A Principle Bigger Than Us All

I’ve spent the past two years writing on this blog (often not well) hoping to find some answers and hoping that maybe others would find some truth in my truth. I’ve had some pretty crazy experiences lately that have made me realize just how contracted my life has been. In these twenty four years I’ve been given the privilege of seeing and living many different kinds of lives. I’ve been the athlete. I’ve been the jock. I’ve been the ladies man. I’ve been the rock-star. I’ve been the ‘genius’. I’ve been the inspiration. I’ve been the loser. I’ve been friendless. I’ve been despised. I’ve been stupid. I’ve been the cripple and the burden. I’ve lived with hundreds of friends, and an in-tact family, and I’ve lived with zero friends and no family.

There’s this Becket quote that I like: there’s man all over for you, blaming on his shoes the fault of his feet. We always try to look for some meaning in the madness; some purpose. It’s an inherently human thing to do. We all at one point think that there is some great purpose for us;  that we’re some integral part of this grand design. We all hop we’re that special, and that’s one of those hopes that’s truly difficult to break away from, and incredibly hard to lose.

When I think about my purpose, and how ‘important’ I must be, I think about the disabled children abandoned because their parents didn’t want them; something that’s less frequent now, but incredibly common in the past. What about the kids and adults right now starving to death. What about the people slain for no reason but to satiate some sick sadistic warlord or sociopaths desires? When I think about these people I find it very difficult to see the great meaning in their lives. And I find it even more difficult to justify my desire to find one in my own.

I don’t know exactly what the future holds for me, but like everyone else I have a fairly general idea of the direction I’m headed in. I know that I’m going to have surgery on my spine to treat my Syrinx. I know that I’m going to remain disabled. I know that things are going to remain hard. When I think of my future I am stressed, but it’s not the surgery or the disability that make me feel stressed, it’s the lack of support and connection with others. And it’s the knowledge that the family I do have left aren’t going to make the world a much better place.

Recently my brother moved out, leaving me and my dog alone in this apartment. It’s made me really feel worthless, and really question the belief I used to have that I could find purpose and meaning. It was the hope that my brother would see my world and it would make him a better person that gave me purpose (I know that if I were magically cured right now I would go on to do wonderful things; the stuff that used to stress me out and prevent me from fulfilling my potential (the insecurity, the money-stress) pales in comparison to the stress of not being able to walk, or work, or really live. And so I thought perhaps it was logical to conclude that since he’s healthy, he could take that truth and completely transform his life; he could do the good things he is capable of doing). But now I  don’t know. It’s the actions that people make and the things that people believe and do that determine if the world is just and good. People make the meaning and purpose, not fate, not the ‘gods’, and certainly not ourselves. A person may be able to will themselves to greatness, but how you define greatness and the metrics you use to measure it might reveal that the greatest thing is to be good, not rich, or envied, or feared. Take the Kennedy family. Many revere them, and are inspired by them. But many people don’t know about Rose Kennedy. They had her lobotomized, and then institutionalized for life. She was very rarely visited. She was alone, to suffer and live out her existence; a causality for the greatness of others. And for what? Did the Kennedy’s change the world forever? Or was their greatness just as fleeting as the law student who passes his Bar, or my brother who gets the raise he’s been working towards.

The things we desire so much in this world are fleeting. I wanted nothing more than a nice car and fame when I was a kid. I pictured myself loved and wealthy. I am so far removed from that future I once longed for. If you had told my 14 year old self that in ten years I’d be disabled, in chronic pain, completely abandoned and alone, with too many scars to count, you would have crippled me. But I’m glad in some weird way that this has happened to me. It’s given me the privilege of seeing what it means to truly have a meaningful life. I am able to bear being sick and disabled and having such an uncertain future. I can find the good in those things and they are experiences and lives that I can use to paint a broader narrative with. It’s the lack of social connection. The lack of love and that opportunity to make someone better than yourself that comes with being in a family that makes me feel like nothing matters and I can’t possibly move on.

If my life has some purpose perhaps it’s to share that one small truth: being good (moral and virtuous – loyal, empathetic, temperant, prudent, just) and investing your future in others is the thing we need most in this life, and the thing we cannot live without. We can survive, and often thrive, without painlessness, without mobility, and without health. We cannot survive for very long (and we cannot really, truly thrive) without the meaning and the purpose relationships and connection to and with good people provides. It sucks going through hard things alone. But it sucks infinitely more going through them needlessly. Like Rose Kennedy, I don’t have to go through this stuff. It’s not actually going through it that stings the most (like I said before, humans are incredibly resilient), it’s the reason why I have to go through it that does. And that reason is the reason why people feel like the world is a harsh place filled with meaningless suffering. For me, that reason is that my brothers don’t understand that being good and moral means being there for others. It means just supporting them and loving them; calling them when they’re ill, trying to help them, and trying to learn from them. So that they can feel better, so that I can feel better, yes, but also so that anyone could feel better. It’s the principle that matters, not my particular happiness. It’s that my brothers don’t grasp that principle that makes me feel like my life is pointless and thus that life is pointless (their lives included, especially). I want to be happy, but I want them to want me to be happy more. Not just for me, but because it’s the right thing. I want them to get that one point. That being strong means going through hard things but remaining good. That the glory we can achieve in this life and the purpose we can find in some grand picture of some complex design cannot matter if there are people who are left in our wake starving, dying, and being killed. We can’t prescribe universal rights unless everyone has access to them. The world is harsh and life is often very difficult and unforgiving, but if people are good, and get that one main principle (being moral, and virtuous and supporting and learning from others) than even the most apparently meaningless fate can be transformed into the most meaningful one.

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.

The Truths: people don’t actually matter that much.

The importance of a proper education:

I grew up with this burning feeling of entitlement that followed me everywhere, like a friend you don’t really want most of the time, but who is always there no matter what. It was an unhealthy relationship; Entitlement made me king, and I did whatever he asked. As a child I was constantly fishing for compliments, and was quick to anger if I wasn’t in the spotlight during every conversation. I couldn’t take critique, nor could I stand rejection. I was endlessly ignorant and hopelessly insecure. This pattern of behavior resulted in my friends and family pushing me away, and ensured that I certainly would not be the center of anyone’s attention. This realization made me feel even more angry and entitled. It was a really crummy cycle that lasted almost twenty one years.

I never worked hard at anything. I have a natural gift for music, and fell in love with the guitar at an early age. I never really practiced on my own (although I loved to tell people I practiced ‘two hours a day’), but I was naturally good enough that most people never caught on. I even managed to secure a position teaching part-time at this musical academy when I was sixteen years old. I played in a few bands and wrote half a dozen songs or so. I never played for the sake of playing. I played solely for the title and the recognition.

I often project myself onto others. As a child, I always gauged how others felt based upon how I would react in that very same situation. My family seems to have quite a knack for that – a huge part in why we all hate each other (as ironic as that is). I think at the heart of that projection is a selfish mass of cells, quickly infecting everything and everyone it meets.

I was always the ‘class clown’; a born vaudevillian. I would do anything for a laugh; anything. As a result of my efforts, I lost a lot of friends, and quickly gained a pretty shitty reputation. By high-school none of my friend’s parents wanted their kids to hang out with me. All of my teachers in high-school hated me, and I spent more time trying to convince other’s of my worth, than I did working to prove it. When someone had a bad opinion of me, I hated them for it; I knew exactly why they were wrong, and just how stupid they were for it.

I hate when people say ‘we live in a time where’… I haven’t done a meta analysis of the macro-level ebb and flow of society, so I am in no way authorized to make any such claims. All I can say is that right now I live in a time where I can interact with hundreds of people on the other side of the earth in the time it takes to pour a cup of juice. If I want, I can sit back and watch hours upon hours of video footage uploaded to an online community by members of almost every race, religion, society and country. I don’t know what anyone else is thinking, or what motivates them internally to choose the paths they chose, or what external factors have forced them down the road less traveled. I don’t even really know my own life, or who I am.

The way we feel things is not a good way to define what those things are.

I do not accept the premise that we are born with an essence, and that life is just this bland journey to figure out precisely who we are. That’s like a really bad Disney movie (probably involving a golden retriever with a predilection for playing ‘sport’). I think that I am constantly changing, and constantly refining myself. A great deal of who I am is both largely unknown to me, and lost in the memories I will never remember. If I had the answers to all those questions (like who I ‘really’ am, and ‘how I became that way’), I don’t think my life would be any easier.

There are only a few things that I know for certain are true. I know that I’m not important – at all. I know that when I die, I will most likely be forgotten. I know that I am infinitely stupid, and I know that I am constrained by my own biology just as much as I am by my culture and my society. I think there is nothing profound which separates myself from the animals, although I understand that people are ‘programmed’ to think in terms almost exclusively of themselves. I think that our need to see ourselves taken after, and wanted, and loved, comes from a place of ego and delusion. I don’t deserve love, or money, or shelter, or any of the things I get. I don’t deserve to be beaten down like an animal, either… but I do not deserve this excess that I have. Even though I have hardships in my life few will ever experience, I know how fortunate and how lucky I am.

I live next-door to a family of self-centered, ignorant character, deluded by the prospect that if their completely bull-shit, arbitrary requirements for ‘living’ were met, they’d strike gold again, and again, and again. What I’m  doing is not the sine qua non of meaning. The moment in which we shed this illusion is the precise moment that our lives actually begin.

Imagine a world without (for the most part) an entitled generation of lazy narcissists who think every step they take is this great terrestrial moon-landing. Imagine making a great cup of coffee only meant that you were left with a great cup of coffee to drink. Imagine a world where reporting what shop a celebrity left was considered creepy, rather than entertainment. Imagine all the shit we could get done if it didn’t take twenty years to realize how insignificant we are? Imagine a world where we have finally accepted that every feeling actually doesn’t need to be shared, and every impulse entertained. We are betrayed by our motivations and emotions all the time.

In conclusion, through much pain and suffering I have learned to question what it means to be happy and content. I have learned that the often black and white ideals I hold as standards for behavior are as much the product of understanding as the big-bang theory is  the result of comedic genius. (Which is a very pretentious way of saying ‘I haven’t got a fucking clue’.) I don’t know every answer, and I only really know a tiny fraction of the questions. But I know that I’m not all that important, and that no one will remember me for ‘who I really am’. That small fact was powerful enough to change my entire view of my life, and of life itself. If you live life with that thought constantly consuming your mind, you will treat people more nicely, have much more realistic expectations, and be much more open to change and hard work. Once you accept that no one is inherently important, you will begin to understand the true meaning of equality.

p.s.: if the world exploded tomorrow and every person was destroyed – along with all the evidence of people altogether – do you really think the people who believe they are so important and powerful will somehow emerge unscathed? As if existence alone etches their very essence into the fabric of our universe? No, the answer is no. They die and are forgotten, just like everyone else. You’re not born more important than anyone else, so grow the fuck up and do something with your life.   


Petal for life

Petal for life (Photo credit: Leonard John Matthews)

I used to find myself confused when I thought of all the suffering in this world. I thought there must be some sort of line, some place where a person can’t take anymore; almost like a requirement. Like ‘Oh, you have 35 degrees of suffering. Oh, well, would you like to die now?’

I used to fantasize about death; think that respite from life some sort of retreat at a great resort, offering pain-free-days lounging out in the sun, enjoying… well, certainly not living.

And there’s the paradox; the inconsistency. It’s apparent in the logic employed by all who share the goal of euthanasia, or suicide, or even murder (but for consistence’s sake, we’ll not go there). Some can argue and say that under certain conditions life isn’t worth living – that it’s better, more peaceful to die (I believe ‘humane’ is the word tossed around a lot). I’d like to contend that they are certainly wrong. So long as you are still living, you have a duty; you are required to live out the rest of your days with honor, thumos and fidelity. And although I believe in an afterlife, I certainly do not believe in throwing that truth in someone’s face; let alone shoving it down their throats and forcing them to swallow.

Life is a gift; it is not a right. It’s a gift that many, many have taken from them (children, victims, the sick and elderly). So how can one somehow discover that the option of ‘taking one’s own life’ is somehow on the table, when in-front of them they also have the option of not dying open?

We all have intuitions about this sort of situation. When a wealthy westerner (or anybody, really) smashes up his car because he wants a new one, or tears his clothes, or throws away perfect food, I think there’s this universal feeling of injustice. Why? Well, because there are people out there who don’t have the luxury of such choices. People all over the world are starving, naked and without transportation. Throwing away perfectly fine clothes, or food, or cars is not only irresponsible, but unethical. And most if not all people share this sentiment – all you have to do is watch the Kony2012 video on YouTube to see what I’m saying.

So how does this pertain to life? Well, we live in an age of forgotten mortality. With the advent of modern medicine and the drastic decrease in infant mortality rates and general increases trending towards an average 82 years of life for most healthy people, we have forgotten that one day were going to die. Humans are rife with such proclivities: the proclivity to forget, to ignore, to exercise indifference, to focus attention (and conversely, un-focus attention). We are so busy that we forget how precious life is. Why is ‘depression’ a household illness? Everyone I know has either had depression, or has a family member who has depression. Most of those people have been suicidal, many have attempted, and an unlucky number have succeeded.

We’ve grown weak. We’ve forgotten what its like on the Savannah  We’ve forgotten that were going to die, and we ignore the fact that a little over 150,000 people die a day. Many of those deaths are accidents, some are suicides, some are murders and some, unfortunately are innocent children.

So I’m going back to the ‘greedy westerner’ example for insight: why do we think it’s right to throw away our lives when so many have had theirs taken from them? How is that just? How is that ethical?

It’s not; it’s downright selfish. Not only is it selfish, but its cowardly.

[Now, I think I should take a moment to explain that statement. I’m not a black and white thinker, but my spectrum of understanding on this matter leans more to one side than the other. I’m not a post-modernist, so I don’t think we should just sit back and let everyone do what they want no matter what. So I do have empathy, more than you could know, and more than I’m probably displaying right now. Because guess what, I’ve been there. I’ve been there, and I’ve been back. IT wasn’t until the prospect of death was made real, and was taken from me, that I began to realize how foolish and ignorant I was, wanting to die, to kill myself. Every day I fear that it will be my last. I live in agonizing, horrendous pain. My life is severely limited. Yet I still push on. I’ve learnt so much. And If I’m given another 10-20 years, I’ll be the happiest person on this planet.]

In the end, what I’m really what I’m advocating for is time; if you have time, Just weather the storm. Just wait it out. Things will get better.

There’s a trick I’ve learned that really helps in those moments when you just feel like you can’t take anymore: look back at the situation, step away from it, with another lens. ‘How much stronger am I for holding on and fighting, and pushing forward? How much more will I inspire others who are going through similar things?’ By fighting through, and doing so with a brave face, were making their life easier. We’re providing for them what many so desperately wanted (a quick fix when we’re at our lowest and feel like we can’t keep pushing on).

My conclusion is simple: life is ALWAYS worth living. Because so long as you are still living, you’re luckier than the 55 million who die every year. We have a duty first and foremost to ourselves. Things pass, and everything changes. You’ll learn to appreciate your illness, you’re pain – it’s the best instructor I could ever ask for; I’ve learned more about myself, and life, and living in the past six months than most do in a lifetime. That’s real power. You can find the power you feel you’ve lost by just embracing the pain, talking and sharing your problems, and having a little patience.

I’m not confused about the suffering in this world. Yes it sucks; it’s hard and lonely. But suffering alive is so much better than the ‘peace’ of death.

Life is complicated. The answers to these questions are complicated. The fact that I’ve just scratched the surface indicates how truly complicated this is. But complicated is good. Complicated means there are a plethora of choices to choose from. Complicated means that there isn’t one, but a multitude of answers buried somewhere out there waiting to be unearthed.

And at the end of the day, if you can’t live your life for yourself; you can’t find some reason to keep living for yourself: live for others. Modify Pascal’s wager here. It will be worth it, I promise.

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; http://www.theilcfoundation.org/).

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 Principles I’ve Learned: ‘the secrets to life are hidden behind the word cliche’.

  1. Madonna of HumilityBe patient: good things rarely happen quickly. It takes a long time to earn a degree, to pay off debt or save money. When you’re sick, there may be large gaps between sickness and health; therapies may only exist in the distant future, PT may take months to show results. Most may only get better with rest and time. I find that it’s often difficult for those of us with chronic medical conditions to extrapolate from general principles like ‘be patient’ and apply them to particular circumstances or conditions in our life – especially regarding our physical health. I think the biggest regret many have is that they weren’t patient enough. They probably gave up on many things, when exercising a little patience would have been much more beneficial. Or they weren’t able to enjoy the time they did have because they were worried and stressed about how they could efficiently and effectively return to normal.
  2. Be humble: Humility is endearing, arrogance is not (at least not for most). I use to be the cockiest, most narcissistic guy ever; most of the time, I literally had NO idea I was like that – people would come up to me in grade-school and tell me so-and-so hated me. When I asked why, they responded: well, you’re cocky. I had no idea. It really bothered me because I was just so damn insecure; I was super self-conscious and thought everyone hated me. And that really confused me. Inside, knew that I was really insecure, but my actions told otherwise. I’ve learned that there is a difference between humility and insecurity; although someone may be experiencing a tumultuous bout of insecurity-riddled-depression, they still may hold bigoted views and be unwilling to change. Being insecure and self-conscious is not enough – it’s certainly doesn’t get you off the hook!
  3. Think clearly, and often: This compliments what I was saying above about ‘humility’. I had no idea that I was arrogant. I thought arrogance came in the form of a good-looking jock who bullied ‘nerds’ and those different from him. Arrogance is much more insidious than that – this took me a long time to learn. And you know what, it doesn’t matter how long it takes you to come to an understanding, just that you do; the goal is more important than the result. Always act as though the possibility that someone else is wrong is less than the possibility that you’re misunderstanding them.
  4. Be willing to be vulnerable: Apologize properly, and often! It doesn’t matter if the person that offended you was more wrong than you were, and said more wrong things than you did. What matters is how you respond afterwards. It’s definitely a fine-line. If you’re too lenient, and you don’t respond when someone is yelling at you, people will walk all over you. On the other hand, if you respond in keeping with their tone and force, than you threaten to create rifts even the most skilled therapist couldn’t mend. Keep calm. Don’t bring up things from the past, just work with what’s being said to you in the present. Don’t respond with ad hominem attacks. Be civil and forthright. After wards, make sure you apologize. A) you’ll ‘be the better man’, and B) you will mend the problem before it gets a chance to grow. We all know this is true: if we’re mad about a fight, we’ll think about it daily for weeks. The negativity will stew in us; we’ll walk around thinking how much we hate so-and-so. If you apologize, even if you’re not wrong,  you’ll prevent that from happening.And I know how difficult it can be to apologize after a fight. This is especially true if you’re the type of person who never apologizes, but has begun to. This is where you need to be patient. Just be consistent and things will get easier. And if the reasons listed above don’t motivate you towards vulnerability, than think about how people will remember you when you’re gone. Do you want to be forgotten? Do you want those around you to secretly be relieved with your passing because you were such a difficult person to get along with? Or do you want those around you to mourn your loss? Do you want to be remembered as the guy who kept his cool and always apologized?
  5. Be good: ‘Good’ is a highly ambiguous term, and one that’s notoriously difficult to define. And although philosophers will argue about both its existence and its meaning for millenia to come, we can abstract from general social conventions a list of rules that will ensure we act in an honorable way, most of the time – and at minimum, that we have the desire to do so. On the vanguard of good behaviors are respect, humility,  and open-mindedness. The reason I believe they are the main three we should strive towards is that each plays off one another. In order to be open-minded, you must have respect. Conversely, if you aren’t necessarily a very respectful person, open-mindedness produces respect (even if you don’t realize it at first). If you accept someone’s position, you are demonstrating respect – even if you don’t feel like you’re harboring internal, latent respect. Operate by the principle of charity. As well, being open-minded demonstrates humility. So, even if you have not two, but one, two will follow. If its difficult for you to be downright humble, in a cliché, quintessential manner, than simply respect people; don’t argue with everything they say, calling them stupid – even if it so happens they are wrong, and they aren’t the most intelligent – and if you do, apologize often! All life deserves respect (that’s all life, remember, not just human life).
  6. Act as though there is a high possibility you are wrong about most things: if you act as though you’re possibly wrong about most things, you will be good. And as an added bonus, you’ll probably be right about much more. This ties nicely into number three. Don’t sell yourself short; try to find the faults in your reasoning.
  7. Live life as though you will die the next day… think clearly and often on this: Most people have probably heard that country song ‘live like you were dying’… you know, the one about the sky-diving and the kung-fu fighting. Well, guess what? It’s true! As a man who is reminded of his mortality not only daily, but hourly, and as a man who just six months ago thought it was certain he would attend medical school and live forever – certain beyond a doubt – take it from me that you’re wrong; you’re not finding indifferent comfort in the illusion of  ‘young’ immortality, but rather you’re placating your soul (metaphorically or materially (immateriality), whichever you believe – remember number 5 here). Most will find that living in this manner, although frightening and difficult, will make achieving these 7 things (so far) easy – they will come naturally for most. I think most people want to be remembered. This is probably why schools are named after people, or hospitals, why the rich become philanthropic and the successful are, well, successful. People who dream of fame and fortune for hedonistic purposes alone rarely succeed. For instance, I want to be remembered as good. I want people to cry at my funeral and miss me when I’m gone. As it stands, the way I have behaved for the past 20 years, I doubt that will happen in any potent manner.  But those who dream of how they will be remembered do – although, there are exceptions. I often hear people say ‘well in order for good to exist, bad must also exist’. And although that’s probably true, we must apply it for it to take on any real meaning; we can do so here. In order to become good, you must not be bad. I don’t really mean ‘bad’ in some weird foggy moral sense, but rather bad as in ‘hard’. Most connote easy with good and bad with hard. So in order for goodness to prevail, we must overcome the bad – not ‘really’ over-come, as that metaphor implies some sort of distancing flight, but more potently, we must wade through the bad to get to the good – and remember, the good is often found within the bad… confusing, I know – here’s where number 3 comes in
  8. Don’t hate:  this means don’t hate those for whom it comes easily, as well as those for whom it does not – those you know, and those whom you do not… who you have just met, for example. Remember, be humble, respectful, and open-minded. I used to be a hardcore atheist. I thought, ‘man, religion is stupid, and those who believe it are far more stupid’. But double standard of the year, I hated it when the religious or otherwise called my beliefs out and found me daft. I think most of us want others to be good; that’s probably why we hate religion, because it breeds distance and bigotry… but we’re wrong to think that. Look at all the secularists who share those exact same qualities. In fact, since religion is on the decline, I’m willing to bet that more atheists or agnostics fulfill the qualities religion supposedly produces than actual religious persons do; as a conservative vote, I’d wager equal parts per-capita. Well, what does that say about our feelings, then? I would say the forces producing bigotry, distance between equity and liberty, etc… far more and far more complicated than we would think. We can play ‘pascal’s wager’ all day, and come up with good arguments for both sides. At the end of the day though, what have you accomplished? Have you managed to demonstrate goodness, humility and respect? Have you created these things? Or have you wasted your time and the time of others arguing? Again, a good argument can be made for both sides of the coin, but at the end of the day the winners are those who show love… I would say almost everyone loves those who love… even if those who love believe differently than we do.
  9. Be open-minded: its important enough for me to say it again, and again, and again. Prejudice is complicated and messy. No one likes to feel stigmatized but often we find ourselves at the hands of our own prejudices towards others… which leads me to my next point.
  10. Check your double-standards often: We all have double standards. And, well, that’s pretty normal I think. It comes to fault when we let them rule us, rather than try to master them. If you find it very difficult and never end up changing them, people will respect you for trying to change them, for putting in the effort. And you will lead a more satisfying and good life doing so.
  11. Love: Just do it… it doesn’t matter how – so long as you follow the other points — just that you do. Now, everything in proportion. But just try it out. Tell people you love them, open doors for strangers and give money to the poor.
  12. ‘That which you do to the least of these my brothers, you do unto me’: Help the poor and wretched.
  13. Respect death: No one wants to die. Death is the most horrible consequence of life (good with the bad). Respect it, those who have endured it, and those who have survived it. Respect the elderly, for they have managed to stay death for quite some time. Share in their wisdom. Our culture seems to have migrated towards an indifferent view towards our elderly; we abuse and neglect them. We once lived in a time, as humans, when the prospect of death was ever-present in our lives. I’m not advocating a return to such harsh conditions, but rather, a respect for the ultimate sacrifice.
  14. Treat others as you would have them treat you: This includes the very important practice: honesty; even white lies can have dire consequences. And when they seem insignificant is when they have the most power over you. Eventually white lies will build up until all that surrounds you is involved in a lie of some sort – exaggerations etc…
  15. Family matters most: I would say the biggest and most potent criticism to this idea is the notion that there are those who live without the support of family; those who were abandoned, either emotionally or physically. Those who have lost love ones to death. And as such there is an aspect of inequality. But imagine ultimately if everyone’s family operated by these standards; if everyone loved their family unequivocally, through thick and thin. No one would be left-behind. But as our world is a broken one, this is not the case. As such , we can adapt. Blood runs thick, but thicker runs love. Love those who have no one who loves them, take them in as family. And love your family; they are more important than your personal dreams, desires and other relationships. More important so, that if you show them love first and fore-most, they will return love, and you will find those things you wanted either less important, or there for the taking!
  16. Respect the dead and dying: One of my favorite games has always been Assassins Creed. I think the whole series is amazing- I know there are others who would disagree. I don’t only like the game because of the tremendous game-play, or the good, nostalgic memories playing brings back, but I love it because they glorify a true hero, a true protagonist – one we should all model our life after. Whenever an assassin kills, he awards the target with their last rites once they’ve passed away. Respect for the dead isn’t something that should be lost, nor is it some boring traditionalistic ritual – as the healthy and young often understand it to be. I’ll be honest, it wasn’t until I played it today for the first time since December of last year that it hit me how good this aspect was. A good man shows the same humility and respect to his greatest and least enemies as he would to his greatest and least friend – to degrees. Respecting the dead has little to do with the man who died than it does with the sanctity and value of life; death is the most negative of things and should be avoided at all costs. It is the highest price and consequence and the dead deserve our respect. If you can’t understand this now, I don’t blame you. But try. Because one day odds are you will die too; at which time the golden rule will never apply more prudently, and unless you’re some sociopathic monster, you will regret these mistakes you’ve made. The living should never die, and if a time comes when the power to resurrect becomes available, all souls should live again – or so is my hope.

This is an incomplete list, a list which I will update when I remember and learn more – as so often the two in combination produce one. Try it out for yourself. Make a list; doing so does not ascribe you to some complicated or simple form of rule consequentialism… we just forget and learn; often simultaneously. Write down your sage advice so that you will never forget, but constantly learn. Live life to the fullest. The simplest way to do so is to live life for others (game theory).

And remember, these things will be hard. But I think the ‘hardness’ of something, or the difficulty, is a good indicator that its worthwhile; as a general principle, not necessarily one that holds up in every particular situation. It’s hard to not judge, and to love those whom it would be much easier, and is our inclination to, hate. Work through the hardness. That’s something I have had to recently re-learn… and re-learn… and re-learn. Make mistakes, they’re good.

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.