“I understand” he said.
It was the weekly meeting, and, as always, we started with an ice breaker. Today’s: write down three words to describe your life. I was honest, too honest, as I usually am. Pain. Struggle. Love. Three words to describe my life. I’m sure I’d give you different words on a different day or at a different time, but the pain and struggle has been at the forefront of thought.
Around the room we go, reading out our words. Oh no! I didn’t realize I would have to read them myself. Quickly go the people ahead of me rapidly chipping away at the time I have left. Three, two, one, my turn.
Pain. Struggle. Love.
“I understand” my supervisor says. “We’ve all felt that way.”
No! You haven’t! You got sick with a fucking cold and we all know that within a week you’ll be back to feeling good. The illness will pass through you leaving you weak and in pain for a time. Yet, when the illness runs its course, you will have your health back. You will have a body that functions in the ways that are expected. You will go days and days without thoughts of pain. You will live your life as you always have, for illness is just a temporary state.
I got sick. Deadly sick. Infection coursing through my veins. Sepsis. My already broken body failed me even more as I fell into the depths of the worst sickness of my life. Fevers wracked my fragile frame bringing burning pain and shaking chills and thirst that wouldn’t end. My joints set ablaze with a pain I’d never felt (which was surprising to one who is always in pain). My head cracked open with a violent pulsing that tore through me anew with every cough, every step, every movement. I was so much sicker than I had ever been.
Did you know that first stage sepsis, the kind I had, kills 15-30% of people who have it? For those who advance to severe sepsis, these numbers jump to 40-60%. I read these numbers with fear pulsing through my chest. Each day was a battle for survival.
While the illness left my body in a desolate state, what was worse, more painful, more fearful, was what happened in my head. Words seemed to be harder to reach. My speech deteriorating. “I hungry.” “I want bagel.” “Head…hurt…help.” Parts of speech were dropped from my head. My sentences sounding like those of a toddler. Yet, even that was bearable. But what tore me apart, what sent ice-cold fear coursing through my veins to seize my heart, was the realization I couldn’t do basic math. My cognition had been so greatly affected that what once flew through my mind with ease was now an immense struggle. 327+327. I grasped at these numbers trying to hold them in my mind. I never got around to adding them because the effort just to hold onto them was too much. I cried. Hysterical sobs ripping out of my chest. This should be easy. This has always been easy. Why not now?
And, now, my body continues to heal. The fevers have ceased. The infection has left my blood. Yet, even now, I am weaker than I was before I got sick. The fatigue is worse. The new pains of sepsis linger. Each day this week has been an immense struggle to just get through work and make it home.
I have no hope of getting “better.” I will not magically become healthy when sepsis has finally run its course. I will still be chronically ill. I will still have tissue growing where it shouldn’t throughout my body causing pain and so much more. I will still be fatigued and have widespread pain from fibromyalgia. I will still have joints that move in ways they shouldn’t. I will still be disabled.
You get sick but then you get better. I get sick and hope to get back to where I was before the sickness hit. Not to a state of “better,” but to a place where I’m only dealing with the familiar pain and fatigue and everything else.
You fucking don’t and I hope you never will. You asked me to sum up my life in three words. Pain was the first word that flitted through my mind and made its way to paper for pain is my constant. I hope you never have to know what it is to exist in pain, to live every moment with varying levels of pain throughout your body. I hope you never look at your future knowing every day you live will be filled with pain with no hope of ever having a pain free day.
You understand what it’s like to go to doctor after doctor fighting to be believed? You understand what it’s like to be seen as “drug-seeking” when you try to get help for the pain you cannot bear? You understand what it’s like to spend almost half your paycheck on medical expenses? You understand what it’s like to know that none of this will ever really change? You understand what it’s like to constantly fear for your job because you watch yourself get sicker and wonder how much longer you can keep this up? I didn’t fucking think so.
“Haha, yeah,” was all that slipped through my lips, too afraid to say what I really thought.