The Hero Of My Own Story

04/21/2017 05:58 pm ET

We’ve all heard the phrase “everyone’s the hero of their own story,” but do you ever stop and consider what that really means? I have been thinking about it a lot lately, and what it really means to someone chronically ill. Spoiler alert: it’s not all beautiful maidens and slain dragons.

Having a chronic illness shakes your faith in yourself on an hourly basis. Want to change a light bulb? Your shoulders don’t have enough range of motion. Need to change a tire? Don’t have the strength to turn the bolts. Want to change your socks? Can’t reach past my toes. You get the idea – chronic illness makes your painfully aware of all the things you can’t do on a very regular basis, and that’s when you are well. Unfortunately, I was sick recently, more ill than I’d been in a long time. You’d think that would be a regular occurrence for someone with no immune system, but the fact of the matter is that whenever I feel an illness coming on I immediately start a course of antibiotics, and it nips almost everything in the bud. So, when I began to exhibit the signs of a chest cold, I followed protocol and started treatment. It seems I was facing the Hydra of cold bugs this time, though, and although I cut off one head, two grew in it’s place. It overwhelmed the power of the Z-pack in a mere 24 hours, but it was enough of a feint to convince me to proceed with a vacation we had planned months before.

The armies of light were arrayed against the forces of darkness in a life or death struggle for control of my lungs. For a trio of miserable days the war raged on, and by the third day I began to lose my nerve. I knew, deep down, that it was my job to keep it together, being the hero, but the truth is, at that moment I felt more like the plucky comic relief who got duped into going on vacation while sick for the audience’s entertainment. Laying there in bed in a strange hotel room for the third day, knowing my illness was getting worse, stuck in a foreign country, I began to spin out. That stoic “hero” decorum that protagonists seem to ooze was just about worn thin. I was nervous, I didn’t have any of my usual support structure available, and there was a chance I’d end up in a hospital in a foreign country. It was frightening, there’s no other way to say it, and I let fear get the best of me.

Eventually, after about half of day of nerves and frustration whipping me up into a frenzy, my wife and my mom stepped in and set me back on track. We called one of those concierge doctors you see on certain TV shows, and he gave me a more powerful antibiotic, which set me back on track. It still took me till the last day of the trip to be well enough to do anything, but the fear was gone. I was in the right head space again to get well, even if it took another week. Being chronically ill, you see mind over matter work wonders, and this instance was no exception.

After I got home and had time to consider all that had happened, I was ashamed. There’s no doubt about it, I certainly didn’t feel like the “hero” of my own story on that particular day. I mean, a hero is supposed to go charging headlong into danger without fear? Right? Well, after careful reflection, I’m not sure that’s entirely true. The hero’s journey often includes a time, usually in act two, when he or she loses faith. Whether it’s facing undefeatable odds, or overwhelming force, most heroes endure a period where they are more “can’t do,” then “let’s go.” Eventually, after some soul searching, and maybe a quest, our hero realizes he has to try, win or lose.

People say “everyone is the hero of their own story,” when someone assumes themselves to be in a position of right when all outward signs are to the contrary. We use it lightly, but to those who live with chronic it’s not just a kitsch saying. Sometimes the only way you can get through the day with autoimmune disease is to keep telling yourself that you are fighting the forces of evil, and you just need to hold out a little bit longer to get to your goal. So, of course, when people like me fail in this effort, we feel it just as acutely and with as much passion as we do when our quests are successful. What that means in layman’s terms is that some days, just to get up, we have to dig deep and grab our soul by the collar and drag it along to take each and every step. It’s part and parcel of living with chronic illness. I can’t tell you how many times I’ve pushed myself using nothing more than sheer force of will and raw emotion as fuel. Sure, over the years, I’ve learned some tricks – like how to mentally turn pain into a feeling of pressure, or a pulsing sensation, but it’s not like night and day – it’s a difference of inches, not miles. As you can imagine, though, it requires an immense amount of mental focus to do something like that, so there’s not much left to work with when other hiccups inevitably hit. All of this makes it extremely easy it is to lose it, and I know that, and I’ve been told many times, but I still feel ashamed every time I can’t do.

So, now I have to find a way to put this latest journey behind me and start on the next mission, whatever it may be – a second ankle replacement, getting my teeth fixed again, or having a child. Whatever it is, I’m sure I haven’t seen the last of my trials, so I’m going to have to either learn how to live with the increasing failures of an aging body, or zap my brain into a robot body. Since the latter isn’t a thing, it’s going to have to be the former for now.

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