Sword of Damocles
Bit of a different subject
Imagine, for a moment, that you are sitting at a desk. Or standing. Or hanging with friends. You are doing literally anything.
All of a sudden you feel something.
It could be a twinge in your back, a gurgle in your stomach, an ache in your chest. It shoots you full of panic, because you know what it means. Your heart begins to race, you start to sweat a bit. Even as you begin to question1, your body had begun the physiological reaction to the symptoms. The fear response to the overarching illness that will control your life for as long as it wants to.
It may be a few hours later that you realize. It may not be until that night or the next day or even a couple weeks later. When you realize your illness has recurred, that the symptoms have finally come out of hibernation.
You spend the following time in the bathroom or curled up in bed or on the couch. You might be able to read, or watch TV, maybe even play video games. You contact your boss, who is not shocked as this always seems to come up at the worst possible moment. Even as you apologize profusely for something that may or may not be your fault, and they accept it and state that it’s okay (“take as much time as you need!”), you cannot help but wonder whether or not they are running calculations behind the scenes. Calculations of how much you cost the company vs how much you make it.
You just hope that you end up on the green side of that calculation again.
You recover. After a few weeks or days or even hours, you are healed so quickly and completely that it is as if no one even knew you were sick. For a while, you worry about it. Every passing pain or strange noise from your body could be a sign that it is coming back, that you will have to disappear again.
You go about your life as your normally would, with all the highs and lows, and try to ignore it. Eventually, you might even succeed. If enough time has passed, you may forget that you were sick to begin with.
Or maybe you didn’t forget, and you just got tired of the constant vigilance.
Of checking the descriptions of menu items or asking waiters if there actually is mustard in the salad dressing. Of taking your medication with every single meal. Of being sure to stretch out your body every day. Maybe you got tired of not being a normal fucking human.
Maybe you forget to take your meds one day. Maybe you forget to stretch. Maybe you eat something you shouldn’t.
Maybe none of these things happen and it is simply time.
Whatever is inside of you comes to bear once again.
After it has, after you’ve taken the time off or called your doctor or done whatever it is that happens when you recur, the questions begin. They circle around as you sit on the toilet, in bed, on the couch: Did you get sick because you skipped your meds? Was it because of that one time you ate McDonald’s a few weeks ago? Is it because you are a bad person, truly, deep down at your core and you deserve this?
The longer it lasts, the more pressing the questions: Should you go to the hospital?2 Is it possible it’s something else? Are you faking this for the attention? Will your children have it?
Will it ever end?
Being chronically ill is a Sword of Damocles, the tax that comes from having the gall to be alive and trying to live your life the way you see fit.
I cannot express how exhausting it is.
I live with a chronic kidney disease called IgA Nephropathy. For the last two years, it has (mostly) been in remission. Through a combination of eating well and taking fish oil, I haven’t really had any problems. But this January, it decided that it was time to rear it’s ugly head and throw me for a loop. I am lucky that I work for a company (and have a boss) that is very understanding with regard to sick time. I am lucky that I have a partner who is willing to hear about my kidney problems, while continuing to deal with her own debilitating disability3.
I am lucky that I had two years without a recurrence.
Generally, IgA Nephropathy is not a problem. It is believed a large chunk of the population already has it, but don’t have bad enough symptoms to be diagnosed (yay for being the exception!). I am at Stage Two out of five possible kidney failure stages. The last two years my IgA levels, creatinine, and red blood cell count in my urine decreased consistently and will continue to decrease if I eat healthy and lose weight.
I don’t know why it decided to come back now. I have some ideas, but it doesn’t really matter. I’ll never really know what the root cause is, because that’s not how medicine works with conditions like this.
Sometimes disease just recur. Sometimes there isn’t a reason.
Sometimes life just sucks, and you have to deal.
I’m not writing this because I want sympathy. I want people to understand what it is like to live with a chronic illness, to not be able to trust your body in any way. I want people to feel, if only for a moment, the paranoia and worry and guilt that some of us with chronic illness feel regularly.
Some of us never have recurrences, we never get a break from the illness. For some, it is a constant game of weighing the decisions in their lives; trying to decide if something as innocuous as going to a grocery store or going to a party is going to be worth the pain and discomfort it might bring.
I’m hopeful that we will resume our regularly scheduled programming next week with a post on scene vs summary, assuming I’m feeling well enough to finish the post. That will conclude my series on “micro” techniques for writing. I’ll then start producing some pieces on what I consider to be “macro” techniques, such as outlining, world-building, research, and so on.
Thanks for patience and respect as I continue to try and find my footing.
“Is this normal?” “Do I have food poisoning?” “Am I having a heart attack?”
That question asked along with its constant companion, in this country at least, can you afford to go to the hospital?
ME/CFS also known as Chronic Fatigue Syndrome.