Tag Archives: Quality of Life

Q – #AtoZChallenge on Mental Health

Welcome to the letter Q post in the #AtoZChallenge on mental health. This letter was hard at first, but I still came up with a few words. Here goes.

Quality of Care

Quality of care is important mainly to health insurers. That is, it’s not necessarily the real quality of care that’s importnat but how it’s documented in paperwork. As such, we often get patient satisfaction questionnaires. I think they’re worthless. So is the endless stream of paperwork staff have to complete to justify the care they provide. After all, the more staff have to deal with paperwork and patient satisfaction questionnaires, the less they can actually do the real work of care.

Quality of Life

Another loaded term which is used to assess people’s satisfaction with their lives. We get this scale called the Manchester Short Assessment of Qualty of Life questionnaire four times a year. I laugh at the randomness of questions. Like, inbetween questios about your satisfaction with friendships, your financial situation and such is the question whether you’ve been accused of a crime within the past year.

Seriously though, quality of life assessments have real impact on care and policies. For example, if a lot of people treated in a certain way for a certain condition have a very poor quality of life post-treatment, this treatment is unlikely to be used often in the future.

Quiet Room

The “quiet room” or “time-out” is an euphemism for seclusion or the isolation room. Many survivors of forced psychiatric treatment report very traumatic experiences with the “quiet room”. Others find it helpful when they’re severely disturbed, because they can scream there. I have mixed experiences. When I was still on a locked unit, it was often used as a threat to “give me back my responsibility for my behavior”. Seclusion cannot legally be used in this way in the Netherlands; its only purpose can be to avert danger. Now that I’m on an open unit, however, I find sometimes when I’m in crisis that it helps to have me in seclusion for a while.

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

What Recovery Means to Me

Recovery from an eating disorder, self-injury, another addiction or mental health condition can mean quite different things depending on whom you ask. When I joined a recovery group in my old institution in 2010, it was made clear that recovery is different from cure. You could be recovered while still having symptoms of your mental illness and, I assume, someone could be symptom-free but not recovered too. Recovery, in this situation, means living the life you want given the circumstances you’re in and taking responsibility for yourself.

In the eating disorder, self-harm and addiction communities, recovery is much more tied to cure. You cannot, it is assuemd, be recovered while still engaging in disordered eating behaviors or self-harm or, in the case of Alcoholics Anonymous, even drinking a sip of alcohol. I understand this. After all, how can you be fully taking responsibility for your life, living a full life when your life is ruled by food or alcohol or drugs or self-harm? I do see the point. When you’re powerless over an addiction – admitting this is the first step in twelve-step programs -, it takes abandoning the addiction in order to regain power over your life. I am not fully sure this applies to eating though.

The first definition of recovery – the one of taking control of your life, whether you’re still symptomatic or not -, was also devised by people with severe mental illness. You know, treatment-resistant, thought-to-be-lifelong conditions such as schizophrenia and bipolar disorder. People in the eating disorder and self-harm communities tend to assume that their conditons are curable, so their definition of recovery requires being symptom-free. Even so, people like Arnhild Lauveng prove that becoming completely symptom-free is possible with thought-to-be-lifelong conditions like in her case schizophrenia too.

I tend to side with the first definition of recovery with regards to most of my symptoms. I don’t even consider some of my symptoms to be entirely negative. Even when I do, it isn’t a priority for me to get rid of them. Rather, it’s my priority to live a fulfilling life in spite of my symptoms.

Having a fulfilling life, for clarity’s sake, does not mean not getting support or help. In the recovery group I was part of, my planning to go to a workhome – one of the more intensive forms of support within the autism community -, was seen as recovery, because I took steps towards taking control of my life. (I originally typed “restrictive” instead of “intensive”, but realized that there is a huge difference and this place was not that restricive at all.) Indeed, living your life with lots of support, but you being the one directing your support, is very much what recovery is about.

However, with regards to my eating disorder and self-injury, I would very much like to become symptom-free. That doesn’t mean that to have stopped bingeing or purging or self-harming for a set amount of time means I’m recovered. Recovery also means having overcome the emotional struggles that underly my food issues and self-harm. In this sense, since my eating disorder is probably and my self-harm is certainly part of my borderline personality disorder, I do hope to become symptom-free from BPD too.

Even so, for me living my life is a much higher priority than becoming symptom-free. I want to go find a place to live, whether it’s with my husband or in supported housing, and I want to take up some course again. Probably not a college-level course, but maybe a writing course or something. I also want to exercise a few times a week, which is good for keeping me healthy even should I not entirely overcome the overeating.

You can’t stop eating entirely, so I can’t decide that recovery means no more indulging into the addictive substance or behavior. In this sense, I realize I’m not fit for twelve-stp programs, even of the compulsive overeater type, because they do require you to be completely clean from overeating in order to consider yourself having entered the first phase of recovery. Becoming binge-free would be great, and I do strive for it, but it’s less of a priority than having a fulfilling life.

Running in Lavender

Brilliant blog posts on HonestMum.com

Celebrating Myself #PreemieBlessings14

November, in the United Stats, is prematurity awareness month. In honor of preemies and prematurity awarness month, Michelle over at Preemie Blessings has started a challenge. Her first challenge is to answer on one of your social media networks who you are celebrating during prematurity awareness month. Now most preemie bloggers are parents so will mention their children. I’m not a parent, but a preemie myself, and I am just going to be bold and celebrate my very own self!

November is a tough month for me usually. It means adjusting to the end of daylight saving time, the start of colder weather and, well, fall and winter blues. November 2 also marks the anniversary of my first suicide note in 2001 and my suicidal crisis in 2007 which led to my psychiatric institutionalization. I know what it is like to feel like I no longer want to live, but I also know what it is like to feel like a surviovr, and to celebrate it!

I was born at somewhere between 25 and 26 weeks gestation in June of 1986. During my three months in neonatal care, I endured various complications. From one of them, retinopathy of prematurity, I’ve been legally blind all my life and am now totally blind. The others are a mystery in some ways. I had a possible brain bleed, but it wasn’t suspected until hydrocephalus was diagnosed in November. You know, they didn’t do CT-scans or MRIs routinely back then. I also had a lung infection when I was still in the NICU and RSV when I’d been home a few months, but not sure whether I had the A’s and B’s (apnea and bradycardia) that so many preemie parents worry about.

I once read this inaugural speech by a professor of neonatology or something, who said that lung problems, retinopathy of prematurity and brain bleeds are the three conditions that predict poor outcome in preemies. I don’t know whether this professor drew the connection, but I did draw one between poor outcome and “quality of life” and further worried that babies with all three conditions, like myself, should not be allowed to survive.

I still struggle with the thought that I shouldn’t have survived and with suicidal ideation at times. Life is tough sometimes, especially now that I’m worrying about the upcoming cuts to care that will take effect in 2015. I worry that I’ll be left to my own resources, like I was in 2007, and that I will fall into a crisis again. This worry has almost led to a mini-crisis already.

But let’s move on to the positive. I celebrate myself and my life, after all. Here are some things that make my life worth living.


  • Being married to my wonderful husband.

  • The support from people on social networking sites.

  • Being able to read Preemie Blessings and so many other lovely blogs.

  • The Internet in general.

  • Being able to express myself in writing.

  • My creativity and the help I get at day activities to express it.

  • My faith.


Today, I can say I’m glad to be alive. I say this with a bit of a knot in my throat, but I say it nonetheless.

Preemie #WotW

As I said on Friday, I’ve been pondering my premature birth a lot lately. This week I’ve been pondering it so much that I’ll choose “preemie” as my word of the week. For those who don’t know, I’m myself a preemie, not a parent of one. This brings about some unique challenges that I’ll share below.

Being a preemie, I am a statistical survivor – I “beat the odds”. Back in 1986 when I was born, it was the era of infinite possibilities for neonatology, and doctors were treating and keeping alive whoever they could. That’s changed. In 2001, I became aware of the fact that in the Netherlands, preemies born at under 25 weeks gestation, are not treated. It isn’t that the doctors here can’t – they’re probably as capable as doctors in the United States, where 23- and 24-weekers are treated and surviving regularly. Rather, doctors here believe that the quality of life of preemies born at under 25 weeks, would be too poor. My treating neonatologist, Dr. Willem Fetter, was quoted several times in newspapers as saying that sometimes he meets a former preemie and thinks: “What have we done?!”

This sentiment does not seem to be confined to the Netherlands. As Sue Hall says in For the Love of Babies, neonatologists no longer have an urgent need to save everyone they can. In the U.S., however, parents have a say.

I was born in 1986, in the era of infiinite possibilities. When, after I suffered a severe brain bleed, my parents questioned my quality of life, Dr. Fetter bluntly informed them that the staff were keeping me alive and not to interfere. I at one point read an article on abortion survivors, and it included the statistical survivors, living in areas where many abortions take place or for example those with Down Syndrome, but also the “wanted survivors”. Wanted survivors were those whose parents contemplated aborting them but ultimately didn’t. I can very strongly identify with the “wanted survivor” statement, because, even though my parents had no choice to keep me alive or not, they did eventually have a choice to raise me or not, and they chose to raise me. Wanted survivors commonly feel that they somehow need to prove their right to life, as if their parents might retroactively abort them or in my case take me off life support. This is not possible of course, but I can completely relate to this feeling.

That being said, over the past week I’ve felt a roller coaster of emotions as I read two books. One is For the Love of Babies by Sue Hall, which I reviewed on Friday. The other is Preemie Voices by Saroj Saigal. I will review this book too when I’m finished. It contains a collection of letters from former preemies who are now in their thirties. They were born between 1977 and 1982 and all weighed less than 1000 gram or 2lb 3oz. Some have disabilities and some do not. The aim of this book is to provide hope to parents of the preemies of today, but the author is also honest about the fact that some preemies still end up with severe disabilities. Of course, the book is directed at parents.

I feel validated at finally having found a book which includes the voices of adult preemies, after searching unsuccessfullly for a similar book published in like 1996 I’d heard of. Yet I still feel alone, because no-one had the experiences I did. Of course a book, unless I write it, cannot represent my perspective. Maybe I said this on the blog before, but if I ever write my autobiography, it’ll get the title of the 2004 newspaper article in which Dr. Fetter first uttered the “What have we done?!”. Its title is more optimistic: “Some former preemies will later go to university.”

The Reading Residence

Autism and Blindness: Reflections on My Diagnosis

Today, I read a post by an autism MOm feeling lucky that her children were diagnosed relatively early on. It caused me to reflect on my late, but not exceptionally late diagnosis of autism. I was diagnosed at age twenty. This was not because no difficulties were noted early on, but because my parents felt a diagnosis would be limiting me, so they didn’t seek one. And I can see why.

I was autistic all my life. I was autistic when the school questioned my intelligence because of my poor behavior and what I can only think was underachievement. I was autistic when I was finally accepted into a high level, mainstream high school. In 2003, I attended a performance by some of my teachers who were mocking school policy, and one of the things they mocked was the school’s overrepresentation of special needs and gifted students. I had three of the conditions they mentioned the school had perfect programs for: intellectual giftedness, autism and blindness. Nonetheless, if my autism had been diagnosed before my acceptance into this school, I most likely wouldn’t have been accepted. In a way, I applaud my school for accepting me as an individual. I didn’t fall apart, or at least not while still there, so probably they met some of my needs to a reasonable degree.

I was autistic when going to blindness rehab and independence training. I was autistic when enrolling as a psychology major at the nearby college. Had I been diagnosed before my enrollment, I would most likely not be accepted regardless of my qualifying high school diploma. I was diagnosed while at this college and in independence training.

I was autistic and diagnosed with it when I enrolled as a linguistics major at university. I was autistic and diagnosed with it when I dropped out. I was autistic and diagnosed with it when I was admitted to the psychiatric unit, although this unit wouldn’t accept my diagnosis at first.

My parents believed that an autism diagnosis would limit my ability to become independent. It did. I believe that a lack of diagnosis would limit my ability to have a good quality of life. It did. And I for one believe that quality of life is more important than independence.

Some people believe that an autism diagnosis would enable a child’s or adult’s care team to cut the child or adult some slack with regard to their behavior. I believe that my parents and teachers in high school cut me more slack than my support staff at independence training or the college teachers did, and this is why I needed a diagnosis. They sought a diagnosis because they knew my behavior wasn’t normal. Accpeting my behavior as normal for me might’ve worked when I was a child, but in the real world, it doesn’t work.

I recetnly read an article in a magazine for parents of blind children about a mother whose child was suspected of having autism in addition to being blind. Eventually, the parents decided not to pursue a diagnosis, as they reasoned the child’s behavior was understandable given her character and blindness. My first reaction to this article was that I’d trade my diagnosis any day for true understanding of me as an individual. The thing is, the systmem doesn’t work that way.

Deriving Quality of Life from Success

Everyone defines success differently, as a post on Single Mother Ahoy! illustrates. The author starts out by measuring her success through her child’s achievements. As a childless woman, I will not measure my success by parenthood – even though I do esteem successful mothers higher than myself. That may be because they dominate the blogosphere, and my blog is one of a few things I use to measure my success by.

Success is not necessarily the same as quality of life, though it is related. For non-disabled people, it often is the same. At least, all the research I read defining quality of life for disabled people – and I assume the research is written from a non-disabled perspective -, determines quality of life through success. More so, it defines quality of life by success in areas important to non-disabled people. Common examples of measures of quality of life are employment, independent living and a long-term relationship. By these standards, my quality of life is fair, having achieved one of these three.

I understand people derive their quality of life from societal success. After all, we compare ourselves to others, and others are mostly non-disabled, middle- to upper-class people.

Then again, quality of life does not need to be derived from success in the workforce or on the relationship market. That doesn’t mean that quality of life and success are not related, as I said. I derive quality of life from writing for my blog, and I’m pretty sure I’d feel a lot worse about myself if I got no views or comments and a lot better if I got more than I get now. I actually believe that even the most severely disabled people derive quality of life from success. Only they and I measure success differently than non-disabled people do.

That being said, even non-disabled people probably derive part of their quality of life from relatively small successes. I refuse to believe I’m the only blogger who feels their writing contributes to their quality of life even though they don’t earn anything through it and even though they’re not receiving tons of views. I refuse to believe I’m the only crafter who crafts only for the joy of it and the community that interacting with fellow crafters brings. Honestly, these small joys are much more important to me than my high-level high school diploma ever was or a job ever will be.

Mental Health Awareness: Living with Significant Mental Illness

Today, I’m linking up with Vicky’s mental health linky for Mental Health Awareness Week in the UK. As regular readers will know, I’ve been diagnosed with a mental illness for years. My original diagnosis was adjustment disorder, because I had landed in a psychiatric crisis when living indpendently and just didn’t meet the criteria for depression. My parents joke that I just didn’t wake up at the right time, because my doctor told me when I had sleep disturbances, that they weren’t typical of depression. I’m pretty sure I wasn’t clinically depressed.

Then came impulse control disorder NOS, which was basically an extension of the adjustment disorder I suppose, except that it reflected just my behaviors and not my moods.

In 2010, I was diagnosed wit dissociative identity disorder and PTSD. I want to tell anyone with a diagnosis of PTSD that it’s not a life sentence. I had a mild case as far as the regular symptoms were concerned (I also had symptoms of complex PTSD, and still do). EMDR treatment was suggested a few times, which can be very effective. However, because I had such a mild version of PTSD, the symptoms lessened to the point where I no longer needed the diagnosis with a lot of talking about my traumatic experiences. I later found out that talking and talking on about your trauma under a therapist’s guidance until it doesn’t hurt as much anymore may in fact be effective in people not responding ot EMDR. I don’t know the specifics of this therpay, which is called imaginary exposure, and I didn’t get any formal form of treatment for the PTSD myself.

As for the DID, I have or had a mild version of that too, probably more dissociative disorder NOS, and was able to hide the symptooms when people weren’t accepting of them anymore. There are many people, mostly peers, who believe my diagnosis of DID was incorrect. As for my therapist, she changed it to borderline personality disorder and feels this includes mild versions of DID too, so that I don’t need an additional diagnosis.

What is it like living with a mental illness? Well, for me, it is one confusing experience. I am very suggestible and have a poor sense of self. This means that I absorb many emotions from other people, and yet I do not know how to handle these emotions. I can have rapidly shifting, dramatic mood swings. One momnet, I’m fine; the next, i’m raging. Then again, my definition of “fine” is probably not the same as a currenlty mentally healthy person’s, because I’m always somewhat anxious and/or depressed.

Borderline personality disorder often co-occurs with other disorders. I have no additional diagnoses (other than autism, which I don’t consider a psychiatric disorder), but I could likely have been diagnosed with a range of disorders if this would make a difference. As I said, I have dissociative symptoms. I also have suffered from chronic, low-grade depressive moods since my teens, and likely had what is now called disruptive mood dysregulation disorder as a child. I also have some level of anxiety and used to have quite bad obsessive-compulsive symptoms in my teens and early twenties. They however went away witout treatment when I was hospitalized, so were likely a response to stress. Same with many of my somatic symptoms.

There is treatment for most of my mental health symptoms. In fact, I have improved a great deal over the years. That doesn’t mean my mental illness can be cured. I strive for recovery, which means living a meaningful life in spite of my mental illness.

Living a meaningful life, for clarity’s sake, does not necessarily mean not needing mental health support. It is a common misconception, which I fight even with my therapist, that needing less support is the ultimate measure of quality of life. I, for one, am likely to need support for the rest of my life. This doesn’t mean I can’t find joy or even happiness. I find joy in my hobbies, which include blogging, crafting and reading. I find happiness through my relationship with my husband. I do still have significant mental health problems, and I won’t say they don’t limit me. Then again, I’m more limited by the idea that needing less support is more important than feeling better.

Was My Hospitalization Inevitable?

I was reminded yesterday about the situation surrounding my psychiatric hospitalization in 2007. I had been put on antipsychotic medication three months prior and had quit taking it again three weeks before I ended in crisis and was hospitalized. Yesterday, when talking to my therapist about this situation, she suggested more or less that being hospitalized could’ve been avoided if I just continued taking my meds.

Really, I consider my crisis inevitable. When I was still taking my medication, I was very irritable; just not irritable enough for the crisis team to intervene and hospitalize me. “But other people don’t like to be hospitalized,” my therapist said, as if by quitting my medication I’d somehow manipulated the crisis team into an unnecessary admission. The thing is, I’d been on the edge of a crisis ever since I moved into independent living. Maybe quitting my medication was the final straw, but is it all that strange that you want help when you’re struggling with meltdown after meltdown after meltdown?

I saw this reasoning all along when I still lived independently. I remember my care coordinator once saying that it was better for me to bang my head against the walls of my apartment, than to go outside and scream. Well, what the bleep? Isn’t a person’s safety more important than the person being a pain in the butt? Besides, it isn’t like I made a conscious choice either way.

For clarity’s sake: hospitalizations aren’t fun. The psychiatrist who admitted me, didn’t do so to please me. In fact, I didn’t ask to be hospitalized, as I didn’t know what I needed really. Hospitalizations happen as a last resort. Long-term institutionalizations are certainly not a choice either. And just so you know, the fact that I’m an informal patient doesn’t change that.

Why did I have a full-blown meltdown yesterday after my therapist asked me to name the pros and cons of asking for help less? Why did I feel offended when she suggested that, with medication, I could’ve been kept at home? Why do I struggle with all this “least restrictive environment” bullcrap that I hear everywhere? I’d like to consider my hospitalization avoidable, and maybe it was if I’d just continued taking those pills. But as I said, I was completely on the edge for all those three months. Apparently, however, intervention is only inevitable if you’re literally (nearly) dead, and if you aren’t, quality of life doesn’t matter. Especially not if you’re also a pain in the neck.

mumturnedmom

Musings on Premature Birth and Quality of Life

A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.

Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.

My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.