you didn’t cause me to be stressed. I’m slightly depressed, but you didn’t cause me to be depressed.

So I want to thank you for being relatively healthy while I don’t take as good care of you as I should. All your major functions (except for vision of course) are intact. You keep your vitamin and mineral levels okay. You haven’t developed diseases like diabetes or heart disease in spite of your obesity, caused by my lack of proper care. You are okay.

As I said, I could look at your negative attributes: your not being as fit as I’d like you to be, your causing me acid reflux, irritable bowel syndrome and random pains and aches. Then again, whether it’s you causing me these problems or me causing you these problems, could be debated. The thing is, I can’t change your functions without taking better care of you first.

As dialectical behavior therapy also teaches, I can’t change you witout accepting you as you are first. You are okay as you are. Now I can work on improving you.

Yours,
Astrid

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Mom's Small Victories

Test Scores Don’t Determine Ability to Get By in Life

On a Dutch blog by the mother of a child with autism, I read about the impact of IQ on school choice. The child in question is intellectually disabled. I am not. However, I can totally relate to measured IQ impacting the choices made for me regarding my education.

I have a verbal IQ that was at one point measured at 154. I have had many IQ tests other than this one. I didn’t score as high on all. On one, I didn’t even score within the gifted range. Nonetheless, my IQ score of 154 is mentioned in every diagnostic report about me.

This is a verbal IQ. IQ is composed of two components: verbal and performance. My perfomrmance, or non-verbal IQ cannot be measured because I’m blind. This doesn’t mean it doesn’t impact me. Professionals involved with autism have consistently suspected that my performance IQ is significantly lower than my verbal IQ and this could be one reason my abilities are constantly overestimated. It cannot be measured, however, so let’s just continue expecting excellent, or at least good performance out of me. Or not.

The mother writing the blog I mentioned above desperately wanted her child to have an IQ above 70 so that he could go to a school for children with behavioral disturbance rather than a school for children with an intellectual disability. In my own case, my parents desperately wanted me to score high so that they could convince the special school for the blind to recommend me to regular education. Finally, they needed not just to prove that I am intellectually capable, but that I excel academically, because they had decided I should go to grammar school. I had to have a standardized test score above a certain number and thankfully I scored within the expected range. The special school principal called my parents in total shock, because she didn’t have a clue that I was this capable.

In real life, unfortunately, it takes more than academic excellence to excel, or even to get by. It takes more even than a high verbal IQ. More than a high IQ in general, in fact.

Why do people rely so heavily on test scores to determine what they can expect out of someone? Because my abilities are consistently overesitmated, the autism consultant recommended further testing to determine why I function at a much lower level than my (verbal) IQ would suggest. My psychologist dismissed this idea. I understand, because it takes a lot to be able to assess someone who is blind. Besides, I’m not so sure I’d be able to take yet another exam, as that’s what it feels like.

Why don’t we just understand that people are different? People have different abilities and difficulties and they shouldn’t all have to be Einsteins or prove why they’re not. Yes, I know Einstein is sometimes suspcted of having had practically every neurodiverse codnition under the sun. I don’t care. My point is that, if someone doesn’t get by, they need help and it doesn’t matter whether a test score says they should be able to get by.

December 2015 Goals

Wow, it’s December, the last month of 2015. Last Thursday, when my husband and I got the keys to our new home, we had to pay the rent for the rest of the year. It’s amazing and shocking at the same time how we have only less than 31 day sleft till the end of 2015. Today, I’m going to list some goals I have for this last month of the year.

1. Blog at least twice a week on each of my blogs. I have restarted my Dutch blog (again!), which means I now have to divide my blogging attention between two blogs. It’s not much if you see how many blogs I’ve created over the past years, but the fact is I’ve never kept up with more than two, so this is hard enough. I am terrible at dividing my attention, so I hope that this time it’ll be a success.

2. Not put on any weight. I’m not going to aim for weight loss in this festive month, because I know that’s just not going to happen. However, last week I was at the exact point weight wise I was last March, which was the heaviest I’ve been ever. It’s only a bit heavier than where i was in September of 2014, but it’s still significant that this is my heaviest weight. I just can’t keep on cutting mysef slack, because then my BMI will be over 40 in no time.

3. Finish at least one of the books I started reading earlier this year but haven’t finished yet. I’ll probably go for Girl in Glass by Deanna Fei.

4. Spend at least one week-end at my new home. I’ll most likely have no difficulty reaching this goal, as we’ll have to hand in the key to our old apartment on the 18th.

5. Buy my husband and father their birhtday presents. My husband had his birthday in mid-November, but he wants a tree for in our garden. I really do hope we can still plant it. My father has his birthday in mid-January, but I want to be early.

6. Not end up in crisis. December is one of the hardest months of the year for me, because the staff are often busy with holiday preparations and stuff and the whole unit is decorated and furniture moved. I have been in crisis each December since being on this unit. Since my medication can’t be increased any, as it was last year and in 2013, I just hope I won’t end up in crisis.

I really do hope I’ll be able to enjoy the holidays some, but that’s going to be hard. I am already thinking of what to buy myself for the holidays (or for any occasion). Last week, I bought myself some products from The Body Shop and I won’t promise there will be no more spending on gifts for myself this month.