Corporeal Suffering

When one considers the conditions upon which life arose, the daunting prospect of defining and publishing the spirit or soul often seems to become more a process of allocating resources, rather than deconstructing preconceived beliefs. Struck by the myriad challenges early man had to face, substantively swathing somatic suffering beneath a protective overarching reality was the only way to survive. We find, here, the soul in-situ.

What little we have learned of evolution dictates the rise to power early hominids experienced was one of grave struggle and persistence. They did not experience the 'pangs of life' any more than the definition of life did. This separation of terms only came to life when life itself became a separation of terms.

If we can define corporeal suffering than we can define the soul, life itself. What we find, however, is not a cut-and-dry reality, but one clouded by time and cleared by ambiguity. I think we are deconstructing the wrong term; our cause itself seems negligible

The contemporary definition of corporeal suffering is one which seeks to separate the spirit from the body. Having all the clues in order, it seems, we must have found the bedrock of all existence. However, from this modality alone, when one uses the same variables - although changing the values - we find a massive expanse of incongruence; finding within this a new set of conditions.

1. Early man unarguably experienced widespread (over-life, not over-body (contracorporeal)) pain tempered only through progression and compensation. 
2. Early man did not retain within his neurological faculties, the same ability to experience and translate pain. 
3. Early man became pain; in that pain, defined as respite from positive sensation, was itself a positive sensation alerting one of danger. 

The lists that I form continually lead to the creation of a soul from abdication of a single reality, rather than the ascription of one. 

In light of all this, how can I make sense of pain in terms that themselves are nonsensical? Pain, then, cannot be classified in terms of body and soul, if soul can yet still be defined as body ad hoc. 

How my story goes

It all started when I was young, as I'm sure it did for many of you as well. I had broken my leg at the library when I was two. I remember it pretty clearly to this day: me and some random kid were spinning what looked to be Christmas tree book-holders and for whatever reason he decided it would be a good idea to push it on me. So there I was, two years old, crying, with a broken leg, at a library... Long story short: broken tibia. When we were in the hospital this Doctor didn't believe that my leg was broken - even through the reassuring comments provided from worried parents, combined with a  continual flow of tears and crying that should have ushered in a sense of, well, reality, he stood his ground? Doctor-dick made me walk the stairs... Yes, this sadistic, ignorant man made a two year old with a broken leg attempt a climb which would, under normal circumstances, tire him. So yeah, I guess you could say from a very early start I've had an honest connection with the health-care system.

In grade-school I was always that kid who did weird, funny stuff. I have ADHD (although not diagnosed until an adult), so I'm sure that facilitated the process. I was always one to try and get a laugh, no matter to who, or whats expense - often even my own.

In about the fourth, or fifth grade I started to have some pain in my knee. I went to the doctor and she affirmatively said, without ordering an ultrasound or any other sort of diagnostic test, that I had partially torn my patellar ligament. I found this hard to believe, seeing as it wasn't an acute episode, but more something chronic.

When i was a kid, myself and my brother used to get what we termed: pulse pains. We would just get a painful feeling in the radial artery (just at the wrist) and the anterior tibial artery (inside of the ankle, just below the medial malleolus). These sensations would last for five or ten minutes, and would usually temper slightly if we applied pressure - which we frequently did. I told my mom of these 'pulse-pains' and she just brushed it off by saying: having pains in your veins is impossible.

I was always a small kid; very short, and very, very skinny. I remember hearing of one time during a swimming lesson when a woman approached my mother to remark how I resembled a child from the pictures she had seen of the concentration camps. My mom laughed and quipped about her jealousy of my metabolism. In grade nine and ten I was still the same, maybe a few inches taller. When grade eleven rolled around I had a massive growth spurt. I grew close to six foot two, gained an even 50 pounds. I just really, really got big...fast. I'm in now way suggesting that that had any bearing on my now fragile body, it was just a weird phenomena.




I had begun to take up boxing in grade ten, and by grade eleven I considered myself a pro. I was always obsessed with working out - it was a great cathartic experience, plus I just looked good! During the summer entering grade eleven I would probably say, on average, I worked out an hour and a half to two hours each day. Grade eleven finally rolled around, and so did the old routine: boxing, work-out, boxing, work-out. Lets just say that my studies weren't my primary focus - a topic for another blog.

Something happened to me in the summer of 2007, the summer before my final year. That August long weekend me and some friends had planned a camping trip. The Friday before we were to leave we were hanging out at my friends house - I kept complaining about shoulder pain. I was walking funny, and coddling my right side. My shoulder was all screwy. It was elevated and over-pronated anteriorly. It was all swollen. It was painful. I sort of made some loose guesses as to the cause of this pain: working-out at the boxing gym, fighting, training. I don't know, I think if it was a sudden traumatic thing that I would definitely remember, but I don't.

For the next four years I would be plagued by a serious of painful injuries, all of which seemed to stem from this single, injury of fate.

The year following my Injury I had real issues trying to get my doctor and family to take me seriously. No one would. My doctor said it was probably a pulled muscle, to which I replied: 'you can have a pulled muscle, a muscle this painful, for over a year'?. She responded positively. I've had dozens of x-rays, ultra-sounds, and physical examinations, all of which left me bewildered and depressed. I remember when there was a time I wasn't in pain at all, those truly were the days.

After dozens of frustrating visits with Doctors, I have finally found something that fits: Ehlers-Danlos syndrome - Hypermobile type. I score an 8/9 on the beighton scale. I think I mentioned earlier that I have ADHD. Well, this is where the ADHD comes in, and comes in strong. Over a course of two years I was a patient to Doctor Todd Bently (an orthopedic physiatrist from Hamilton, Ontario specializing in sports rehabilitative medicine), someone who couldn't figure out what was wrong with me, but knew that my complaints were at least fairly serious. Through a series of MRI's (a few of which I missed, thanks ADD!) we discovered some labral tears, and a load of inflammation. He gave me a cortisone injection in my shoulder, which didn't work. A brace for my knee, which didn't help. And disrespect for my value as a human, which made me depressed. In all fairness, I really didn't tell him much about my family. I don't have a, well, lets say normal family setting to rely on in situations where an extsensive patient history is called upon. For instance: I never mentioned my mothers scoliosis, hydrocephalus, pain, easy bruising, soft skin; my grandmothers R/A, soft skin; the family history of soft skin and heart issues. I never thought to tell him about my brothers stretchy skin and hypermobility (two of them). So I guess it's partly my fault as well. But he was a dick, lets be serious.

So, here I am now. June of 2011. I have just completed my first year of university... and I feel like I'm always on the verge of death. I've spent thousands of dollars on rehabilitation and physiotherapy, to no avail. I have double-depression (dysthymia and MDD), ADHD, and generalized anxiety disorder (with a history of agoraphobia and panic attacks). I'm in chronic pain, and every movement I make must be planned out in order to prevent more pain. More pain sucks. I'm too insecure to get a girlfriend, and too lonely to abandon my unsupportive friends. I have, however, a silver lining to this story! I found EDS! Not a lot of people understand how important it is to have a name for your suffering. Mindless suffering is masochistic, so why force people to it? We are all looking for answers, if we just stopped with our preconceptions, we would be so much farther ahead!


So thats me, my ADD, EDS, and GAD. I hope you enjoyed getting to know me, sincerely Oskar: we are all Humpty Dumpty!

[So to make you even more aware of something you are probably largely indifferent to, I'm going to list all my symptoms of EDS!]

• Pain
• Joint instability
• Recurrent atraumatic shoulder subluxations. 
• Recurrent atruamatic hip subluxations.
• Recurrent atraumatic sternoclavicular subluxations
• Bi-lateral retinaculmn tears (inferior L, superior R) accompanied by peroneal tendon subluxation. 
• Bi-lateral AC subluxation/ inflammation/ pain.
• Patella tendonitis, tear, and pain. 
• Hypermobility of the knees, elbows, shoulders, feet, ankles, wrists, neck. (including subluxation in all)
• Cervical Instability
• Insomnia. 
• Depression. 
• More pain!
• Acid Reflux- bad. 
• Keratoconus 
• Irritable bowel syndrome. 
• Brain fog!!
• Mild fever - present for months at a time. 
• Tingling/ buzzing sensation on face (parasthesia) 
• Headaches - Migranes 
• Chronic Fatigue 

So, yeah. That's me pretty much summed up in one list. I am a collection of pathologies. Whoopie!  I remember the bus rides to High-school as a kid. They were so painful! It was literally torture having to wait for an opportunity to go the washroom. IBS was, by-far, the worst thing back then!

The Role of 'Brain Fog' (cognitive dysfunction) in the Ehlers-Danlos syndromes.

After surveying hundreds of forum topics, articles, and books, it seems to me that almost every patient with Ehlers-Danlos syndrome, at some time, to a varying degree, experiences what many call 'brain fog'.


The average definition of 'brain-fog' can be found within this set of criteria:

• Short-term memory loss. 
• Inability to conjure up old memories - long-term memory loss. 
• Loss of attention.
• Decline in problem-solving skills.
• Loss of organization. 
• Decline in active self-talk.
• Lack of concentration. 
• Fatigue 
• Confusion. 
• Balance issues

These all contribute to form the condition many colloquially refer to as 'brain fog'.  If you think that you're alone, then you're wrong! Millions are affected by cognitive dysfunction, for many different reasons (of which I won't go into great detail here); sarcoidosis, head trauma, encephalitis, certain heart conditions, the list literally goes on, and on, and on; however, whats interesting to me is the prevalence this condition has in the Ehlers-Danlos syndromes.

If your reading this, you probably already know about EDS, so I won't go into explaining that. A myriad of conditions are associated with EDS, the ones that contribute to what we term 'brain-fog', however, form a much smaller, and much more precise list.

1. Postural Orthostatic Tachycardia (POTS) is a condition characterized by: the body's inability to make certain adjustments in order to counteract gravity; an increase of 30bpm (or sinus tachycardia) when changing from a supine to an upright position - returning to a supine position usually returns bp and heart-rate back to normal levels. POTS, very often contributes to the progression and development of cognitive dysfunction to a certain degree. The brain fog itself is postulated to be caused by, in this instance, a poor supply of cranial blood and/or cranial blood volume. A poor supply of cranial blood basically decreases the amount of oxygen available to the brain. 
2. Cervical Spine Instability Is a condition defined by: an inability of the cervical spine to, under normal physiological loads, maintain contact with other vertebrae and prevent nerve damage/ pain. Physiological loads can be defined as the load of your head along with the force of gravity. An example of a physiological load in this instance would not include neck strengthening exercises, or balancing heavy objects atop ones head - which in many instances, do contribute to cervical instability. There are two basic types of cervical instability: chronic instability, and acute. The former is the one most EDS'ers deal with on a regular basis. Due to our lax ligaments and collagen abnormalities, we do not have the tensile and elastic qualities in our spinal column (along with everywhere else in our bodies) to maintain form and resist external/internal forces. Most people with HEDS (hypermobility type) will experience cervical instability - almost always chronic; unless surgically repaired. This instability can impinge nerves and cause undue amounts of pressure on the brain stem, possibly leading to compression of important structures and a build-up of CSF (cerebral spinal fluid). CI can also  aid in the development of Chiari Malformations - which is next on the list. 
3.  Chiari Malformations are functional, structural defects in the cerebellum - the part of the brain that controls balance. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. The most common CM is Type-I; usually found on accident, this type manifests in childhood - or at birth - and causes no serious symptoms: aside from headaches, and facial pressure. [http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation]
4. Dysautonomia is described as any condition effecting the autonomic nervous system. The autonomic nervous system, for those of you unfamiliar with the term, is part of the peripheral nervous system that functions below consciousness and controls visceral functions: heart rate, respiration, salivation, digestion etc...for more information about the autonomic nervous system follow this link [http://en.wikipedia.org/wiki/Autonomic_nervous_system]. Dysautonomia includes conditions such POTS (already listed above) vasovagal syncope, neurally mediated hypotension etc...for more information about Dysautonomia follow this link [http://en.wikipedia.org/wiki/Dysautonomia].

These four disorders, along with Chronic fatigue syndrome, depression, and stress all contribute to the formation of cognitive dysfunction.

Although a majority of the EDS population at one time or another experience cognitive dysfunction, that does not mean that everyone experiences cognitive dysfunction; nor does everyones take the same shape, and to the same degree. There is no cure for cognitive dysfunction; however, (and I hate to say this stuff because it does bother me when I read it from others; it definitely sounds like a cop-out) by finding and treating the cause (if their is one), or by eliminating others, symptoms can be relieved. Certain medications used for ADHD have also been found helpful in the maintenance of cognitive dysfunction, as well as life-style and dietary changes. Certain brain exercises have been found to help in leaps and bounds for some patients: color solitaire (not on a computer); for more information on this subject I suggest reading The Brain That Changes Itself by Dr. Norman Doidge - as well as some efficient googling (google scholar works well for finding more scientific notations/ articles). In some cases, cognitive dysfunction has been linked with dysautonomia related syndromes; such as a b12 deficiency. So be sure to have your health-care provider take a full and concise patient history before simply chalking your symptoms up to stress and sending you swiftly on your way!

Also, cognitive dysfunction should not be confused with cognitive decline; the two are completely separate entities with complete separate and unique symptoms and prognosis.


A link covering those things which I did not: [http://www.drlwilson.com/articles/brain_fog.htm].

First blog!

First things first, I have to say that EDS'ers I love you all. I support whatever you do and all I have in my heart for you is compassion and understanding!

Now, this is a ribbon cutting of sorts. I would like to make this commitment to everyone:

I, Tanner Eastman, Solemnly do swear, from this point forward, to take on the full responsibility of providing each and every individual who reads my blogs with the most accurate, concise and up-to-date information on Ehlers-Danlos syndrome available. I vow to make this information user-friendly and easily accessible to anyone who wishes to read it. I will not stop at providing wide, overarching biological and physiological abstractions but will deconstruct things to their basic core to allow my readers the power to make decisions once more, for themselves.

• I will spend no less than one day per-blog. 
• I will research each point I expand upon and provide references. 
• I will take any criticism and advice you are willing to offer.
• I will help in any way I can. 
• I will not let my EDS limit me. I have been given a gift, we all have. Mine is the ability to research and overcome my vices. To concentrate on me. 
• I will help you find meaning in your suffering.

Okay, so now about me!

I have been through the craziest few years, but I have come out alive - barely! I have faced the stigma and prejudice from society, and have been disillusioned by the lack of funding research for connective tissue disorders generates. I find my  jaw dropped at the treatment myself and others face. I am not ignorant enough to believe that simply by providing awareness acceptance is bound to follow; however, I recognize thats a logical step for most. What I see as the fundamental flaw within my current health care system (Canadian!) isn't merely a lack of general knowledge of connective tissue disorders, but a flaw in patient care; a flaw in instruction and ethics; a flaw in the human character.


Time and time again I read a comment from an EDS sufferer bashing a handful doctors and at the same time glorifying one who is considerate and 'understands'. This kind of thinking on our part utilizes the same flawed logic we vociferously point out and attack in their treatment of us. If we suggest that each doctor must be the same, must be tolerant and ambivalent, then we assume that a) everyones the same, b) those who aren't the same are odd, aggravating, and ultimately useless, c) we fortunate enough to catch on to this backwards flaw in the human condition are the elite and everyone else must change and are entirely unworthy of our time and worry, and d) we disengage ourselves from the problem altogether. It seems to me that this is a fundamental flow in post-modern thought: it's okay to question everything because everything is theoretically equal, but lets just question it, lets just stop there. I say no, we must engage! The reason we are isolated and alone is because we isolate ourselves! I mean society does the same thing because we are society, we are all one; we aren't separate entities. We all share similar characteristics and innate human traits because we are all a part of the same community, not apart form it.

Generally, humans are only able to empathize with that which they are familiar; whether that be a personal experience, or knowledge and second-hand experience of suffering and its consequences on every-day life. We who have been fortunate, for example, to not experience the wrecking damage of an earthquake can never fully empathize with those who have. Sure, on principle we feel sorry, but thats exactly that, its on principle! We cannot truly 'feel their pain' because 'their pain' is only 'their's' because it was given to them. It is a gift. It allows you to become a better person by expanding your own personal palate of empathetic judgments. EDS requires a person to have experienced it, or have experienced chronic pain or other injuries. The only problem with that is that they too have faced the same stigma we do, and therefore aren't wide-spread examples of understanding and change but only a part of us - a very important position.

Humans can only function by categorizing things. We categorize things by applying wide abstractions which encapsulate various sub-sets, individual definitions and characteristics. For instance, when your playing basketball or soccer you probably don't say: pass me the basketball,or, pass me the soccer ball; however, if you do, you definitely don't say pass me the round black and white ball with a hexagonal pattern and stitched indentations surrounding each shaded shape. These abstractions are useful because they allow us to make sense of the world in a way that doesn't confuse us with useless and arbitrary subsidiary information. Now, notice how I used the word 'useless'. That is important, because if we were playing soccer it would be useless to have to use such a lengthly command in order to acquire a small return. It's useless because its not useful in that specific situation; it's not useless permanently. In the same way EDS'ers face stigma because we translate facial feedback in others, say a grimace, or rolling of the eyes, as a judgment that supports an ingrained belief held that is permanent and unchanging and represents the same beliefs as all of society. When in reality, in that given situation, what it represents is useless and arbitrary subsidiary information. For example: would it be useful for a Doctor to 'care' about our suffering? Intuitive impulse dictates yes; however, we have learned first-hand the stinging aftermath intuitive impulse leaves in its wake. Caring would require the Doctor to spend what little time he had seeing you talking about your suffering. Learning about your disorder. It would require him to leave that room - at least, from the platform we stand firmly on asking all to learn and accept - research EDS, learn about it, tell people, and dramatically change himself in ways which maybe his palate of empathetic judgments doesn't allow him to because his experiences contraindicate such change. His Idea of empathy may be progressive, it may be incredibly pragmatic. He may see empathy and change as enabling a society to advance monetarily by increasing jobs and national output. If we cannot work, how can we help him in his quest? After thinking and searching all of this he would have little time to help other patients, don't you agree. Or, if he still had time to see him, maybe he would make the same 'mistakes' with them as he made with us, and they would require him to take similar measures, and so on, and so on. Now, I'm not saying at all that any of this is right, and I'm not saying that this is a concrete truth that cannot be unchanged, either. I'm only saying, from my perspective at this particular point in time, at 248 in the morning, June 20, 2011, that is how it looks to me. I think in order to eliminate stigma we need to eliminate things in all areas of life, not simply this specific definition with particularly rare characteristics in a distant subset beneath a wide over-arching abstraction we call Ehlers-Danlos syndrome.

All I can say is that we need to question everything. I think that with questioning, and unwavering love for all living things we can overcome and conquer absolutely anything in the world. I also think that concentrating efforts is a great thing, and although we, as EDS'ers tend to hate specializations - because that eliminates our cause for general knowledge - we must all contribute to our own causes - as long as they all benefit the whole. If we are able to say, well, look that guy is incredibly passionate about that, there must be some truth, lets step in his shoes and see how he sees things, then we are able to overcome anything. By looking through someone else's eyes, we are not unchanged; however, we do not become them, which I think is a fear that prevents people from abandoning their egocentric post and venturing out on sentry duty. Thinking like a racist would, doesn't make you a racist, it helps you understand human acceptance. Some of the greatest advances in the world have come about by studying the exact opposite thing, its antithesis. In order to better understand the brain we study the brains of those afflicted with some of the most terrifying and gruesome disorders. Disorders such as schizophrenia. A disorder that leaves one unable to make abstractions, incapable of any metaphoric or symbolic thought. The seemingly ideal candidate to spearhead an EDS awareness campaign; however, what we learn from this is that abstractions are important. They allow us to make form symbolic thought, to properly engage our world. Without which we may all be schizophrenic.

I am someone who starts something with a fervent passion to generalize, generalize, generalize and come out with a specific centralized idea. But once I start considering things my ADHD kicks in and I see this same lump of raw clay from hundreds of different perspectives and realize that specifying it wouldn't do me any good because I always end up with a new specification. There is no single road to truth, just as there is no single EDS. Even the most complicated problems have many solutions. What I think needs to happen is we need to become better people. Better people will result in less pain. Difficult task to set in front of me. Probably should've just written a scientific entry, not an existential one. But here goes.

In temporary and limited conclusion, the fundamental flaw of the human character is the inability to see beyond one's own abstractions into the... see, now I'm like thinking what if thats an evolutionary characteristic, what if that can be broken down and deconstructed into a more concrete and firm truth; am I letting down everyone who reads this, because it sure feels like it. What's the Serengeti like. How tall is a giraffe, really. Is there an average sized giraffe who feels inadequate - this is called flow of consciousness, super, super productive... I'm thinking about fight club now. I just read half of the word temporary and it made me think of the tempomandibular joint and now I'm thinking of dislocations and ebay. Okay, I'm going to concentrate. Abstractions. Okay, you can all help me out. Leave a comment and tell me your ideas. Maybe I can make some sense of this.