Are you afraid of being afraid?

The property which causes that sudden feeling of dread when confronted with a painful or stressful situation is anticipation. We are very symbolic beings. Our neocortex alone dedicates millions upon millions of neurons to the task of recognizing patterns; and almost double that number are redundancy neurons which are tasked with recognizing patterns of patterns. When we experience a stressful or painful event, our minds work to symbolize that event, and encode context specific patterns. Any stimulus involved in that event is further associated into that symbolism. As a result, we don’t just experience one stressful and fearful event. We experience thousands of different versions of that very same event. Over time, we begin to consciously recognize this confluence: dread sets in.

We match up this event consciously with representative standards in order to solve the pressing problem stress is meant to create: can we overcome, or do we have to adapt? As a result, if the event (which is now more of a state) in question becomes a stable state of existence, and that state is grossly disproportionate to societal standards, we begin to mourn.

The initial assessment and span of time required to encode and regulate redundancies and consciously digest all the necessary information just simply must be endured. Yes it’s going to suck and it most definately will have a negative impact on your quality of life. All things being equal, I would hope that this wouldn’t happen to anyone. But all things aren’t equal, and so this stuff does happen, and it happens at an alarming rate – for some, at such an alarming rate they cannot find the ability to cope and instead take their lives. You cannot change the fact that it does happen, and you should not change the fact that you become familiar with it. Most people will catastrophize and admit defeat; they believe they are destined for a life of misery and pain. But the only way they can really ‘know’ what misery and pain entail is by matching what they’re experiencing with generic standards. They mourn based upon the difference between the two.

Let’s say it was the norm for a people of a certain society to be blind. In our world, we view blindness as a disability, but in this particular society, it is the norm. If a sighted person became blind in our society, but was informed of another society where it was the norm, is it possible his coping skills would improve? You can obviously make the claim that objectively having sight is better than not having sight, always. Healthy people living in our world with no visual disabilities are absolutely happy and content. Why? Well, because as far as they know, they are at the apex of what we call the ‘generic standards’. Lets imagine some time in the distant future we gain the ability to communicate telepathically, to see and think on a quantum level, and never die. A person living now at the height of his health is relatively satisfied. Lets further suggest even that this person knows he will probably live forever (life extension therapies are available which will ensure his foreseeable lifespan). We can all probably agree this is an ideal scenario and probably accurately guess at this persons sense of well-being. Lets take this person and place them in the future. In the future, remember, people can think telepathically, have incredibly advanced IQ’s, never die, have none of the pratfalls of human biology, and can think at a quantum level. Would that man be happy living there, and then? I doubt it. I think he would be as miserable as the man living in our world without eyesight, or the woman who cannot move anything below the waist.

What I’m playing at is an existential interpretation of illness and disability, rather than a cultural and societal one based upon norms and averages. When we are ill and afraid our minds conjure horribly unbearable emotions and force us into the darkest corners of the most depressing scenarios. The causes of these phenomena are varied and impossibly complex. But for once that complexity does not hint at a mindless fatalism. We think in averages and problem solve with patterns. We are symbolic and allegorical creatures with a knack for intuition and emotional reasoning, but we kind of stink at calculating the cold hard facts. We label realists as unemotional robots (a title I have been affably given, many times…) and praise idealists with their deep insight. The answer isn’t a ‘balance of the two’ – which seems to have become the catch-all category for people who don’t really want to think too hard about the problem. Offering a banal ying-yang response to a complex question fundamentally presupposes that the two poles in question are the only two poles… and further that they are also the correct poles. That’s not always the case, and particularly in this situation it is definitely not the case. In this situation, dealing with fear and with expectations and mourning, the answer comes in the form of a question: why is standard upon which your fears are based the only possibly and necessary situation? Is it really the only possible state of existence? Is it possible things could have evolved differently? Is it possible we could experience pain way differently than we currently do? And death? And why does the thought of death ‘objectively qualify’ feelings of absolute terror – possibly the most aversive feeling in the world. The answer is that it one hundred percent does not. Death is the zenith of symbolic thought. We have absolutely no clue, subjectively, what death entails. And so since we don’t have even a marginally accurate redundancy for death, our patterns will be based solely upon weak metaphor and general symbolism. When we think of death thoughts like darkness and night-time and space, and cold come to mind, accompanied by feelings like ‘where’s mommy’ and ‘someone save me’.

Death is further qualified by the notion that it is inherently bad. But how is it? If it weren’t for death, there would literally be no new life, or any life at all. You are hear reading this only because trillions of ‘things’ died so that you could be here, at this particular moment of terrestrial time. There’s a certain feeling of endowed responsibility and pride in that thought, isn’t there? Further, what is greater in our universe, life or non-life? Non-living things, to be sure. There are more atoms and molecules and mass collections of ‘stuff’ out there than there are complex life forms. There is also more ‘darkness’ than there is ‘light’ – which is another great example of our weak symbolism and metaphor. Darkness is not inherently scary. That being said, place the bravest man in a dark room with loud haunting, staccatto noises and he will surely experience fear.

The point is simple: you qualify your feelings of fear by searching for standards with which to compare your situation to. The problem is in the limited number of standards we can come up with and find, and the definition of standards itself. Human emotion plays us and convinces us that the proof is in the feeling. Next time you’re feeling afraid, think of how that situation may be not a bad situation, or may be a different situation. If you can think of a way in which the painful or stresful situation, in some possible thought experiment, could be good, or at least not as bad, than I assure you your fear will lose a tremendous amount of its potency.

At the end of the day, death is still bad and pain still sucks. We will all face those two things at one point in our lives or another. You do not have to give in to them and they are not the only states of existence out there. You have a choice to change the way you experience them, existentially and phenomenologically  by altering the way you go about thinking about them. Unfortunately society and religion have come together to define what good states of existence are and what negative states of existence are. To Christians, having a healthy body is good, and having an unhealthy one is bad – and usually implies some evil or past transgression. Let me tell you right now that that is fucking bull-shit. It’s a consequence of poor thought and an irrational attachment to cultural tradition. The standards society forces on us can have an unconscious  and profound effect on how you cope with just shitty situations. If you are courageous and strong, and you can bear out the initial stages, you will find a way to adapt. If you think about what I have written for a little bit each time you are faced with a shitty situation, you’ll find yourself adapting to different patterns and experiencing a higher level of peace and satisfaction.


Religious pomposity and scientific falsifiability: a brief overview

As an introduction to a series of blogs I am currently writing, I hope to achieve two things here: (1) spell out the problem as I see it, and highlight concepts which will be the topic of a future blog in this blog series – in which the subject will be explained in far greater detail. Most importantly, though, (2) to show how all of these concepts come together in the greater problem which we have all encountered in each of our lives, today. That is, the problem of science vs nonscience, or pseudoscience. The problems associated with religions, and the problems, generally, people seem programmed to have. So all I ask of you is to you bear with me; although I may appear to be fumbling around with some messy, disparately connected stuff, it will only get better! 

Religious pomposity is an arrogance like no other. The long arc of religious influence still controls some of the most important decisions facing our world today – or at least demonstrates tremendous influence. Religion has been around since time immemorial, and as a result, it is ingrained into our lives, and our very way of thinking. You can receive degrees in religion, careers in religious studies or pastorship. Mere affiliation with a particular religion in many areas of the world determines whether you live or you die. Although the religious (specifically Christians) try very hard to demonstrate ways in which religion and science converge towards a shared goal, or are at least not at intellectual war, religion is best contrasted with science. Science in its most basic form is a way of gaining knowledge and information about causality. Religion in its most basic form is an answer to many of the biggest causal questions we humans seek to answer.

As humans, we have an innate predilection to anthropomorphize, and to hierarchically abstract things. As a result of that reflex, science is spoken of as if it were a living, breathing organism; an entity (what will science teach us; science does not have all the answers). Well, it isn’t. It is a method. A method employed by inquisitive and intelligent people who require a way of understanding the world that they live in, and life itself. A thousand years ago this was called ‘philosophy’. In ancient Greece, philosophers saw unlimited intellectual jurisdiction. The impulse which established philosophy, through philosophy,  established religion. At the time, positing a god, or gods, made logical sense. Philosophers sought the truth, and proposed some theories which then caught on. But the tools they used to do this had not yet been refined by time.

Religion is an addictive substance, powerfully coercive and endlessly harmful. For the sake of brevity, let’s just say it stuck. Philosophy, however, continued to expand and grow. Eventually birthing science, and a much more sophisticated tool-set – which itself has continued to grow (and as long as there are rational, intelligent minds at work, will continue to do so). The most important quality of any rational inquiry is conviction and falsifiability; if a new theory grows out of, and overtakes an older one, follow the new theory. Don’t reject it simply because you’ve grown very attached to the older one.

And that’s precisely where we find the conflict between religion and science. Philosophy as a vector for truth, had a major part in the creation of religion. Religion posits an explanation; a qualitative explanation for the major existential and metaphysical questions facing us today. Science has proven many religious claims completely and undeniably false (claims such as the world is only six thousand years old, or that dinosaurs never existed, or that God created two men and women six thousand years ago, or that a man seeking refuge from a world-wide flood  built an ark in the Mediterranean loaded with every animal on earth which wiped out the entire human race, which he repopulated). The truths religions did hold onto were roughly carved, using ancient hardware; science is strip mining. Religion once occupied a continent, now it finds itself adrift, clinging to a life-raft built of denial and tautology.

Remember, science is a discipline defined by the urge to discover and uncover truth. When you discover a theory of everything (TOE), a theory which explains every problem and answers every question, you don’t really need to keep looking (at least for the average person). Religions propose a TOE, and so feel like they have somehow weaned themselves off the vein of truth. As a result, any new fact or novel information which disproves some religious principle is not taken seriously.

There are many subsystems within the genus ‘science’; mathematics, biology, chemistry, physics, physiology, psychology etc… So too are there many specialized practical professions which derive meaning from information gained through science; business, economics, education, politics etc… If we want to run with this ‘living entity’ metaphor, than truth is the air science breathes, objectivity the lungs, and experimentation and falsifiability are science’s leukocytes; its immune system.

Much like an athletes talent grows with practice, the scientific method is constantly evolving. We do not define truth as this abstract entity; truth ad infinitum. For scientists, true means that which, as of yet, cannot be proven false. Truth is relentlessly and rigorously put to the test.

Science only exists because we have not yet found every missing piece to every puzzle. If there’s one truth which has stood the test of time, though, it’s this: do not fit facts to suit theories, fit theories to suit facts. Changing facts and picking and choosing truths to suit the respective theory is by definition an unscientific process. On the academic and professional landscape, this is precisely where religion stands alone. Science makes the claim that truth is not totally relative, it is quantitative; that there is some answer out there. And the only way to study that is through a process of falsifiability, experimentation and observation. In science, personal preference and ignorance do not count as valid vectors of intellectual inquiry.


In the scientific community, an uneducated teenager cannot lecture a biologists on signal transduction with authority. In science, personal preference loses total power in the face of cold-hard fact. That’s because science has something called ‘the scientific method’; a system in which subjectivity loses out to factual objectivity, always. Religion has no such system to speak of. Sure there are catechisms and doctrine; theologians working tirelessly through the hand of god. But the amount of free, unclaimed territory on the religions plane is a vast, ever-expanding veld of personal preference and blissful ignorance. If a scientist wants a theory to be taken seriously, he has to prove its falsifiability.

Merely showing that you can logically falsify your theory is not enough to make waves in the scientific community. Sometimes in order to prove your theory, you must overturn hundreds of years of landmark work done by some of the most brilliant minds in history. You have to completely give yourself to your studies. You become as much a part of your theory as your theory becomes a part of your discipline. And this is ultimately the big problem I have with religion. Every Christian (I’m going to pick on Christians in particular because I was raised and educated in the christian school system) has a set of beliefs which they each hold to be ultimately true – humility is not a strong suit. And each and every christian has a rightful claim to do just that. The other day I was talking with a friend. We came upon the topic of illness. He suffers from bi-polar disorder (type 1), and I have a genetic disease. We were talking about  friendship, and my place in our group of friends. For a while now I have noticed that we have all drifted; or at least that I have drifted from them. They don’t really make an effort to spend time with me, or talk with me. And I’ve noticed how cold and distant they have become; like they don’t really like me that much anymore. I told my friend I think a lot of it has to do with being ill. He says that everyone thinks I’m just too negative, and they just cannot understand why I don’t come out with them as much anymore. I told him about my disease, and he reassured me that I have no reason to be insecure,  that I should have just tell them all. My friends are members of the dutch reformed christian community. A particular virulent strain of Christianity which prides itself in its bigotry, racism, misogyny  homophobia and emphasis on the importance of manual labor. I have two gay brothers, my father is disabled – as am I, to a degree – and I am unable to work at all for the time being. I posed this question to him: I said, imagine if your bi-polar disorder weren’t so well managed, and you were having attacks of mania and depression on a very regular basis. So much so that It affected your ability to work. to have a family and to maintain regular relationships like you used to. Now, do you think that everyone would jump to spend time with you? Or do you think they would slip away and slowly drift? Now imagine watching that happen and then trying to talk to everyone about how sorry your life is, and about how hard your troubles are? It may be important to share these things with your friends, but it may be nearly impossible to do so if your friends drift away before you get the chance’. Now here’s his reply: he told me that the only reason his illness was managed so well was because of God. That he prayed to god and asked forgiveness for his sins and in return god rewarded him with a manageable illness…

I replied with some trite banal stuff about ‘if god were true, don’t you think it would make more sense if some people suffered on earth to gain insight and wisdom for the afterlife’. He responded with some of the most childish, religious bull-shit I have ever heard. Only, to him, that stuff about Jesus dying, that veggie tales level epistemology was the holy grail. I offered my opinion, and he told me flat out ‘No, that’s ur beliefs. I hope one day you can come to believe mine’…

Frustrated doesn’t even begin to describe how I felt. I forgot about this aspect of Christianity. I have been sheltered from this crazy shit for a little over a year. And honestly, if you read back in my blogs, I began questioning the purpose and ethics of militant atheism. I thought ‘why not just let Christians believe what they want; they aren’t hurting anyone’… definitely see the flaw in that thinking now.

My point is this: there seem to be no rules Christians have to follow when it comes to making factual claims. Everything’s up for grabs because they know if they’re questioned, they have the ultimate inductive proposition to back them up: ‘God’s mysterious and he spoke to me’… or something along the lines of that (I was inspired by the holy spirit; we can’t know God’s plan now, but we will one day’).

In the coming blogs I’d like to show precisely what’s wrong with this approach to truth, and this line of thinking. I will explain some of the key concepts in the philosophy of science and how that applies to the thinking, specifically, of my religious friend, and of religion generally. Hopefully by the end of it I will have armed myself, and those of you who choose to read, with both and understanding and a defense against the crazy lunacy that is a radical Christian apologetic and religion in general.

Words Of The Day:

acme (noun): the point at which something is perfect or most successful; zenith.

accouter (tr. verb): to equip or clothe, esp. in military usage.

coda (noun): concluding passage or movement.

cognomen (noun): typically, by Roman convention,  the third name of a citizen of ancient Rome

imprimatur (noun):  A license given by the R.C. Church of approval to print a religious text or book. 

menagerie (noun): a zoo; a strange/ diverse collection esp. of animals/ living creatures.

minutiae (noun): a small or trivial detail

sundry (adj./noun): various or miscellaneous; of various items not important enough to name individually.

misanthropy (noun): a hatred, distrust or disdain of mankind; avoidance of human society.

miscegenation (verb): interracial marriage, esp. of racism and laws banning interracial marriage and copulation (use today considered very offensive, and on some grounds may constitute hate speech)

Words Of The Day:

acrimonious (adj.): angry/ bitter esp.  of speech 

acrophobia (noun): fear of heights. books

acquiesce (verb): agree passively. 

adjourn (verb): suspend/ break off with the intention of resuming later; go somewhere for refreshment (adjourn at a local pub). 

adonis (noun): a beautiful man esp. in Greek mythology.

accrete (verb): grow/ form by gradual accumulation 

argot (noun): specialized jargon of a particular group or profession. 

assuage (verb): reduce an unpleasant feeling esp. physical pain. 

asunder (adverb): apart/ divided. 

aspersion (noun) : slander/ libel/ defamation. 

artifice (noun): trick/ ruse/ wile esp. to deceive others. 

armistice (noun): truce esp. in wartime. 

au courant (adj.): up to date/ aware of what is going on; well informed.

augur (verb): portend negative or positive outcomes; predict. 






An Ethic of Altruism.

Lately I’ve been presented with my mortality on a daily basis. This has led to many discoveries. The least of which being that there are many avenues that lead to goodness, and a good life.

I’ve got a lot going on in my life, health wise; I’ve spoken of this numerous times. But feeling achy and incredible pain, and disabled, and sluggish and slow for a long period of time will eventually begin informing of different things. The pain doesn’t tell me to ‘be careful; you’re going to hurt yourself’ as much anymore, and the breathing problems don’t tell me to ‘see the doctor quick; let’s get this fixed’ as much anymore. Rather, it’s as if my body is constantly telling me ‘one day you’re going to die; that could be today, tomorrow, or thirty years from now. But its going to happen’. Constantly being fed this information has caused a great change in me.

Every day I wake up I’m grateful for another day on this earth. Not only am I’m grateful but I’m anxious; anxious to get as much done as I can. I want to help, to inspire, to impart my wisdom and the things that I’ve learned so that maybe someone else’s journey can be a little easier. Most of all I want to be remembered. I don’t want people to forget me so easily; I want my legacy to live on. That’s the most important part of my life right now – ensuring that I’m not forgotten; that I do as much good as often as I can, while I still can. It’s almost like a mania, really.

One person who embodies this form of goodness, even if they don’t really know it, is Sandy Smeenk at the ILC foundation (Improving the Lives of Children;

She’s warm, kind, caring, motherly, bright and a true force to be reckoned with. She has dedicated the remainder of her life to fight for those of us who don’t have a voice; to help the sick and the downtrodden. She’s probably not perfect, and I’m not saying that she is. I often find its true that when someone does something good, either by working at a homeless shelter, or volunteering at a hospital, or even saying a kind word to a complete stranger now and again, and is complimented and ‘praised’ for their goodness, a lot, a lot, a lot of criticism usually follows.

I’m sure there are many reasons why that’s true; maybe it reminds some of us that we could be better people, and so we criticize to reduce the dissonance. Maybe some of us are easily jealous, and want the attention for ourselves, for whatever reason. And I often find that this criticism detracts from the value of the original message: someone out there is doing some good, and the amount of good they are doing outweighs the personal benefit to themselves.

I’m wary of true altruism (I’d say the only real form of true altruism is laying down your life for another person), but I’m certain that when the consequence of an action is good, the intentions matter less(obviously there are special cases… but as a general principle).

Those of us who were unfortunate enough to carry the EDS gene(s) have to jump many hurdles and face many obstacles to get the treatments that we need; often times treatments that have life-or-death consequences. Sandy fights for us. She ensures that we get these treatments. Not only that, but she’s working towards making those treatments normative – one day future EDS’ers won’t have to have someone to fight for them so that they can have life-saving brain surgery (because let’s be honest, people like Sandy are rare).

She’s been called many things. But I like to think she’s a role model. First and foremost. It’s my wish that one day I can achieve some of the goodness (good karma) Sandy has achieved. And in the meantime, I’ll fight so that people like Sandy get the recognition they deserve. Because (god willing not any time soon) when she dies, she deserves a parade, a day of the year, and national recognition. People like her should never be forgotten.

Part of what it means to lead a good life is to recognize the goodness in others; to applaud their achievements and spread word of what they’re doing. By doing so, hopefully they will never be forgotten, but live on forever in our collective memories!

The Problem of Adaptation in Ehlers-Danlos Syndrome

The problem with EDS is that it’s a disorder of connective tissue. The collagen that we produce is faulty — due to a genetic defect preventing differential genetic expression from folding the specific collagen protein properly. Thus, the tissues that support and protect the joints, organs, and organ systems are faulty and prone to injury. For instance, when I get injured, there’s no way to tell if that specific injury will remain stable. I may even injure myself in another part of my body due to the compensation that’s forced on me from the initial injure itself.

For example, say I was to tear my meniscus in my right knee. lets pretend that I’m a stay at home mother who has to take care of the house while her husband is away at work, and two children aged 8 and 4. It comes with the territory that I’d be on my feet all day; making lunches, cleaning the house, entertaining and cleaning up after my kids. I decide its best to use crutches for the first two weeks and brace myself until I can get in to see my surgeon. I try and alter the way I pick my children up, and the way I clean. I begin to rely on my upper body, my shoulders and arms, to make up for this sudden and drastic loss of mobility. After a few weeks, my arms start to give out and I have to redevelop a system of adaptation all over again; this time with fewer and fewer resources on hand.

This is the most frustrating side of EDS: how little time we have between injuries, and what little notice we have that an injury is coming.

I’m still trying to figure out a way to cope with what EDS throws at me; its difficult when the static aspect of your disease only surfaces if you spend your life lying on your back in bed.