Tag Archives: Suffering

Grateful for My Suffering

It’s been a hard day. I went to the institution’s educational department to study a bit in the morning. I literally had to drag myself there, because I was so tired. When I was done studying, I had lunch and then went on the computer to find an E-mail from the housing corporation. My husband and I have been contemplating moving house for a few months now. It’s been up in the air in many different forms. Over the week-end, I thought we’d decided we weren’t going to move after all, but then on Tuesday my husband found out I may have more time on the housing waiting list than we expected. It would be eight years, whereas I thought I had just 2 1/2. Long story short, the housing corporation E-mailed me to let me know the 2 1/2-year’s waiting time is correct. This confused me, because no explanation was given. So no moving house for us.

I was rather upset at first and went up to the nurse’s station to ask someone to take me on a walk. “Don’t you have day activities now?” the nurse replied. Well, I might, but that wasn’t my question. Turned out day activities were canceled (again!). I got upset. At that point the nurse and I had an argument about whether I expected the nursing staff to keep me occupied. If they’d just answered my question up front – no, they couldn’t take me on a walk -, this had been avoidable. Then again, this may be my autistic inability to cope with uncertaintty and change.

After a huge meltdwon, I’m now relatively calm. As I stumbled across the Thoughtful Thursday linky, I mulled over this day in my head and remembered a blog post I had read a while back (sorry, can’t remember where), which reminded the reader to be grateful for your suffering. I think I wrote about this before in one of my devotionals. Because I couldn’t find the post or the Bible quotes it references, I searched for some myself.

“But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.” (1 Peter 4:13 NIV)

In other words, without suffering, there is no happiness. When you’ve never suffered, you cannot appreciate the joys of life. This goes for Christians, who share in the suffering of Christ and in His glory, but it also goes for non-Christians. After all, my anology of no joy without suffering does not require God. He can of course support us in our suffering and share in our joys, but if you are a non-Christian, you can still learn to appreciate the joys you face each day amidst even the darkest of suffering.

For instance, instead of being angry at the times the nurses can’t take me on walks, I can appreciate the times they can. I do this, and in truth, it wasn’t the fact that the nurse couldn’t take me on a walk that upset me. It was the housing corporation E-mail. Then again, not moving house means I know where I’ll be living once I leave the institution and can hopefully leave sooner than had we been moving house first.

I came across another Bible verse, which reminds me that, because I have moments when I am in a less than optimal state of mind, I also have moments when I am better.

“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” (2 Corinthians 12:10 NIV)

This verse again reminds us that, in the face of persecution and hardship, we show our strength. We cannot be truly strong if we are never challenged. In other words, if we sit on our butts in a flowery garden eating chocolates all day, we will not grow (except in weight). I may have been in a meltdown this afternoon, but I made it through. I did self-injure, but it wasn’t bad and I was able to calm myself afterwards without needing to be secluded. I survived another crisis and, because of my mental illness, it undoubtedly won’t be the last one. Other people have it easier, but no-one is free from hardship and suffering. It is in the face of challenges that we show our human strength.

Creative K Kids

In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

Pain Doesn’t Have to Be Visible to Be Real

“I always hated when my scars started to fade, because as long as I could still see them, I knew why I was hurting.” – Jodi Picoult, Handle with Care

I am a self-injurer. Have been since childhood. Part of the reason has always been to feel something other than emptiness, loneliness, or emotional pain. However, part of the reason has also always been to make my pain be visible. Not even necessarily to others, but to myself.

It feels kind of odd to admit this. After all, wanting to express pain is seen as overreacting, attention-seeking. We are taught to hide and numb out our pain.

I once read a Dutch book on psychosis which started out by eplaining that today’s psychiatry is aimed at ignoring people’s inner experiences, or altering them with drugs. According to the author, we live in a kind of brave new world, where everything is aimed at individual and social stability. Take some soma, baby! And I can relate, having resided in a psychiatric institution for almosot seven years. When I feel stressed, the first response from the nurses is usually to ask if I need a tranquilizer. In fact, when I resided on the locked ward, I’d call oxazepam my “shut up pill”, because nurses would tell me to take it whenever something irritated me.

Please note that psychiatric drugs have some place in treatment of severe mental illness. I take various medications for anxiety, irritability and emotional instability. Sometimes though, I’ve wanted to quit my medicaiton because it numbs me out.

Psychiatric drugs aside, many people are taught that to feel pain is to be weak, and to express it is to be even weaker. Most survivors of trauma feel guilt for the pain they experience, because, you know, others have it worse, it wasn’t that bad after all, you name it. I am still working on admitting that what I suffered was real, and the pain I feel is real as well. Just today, I saw another quote. Something along the lines of: “Your struggles are valid even if others are struggling more.”

Another common misconception is that physical pain is somehow more real than emotional pain. There is a huge stigma associated with mental illness, more so than with physical illness (I’m not saying there’s no stigma associated with physical illness). People all too often think that we can “just get over it” when we’re experiencing emotional turmoil, whereas if there’s something physically or at least visibly wrong with us, it’s real. I am not immune to this, and in my case, this idea perpetuates symptoms such as disordered eating and self-injury.

If you want to get over emotional pain, the first step is admitting it is there and that it is real whether it is associated with visible scars or not. You should not have to convert emotional pain into physical wounds to be taken seriously. Expressing pain in a healthy manner should be allowed, encouraged even, and should be enough to deserve support.

Linking up with Inspire Me Monday and Motivation Monday.

Be Joyful, Be Patient, Be Faithful

“Be joyful in hope, patient in affliction, faithful in prayer.” (Romans 12:12 NIV)

Often when I turn to the Bible, to devotionals, or to other Christian writings or even music, I find myself drawn to verses that give hope, let me know that I’m not alone if I have faith in God. I do not turn to the Bible to dictate the morals I need to live by day-to-day, because I personally believe the Bible was inspired too much by the culture of its time for this. Rather, I look to the Bible for guidance in my spirutal life and my relationship with God. This verse speaks to this relationship and to how we as humans need to invest in it.

Be joyful in hope. Often, I find myself taking up the Bible and generally investing in my relationship with God only when I’m suffering. This verse calls upon us to also share in God as we have hope, and to be thankful to God for the works He does. This does not mean we need to praise God for every ounce of food we eat. In fact, praying for food has too much of a ritualistic connotation for me, as I was required to participate in it in school as a non-religious child. Rather, we need to be appreciative in our hearts, which God knows.

Be patient in affliction. Many people often wonder when their suffering will finally pass. This verse asks us to be patient while God meets our needs eventually. Often I and many others find ourselves falling into the trap of demanding instant gratification. However, other people are not required to fulfill our every wish, and, while God may possess some kind of magic wand, He is certainly not supposed to wave it whenever we think we need Him to.

Be faithful in prayer. God knows our needs, and He cares. Remember, needs are not wants, and we need to be patient for God to meet our true needs eventually. Being faithful in prayer means trusting God to take care of us when we’re having a hard time, and also being thankful for His caring when we’re doing well.

This verse, exept for the words on prayer, actually also speaks to non-Christians. If you believe in some other deity or spiritual figure, or even if you’re an atheist, you still need to be appreciative of what you have when you’re faring well, and patient for time to pass when you’re not.

God, Suffering, and Post-Traumatic Growth

Some people believe that God grants Christians a carefree life, and that if God doesn’t grant us this, we must be weak of faith and/or God must be angry. We hold God responsible for all our suffering. This is kind of weird, since we do not do so for our happiness – we may thank God, but we still reecognize the part we ourselves and other people have had in it.

Also, it is common for some Christians to assume that God only allows suffering for the weak of faith. In other words, it must be our own fault of we suffer. This again is discounting the role humanity and circumstances have in people’s suffering. Then, of course, we may be angry with God and lose our faith. After all, if He eexists, why does He allow humans and nature to cause people suffeirng?

I want to talk here about growing from suffering. There is such a thing in psychology as post-traumatic growth, and I believe it is important that we recognize this in order to accept our suffering. Beyond being angry because we suffer – which of course is a stage of grief too -, can we try to use our tribulations as an opportunity to learn? For example, many people who have suffered a lot, learn to appreciate the little things in life. I am not saying that we need to be thankful that we endured whatever we endured, but we can use it as a springboard to growth. Let’s move beyond blaming ourselves or God and onto accepting whatever life throws at us and appreciating it as much as possible. Non-Christians can perhaps more easily acknowledge that God is not to blame for our suffering – simply because they may not believe in God -, but then again believers may find themselves spiritually growing from our experiences. I became a believer when I was in pretty dire circumstances, and I am not the only one.

Disability and Quality of Life

A few weeks ago, I read a post on gratitude for people with disabilities. It made me think: are disabled people naturally presumed to be unhappy? And if so, do we have an obligation to put up a shiny happy face to make the world know we’re not unhappy? I think indeed we are often thought of as necessarily unhappy. While it would be great if we could show some gratitude, for ourselves and others, this is unrelated to disability. Everyone can be a pain in the ass when they’re constantly grumpy.

I am a relatively unhappy and a significantly disabled person. I do not feel these two necessarily go together. And what if they do? I sometimes do feel crappy because of frustrations related to my disability. Does this make me a pitiful crip? I don’t think so.

Let’s face it: life throws challenges at all of us. It’s not like living with a disability entitles us to be grumpy all the time. On the other hand, we are not required to put up the shiny face at all times either just to show the world that our disability is not a harrowing fate.

I remember when I was aroudn fifteen participating in a preemie folloow-up study. Part of it involved a quality-of-life questionnaire. I was honest that my quality of life was pretty crap, but made a big deal out of making clear this was not due to my disability. After all, I didn’t want the doctors to think that blindness is somemthing worse than death, and, let’s be real, neonatal specialists do use quality of life to base ethical decisions about life or death of future preemies on.

Are we, as disabled people, responsible for making the world believe that disability is not a big deal? I don’t think so. To give an example, when in like 2011 two deafblind twins were euthanized in Belgium, the National Federation of the Blind (U.S) responded by playing the Helen Keller card. See, she was a major achiever and was deafblind, so deafblindness is no reason to have a miserable life. Maybe so, and I agree that a disability in itself is not necessarily a reason for suicide, assisted or not. However, the NFB did not know the specific circcumstances of these people, and neither do I. Both sides of the euthanasia debate made the case of the deafblind twins about deafblindness. What if deafblindness was only used as an excuse for the twins to get assisted suicide, while the real reason was subjective suffering that may or may not have been related to their disability?

Since euthanasia was legalized in the Netherlands in the early 2000s, the definition of unbearable suffering, which is required for euthanasia, has undergone significant inflation. Formerly, euthanasia and assisted suicide were only lejal on terminal patients, while just today, a man who euthanized his aging but non-disabled wife was found guilty but not sentenced. Maybe there’s a difference in that the man in today’s case was not a doctor, but people constantly make it about the wife’s non-disabled status. Let me make one point: if you allow euthanasia or assisted suicide but only on those with a disability, that’s discrimination. It’s not like non-disabled people can’t suffer. As sort of an inverted argument, are non-disabled people required to live in misery just because they don’t have a disability?