The unexpectedly expected difficulty of living with a chronic medical condition

I have a chronic medical condition. Of the broken bones, torn cartilage, failing and struggling organs, surgeries, uncooperative genes, medications, broken friendships, dreams and loss of freedom (in no particular order), the worst effect so far is the feeling of not feeling like I have a future. Let me explain. Such an admission warrants suspicion. I’m aware of that. There are plenty of people who feel they have no future (in-fact, it’s quite a common phenomenon – shared across the spectrum of ‘things to deal with while living’). So it’s not necessarily something unique to chronic illness like failing organs, surgeries, medications and broken bones are. Have you ever felt so sure about something that everything in the world just appeared to make sense? Feeling that way is, to be fair, irrational, but that’s how I feel now. I only wish I was less justified in feeling this way, and felt with less conviction.

When I became ill I was a student. The groundwork for my pathology and my disease was already in-place when I was born, but I didn’t notice that anything was seriously wrong until I was in my second year of University. It was during my very first day of classes when I realized that there was a more sinister narrative to my life, of which I was an unwitting character in. During that semester I had clumped together more than a few science classes and corresponding labs. I had something crazy like 20 hours of lab work per week – on top of the 35 hour class time. Every day was 8-6. A ten hour day is hard on even the strongest and healthiest, and I was (and am) neither. My first day I had a biology lab, a chemistry lab, and a physics lab. The physics lab went off without a hitch; we spent it in a computer lab, writing up a report of an experiment done largely in our minds. I was told that things would get a little more hands-on than that, but at a maximum of one hour (of which half had to be spent in the computer lab), I wasn’t particularly worried. Next came the biology lab. The biology lab was longer (3 hours 2x a week), but again, it could be spent largely seated in a chair; a relief for me. Again, like the physics lab, most of the time spent in the biology lab was writing up reports. The chemistry lab proved the most daunting. Chemistry isn’t done from a seated position, and the two hours I spent in the three hour lab I realized I had injuries in places I hadn’t really recognized as injured. My back suffered the most that day. Stiffened and defeated, I came home later than expected and remembered I had promised my younger brother that I would drive to Niagara with him to pick up his boyfriend. This is when me and my brother were still on talking terms. I remember having to plead with him to let me get out of it. And when he and his boyfriend came home (my other brother offering to drive) they wouldn’t let me hear the end of it. Which bespoke of the worst effect of living with a chronic illness: suffering is intersectional, and those who don’t understand unfortunately can’t be blamed in any lasting way for their ignorance.

Three years have passed since that day and I can still recall the way the morning due soaked through my shoes, dampening my socks, the smell of the bunson burner and the confusing pain of realizing that I wasn’t going to become a doctor. Since that time, I’ve failed making friends, I’ve been kicked out and disowned by my mother for being a cripple, and I’ve watched injury after injury wash over me like the ocean consuming someone lost at sea. Everything I ever feared happening has happened – and more. Yet for all that loss and all that suffering, I’ve managed to create wonderful value for myself philosophically and morally. I’ve crossed a line in my life, where I don’t envy anyone else; I don’t want to live anyone’s life – not Bill Gates, nor Leo DiCaprio (or anyone awesome). There’s a resilience to me that so far has remained in-tact, despite these life-altering problems that I have no power to control. Despite that resilience, I have a tough time coping with going unnoticed. When doctors treat me, it’s as if they’ve forgotten that I’m a person. I’m treated like a lost cause – even though no person is. Which is confusing for me because I really like myself. Despite all the other particulars, I actually like my life. The problem I’m having is that no one else does, and I’m starting to think like them.

I feel like I didn’t know it was possible to feel. One of the astounding things I’ve discovered over the years since that first day in the second semester of my time at University, is that even though you can know and prove that someone else’s worldview is wrong, the contrary retains tremendous truth and value, and as such should not be dismissed as it so often is. When I was healthy, I divided the world up into two big groups: those who agreed with me, and those who did not. There are two types of ignorance. One where you truly don’t know something (like I don’t know what’s going on in the world of physics right now), and one where you are wrong about something (like knowing that the world of physics is embroiled in a great debate over who has the right to jump into a black-hole first). I was ignorant in both ways. And now I’m the victim of both those types of ignorance. Funny how that works.

Change happens when new information is processed. If my life had a movie, it would be called ‘Ignorance Fading’. I’ve lived such a strange life. I’m constantly forced to reconsider the things I believe. That’s a pretty common phenomenon for those who are chronically ill.  With a generous dash of meta-cognition, I’ve been able to reconstruct new theories from failed ones. I have chosen to believe things that add comfort to my life. When I’m treated poorly because I’m disabled I construct ideas to defend against that sort of thing happening again. But because I’ve experienced so many thought provoking things in such a short time (like losing friends and family, discovering spine masses and becoming bed-bound) I’m almost always vulnerable. I have to interact with doctors quite a bit, and it’s not always a pleasant or uplifting experience. They can make you feel unimportant like no other.

Quite often ego is talked of strictly in terms of vice, and its deleterious effects, but ego plays an important role in maintaining mental well-being. This well-being is contingent on a few things: (1) on coping with your own inadequacy and imperfection, (2) on coping with the complexity of life, and how other people can behave poorly and act crudely, and (3) on coping with the assurance of our own inevitable demise – and the possibility of failure and loss.

As a chronically- ill Canadian man, in a society with a culture of machismo, maintained by lumber-jacks and tradesman, I don’t really have ego-fodder. Living in almost absolute isolation (I’m lucky if I get twenty minutes of conversation with another human being every other day) has deprived me of the need for an ego, which becomes problematic when I have to interact with people beyond the limits of my apartment. The ego isn’t the best way to defend yourself (theories and ideas are more durable), but it is the easiest – and the most guaranteed – way. And in a life described in terms uniformly anti-easy, it’s an attractive solution. Unfortunately, it’s not one that’s possible for me.

Without an ego to defend myself against people who treat me like I’m just wasting space and wasting resources better served for the healthy and the fit, and without grand moral ideas to keep me protected from shitty interactions with ignorant people, I’m in a very vulnerable place. I have been in this place for a while. Although I don’t take umbrage with these doctors and neighbors, in light of recent discoveries medically, and without any support, I’m feeling very hopeless.

We’ve all witnessed someone declaring they don’t have any future, storming out of the room in a flash of teenage angst and melodrama. The natural, sensible response to that is doubt. Feeling like nobody understands you is a natural thought when you’re a teenager. It essentially results from your viewing yourself as a distinct being from everyone else clashing with your novice ideas and ignorance.

When people look at me they see themselves. Mirror neurons have imbued us with the ability to feel what others are feeling. Most of the time even I don’t like feeling what I feel, so I don’t blame people for their reactions. I’ve had a long time to acclimate. I understand why people don’t want to be friends with me. It has made me feel hopeless, and that hopelessness in-turn has just given them more stuff to be afraid of. I’m sure that’s why doctors are so stand-off-ish. Combine that phenomenon with salient social norms, and the intersecting particulars in my life, and… it’s no wonder I feel like I have no future.

We can all create some of the things we need to accomplish our goals. Unfortunately, people suck; we’re all dumb. Low-effort thinking and heuristics are employed indiscriminately. Our egos can provide some support, but I don’t have any sources for an ego (cue cultural norms and me being a dumb person). Most of the tools for creating a good future are given to us (loving family, good social standing, education). I lost that lottery as well. I uniquely feel like I don’t have a future. I feel it. It’s the feeling that is so disarming and so discomforting. I may indeed succeed some how in accomplishing some goals. That’s the rule of large numbers. I may find happiness and meaning through love and support (the least demanding wish). But I don’t feel like I can, honestly. Because of the cultural norms pointlessly holding me back, I doubt I’ll ever find any love and support. I count my blessings every day; I’m not one to feel entitled to anything. There’s just so much more to being sick than actually being sick.

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