Band of Brothers

Last year when my mom kicked me out I frantically convinced my older brother to move in with me. In October of 2013 we leased an apartment near Ancaster, Ontario. For the first few months, things were great. We got along, I finally had someone to talk to. I was, before moving in with him, very excited at the whole idea of it. For so long I had been miserable and alone and I thought perhaps this was an opportunity to make some headway in that respect. Well, as so often happens, my hopes were misplaced.

This past week my brother informed me that he is taking a job at Lafarge, and will be moving to Windsor in two weeks. At first I didn’t know how to feel about it. I was indifferent and hurt all at once. I didn’t realize then how much it would affect me, and exactly how it would affect me. I’m so used to being abandoned and alone that I sometimes forget how normal certain reactions are to, well, loss and abandonment. I feel betrayed, lost, alone. I feel hopeless and I really feel like killing myself.

The title of this post is brothers, not just brother, so I think it might be appropriate now to talk about two of my other brothers. The brother directly below me (lets call him Will) is little better than my older brother (the one I had been living with). But, much in the same way that I placed inordinate amounts of hope in Gord, I also place inordinate amounts of foolish hope on my brother Will. The thing is, I’m starting to really realize that they’re never going to change. I thought for so long that if I just made myself a little more attractive, a little more inspiring and a little more optimistic then perhaps they’d change the way they treat me. But no amount of positivity in my personality will change their personalities; I know that now.

The incredibly frustrating thing about Will is the disconnect between how he likes to present himself to the world (and ultimately how he views himself) with how he actually is, and how he treats those whom he has a personal relationship with. The only time he talks with me is when I initiate a conversation; when I go out of my way, and make myself vulnerable – knowing full well that I’m just going to be rejected. I want to again address the suspicion that likely follows this admission that no one in my family wants me. I get how easy it must be to conclude that the problem does not lie with them, but it in fact lies with me. That would be true, if I was the one doing the rejecting. If they had consistently tried to reach out to me, tried to help me (hang out with me, ask me how I’m doing, generally empathize with me) and I dismissed their efforts then I would absolutely agree that the problem lies with me. But that’s just not the case. Like I said above, I’m constantly trying to think of ways to make myself appear more attractive to them; like a safe bet, almost. I have tried every approach to get their attention and their love.

You see, these brothers of mine, they lack so many of the basic and necessary qualities that a brother or a son or a family member should have. They have an incredibly difficult time personally reflecting on their experiences and incorporating their in-built conclusions (I don’t like this pain; I don’t like being alone; I don’t like being rejected; I don’t like feeling abandoned) into how they treat other people and generally view the world. They just all become the things they hate. They’re aloof, dismissive, unempathetic, immoral assholes. It’s a harsh thing to say about one’s own brothers, but things have gone past the line of pleasant exchange.

I never get a phone call, or a message, or a text. I’m never asked, by anyone, ever, how I’m doing, what I”m going through, or what it’s like being sick. No one tries to gather any information about me and my life. No one tries to get a handle on how I’m doing, or what I need. And absolutely no one tries to help me. No one goes out of their way for me. And only rarely agree to help if I beg and plead.

Will presents himself to the world as this great moral man. This stolid figure of virtue. His girlfriend fancies him a god among men, and his friends all think he’s this amazing young man. But how can that be true if he treats his own brothers this way? I’ve got to think it’s healthy and normal to have a deep dialogue with your family members. It is all so confusing and so terribly unfortunate.

When I see someone or something in pain, I instinctively try to help. I feel overwhelmingly bad (compassionate, empathetic) when I see someone or something in pain. I want to help. I want to help because I want them to be okay. I want to help because it makes me feel very good to help; it fulfills some basic need to do good in me. I want to help because I want them to succeed and I want them to perhaps reciprocate (not solely to me, but to other people; friends, strangers, future children). And ultimately, I want to help because it’s right. I do not have this apprehension that they have, or this cold indifference.

Then there’s my youngest brother, James. James is only 13. I am fairly certain that he inherited the faulty EDS causing gene that I share. He has depression. He has a hard life. When I look at him, all of those hardships and all of that pain, and all of the problems and the solutions are immediately available to me. I schedule skype calls every night. I help him develop study skills and social skills. I help guide and teach him how to think for himself; I try to cultivate confidence and independence in him (with little things like getting him to go off and collect certain items when we’re at the grocery store, or taking the bus and having him pay for himself; little stuff that seems trivial to everyone but someone who has lacked any form of instruction or guidance). When my brothers look at him, they see none of those things; and they do nothing. I can’t even remember how many times I’ve begged my brothers to step up to the plate and help him; Will in particular. I have asked him so many times. Each time he trivilizes it with ‘oh of course; absolutely. Yeah man, no worries’. But never does anything. And I don’t know why. I’m sure in his mind he doesn’t feel like it’s his responsiblity, or that he just doesn’t see that there is any resonsibility. I odn’t know. All I konw is that if he were in the same spot (which he was once upon a time), he would feel just as horribly, and his needs would be abundantly clear to him. He’s been through very similar things that James is going through. He’s felt the same things, he’s been frustrated at the things he lacks and he’s felt the sting of injustice that comes when you’re not getting things you need and deserve (things every human being needs and deseves).

Perhaps they’ve abandoned and neglected me because they think people like me are our own worst enemies. Or maybe they think we’re not worth it (although, I give them more credit than this). Of the many, many things they do not understand, it’s why morality is practically important. I’ve written about this idea many times. But basically the idea is that moral action is not just ideal, it’s always practically beneficial. It might not appear to be so immediately, but upon further reflection it’s always going to have a practical value. There are those who view morality as relative, and who think moral actions are only true if they’re sacrificial. The problem is that no moral action is truly sacrificial. There’s always an aspect of enlightened self interest. There are some who shy away from that. But they shouldn’t. It’s good that morality makes you feel good; that a moral action benefits everyone. If you’re a person who abandons a brother suffering so acutely, and doom him to loneliness and isolation, ignoring both his cries for help, and his subtle, constantly evolving attempts to foster a proper relationship, then you can’t ever fulfill you’re moral responsibility. Some people shy away from the idea of moral responsibility; and I can see why. Unless you really understand moral philosophy, ethics and metaethics all you have to go on are roughly drawn sketches of what certain terms refer to. When it comes to moral responsibility the thing most immediately think of is religious sanctity; something cold, something distant, and something terribly uninviting. People want freedom; to do what they want and when they want, within a loose structure. It’s not until a person is personally affected by their own actions that they begin to question themselves. But again, that’s also no guarantee that they’ll change (take my brothers). I’m getting a little tangential (I could talk about this stuff all day). What I’m trying to drive at is this idea that those who suffer the most are the most valuable. We can’t expect to have all of the experiences necessary to defend against the suffering life will surely throw at us. We can’t expect to have the moral maturity to treat others as the deserve to be treated, and help those who desperately need help. Thus, we can’t expect to just somehow, by osmosis, fulfill our moral responsibility. We need information to do that. So where do the disadvantaged souls like myself come into play? Well, we have a value in our ability to inform morally, to provide moral context and personal experience with injustice and suffering. We are wells of information and insight. We deserve to be treated well because proportionately it’s ethically required. We suffer more than most, and so proportionately we deserve more than what you might give to some rich suburban mother. But it’s not just about what we ‘deserve’; because you can quickly get lost in that entitlement and lose sight of the real goal. It’s what we need. We need help. So, let’s break that down quickly. Why is that important? (important enough to persuade people to give more to those whom are difficult and sad and who make us feel things we’d rather not feel). Well, we need help because it’s moral. We also need help because if we’re left alone we won’t be able to fully actualize our capacities. We are wells of insight and information. We are tremendously valuable in that respect. However, our value is often lost and unseen from our suffering. We also need and deserve love and attention and empathy and to see moral action because you all need those same things. Like my example above about my brother who can’t be moral if he treats me and others the way that he does, we can’t actualize our moral capacities if we just let those suffering the most fade and rot. Why is that important? To reach our moral potential. Well, it’s important for the exact same reasons why it’s important to not leave the disadvantaged. Because if we don’t reach our moral potential, we won’t be able to fully fulfill our moral responsibility, and as a consequence others will be stunted in their moral development (not to mention they will suffer and feel pain and existential decay). sacrifice always has a component of enlightened selfishness. And this is no exception. You can’t help yourself unless you help others (that’s trite). What I mean is more complicated. Morality has practical benefits. Morality safeguards against the harsh realities of life. Morality also helps to shade us from others who are in varying stages of their moral development. It’s very discouraging to suffer by someone else when you’re trying to be good. They’re in a different stage of development than you, and there are a lot of people. The effect these discrepancies have are readily available to us; it’s why I’m left behind, and why people like me are. It’s why Will and Gord are the way they are. Morality fuels the most human part of our pshyches when all else fails. When we’re alone and suffering and broken, moral actions and thoughts are the only thing which can quell the pain. If you know that you’ve helped a tremendous amount of people, and if you know that the world is a good place, filled with god people who are moral and kind and who help everyone. If you know that safety isn’t just a product of luck, and is actively enforced by everyone. Then any pain or suffering will be made tremendously tolerable. I have personal experience in this method of integrating moral thought. The only thing that has kept me going is the promise of these truths.

Suffering is hard, but suffering needlessly is infinitely harder. Needless suffering is suffering that either has no purpose or meaning, or suffering that occurs in a world (or life) without purpose or meaning. That purpose and meaning cannot be a vocation, or an income, or even personal, romantic love. Because those things are products of chance. NO one wants to admit that the products of their work (their success) is largely determined by luck (being born a certain gender, in a certain time, in a certain country, with health, wits, love, and without tremendous hardship; and all relative gradations). But it’s true. That means that vocation and income and personal romantic love are unstable and easily ablated. Even if you suffer long and die well before you see those things disappear, the fear that they might will still always remain the center of your focus. But ethics and justice and ‘morality’ if proper don’t fade.

Another reason why people like myself deserve better is a reflection of the human experience. No one likes to suffer. People suffer when they get a bad grade, and worry when they buy something too expensive. And they don’t like these feelings; they actively try to treat them. But yet they turn a blind eye to the loss of life, the loss of mobility, of health, of love, of basic rights – if not actively contribute to it.

We are all going to die. Because we spend our lives trying to deny this one important truth, we give so much value to concepts like ‘strength’. A strong person is a wealthy, confident person. This diametric opposition then forces those suffering much lower; and creates the absolute worst type of suffering: the pointless meaningless world without any hope of justice. So that they can’t even feel peace knowing that others won’t have to experience the same thing that they did. They not only die in tremendous pain, suffering, never living a good life (a decent one all humans basically deserve), but they die knowing that there is no justice, and that this will continue to happen to other people. Strength isn’t going through things and simply ‘surviving’. Maybe that’s strength in the context of a battle, but not life. Because in a battle the goal is to win; that’s the diametric opposition: win/lose. So strength is permissibly appropriate. But in life we know we’re going to die. So how could that term offer us anything ultimately valuable? It can’t.

In life, strength is suffering, and going through horrible things, and yet remaining a good person. If you’re immoral, and selfish, and mean, and cruel, you won’t ‘survive’. Socially, if you’re that way around others, you won’t ‘survive’. You’ll just suffer more for it. History has taught us this time and time again (which is a tragic irony, seeing history repeat itself… ad infinitum). A cruel selfish, mean, immoral and unjust leader may experience bliss temporarily, but his or her philosophy is incredibly myopic. Morality helps you personally; it makes you feel good to do good. It fosters growth and is absolutely necessary for moral development (which in turn makes you feel good, and preserves those good feelings, as well as makes you strong in the social context. And defends against those horrible fates where you’re forced to suffer tremendous loss, by allowing you the peace knowing the world is just; suffering in a meaningful way, in a meaningful, important world (and life). Take the governor from the walking dead. I’m sure there were many years where he appeared very strong. But ultimately he failed. His group fomented insurrection, his enemies saw his corrupt nature and banded together against him. If you’re moral and kind and just and inspire safety and virtue and goodness in others, you will be stronger because people will gravitate towards you. They will feel good, they will feel safe, their fear of pain and death will be dramatically less, you’ll ensure that your goals are maintained long after you’re gone.

I could continue fleshing this out and analyzing these ideas for days, but I’m afraid no one would end u reading that; plus it’s quite early in the morning and I have not yet slept.

Morality benefits everyone. Leaving people such as myself to suffer alone, is a horrible injustice, immoral action and sin (I’m not religious). Everyone looses out on the moral insight collected through years of suffering, everyone loses a part of themselves. Development is broad and emotions and empathy and compassion are as important as sureheadedness and prudence. If you let someone suffer, not only are you contributing and creating a scenario where that suffering and injustice is maintained, making others vulnerable, but you make yourself vulnerable too; you could find yourself one day ‘unlucky’ and in the mess you helped to maintain and create. If you let the truly disadvantaged suffer you deny yourself the most truly powerful meaning of life. Not to mention making the world a messy place for your children and grand children – not to mention the rest of humanity.

I don’t understand why my brothers don’t get this. I don’t understand why I’m the only one. But mostly, I don’t understand why they won’t even listen. Everyone is at a different stage in their moral development, but the only way to bridge that gap is to open yourself to opinions other than your own; to communication with everyone and anyone. Morality connects people; it brings everyone together. It creates a safe world for everyone; a happy one.

I think people take a laissez fair attitude to suffering because they think the problem is too big for anyone to handle. They think it’s unjust that they should have to carry that suffering, pointlessly. I hope the irony there is not lost on you all. The thing is though, the truth is the exact opposite. If everyone did a little, the weight would be displaced to such a degree that only the benefits would be consciously experienced. Within a very short time it would become self-sustaining.

I don’t know how much longer I can keep going like this alone. I’m currently just a day or two away from certain suicide. This is why we matter.

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Oh What To Do When Nobody Wants You

I’ve been asking myself the above question quite a lot lately, but I’m not closer now to an answer than I was a year ago.

Is it really possible that you can live a good life without any help?

The question at first appears to be one of sustainability; can you sustain your life without any help or any love. When I first started watching the threads tethering me to normalcy stretch and fray that idea of sustaining my life was the hope I escaped to. Fear is intoxicating. And like all intoxicating things, it dampens our rational faculties. I was so afraid of ‘going crazy’ and ‘being alone’ that I couldn’t see beyond my immediate problems. I was looking for an answer in all the wrong places.

Over time there were fewer and fewer places to hide, and the exposure to the elements really wore me down. Soon that well of hope that I had escaped to for so long ran dry. And so I was forced to look elsewhere for answers.

So I took the problem in another direction: can you sustain yourself alone without help long enough to transform your life into a ‘good life’. O.k. great. Simple enough, right? Well, it may have been simple had it not been for my chronic illness. My health is very unpredictable. If I was healthy I would have tackled the problem by immersing myself in school work. I’d consume a steady diet of cheap inspiration and glib memoirs. And I would have probably been all-right.

When you try to solve a problem this big it’s important to take into mind all the things that need fixing; if you’re going to do it, why not do it right? So I took an inventory of all the things that are preventing me from having a good life, and all the things that could prevent me from having a good life. This was the single hardest thing I’ve ever had to force myself to do.

I have a chronic genetic disease which causes chronic pain, joint fragility and instability, poor healing, spinal problems and sleep problems. I also have no emotional support. When I started taking the time to inspect my life a little more closely I began to notice how little I had in the way of love and help. When I vowed to not end up alone and depressed and broken I had no idea what I was asking of myself. If I knew then what I know now I’m not sure I’d have made the same decision. I probably would have ridden things out, and let fate choose for me; like so many people do.

But the future had other plans for me, I guess. I was lucky enough never to have enough stability to coast; I had an abusive mom and a rare genetic disease. But I was also popular and funny and had a decent serving of wits and resourcefulness. Every time I thought I had a handle on things, some radical shift in the dynamic of life would occur and I’d spin out of control. I have had to change my approach to this quest for a good life more times than I care to count. But fortunately, each time I still had enough reserves to get me by whatever obstacle and through the unexpected turns life threw at me. But like confronting my fear of a hard destiny, I knew eventually I’d have to confront the empty stores.

Can you live without anyone’s investment? Even your own?

Throughout all of this the questions have been more valuable to me than the answers – which are themselves sparse and uncoordinated. If there’s any one thing I value about myself It has to be my ability to ask questions. It was a vague feeling, a sense of urgency coupled with a roughly sketched picture of an adequate life that started me on this journey four years ago. I wasn’t motivated by a clear epiphany or a well thought out question. Four years ago I was certain it was turtles all the way down, but now I have no idea what question lies beneath the next answer; what problem lurks below the newly solved problem.

Most of my fears have come true; I’m disabled, I’m very ill, I’m dependent without anyone to depend on, I don’t have any friends, and I don’t have any reliable family members. I can’t say that all of my fears have come true, because our fears aren’t born alongside us; we find them and we create them. What I can say for certain is that I now live a life that requires me to constantly face my fears.

Like digging for turtles, I think that the big fear that underlies many of our common, and even uncommon, fears is the idea that we’re going to be left behind. Not just by our friends and family, but by life itself. We fear death, but we fear a pointless, prolonged death even more. We fear loss. Not just the loss of friends, family, good grades or social status, but the loss of our selves. I fear the things I’m afraid of but I fear more the idea that they exist independently of myself. Pointless suffering is a heavy burden to bear, but when all else fails a person can still find peace in the truth that other people don’t have to go through the same thing. The weight of that peace is felt as justice; perhaps a pointless life isn’t a law of the universe, but a product of the chaos humans bring to life. It’s a part of the great trick our minds play on us when we think perhaps we could have been born as someone else.

That’s where my problem lies right now: somewhere between the last turtle and the worst suffering. I feel the whole weight of the world on my shoulders, but the promise of hope just one more layer down keeps me searching. But it’s always one more layer down, isn’t it?

I don’t know if I can keep going. And even worse, I don’t know if anyone could keep going. If it’s a law of the universe that some people’s lives are going to inevitably trend towards pointlessness then I need to find some way to counteract the forces of nature and the chaos people bring to life. Maybe my life to myself is forfeit. But my life is so much more than my experience. It’s an idea. Consciousness exists between immortality and mortality; in the land of the ideas. That’s where we really suffer. It hurts to stub a toe, but it would hurt more knowing you have to go on stubbing your toe forever than it would to actually stub your toe forever. Maybe the two need each-other; who knows.

Every ‘pointless’ human life matters to every other human. It doesn’t seem that way when you’re standing on their shoulders, but when you suffer you fall down into their ranks. And when that happens you realize that the real problems we need to fix are the ones you need to go looking for. It’s a law of the universe that there are going to be people whose parents hate them, who are disabled, and who have nothing but time to suffer and decay in existential terror. No one thinks they’re going to be that person – partly because of our penchant for denial and partly because that life is so uncommon most people rarely consider it a possibility; a fear to stumble upon. But every life is left wide open to suffering. When you suffer, the gap between what you think it means to be one person, versus what it means to be a person shrinks. And it keeps on shrinking until those two ideas meld. Then you know what real fear is, and why it’s so important not to thoughtlessly throw people away.

We need to help people who suffer, but we need to address suffering more. We need to make sure that people just don’t slip between the cracks as I have, to rot and decay alone. Partly because it’s the moral thing to do, but also because It could have been anyone. Most people are safe from the stuff I have to go through because fate dealt them a decent hand. But their strength is an illusion. Maybe I’m just trying to make meaning out of meaninglessness, but maybe you’re all just asking the wrong kinds of questions.

 

Oh This Sorrowful Life

What is fear? It is an emotion. What is the basic function of an emotion? To solve problems. When do we feel fear? When we are faced with a problem. What kind of problem? The most important kind of problem: the ones involving our own safety and existence. Are there other emotional correlates to fear experienced in the face of a problem? Yes. There is frustration, there is anxiety, there is doubt. So fear is just an extremely potent signal built into our biology (our stimulus-response system) to let us know there’s an important problem that needs to be solved? Yes, and no. It’s also a way to solve the problem. There is the fight or flight response; fear helps us solve the problem by raising our heart rate, getting our blood pumping, getting our o2 concentration up, preparing us for a fight or a flight. It also chooses one or the other; before we’re ever conscious of the fact that we cant win a fight, fear pumps up and our bodies make the choice our feet are too ambivalent too.

The problems associated with fear arise from our complexity. We are capable of so much more than a  fight-or-flight existence; our lives have meaning, we are conscious. We have transcended our biological ancestry. Fear no longer serves a continual function in our lives, and instead actually inhibits our capacity for happiness and personal growth.

Fear is, after all, a problem solving strategy. But we have a much better problem solving system; we have our rational, conscious minds. We are capable of meta cognition, and we live in a century where our basic needs are constantly met. So, do we still have to rely on fear to solve problems? No, and yes.

I don’t know what the future holds, but fear will be a part of the lives of everyone living today. However, fear often keeps us from living the best version of our lives. Take, for instance, our shared fear of death, and pain, and suffering. As a chronically ill person, I can tell you first hand how little the drive for self-preservation helps us on our journeys for personal growth and self discovery. It allows fear the authority to govern our actions and in turn our biology makes the decisions for us. We don’t do things with a great risk, generally, out of fear. We don’t really push ourselves to do things we don’t like to do, out of fear. It’s no coincidence that the most hedonistic and enjoyable things are those with the least amount of risk. We don’t want to ‘waste our time’ doing things we don’t enjoy. Which means we don’t regularly do the things we need to do – studying or reading instead of watching television or playing video games, or making home cooked meals instead of going out for dinner.

There aren’t many things that make accepting death easier. It will always be hard, but we do have a say in how it affects us, and the way we live. You have to live every day as you plan to live your future; we all have plans for change, but they are often conditionally dependent on certain things. One of those things that makes death less intimidating is knowing that you’ve inspired others to be less afraid. Altruism is practically useful, and in respect to death, it is one of the most useful things we have at our disposal. Living your life for others makes it much easier to live your life, and to become the person you want to be. Living a selfish life is mutually exclusive to living a fulfilled life – one of personal growth and self-discovery. Because that life depends on luck – being lucky enough to maintain selfishness requires health, looks, people skills, strength, gender and even race (as well as all the general luck – like not being shot, or hit by a car, or contracting a fatal disease). In that respect, its obvious that selfishness is untenable. And even if you disagree still, what is the selfish person to do at the point of death? How do they cull fear and meet death? You could apply the argument mentioned above, and posit that selfishness is akin to hedonism, and hedonism limits the spectrum of enjoyable-things to low-risk-things. And in that way, it is still fear-driven. Being altruistic, on the other hand, knocks death down a few notches. Living your life for others gives you meaning, and allows you to transcend fear; sacrificing yourself for others is the ideal selfishness; it gives a person meaning, removes the hold of fear, it employs reason to solve problems, rather than fear, it ensures you will be remembered, and allows you to do things you wouldn’t otherwise do if you lived a selfish life.

Fear is helpful, but it’s not causally tied to the problems in our lives. It’s a way of solving those problems, and a way of experiencing, but it’s not the only thing we have to feel, or have to evaluate the factors of a problem with. It’s one of many tools at our disposal. And ultimately, it’s just a tool. You may not be able to remove fear entirely from your life, but I’m not sure you’d want to. You can, however, remove the fear of fear. There is, after all, great peace and value in a good death. A death where you meet your end. Not a death with a lost version of yourself; a delusional, shadow. Not a death by torture. A death with your loved ones, and the knowledge that you did well. Or the death to protect another. And even if you’re alone, a good death still has value. Maybe not to your personal sense of self security, or your own needs, but it proves that the idea of a person has more value than any individual. You can meet the fear with courage and bravery because another’s peace perhaps depends on it – the truth that no matter what you can still find peace. Even if it doesn’t seem so, doing good is always glorious.

The Big Why.

Why am I so unlucky? I can comprehend, readily, all of the many glorious ways in which I have been incredibly fortunate, but the suffering still stands no matter how happy I am for the things that I now know matter very little.Snapshot_20140303_16

Why do I not deserve love? Why does no one love me? Why did, and do, my parents have to be so horrible and perpetually indecent? Why has my family abandoned me? Why did I have to be born with a genetic disease, progressing towards varying degrees of disability and toxic, intractable pain (physical, mental and existential)? And why did my family have to abandon me the most when I need them the most?

All I want in life is to love. All I want is to be good, with others. All I want is friendship, kinship, companionship. All I want is to be loyal, and to help others see things as I do, and have them help me see them as they do. I’ve lived an extraordinarily odd life, and I now know that the only thing powerful enough to treat raw fundamental existential suffering is the love of a friend.

I’m not even demanding that these friends I want spend all their time with me. I’m not upset that my parents don’t cater to my needs, call me all day, and spend all their energy on me. What I lament is that it is not even a thought. Because I would do that for them in a heartbeat, if they would have me. That’s the only thing that can really matter. Work, laurels, pride, fame are all transitory.

Jesus fucking Christ why am I destined to be alone forever? I can’t keep going. I’m becoming more and more ill and more and more sick. I’m changing too rapidly; isolation changes you quickly, without the mediation of social contact. I miss people.

I miss love. I miss women. I miss friendship. I miss hugs. I miss laughter. I miss connection. And I’m very afraid and very alone. And it’s all so avoidable and pointless. God I miss people so much. No matter what I try, and how hard I try, I can’t find anyone to love me; or even give me a chance. People abandon me. And I know the first assumption is that perhaps the problem lies with me. I’d love that to be true; I want it to be true. Tell me it’s true. Then I can change. But it’s not.

I want to spend all day watching bad movies with someone. I want to have Lord of the Rings marathons. I want to have Game of Thrones and Star Wars marathons. I want to read comics and take my dog for walks where we’ll laugh or perhaps wax philosophical. I want to talk until the morning and sleep comfortably knowing that I have a purpose in the connections I have with others. I want to play board games and maybe even get drunk. I want to go to the movies. Fuck, I just want to go out. I’m a prisoner in my apartment. I’m too ill to travel on my own and thus contractually tied to my living room. I want to have a friend, who has a house, that I can visit. I haven’t been to a ‘friends’ house in at least two fucking years. How sad is that. It’s been two years since I’ve had a friend. It’s been two years since I was twenty-two years old, and had a friend. I’m almost twenty-four, I’m sick, and I have no friends. My life is meaningless, and although I want to die, I desperately, more than any comparison I could ever draw would show, more than any superlative or hyperbole, want to be happy. And that happiness doesn’t have a price tag, or a fate tag. It has a friend tag. I want friends. Is that so fucking much to ask?

I finally get what life’s all about and it’s like this big fucking joke. The thing everyone has is the thing that can give us meaning, and happiness – or at the very least, it is the basic starting point for all the other iterations of life, done right. And that thing I don’t have, and can’t manage to get or create. Or, I don’t know.

It’s like this horribly sadistic solipsism: that I’m the only mind and someone up there is playing some fucked up game.

Fear, ‘The Unknown’, and Disability: why I think militant atheism sucks.

I’ll admit I used to be a staunch supporter of Richard Dawkins’ particular style of militant atheism. Like many people, I read the God Delusion, and the Selfish Gene, and if I’m being totally transparent, I bought every bigoted, elite word offered. After chewing on the gristle of Dawkins doctrine,  I upgraded to Sam Harris, and found the same whitewashed arguments presented with less elegance.

I would watch hours of debates featuring Hitchens or Krauss, Dawkins or Harris. But eventually (thankfully) the spell wore off and I became aware of a new troubling set of questions .

I’m not religious. I am probably an atheist (I don’t like the term, but it best describes my worldview, in respect to the divine). But I don’t think it’s justified, or logical, or defensible to say that religion is useless and everyone who believes its many forms is denying their rational mind and ultimately hurting the species (“in certain situations it’s tolerable”, but even still the subtext reads “here lies an idiot”.)

It took losing everything for me to lose that arrogance. It took losing a family that was never there for me, losing my mobility, my health, my friends, my entire world. It took extreme suffering for me to see how absolutely childish and absurd these Atheists are. They have a philosophy by the elite for the elite. They’ve never known the kind of pain that strips you down and leaves you in existential terror. I’m not trying to subtly reduce theology to ‘fear-driven fantasy-creation’. In fact, those simple, incomplete arguments are precisely what I’m trying to say is wrong.

Being disabled has afforded me some fantastic opportunities to look behind all the smoke and mirrors. But those are insights that are not rightfully guaranteed to all who suffer disability. I’ve had a unique life, and thus some unique insights presented themselves to me. What we are all (the disabled) guaranteed to experience/ learn is humility. Being disabled is a humbling experience. Imagine everyday being told by society that you’re pitiful –  if not actually outright, then through social isolation, exclusion, and non-verbal gestures and cues (which show more pity and disdain than someone screaming ‘you’re worthless’ ever could). The corollary of this is that we feel no real authority to tell you that you should believe the ideology and doctrines that we believe.

As I see it, ( as broken as I am) telling someone they can’t believe in God because doing so makes them intellectually weak and shameful is probably one of the most common and morally reprehensible things these great Atheists -‘on the vanguard of humanism‘- do. And unfortunately, their  attitude has seeded and created a culture around shaming anyone who doesn’t only accept hard science (it’s like we’ve gone back in time three hundred or so years).

Religion doesn’t shun the disabled or the sick. Fundamentally, liberation theology affirms the lives of the disadvantaged. Religion gives people hope and safety and lets them feel self-worth. These people often live the hardest lives. And it frustrates me almost as much as it saddens me that these great Atheists not only get away with hurting (in their own words, far from mine) ‘the disadvantaged’, but they feel such fundamental moral authority from start to finish – no matter how many casualties.

These Atheists, who deny the authority of art and music and philosophy because ‘hard science’ knows all. I’m a science major, as well as a philosophy major. My great-uncle revolutionized film and founded Kodak. I get the practical value and the historical legacy of science, but these Atheist scientists have created a new religion. One that tells you how to think, shames you for being different, and says anything which isn’t science is a unique curiosity at best, and a useless waste of time at worst. It isn’t the class of belief that makes them religious, it is the approach: that substantiating their method means everything else is wrong ( even things which they know little about but deny because of personal bias (like the creationist denying evolution who thinks not being able to sexually reproduce with monkeys disproves evolution). Most importantly though, they brazenly trivialize the only thing powerful enough to imbue hope and meaning in the lives of people truly suffering (often the disabled – specifically the chronically ill).

As a chronically ill, disabled person, I do not feel like the culture of science is serving my needs. I am more grateful than I can express to medicine, medical advances, and the scientists who are working to cure my disease, and many others like it. But if this new movement towards a science centered society is for the betterment of society, you would think that it should first help those people who feel most left behind. Being really sick, and suffering to an extreme degree, for a long period of time, allows you to deconstruct what you thought were ‘the truths of life’. When you lose everything that usually brings you joy, and when you are separated from culture and society long enough to lose those conventions too, you quickly learn what matters most by what fundamentally helps you the most. Religion in itself doesn’t help me personally, but the freedom to be religious, without persecution (from other religious people who may have a different take, or from atheists) does; valuing human dignity more than thought tokens and belief systems. Relationships, love, and moral duty make me feel more safe and more happy than the joys of getting drunk, partying, eating junk food or even the rigors of scientific research ever, ever could. Those things don’t help me: getting drunk, partying, eating junk food, researching and experimentation, don’t make me feel better. Knowing that everyone is equal, by virtue of our shared existence, knowing that to be smart means to be humble does make me feel better.

I have a very Nietzschean view of suffering, so I personally don’t think that being in pain is inherently bad. What I do think is intolerable wrong, if not ‘the opposite of good’ as well, is telling people what to think and why. Lawrence Krauss never studied philosophy, and yet he claims to know that Philosophy doesn’t really help anyone and isn’t all that necessary. How can someone not know something, yet know that it’s not helpful or important? How can someone so inherently ignorant, as all humans (past and present) are, with omniscience tell us that although the seas ahead are unknown, this is the direction we obviously have travel. And how can he, a man who knows relatively little about the raw experience of substantial persistent suffering, know what’s best for me without consulting people like me?

The rhetorical overtones are obvious: he can’t. But this is the way these men operate. The claim often lauded by atheists is that theism is a belief system requiring faith in place of actual evidence. Of all the unknowns, knowing what a person thinks and knows is the atomic clock to unknown. The empirical evidence, the facts science produces, are only part of what informs  what a person thinks and knows. The sweeping evidence-objection generally appears to them as though it is consistently accurate – it produces predictive results. The inaccuracies, however, are created when that data is interpreted; which is often on the fly, with limited attention, and rarely in an emotionless atmosphere. Religion is more than fear-driven fantasy-creation; the fear-driven part is only a part of its origin. Without sparking a new divergent conversation about the history of theology, it’s enough to say that the value of religion, as I see it (as an atheist), is in the expression of the values we all should stand for – and which most do. Respecting someone’s beliefs not because you agree with the evidence or theory, but because you respect a persons rights and freedoms, and you recognize the complexity of their experience as an unknown variable.

Neo-Atheists like Dawkins and Krauss are as ignorant as we all are. Yet unlike most of us, they have this overwhelming sense of power, given to them by a culture which defies science and anyone who studies it. That subjective experience of power deludes them into thinking they’re wholly qualified for leadership, and they shape the public consciousness to match their ideologies all the way to the top.

Sorry if this rant was a little disconnected. I’ve just been really struggling with making sense of these feelings for a while. And I thought perhaps my disabled compatriots would get what I’m trying to say most.

Rare Disease Day: our question marks

The Lengthy Shadow of Rare Disease:

Our lives grow beneath the shadows of question marks. For many, those questions are little more than unobstructed shade; for others, they’re a foreboding storm. I am one of the others’.

As we get older, and we pass from one life-stage to the next, those questions change: am I a good student? Am I attractive? Will I be a good parent? A little over two years ago I was diagnosed with Ehlers-Danlos syndrome (EDS). A rare genetic disease, EDS can range from debilitating to mildly limiting. So when I was diagnosed, that was the big question: what form do I have.

At first my disease was only moderately limiting: I was still capable of the adventurous exploration characteristic of my age-group, just not the manual labor, the weight lifting or sports. So I took to school, enrolling in a bachelor of Sciences degree program heading towards medical school. For a while things seemed to be going fine: my symptoms appeared to have plateaued, the medication was working. My life was on track; identity secured.

Like almost all of my friends who share this disorder finding a doctor knowledgeable enough to diagnose me took a very long time. The rare disease identity is only publicly displayed after a diagnosis has been made. Although that diagnosis equipped me with the information required to answer entreating questions from friends, family members and often other health-care professionals, the characteristics of ‘someone with a rare disease’ have been fruiting through the cracks my entire life.

That brings me to the next big question mark: what is it like? As anyone with a complex medical condition will tell you, physical symptoms are only a part of the experience. After about a month into my first semester in the pre-med program the physical symptoms worsened. A forty hour work week can become a burden for even the most fit, and when you’re a 21-year-old male you always think you’re the ‘most fit’ – no matter what the doctors tell you, or how many new ways you manage to piece yourself back together. The grueling three-hour biology labs spent hunched over microscopes were a little too much for my neck; so I backpedaled. I switched from chemistry to psychology, and dropped out of physics so that I could limit myself to one lab per week. But things quickly got away from me.

What was mild neck pain turned into debilitating neck pain, and then shoulder pain, and back pain. And as I was sizing up the proverbial wall, another question mark appeared: am I worth all this trouble.

The pain has steadily worsened, and so have the complications. The two years since my diagnosis have marked a period of staggering change in my life. I went from the keen, hyperactive pre-med student to a person obsessed with self-worth in a disorienting short matter of time. I lost my friends, I lost my dream, and I lost the freedom to pursue my goals with any semblance of speed. My days are spent on my couch with my rescue-dog, Charlie, reading through articles and research papers on-line. Mourning the life I should be living while at the same time trying to cultivate the one I perhaps can.

Ehlers-Danlos syndrome is weird. There are some who aren’t forced by their symptoms to find a diagnosis until they’re in their thirties – and some even later. There are some who die of vascular complications when they’re in the second decade of their life, and there are some who are confirmed as infants. Aside from the rarer cases where a diagnosis is made in the first few years of life, most of us have a period of comfortable unknown; we don’t feel sick, and thus we aren’t ‘sick’.

When someone asks me what it’s like living with my disease I ask them what it’s like living with theirs. They blink, stare, raise an eyebrow and ask me if I’m feeling alright. So I ask them again. “But I don’t have any disease”. After a few more seconds of awkward tension I say: “when you have a rare disease, too few people know what you’re going through that it’s as if nothing is the matter. For me, since I look normal enough, that effect is intensified. I watch as my body falls a part, and no matter how hard I try, because so few people are aware of my disease, the treatments that could help me, aren’t available. You could see me on my worst day and conclude that everything is fine. It’s as if nothing is happening; It’s as if I don’t have any disease.”

If you live in constant pain there are few things worse for you than being disregarded. Luckily for most that isolation is remedied by a loving family and a tight support group. But even the most loved still feel as if they’re somehow inferior. Growing up we hear words like ‘burden’ and ‘useless’ thrown around – we jokingly say them to siblings and friends in moments of comical weakness, but never really mean them literally. Having a rare disease does make you feel useless, and oftentimes like you’re a burden.. If you don’t have the love of a family or a tight support group, those feelings take root and before long your life is a cloudy haze of doubt and depression.

That’s the question I struggle with most: what does it mean to have value. Clearly value isn’t determined by a job, or a skill-set, or by love. But if not those things, than what? When you have a rare disease your life is spent balancing on the top of a wall. You’re bound to fall over, and when you do, you pick yourself up, piece yourself back together and again and again climb back up. But each time you re-build yourself, something is lost. And over time, the royal family thins; until it’s just you and your question marks. And in those moments of utter confusion and weakness, the only thing that keeps you together is the idea that you still have value; that you’re still important, and that you can still help.

To me, the fight of a rare disease is the fight to find value. Those battles will take different shapes for each person. It’s not about finding some unique position in the world for my disease, it’s about finding a position in the world for anyone with any disease.

EDS has taught me many things. I’ve learned humility, the value of humor and hard-work, of friendship and of love (even in their absence). Most importantly, though, I’ve learned that if we consider even one person useless, or a burden, then the questions haven’t been answered and the problems are still unsolved.

We learn by solving problems, and it’s the hardest problems which achieve the most. No matter how old you are, what job you have or what your gender is, we will all ask the big question: what does it mean to be a person. There is a world filled with people who have rare diseases, who live rare lives and who are given a rare glimpse into the fabric of life. Instead of treating us like we have no disease, be brave enough to ask the big question. I guarantee by comparison you will find the obstacles facing you much less impressive.

There is nothing that makes me feel less afraid, more safe, and more valuable than living my life for my younger brother. I don’t have a supportive family, the love of friends or any real substantial help. I am very sick, very disabled, and things are only getting worse. I live in a world that confusingly tells me of the joys of life against the backdrop of calamitous lives not worth living. And the big question mark looming hungrily above is: are you even worth all this trouble? If the only answer to that raw, fundamentally human pain is to help another person, then why is the inverse not just as true?

People need to be shown they’re capable of having value before they can ever show you they have value. And that’s just a fancy way of saying that everyone has value. If ever a tautology needed tolerated… So let us show you ourselves, and just maybe we’ll learn something together in the shade.