Lessons Learned From the Chronically Ill.

This is an informal and incomplete list of some of the truths my life as a chronically ill person has revealed.

  • I’ve learned that being sick isn’t tantamount to being defective; I am not my genes… that whole platitude.
  • I’ve learned that my future isn’t clear, but that doesn’t qualify my desire to obsess over things that I cannot change. I can’t change the fact that my spinal cord is tethered. I try to support myself, saying things like: well, if I don’t spend the time constantly going over the negative aspects of my situation in my head, I may overlook that cure that’s tucked away at the back of the drawer. This is last resort thinking; not the type of thinking that reveals a happier self, or leads to a more fulfilled life — eve more so, it rarely results in any productive change.
  • I’ve learned that it’s no ones fault that others don’t get me. I have no right to complain when family members don’t understand that I actually can’t wash the dishes sometimes. And that even though I look healthy, I’m really not. I have to take the initiative to tell them what its like; to explain how difficult each and every day is. I’m required by duty to delineate how heavy the burden of uncertainty is.
  • I’ve learned that libertarianism is stupid; free will is something very few have the luxury of.
  • I’ve learned that I have a responsibility, a duty to others; both the sick and the healthy need to know that even under the most horrific conditions, life is worth fighting for — each person has an inherent value. Our value arises out of the shared primeval desire to, under any and all conditions, not die (even if we don’t particularly fancy living).
  • I’ve learned that sleep isn’t all its cracked up to be.
  • I’ve learned that school is more important than I could ever imagine; truth supersedes transitory pleasure, 10 times out of 9.
  • I’ve learned that the sick can be just as nasty as the healthy; even if they face the same struggles, and the same stigmatization, many simply fail to learn — or share a similar pathology to their healthy, albeit neurotic, counterpart(s).
  • I’ve learned that the internet is awesome. That even though Facebook can seem useless, it keeps me connected to my true friends… friends from another country I can see from the comfort of my bed.
  • I’ve learned that some days are better spent in bed.
  • I’ve also learned that opiods suck; we don’t want them any more than you want to give us them… unfortunately, we do need them.
  • I’ve learned that fighting pain is counter-productive. Pain is simply information encoded. Not listening to the pain is what’s really foolish — stoicism re-defined.
  • I’ve learned that the platitudes: live each day like its your last, and live one day at a time are far less banal than I had initially thought. This goes back to the point about not obsessing over things you can’t change, and living under the delusion that in some ass-backwards way obsessing will make things better. Whenever things get worse I find myself trying to figure out some way to restore things to how they were; I’ll say things like: ‘if only my neck wasn’t so bad, I’d be able to do anything’, or ‘if only my shoulder didn’t hurt so much, I’d be happier’. These things are obviously true, I’m not denying that. But during the time when I still had these freedoms, I was holding onto the things I had lost. I’ve learned that living one day at a time just means enjoying what you have in the present, and not obsessing about what you’ve lost in the past. It’s not possible to know exactly what the future will bring — or not bring, for that matter.
  • I’ve learned that Frued wasn’t totally full of shit; we do move towards pleasure and away from pain.
  • I’ve learned that fear of physical dependence is not a good enough reason to shy away from a narcotic that may restore function and quality of life. So I may eventually need to take the medication to stay unwanted side-effects, as well as to restore function and quality of life. When I don’t eat, I’m hungry. Why are we so afraid of becoming physically dependent on a medication that we need. Are we any more afraid of eating? Cause I can tell you this honestly: I am physically dependent on food.
  • I’ve also learned that utilitarianism totally screws over those suffering from chronic pain.
  • Most imortantly, though, I’ve learned that generally people move towards the good. I’m aware that induction is probable at best, but I’ve met a lot of different people, and have personally lived many different lives. In all my experiences — even the most singularly horrible ones —  I keep running up against this one truth: people like the hero and despise the villain. Tom Robbins once said “There is no such thing as a weird human being, it’s just that some people require more understanding than others.” I like to think the same is true for those we call ‘bad’.

“The justness of a given act varies according to what one is, and has”. We may not be able to fight off a hoard of zombies in a post-apocalyptic world, or work an 80 hour week saving lives as a doctor, but that doesn’t mean that what we can do is any less important or honourable. As long as we try and do something, even if that’s something as ‘meaningless’ as staying alive, we are acting in just ways; we are fulfilling our duty.

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5 thoughts on “Lessons Learned From the Chronically Ill.

    • Wow Tanner! This is awesome my friend! I see one of those that you got from my super de duper Doc story about being dependent on meds! Love and Hugs to you buddy!

  1. “I’ve learned that sleep isn’t all its cracked up to be.” – This is great!

    “I’ve learned that the internet is awesome. That even though Facebook can seem useless, it keeps me connected to my true friends… friends from another country I can see from the comfort of my bed.” Just don’t do medical research on Web MD or Dr. Oz channel…Research reliable sources! YOUR friends admire you and love you Tanner! Yes we do! You keep fighting the good fight my friend! This WILL get better. Please connect with Heidi!

    I’ve also learned that opiods suck; we don’t want them any more than you want to give us them… unfortunately, we do need them…. I HATE THEM DUDE! If I take pain meds, I am in some MAJOR pain! I’ve taken 4 in 3 years. They just make me so sick. You need a new Doctor! OH WAIT! YOU can’t do that…You live in a country with National Healthcare. Tell us about that man!

    I’ve learned that fighting pain is counter-productive. Pain is simply information encoded. Not listening to the pain is what’s really foolish — stoicism re-defined……Put down your bat tanner….I’m GUILTY!!!!!!

    I’ve learned that Frued wasn’t totally full of shit; we do move towards pleasure and away from pain…. YOU aren’t addicted to prolo yet! Although this could be true….The pleasure of not subluxing or “twisting” as often is amazing! Sheer bliss in an EDS world. Prolo is usually “uncomfortable” and downright painful sometimes. Yet, it feels so good! I can’t wait for you to have your first session. The feeling is inexplicable. It seems impossible to hurt and feel great all at once….YOU just wait!!!!!!

    When I don’t eat, I’m hungry. Why are we so afraid of becoming physically dependent on a medication that we need. Are we any more afraid of eating? Cause I can tell you this honestly: I am physically dependent on food.- Awww, sweet. You used my Doctors analogy. This is very true though! You rational folks inspire me!

    Most imortantly, though, I’ve learned that generally people move towards the good- That quote is sooo you! “See the good Ila, look for the good Ila, find the good Ila”. You truly live this kind of life. I agree to some degree, we’ve had this discussion!

    “The justness of a given act varies according to what one is, and has”. We may not be able to fight off a hoard of zombies in a post-apocalyptic world, or work an 80 hour week saving lives as a doctor, but that doesn’t mean that what we can do is any less important or honourable. – Tanner, this is so true! Each person has their own unique gifts and calling. YOU are dead-on with yours man!

    Don’t forget that GOD created you, he knows the number of hairs on your head! You’ve got to believe that he knows about your collagen as well! Tanner, he’s got this and he’s using you in ways that you can’t even imagine. I promise! You keep up this fight and when you feel like giving up, call me, I’ll cheer you on!

    • Haha, of course you’re going to bask our healthcare! It looks out for everyone equally… which is more than I can say for private healthcare. If I need a heart transplant, I can get one — even if I’m completely broke. If I can’t afford health insurance and I need a heart transplant in the states… I’M DEAD.

      You’re the best though. You’ve really helped me through a super difficult time in my life. I can’t thank you enough!

  2. Ila says:

    Oh dear yes! It’s better than this discombobulated mess….but they won’t do prolotherapy and aren’t helping you, so they suck!

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