What to say when your told "your pain is all in your head".

How many times have you been told that your pain is all in your head? If you're like me, then probably a lot. People with chronic pain are faced with many barriers and daily obstacles, each one no easier than the last. Validation is an important part of accepting what your going through; it helps you to move on. You can never truly move forward with your life if doctors (especially) and family members are pushing you back.

In my experience, most doctors who say your pain is all in your head, you're just ruminating over your suffering which in turn makes your pain worse, don't really know why this happens. Most respond with some banal anecdote about stress -- which, might I add, is infuriating. So, how do you respond? How do you 'change' their minds? In short, you probably won't be able to totally change their minds, at least not during the five or ten minutes you see them. You can, however, make them re-think their position by questioning the legs of their suppositions. Here's how.

When your doctor claims stress is causing all your pain, ask him how. Ask him to break it down, chemically, and show you the physiological proof. If he cant, you show it to him.

Doctor: "well, your pain doesn't really correspond to any peripheral injuries that I can see. You're young, you look healthy. Its possible that your pain is all in your head, or at least caused by stress."

You: "What do you mean? What is stress and how can it cause my symptoms?"

Doctor: "There have been many studies done on the effects of stress on daily functioning and pain"

You: "But how is that possible? What happens?"

Doctor: "It just does"

You: "how can something internally cause an abrupt and significant change to my homoeostasis that signals the chain of events which manifest themselves in these 'effects of stress on daily functioning and pain' that you speak of?

Doctor: *disparaging and condescending look; maybe a roll of the eyes.*

You: "If you don't even know how stress manifests itself, how can you know for certain that its the cause of my problems. Aren't you in effect saying that since there's a lack of information and proof to substantiate my claims we'll just go ahead and assume that your position is by default true? Isn't that a fallacy of ignorance? "

Doctor: " The long-term effects of increased cortisol levels can cause cumulative destruction of neural tissue."

You: " I know that hypocortisolism can have drastic effects of muscle and bone, and this depletion of cortisol is caused by prolonged stress. I also have studied the programs of neural, hormonal and behavioural activity which aim at returning normal homoeostasis. Don't these all represent significant biological changes, not psychological abstractions which insufficiently 'explain' pain? Aren't even the psychological process which can cause pain 'caused' by signal transduction pathways which are in their very nature biological, and since you are assuming that only true biological processes are legitimate, then aren't  the psychological explanations you proposed legitimate? "

This could go on and on, and could pan out multiple scenarios. The fact of the matter is, you can't really claim your doctor is inherently wrong when he questions the origin of your pain, if you don't yourself know (at least in some form) the origin of pain. He is a doctor, and he that title does deserve respect -- respect is not tantamount to increases or decreases in value, though (respecting him doesn't mean he's a 'better' person).

 If you are the type of person who is willing to wait and doctor search for a physician competent enough to know something is going on, then this probably doesn't matter to you -- although everyone who suffers from some form of pain should know a little about pain. For those of you who aren't very patient, and really take these blows to heart, then knowing why your doctor is wrong could really help. If your like me, when doctors say pain is all in your head, it uproots the basic stability we have worked so hard for. I'm left questioning why I think I'm right for weeks; finally I come back to my initial position, though. Its understanding why you come back that matters. If you know why your doctor is wrong you can prevent these events from happening.

You may not be able to change your doctors mind, but you will definitely make him re-evaluate his position. This knowledge will help you personally and pragmatically. I encourage everyone to have a basic understanding of the chemical, biological and psychological aspects of pain. Its a war out there, we need to have some preparation or else we'll be quickly defeated.

The important thing to remember in all of this is humility. What angers and infuriates us can easily be converted into a weapon or tool for our defence. When a doctor is condescending and rude, returning condescension and rudeness defeats the purpose of even trying to change his mind or explain yourself. To him, you become a rude and condescending person (much like the rude and condescending person he is to you). You fear he thinks you're a weak person who 'causes' their own suffering and thus deserves to be left alone. If you respond in keeping with how he treats you, you breathe life into this self-fulfilling prophecy. The key: be humble, civil and forthright. Treat others with respect, even if at times you feel they don't deserve it; people respect these qualities.

“Deep is the well of truth and long does it take to know what has fallen into its depths" 

-- Nietzsche. 

Pain and Frustration:

For me, pain and frustration go hand in hand. Any injury I've ever had has in some way prevented me from completing some task or goal. Frustration can be defined as a person or stimulus which prevents someone from completing a task or a goal. Standalone frustration is a disconcerting feeling, combine that with an impelling force, and you have a recipe for a bad day.

For me, frustration not only means the inability to do things I enjoy purely for enjoyments sake, but also things I enjoy because I'm required to do them, and things I'm simply required to do. For example, I can no longer freely join my friends in their activities; I'm constantly hesitant from fear of doing bodily harm or damage. When I started blogging again a few weeks ago I set a goal to write ninety minutes a day. That goal eventually developed and I began to create blogs centred around one idea (not just a stream of consciousness) and blog instalments in various parts; this all entailed a great deal of research and planning. My pain also prevents me from seeking, and holding, gainful employment; in all honesty, I'd even be 'happy' -- although, satisfied is a better word -- with a job I completely hate. This is my frustration: the inabilty to do anything I once accepted freely as a normal part of life -- something that would always be there to fall back on no matter what, and something I totally took for granted.

Naturally comes the quesiton: why can't I do these things. I've struggled with that question a lot. As a result, I've been able to pretty clearly delineate 'why' and set it apart from the ambiguity of suffering.

My shoulders are what hold me back the most -- they just don't 'work' properly. I have bi-lateral labral tears, bi-lateral acromioclavicular and subscapular bursitis, rotator cuff tears and inflammation, bi lateral  luxations in all three joints of the shoulder (acromio-clavicular, gleno-humeral, sub-scapular (as well as sternoclavicular)) and problems with my lattisimus dorsi and teres major on my right side. I also have issues with my neck: atlanto-axial instability and suspected cranial settling and Chiari Malformation. All of these injuries have culminated in daily pain -- I'm hesitatnt to totally label it 'chronic-pain' because there is so much tissue damage occurring daily. The majority of these muslce groups, tendons and ligaments are innervated by nerves originating in the corticobulbar and corticospinal tracts which are under constant compression as a result of my AAI and suspected Chiari, which further aggravates my state by contributing neuropathic pain. Anyone with a basic understanding of physiology and anatomy can make biomechanical inferences, even at an incredibly basic level, to help them understand how even basic movements like typing, picking up a piece of paper, writing or even moving my arms will result in pain; the more and more those movements and actions are repeated, the more prone I leave myself for injury.

I often find myself in this state of perpetual pain. I sort of experience it in ellipses, or cycles -- better for a little while, then worse for a while longer. I often compare it to a migraine. Migraines have four stages -- which is something most people don't know and is why the term 'migrane' has come to connote all things headache-ey. The first stage is called the prodrome. This phase consists of irritability, altered mood -- depression or euphoria -- yawning, excessive sleepiness, craving for certain foods, cramping in the neck and visual or visceral symptoms. The symptoms precede the migraine attack by a few hours or a few days; eventually the person and his or her family recognize this stage, and can detect when a migraine is near. The next stage is called aura. This phase immediately precedes the headache and is characterized by neurological manifestations -- usually visual disturbances; flashes of light etc... Stage three is called the pain phase, or the headache phase --  I don't really think I need to explain this any further. Finally we have the postdrome stage; the effects of the migraine can last for days after the pain phase has occurred.

My experience with pain is a sort of pseudo-cycle of sorts, where I have an event which precedes my pain getting worse, a stage right before when I know that the pain is coming, the pain itself and then the effects -- which last more than a few days, that's for sure.

Pain frustrates me, and I have yet to come to grips with how to manage it effectively. Its difficult to find an effective way to cope when your constantly being thrown for a loop.

Subtype-selective Sodium Channel Blockers: A Novel Treatment For Chronic Pain.

The American Academy of Pain Management estimates 50 million Americans suffer from chronic pain. A study conducted in 2000 surveyed millions of American patients; 83 million indicated that pain had affected their lives in various activities. Often pain goes untreated, or if it is treated it is done so poorly. In Canada and the United States, abuse of prescription pain-killers has risen dramatically since the 1990's resulting in stricter guidelines for prescribing physicians; many doctors are reluctant to write out a script for a narcotic pain-killer to non-cancer patients, even if they clearly need it. A study conducted by Clinical Pharmacology and Therapeutics (2011) found that more and more adolescents are abusing narcotic analgesics for, not pain, but sexual facilitation -- its no wonder doctors are hesitant to prescribe narcotics. Those of us who suffer from disabling, chronic medical conditions find it is getting harder and harder to receive adequate treatment for our pain. In many ways the media coverage is a good thing -- it alerts doctors that they need to be careful who they prescribe certain medications too; however, the constant reports and articles about narcotic abuse in patients receiving treatment creates a false portrait of the greater population of pain-patients and establishes a schema doctors readily engage when they decide who to prescribe too.


Pain sensations usually arise in sensory neurons of the peripheral nervous system, which then relay information back to the Central nervous system. Pathological pain sensations (as in the case of chronic pain) can arise from changes in excitability of these peripheral sensory neurons. Voltage-gated sodium channels are key determinants regulating action potential generation and propagation; thus, changes in sodium channel function can have profound effects on neuronal excitability and pain signalling. At present, most of the clinically available sodium channel blockers used to treat pain are non-selective across sodium channel isoforms and can contribute to cardio-toxicity, motor impairments, and CNS side effects. Numerous strides have been made over the last decade in an effort to develop more selective and efficacious sodium channel blockers to treat pain. The current goal of most pharmaceutical companies investigating new ways of treating neuropathies is to develop more targeted sodium channel therapies.


A new study published in the British Journal of Pharmacology (2011) looks at the targeting of sodium channel blockers into nociceptors to produce long duration analgesia. The researchers concluded that targeting these charged sodium channel blockers into specific axons provides an opportunity to produce prolonged local analgesia. This approach is a little different. Instead of de-activating electrical or chemically gated sodium channels, researchers targeted charged lidocaine into nociceptive sensory neurons through the large-pore transient receptor potential cation channel to produce prolonged analgesia. This new method could represent a much more effective way of administering analgesics.


There are some cases where people cannot feel any pain at all; Congenital Insensitivity to Pain is one of them. We now know, through genetic testing, that CIP is caused by genes that result in the deactivation of the sodium channel Nav1.7. They have thus linked a loss of Nav1.7 function to insensitivity to pain. Conversely, persons who have an overactive Nav1.7 channel, as is the case in primary erethromelalgia, experience excruciating neuropathic pain. As a result of these findings, investigative studies into the potential role of Nav1.7 channel drugs could have in pain management have begun. Research conducted by Cayman Chemical is investigating the role of Nav1.7 sodium channel monoclonal antibodies in mice. Because Nav1.7 channels are not found in cardiac or neurons in the central nervous system, drugs which affect these receptors will have less side-effects than current medications. These researchers hope their results will allow them to develop drugs which will reduce the pain intensity in animals.


One of the most difficult forms of pain to treat is neuropathic pain, which is caused by primary lesion or dysfunction of the peripheral nervous system. Sodium channels are thought to play a central role in the pathophysiological hyperexcitability of this form of pain by initiating and propagating most signals. The current sodium channel programs for these types of pain-related disorders focus primarily around epilepsy; however, drugs used for the treatment of epilepsy often come with many unwanted side-effects (dizziness, drowsiness, fatigue, depression and sleeping disorders etc...). Washington state department for labour and industries issued some guidelines for physicians prescribing antiepileptic drugs (AED) for pain. They note that there is insufficient data to support the use of AEDs in cases of acute, low-back, somatic, and myofascial pain. They also indicate that, although neuropathies can be treated successfully with AEDs, this is not always the case; it depends exclusively upon which medication is chosen, and the person for which the medication is chosen for. They state that gabapentin has shown the highest efficacy and should be used as a first line treatment for conditions associated with known secondary neuropathies. Gabapentin's effects can be seen within 4-6 weeks, at a maximum dose of 1800mg a day -- titration to 2400mg a day can be done, but it shows no significant clinical difference; the absorption of gabapentin is not dose -proportional (that is, less of the medication is absorbed the more you take).


Researchers at Yale have begun collaborating with Pfizer to develop novel treatments for a rare pain disorder (Inherited Erythromelalgia). Inherited Erythromelalgia (IE), also known as 'man-on-fire syndrome', causes debilitating and life-long burning pain. As we've noted previously, sodium channels are basically molecular generators producing electrical impulses (action potentials). Mutations in these sodium channels cause them to be over-active. They hope that by blocking them, they will be able to effectively treat these patients -- which up until now, have no currently known treatment options. This targeted study will fall under Icagen's broader research into sodium channels to find treatments for various pain conditions. CEO of Icagen, Kay Wagoner stated in a press release "We are very pleased to report positive progress in our sodium channel pain collaboration with Pfizer in which compounds are now being advanced into first-in-man studies. As we have reported previously, the scientific partnership between Icagen and Pfizer has been successful in identifying novel, potent and selective blockers of the sodium channel Nav1.7, also referred to as SCN9A. Loss of function mutations of this channel have been genetically linked to the congenital inability to experience pain, and conversely gain of function mutations are implicated in the pain underlying primary Erythromelalgia and paroxysmal extreme pain disorder. Based upon these genetic linkages, Nav1.7 is believed to be among the most promising targets for new pain therapeutics."


It seems as though pain is just one of those things that will be around forever. Although it does have an adaptive function, when it becomes pathological it loses all virtue. Chronic pain is a disabling condition that can leave people hopeless and broken. I often think my own suffering is the 'worst in the world'. Although EDS can be pretty bad, it has treatment options. I cannot imagine having IE and experiencing burning pain without any beneficial treatment. It would be heavy-handed to conclude that the research currently being conducted will finally remove the hold pain has on many of our lives, but that doesn't mean that it can't be adequately treated to a level where we can function normally.

Pain: is it all relative?

One of the easiest ways of learning about yourself is by comparing yourself with someone else. I can honestly say I do this all the time -- even if its an expression of incredulity or prejudice. Social psychologists have spent a lot of time and energy investigating the social aspect of humanity. In many ways, we know a lot; we understand discrimination and prejudice, conformity, and the self-concept. That doesn't mean we know everything, though. People often falsely conclude that the absence of total understanding is the presence total relativity. Our world is plagued by this post-modern meileu; where everything is relative and the only important aspects of life worth anything are pragmatic. Speaking as someone who suffers from chronic pain, I can tell you that its not totally relative.

 I haven't always been in chronic pain. My condition, for a long time, was such that I only felt pain after exerting myself. If I went for a run or a long walk, my knees would hurt. This was my life for about 16 years. At the time, I thought it was the worst thing in the world; I was jealous that my friends didn't have to take breaks or experience pain the way that I did, and how often I did. I thought for sure this was what it meant to suffer. Even in Grade 11 when I injured both my shoulders and started to experience somewhat intractable pain -- that is, pain even in the absence of pain causing stimuli -- was nothing compared to the amount of pain I'm in now. I know what its like to have to plan my movements, to express emberassingly public reluctance that's often misconstrued as reclusivness and rudeness when my friends ask me if I want to go to the bar, or camping.

Obviously trying to explain that pain can be objectively qualified by offering up subjective experiences is slightly ironic. I realize that. But induction is always probable at best, and I'll try and 'offer-up' as many relevant 'for-instances' as possible; ultimately, though,  its up to the individual whether or not they wan't to accept that for some, pain isn't purely relative. Pain is objective when you qualify it by its effects on functioning. Much like blindness is objectively qualified by how much a person can see, pain can be objectively qualified by how much a person can do.

If pain doesn't interfere with your life, then it can be classed as relative:
Very rarely does pain not interfere with your life -- whether by causing distress, effecting what activities you can do and negatively impacting your relationships; however, I'm going to define 'interfere' as preventing someone from completing daily acts of living: gathering and preparing food, cleaning, and working. These three classes of things we'll use to measure pain's interference. When pain interferes with any of these three in such a way as to totally prevent any type of long-term completion (months-years) then it is no longer relative. Most people with chronic pain will invariably experience pain doing any of these things. For our immediate goals, though,  that doesn't matter. What matters is if they can do them. I realize there will be objections to this type of reasoning; most people could complete these things. I could even do these things right now, although it would cause me intractable pain. Its important to remember that these acts are daily; that is, they require completion on a long-term scale. Yes, I could complete them today, but  I can tell you right now, if I did them all at once now, I sure as hell wouldn't be able to do them tomorrow, or the next day, or the day after that. Its in that area that pain sheds its relative skin and reveals its true, disabling self. When completing daily acts of living requires one day means they cannot be completed the next, or for a duration after. When a person finds they cannot do these basic things daily, on a normal time-scale, then their pain must no longer be considered relative and transient, and defined by others through comparison of their own levels of pain.

Because pain is such a subjective experience, people erroneously conclude that its effects are subjective too; maybe they broke their arm once but still managed to hold a summer job, concluding that all people who experience 'broken-arm-like-things' should still manage to fulfil their responsibilities. In order for those of us experiencing chronic, daily, disabling pain to gain some level of respect, pain needs to be assessed by virtue of its applied nature; that is, by how much it limits a person in how they can apply themselves. We need to leave the suffering out, that's not something that can be objectively measured... yet. Its something that requires empathy, and the only way to truly feel empathetic is to have experienced the same thing as the person you're attempting to empathize with. If we conflate suffering and disability, were doomed to an endlessly recursive cycle of defining ourselves against the backdrop of others'. That just doesn't work out well for anyone.

"Man is doomed to eternally vacillate between the two extremes of boredom and distress"

-Schopenhauer

New computer!

So my computer finally came in the mail today! 'Finally' would seem slightly dramatic if you didn't know how long this process has been. O.K., so I'll start from the beginning. I went to speak with my disability coordinator at my University this fall before classes start to set up the appropriate accommodations I would need for that semester -- not takers, extra time/ Laptop use for tests etc... -- she mentioned a grant I could apply for that would award me up to a maximum of $2,000.00 dollars for the purchase of a laptop computer of my choice. Obviously I was enthralled and started the application process as quickly as possible. When I was filling out the forms I noticed the ministry required a letter documenting the disability in question to be sent along with the file. I have ADD, and that's one of the many on the list of  'approved' disabilities -- although, with a fundamentally significant disability (EDS), I now consider ADD as benign as hunger. I asked my coordinator (for clarity's sake, we'll just refer to her by her name from now on: Nancy), Nancy, if she needed any additional documentation. She said she had all we needed, and sent my application away for processing.

December 2011, preceding exams -- actually, during the week before exam week -- my laptop of 4 years decided to stop working. This was an incredibly disconcerting turn of events, to put it mildly. I had taken meticulous notes that semester from all my courses and saved them on my laptop; I did not back them up on any form of external memory system. So here's the quandary I found myself in: a week before exams start, lap-top-less and subsequently note-less, unable to properly prepare for my coming exams.

To make a long story short, I sent all of this in October of 2011, I did not receive any sort of contact from the ministry until March of this year (2012). A long time coming, that's for sure. When Nancy emailed me telling me they had contacted me and I would receive a letter in the mail I was ecstatic! I thought for-sure the check had been mailed directly to me and I could go out and replace my now broken laptop with a functional machine! The letter that came in, though, wasn't a check, but rather a notice that my application had been put on hold pending further documentation. I knew it! I knew that I needed documentation from an approved ADD specialist! I had told Nancy but she did not believe me! I ended up going to my ADD doc to get the letter, which he happily wrote. So with some minor speed-bumps I sent the revised application and got the money and now the lap-top.

Ok, so the laptop I got is pretty darn amazing! Its the 2012 HP Envy 3D edition. It runs off a 64-bit windows software; 8gb of ram, 1GB dedicated Radon graphics, next gen core i7 processor,  17" full HD screen. Its a beast. It can handle pretty much anything you throw at it -- including 3D graphics. I wouldn't consider myself incredibly tech-savvy, but I have to say this system gives me goosebumps; I'll write a full blog on this later today.

Anyway, so the laptop came at around 830 this morning. I was still sleeping when I heard knocking at the door. I instantly knew puralator was here with my laptop. In a haze of frenzied chaos I threw on my robe, whilst yelling "one second, be right there" to the front door, signed for the package and placed it on the table.

The crappy thing about being disabled is that every choice, every movement, has consequences. We're conditioned to fear and to hesitate jumping right into a project, even something as benign as unpacking a new laptop. I knew if I jumped straight into it head-on I would be feeling it for the rest of the day -- I also know no matter what, I'll feel it for the rest of the day; the only thing I can really do is take it slow and hope for the best. While waiting for my coffee to finish I went to my room and grabbed 2 Perocet. Who knew opening a laptop could be so painful... I can barely move my arm right now. Even typing is a 'pain'. I really do hate this. But, I can't truly ruminate right now, I'm too excited. For the past six months I've been using my mothers laptop. Its a pretty decent system -- Sony Vaio -- but I've not been able to claim sovereignty over distribution of use. I have 5 brothers and one sister. I'm the second eldest -- the eldest doesn't live at home -- so I do have some ascribed authority, but not much. I've had to 'take-turn's' with everyone else. Its been... well, annoying -- to say the least. Its just good to have some freedom again.

So, here I am. Its now 10:00 in the morning. I'm in pain, but that's to be expected. I'm also excited, and oddly awake; I probably only got about 4 hours of sleep last night -- and that's quite a liberal estimate. I would like to write more, but I'm in too much pain. I intend to write a blog about my pain and pain-management later on today, as well as my hopes for blogging and the mechanisms I'll attempt to employ in organizing my thoughts on online-paper!

"We live in a society exquisitely dependent on science and technology, in which hardly anyone knows anything about science and technology. "

Carl Sagan

Distributive Justice

When I was choosing my courses last semester, I discovered a few elective spots that needed filling. I decided it would be interesting to take a political science course, so I had the registrar enroll me in POL-121 (Intro to Political Science). I'm Canadian, so the course concerned itself, for the most part, with the Canadian political system -- different branches of government, legislature etc... The course required that we read a novel from a list of different authors and write a short 4 page essay. For some reason we got to talking about Karl Marx and communism. I remember specifically hearing this one line over, and over, and over again: communism only works in a perfect world.

There's no arguing that this point is true, its self apparent; our world isn't perfect, and so communism as a political system shouldn't, in theory, work (this also turned out to be true in practice, as well). But that's not why I'm telling this story. What concerns me is this inherent feeling of grandeur in our political and economic system based purely on our erroneous perception of its apparent success. When Churchill gave his speech about the 'iron-curtain', the world was split into this polarity: communism and non-communism. For a long, long time this is how things were; the idea of communism was ever-present in the minds of people for the better part of thirty years. Apparently people still think along those lines -- except for now they substitute non-communism for the free-market. 

What my ignorant contemporaries failed to realize is that capitalism doesn't really work so well either. Only in a perfect world is capitalism a good choice; in our world, it falls short, very, very short. Capitalism rewards the captains of industry and the common man alike... so long as they are capable and willing to take what is 'rightfully' theirs. Most people buzz past those last few adjectives without giving them a second thought. That's because most people are healthy. For most, capitalism is a great system. It ensures people get what they deserve because they deserve it -- that is, because they work for it. But a system which prides itself on its equity humiliates itself all the same. 

The problem with capitalism and the free-market is that its a system built around the presupposition that a countries inhabitants are healthy and capable of working towards their goals. I mean, were not even talking about self-actualization or wish fulfillment here, for quite a number of people this system fails to provide for them basic, fundamental needs: shelter, food, health-insurance. 

Distributive justice is a fatal misnomer; its equity for those who are capable of providing for themselves, and the weakest form of social security for those who are not. The resources in our society are allocated in such a way that those who truly need them are never able to have them. There are three ways the distribution of goods in a society are measured: equality, equity, and needs.  Our government ins't concerned with needs on a macro level, let alone on the micro level. Its too wrapped up in worrying about how it will cut tax breaks for CEO's of fortune five hundred companies to consider more efficient ways of allocating the GDP and establishing subsidies and disability programs for those who need it. We distribute resources as compensation for those who have contributed the most. Thus, Doctors receive higher incomes than supermarket workers. The rational behind this is one grounded upon the philosophical theory of "all-things-being-equal". All things are never equal though. The grocery store worker probably has a legitimate claim to his job; laziness is a word we substitute when we don't want to abandon our belief in a just world. 

This raging debate isn't simply about the money, either. Its about ethics. What makes us different from the rest of the animal kingdom? Did we get lucky? Did Natural selection non-randomly select our random mutations and favor us over our primate ancestors? Or did a God put us here to rule over the earth? Or both? What ever way you choose to answer these questions shouldn't bear fatal consequences for those who have simply had a bad stroke of luck -- the disabled (whether mentally or physically), or the unemployed. It's this student's unprofessional and largely (albeit to my own hubris) uneducated opinion that goods and resources should be distributed on a needs and compensation basis. Wherein those who can afford (and I don't mean economically) to work and achieve those heights our society regards as commendable are compensated fairly for their efforts, but those who cannot work still have safety and security. In Canada, the maximum monthly payout for provincial disability benefits is somewhere around the neighborhood of $850.00. If you do the math, before taxes the disabled collect a whopping $10,200.00 a year (the Canadian Pension Plan is a little higher, sitting around the $900.00 marker). I'm not sure of the exact statistics, but I believe the poverty line for Canadians is anything lower than 20k.... Fair, right? 

If you walk up to a random person on the street and ask them their opinions on social welfare and disability, I'm willing to bet most will respond with threateningly disparaging remarks indicating the belief in the 'American-dream' is still publicly held. We live in a world scarred by a generation of venerable thinkers adhering to a post-modern worldview that holds each individual can do whatever they want, irrespective of limitations and barriers -- because such things are so obviously mental and subjectively relative... This is a world where shows like Degrassi and Glee depict the disabled and downtrodden as triumphantly glorious, and House shows us that even with the 'worst' disability you can still become a successful doctor. Now, don't get me wrong here. I'm not saying our media should get a little darker. What I'm saying is that this whole idea of freedom and circumnavigation is just totally not an accurate depiction of what life with a disability is really like, economically or socially. 

I can't speak for everyone, only myself. I think our system needs an over-hall, and quick. I think the guidelines for claiming disability should be strict, but not too strict so that those who actually need them don't have access to them. I also think that the premiums need to be increased, at least to a level where a person can afford their housing and food costs, let alone therapy and medication. Is the pay-out so low to deter those who would seek to swindle their way in from 'cashing in big time'? Maybe. If that's the case then we are in much more trouble than I thought. 

"Ask yourself whether the dream of heaven and greatness should be waiting for us in our graves – or whether it should be ours here and now and on this earth."

Ayn Rand

First post

I've run a few blogs before -- to no real ends. I've not had 'success' with any of them, either. I'm not specifically talking monetary success, but my definition leans more towards 'up-keep' and 'determination'. I've learned a lot about myself over these past few years. After being diagnosed with a rare and incurable connective tissue disease called Ehlers-Danlos syndrome I thought my life would get better. I always thought answers were missing. Like finding out what was wrong with me was more important than why, or how.

Although this is true, in a way, it hasn't manifestly made things easier. I have always contended that putting a name to suffering is vastly important; to do otherwise would simply be masochistic. In the years preceding my diagnosis I had encountered this same question over and over again: why do you want to be diagnosed with an incurable disease with no treatment? Whats the point? I could never really come up with a good answer on the spot, and to be perfectly honest, its probably something I'll have to come back to. But I'll give you the answer I told them: because its true.

I understand that these 'differences' between 'normal' and 'abnormal' bodily sensations are largely arbitrarily named, but that doesn't mean the distinctions are totally useless. I understood from the get-go that my body could do things that weren't normal. I had this intuitive 'gut-feeling' that things were off. So I figured it stands to reason if some things are off, more probably are too. So I went looking. I had come upon EDS by accident a few years before and just brushed it off as impossible -- at that time I was of the camp of people who actively engaged in thinking the world was divided by this evenly and easily recognized polarity: some things are, and others aren't (allowing the subtleties of truth allude). A few years later I came back to that distant EDS diagnosis, only to find that it totally made sense.

This repartee between myself and intrigued physicians has become more eloquent, I guess. Now I respond: well, you see,  EDS represents a multi-systemic disorder with a constellation of symptoms that often culminate in substantive disability, requiring special treatment in the case of surgery; even treatment with broad spectrum (that is, medication that many take -- even those unaffected by disorders of connective tissue; not to be confused with broad-spectrum antibiotics) protocols requires a certain penchant and special touch. I tell them if something happens to me that requires surgery (which is currently the case) I would like to have the heading of a recognized disorder on my file so that the surgeon or physician can reflect on relevant case material from other people with the disorder facing, or having faced, similar issues. In effect I would rather someone employ an educated (however slightly) representativeness heuristic rather than an availability heuristic.

I started talking about the fatigue of writing, and I'd like to return to that. This post isn't specifically about my struggles with disease, but rather with my hopes for future posts delineating my struggles with disease -- among other things, too. I can't tell you how many countless hours I've spent wasting my time surfing the web thanks to add-on's like 'stumble-upon'. I have to say though, I've come across some really good stuff while 'wasting my time'. One thing in particular: how to become a good writer. I've always considered myself to be a fairly good writer; one that may fall under the category of 'slightly above average'. Writing takes a lot of attention, and a lot of determination; two things I don't have in abundance.

Its my hope that I'll continue to write in here. Right now I've rather optimistically dedicated myself to 90 minutes of writing per day. As I'm currently disabled by EDS, pending further treatment, I have the time; its now just a matter of making that time valuable.

I want to end each post with a good quote. Quotes can be very valuable when used in the right context, but they can also be horribly banal when used in the wrong one; think of how many times you've probably read a quote by Einstein in helvetica over a picture of his face on some post-modern hipster blog -- undoubtedly the among the foremost of his professional aims. To those of us who are critical thinkers,  this is annoying. I will try my best to avoid creating such quandaries in my own writing, and I hope you will dedicate yourself to such practices in your own!

"Men's wretchedness in  sooth I so deplore,

not even I would plague the sorry creatures more."

Goethe's Faust