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.

Identity: finding a new name for anxiety.

One important reason why we are capable of maintaining these constant anxieties we have concerning our strengths, weakness and statuses is that most people don’t give thought to the idea that we’re all constantly growing – or that people are capable of substantial growth in the first place.

Most people find themselves with a particular set of skills, cultivate some job from those innate capacities, and merge that new profession with their identity. They don’t reason or internalize the many steps it took to get from point a to point b. They simply think ‘why can’t other people be like I am? It must be they are deficient?’

I feel fear when I think about the possibility of a human literally being inadequate. How could that person have an identity – since our identities are so closely related to our innate capacities. If that was the way the world worked, then that persons only identity could be her lack of skill – her deficiencies and her inadequacy. How could she not feel anything but anxiety? Since none are guaranteed security, this puts all of us in a precarious position.

And then it occurred to me: what if the crux of a person’s identity isn’t their ‘skills’, but a dynamic state of change? What if we are all identified with where we are at the point of identification; not at the point of birth, or at the point of graduation, or employment. What if we change how we identify ourselves, so that we can include those people who weren’t lucky enough to be born with some great skill.

Do we not recognize a different type of greatness in those who fight to acquire a skill they weren’t born with? We already value this state of constant change – and identify the role it plays in our identity. We’re just uncomfortable with disequilibrium – and those who are fortunate enough to escape that, do.

Let’s not. Who we are identifies where we are, not what we are.

My Life of Fear:

Fear is a big part of my life – more in the vein of competition rather than oppression. I have a lot of fears in my life, and a great portion of my day is spent being afraid of different things. Those moments, however few or fleeting, can be extremely useful if you have the courage to try and really roll up your sleeves and get to the root of the problem.

I have written quite a lot on the topic of fear, and while I feel comfortable with all that I have learned so far, I still yearn for more answers. I don’t think there is one absolute truth out there for anything; I  don’t believe in an absolute ‘hockey standard’, or  a ‘fashion truth’. I don’t believe in any type of ‘abstract’, objective standard of perfection. But I do think that we can find answers to many of the questions which we have. I think that each individual person is walking a completely different path from their fellow man, and as such, they will see ‘truth’ in a different context than everyone else. Our world is proof of this: there are Christians who are absolutely convinced of Christ, and atheists who deny his existence completely (as a spiritual being). I’m not saying I think everything is relative, and I don’t think supporting the idea that individuality extends well beyond our vain, egotistical values commits me to any form of post-modernism. I just sincerely believe that the amount of ‘stuff’ out there (facts, truths, things, events, future events, possible events) is infinitely larger than our minds can grasp. And I find an extreme sense of comfort in knowing that.

The particular question I have been obsessed with lately is this: how can I overcome fear. Overcoming fear doesn’t mean feeling absolutely no fear, but, for me, it means having an overarching understanding of fear, and all of the different ways of understanding fear. I think we can look for truth in many directions, and find incredibly satisfactory answers. But I don’t think those branches all converge onto one fact, or principle, or set of truths. I also think that our species is stupid and limited. We are beautiful and amazing, don’t get me wrong. But now that we don’t fear for our lives on a daily basis, we have food and shelter and disposable income, we have begun to fully grasp just how limited we are, intellectually.

It’s weird how our brains work. We see patterns and we see redundancies for patterns, and our brains work tirelessly behind the scenes interpreting and sifting through these patterns. As a result, answers often come from places we would never even think to look. This is called the Butterfly Effect.  I bring this up because this very phenomenon happened to me recently, and it dramatically changed (and improved) my understanding of fear.

I was reading the famed ‘Ender’s Game’ series (I’m currently reading ‘speaker for the dead’), and although almost everything in those books has had a tremendous impact on my perspective, there was one part in particular that really connected with me. Ender was talking to an artificial intelligence and they got on the topic of emotions. The AI said that emotions were something she did not understand, as they are a direct product of our evolution – that’s why we share these emotions with animals. She said that she had been created, and so as a result she finds it very difficult to ‘feel’ the way that humans do. And that’s what got me.

When I stripped everything down, ultimately my fear was rooted in this feeling of mourning that things just hadn’t turned out ‘right’. I thought that there was some ultimate objective standard, and that fear itself derives objective existence from the concept of ‘well-being’. That insofar as life is better than death, death is a bad thing, and should, ought, to be feared. But why is that true? Why are the metaphorical, dark images which come to my mind when I’m afraid ‘bad’? Why is darkness ‘bad’? Why is ’empty space’, scary? The fact of the matter is, they aren’t. I find a crisp, clear summer day on a tropical island beautiful. But, perhaps to another creature, or even to another person, darkness is beautiful, and emptiness is beautiful.

Sure death sucks, and I can accept the fact that I will probably never rationally welcome death with open arms, but that fact does not commit me to the position that says fear has inherent existence and should rightly be feared.  Fear does not exist, it just exists in us. It is incredibly complex, and if I try to surmise exactly what fear is in one, succinct sentence, I will fail. But fear is not real. It is a product of our evoultionary history, consciousness, our minds. Fear is as much a part of us as our arm, or leg. Evolution created fear, not the other way around.

I was thinking about this the other day: what would really happen if I gave up fear altogether. What if I were a soldier in battle, and as the enemy charged I threw caution to the wind and met them in pace and in spirit. And do you know what my very next thought was? I shit you not, “what if I just died directly after that. What if after throwing caution to the wind and meeting my enemy in battle I am instantly killed? What if my death is that unceremonious?”. What the fuck kind of disillusioned thinking is that? I decide to give up fear, but then the very next scene, the scene enshrined by both logic and reason, is a scene born of fear. What are the chances that I would just instantly die, unceremoniously directly after I give up my fear? Is that really an even balance of all the options?

See, that’s what fear does. Fear makes you think like there’s no other way out. It makes you see one single story, and then live by that story. Maybe in our evolutionary past this was adaptive (maybe that’s not even relevant), but now it’s not. Fear goes by another name: Barabbas. Fear can go fuck itself. We don’t need to let fear control us. You will not find that control in any religion, you will only shift the control from fear to God. The whole point of this rambling essay is to communicate that you can in fact let go of fear. You have to make that decision. It’s not going to be easy. You may feel slightly informed and maybe partially inspired after reading this, but your journey is far from over.

A few parting tips:

• Turn everything into a challenge. Life will be much less threatening if you realize you’re a competitor. 
• Accept your inevitable death. You’ll never truly get a grip on fear if you constantly entertain the delusion that you’re immortal.
• Shed your fucking ego: chances are, you will not be remembered long after your death. Find how empowering that is. Empowering in the sense that at the moment you realize how insignificant you truly are, you will finally see how much work you have to do to get where you thought you were going.
• Stop being so entitled: like I said, you’re going to be forgotten when you die. That means that no one will remember except for your family. This is why Eric Harris did what he did; he wanted a shot at immortality. Don’t do that. Instead, do everything you can to be remembered once you die – for positive reasons. At the very least, after your gone people will have a whole lot of respect for you. And there are few more comforting thoughts than that.
• Work hard: work when no ones looking. If you work for recognition only, than you really didn’t grasp the last four points at all.
• Be nice and kind to others. Fear leads people to do horrible things, and transforms people into horrible little mirages. If your afraid, run in the opposite direction. Be as nice and kind as you can, and I guarantee you, your fear lose that intensity.

Fight or Flight

It seems to me that we suffer under the illusion that panic and anxiety enhance our problem solving in times of crisis and duress. Like that gripping, tight feeling of panic when your confronted by a potvaliant bare-knuckle brawler you accidentally eyed at the bar, who now wants to knock the living shit out of you, or when you’ve fallen ill. Or the moment you realize accidentally did send that text to that person you didn’t want to send that text to. We are deluded in believing that giving in to that feeling of fear helps us; but it’s easy. And fuck me if in that moment our bodies sure don’t make a good case for it. But it’s not.

Lets take a pragmatic approach: fear is important. Fight or flight is important. Not giving in to the psychological manifestations of panic, the prolonged shadow of fear, is something everyone has to learn how to do; that is, everyone who wants a happy life. If you die tomorrow, and you spent the last year worried straight, especially when you didn’t have cause to always worry, you’ll feel like you never had the chance to live. Listen to fear. Flee when necessary and fight when possible. But never give in to panic. Don’t spend all of your days worrying and afraid. listen to what your body is telling you, respond, but don’t for a second believe that your body knows exactly what its doing. Life is nothing if not imperfect.

All worldviews agree: fear is a manifestation of weakness and a vestige of our past. I’m not religious. I believe in the order of science; I believe in cartesian doubt. I believe in classical theory and romantic theory. I believe what I think is believable.

Evolution paints a grim picture of existence, depending how you look on it; in this instance, it sheds light exactly where we can’t see.

We also live under the delusion that right now, this point of history, is super important. I’d wager everyone ever believed the exact same thing. Conscious beings place themselves, their time, at the center of the universe. Why? Because we are the center of our universe. Sure we can consider a priori knowledge, but its a posteriori that has the greatest influence over how we act an behave, what we choose to believe, and what we choose not to.

We think that we are the culmination of billions of years of natural selection and evolution. And in a way we are. But fuck me if it ends here. Were just one small dot on a giant non-linear graph. We will evolve further. Millions of years from now, who knows what we’ll be. Or even if we will be.

You may be wondering how that at all helps us with fear; I just told you that your not that important, and that most of what you believe is horse-shit – encouraging stuff… really. This information carries with it the weight of a promise. A promise that so long as things do stay alive, they will tend towards positive progression; they will get better.

Our response to fear is a conditioned response and a programmed response. We have been given the gift of consciousness. That’s the meaning of life, the beauty of it all. That’s why we think that our lives, right now, as your reading this, are of some grand plot – things are going to end with me…. We an change our lot in life. We can be the force of natural selection. Sure there are limitations to what we can do, but so long as we are conscious and capable of rational inquiry, we can surely change our selves – who we are.

the only thing lately that imbues me with a deep sense of confidence is this very fact: that our ‘calling’ is to self-evolve. To take humanity from the weak fucking subordinate position it currently resides in, and elevate that to the tip of the fucking world. That’s what Nietzsche was all about too. Everyone thought he was a weak crazy man, and Christian crackpots love saying he was a deluded schizoid, but he knew exactly who he was, and what he had to do.

Our natural response to fear is to panic. To curl up. Why? Because we associate whatever is causing the fear with its potential negative consequence; the harm it will cause us. Fear is like a phone call or a fax; fear is only a mediator. It is not real. Fear tells us that harm is coming. It’s aversive because it must warn us not to engage. Panic is the opposite; it is non-engagement. So when we panic, we think that we have separated ourselves from the conflict. Panic is also just a mediator. It’s also potent because it has to get our attention. Fight or flight. And this is the psychology of it; the romantic interpretation. Lets look at the classical interpretation.

Take a grazing zebra, for example. Say the Zebra catches a stalking predator in its periphery; the stress response is activated. In order to escape from the predator, the zebras body has to expend intense muscular effort and energy. The sympathetic nervous system activates to provide for these needs (panic). In response to a novel stimuli perceived to be dangerous, the locus coeruleus releases  catocholamine hormones (epinephrine norepinephrine) to fuel the immediate physical reactions, the often violent muscular action.

Fear is complicated and dense; our understanding of all its underpinnings and extensions and interactions will come only with time. In the meantime we have to deal with the problem at hand. If we want to have an enjoyable life, we have to be courageous. It will be hard, and it will take extreme effort; it will be the very hardest thing you ever have to do. But with a little wisdom, a little time and a lot of balls, we can look death in the face and say fuck you; we can turn stress, into eustress. And take any negative situation and turn it into a challenge.

It’s trite and slightly banal, but why wouldn’t you want to try? Why would anyone want to live their lives curled up in a ball, fearful of whatever comes their way? No one does. They just think there’s no way out; their lot is cast and that’s it – there’s nothing left to do. Wrong, as long as you’re still conscious, you can still fight. And I’d rather die fighting to live, than die in a confused panicky stupor… which is where we are all headed if we don’t man-up. This is the key. Listen to the panic; let it say its peace, and tell you what’s the matter, but don’t let it set up camp. Kick it out. Take all that stress and transform it into eustress. Your body is still telling you something is wrong, you’re not going around delusionally believing everythings perfectly fine and kicking all bad thoughts out, you’re just subtracting panic; you’re taking away the aversive feelings. Those are great for the savannah – but were not living on the savannah. Lets replace panic and the subjective feeling we call ‘fear’ with eustress. Lets face fear and stress with a smile and a shit-ton of determination. Everyone is going to die. Lets do it fucking epically!