There’s the daily grind: The clinic visits are strategic meetings. The treatments are patrols. The two-week antibiotic courses are skirmishes. Then there are the defining moments of the war — the brutal flare-ups when bacteria or viruses strike. They are the actual battles.
We counter in full-force with an arsenal of antibiotics. Collateral damage is to be expected — we are fighting with napalm. When translated from Greek, “antibiotics” means “against life” They don’t discriminate between good and bad life. The drugs hurt the villainous bacteria and they hurt you.
As in war, we veterans often leave physically scarred, including mentally. If the flare-ups are battles, then my fight against a blood infection and septic shock last summer were my Gettysburg, my Somme, my Normandy. It was a turning point in the progress of my disease, with the momentum surging against me.
Physical recovery took six months, culminating in a double-lung transplant. Mental recovery is an ongoing process. I still experience flashbacks from that time, such as when I see an ICU scene on a TV show or when I watch a movie that included an acid trip scene reminiscent of my own hallucinations: Falling backward into oil-slicked tidal pools over and over, a million times for three days straight.
Once, my dad came behind me and grabbed my shoulders from behind. I was suddenly whipped into a microsecond flashback of a multitude of doctors’ and nurses’ hands pushing me down into my hospital bed as I writhed about. When I was suffering from ICU psychosis, I had tried tearing out my IVs, taking off my BiPAP, and punching nurses. They were forced to strap me to my bed for days like a madman. It was the absolute worst thing that’s ever happened to me.
Stab me with needles, cut me open, give me terrible antibiotics — I can handle it. But I tremble as I write this, just thinking of being strapped down and forced to feel powerless in such a horrific time.
I ended up back in the ICU a few months later for a small procedure to replace my G-J (gastro-jejunal) tube. The procedure wasn’t the scary part. What really got me shaking, mind-racing, was the small peek I got into the room where I’d experienced those horrors. A simple peek. I don’t realize how powerful the brain is until it’s processing hundreds of vivid memories in the space of a few seconds.
Minutes later, I was on the operating table getting painkillers through an IV. While lying there for the next hour, I allowed my mind to drift and consider the source of my anxiety — the ICU room. A room? Panicking me as if the room is animate and out to get me? In my drug-induced haze, it seemed silly.
My girlfriend once asked me what good happened in the ICU. She asked if I could focus on that instead of the bad. I should face that room and think of it as a place where I emerged victorious against the odds (doctors said I had a good chance of dying). I should face it and remember the sacrificial love of my family and friends while I was in there. I should face it and realize how far I’ve come, rather than letting the memories drag me back.
The book Wisdom Sits in Places explores the significance of “place” for the Apache people, specifically how they named places after whatever made them significant. They named the places. They decided the significance of those places. A river could be named “First Water” because it was the first body of water the tribe discovered in the area, or they could call it “Blood River” because a murder occurred there. It’s their choice. Couldn’t the same concept be applied to my connection with the ICU? I’m not gonna rename the room “Party Land,” but I can decide the meaning of it.
My fear of memory might always be a companion, but I feel its grip on my shoulders loosening. Just as the events of last summer were a turning point in favor of CF, the realizations born on that operating table were a turning point in favor of my mind. It’s funny what a forced shift in perspective can do. I’d like to revisit that ICU one day and declare the battle fought there was bloody and terrifying, but the war was an eventual victory.
Are there any events or places in your life that need renaming?
* Not everyone likes their disease to be referred to as a war or battle, because it makes them feel like they’re “losing” if they decline in health. Some, like me, self-label. Let those who are ill choose their own labels for their journey.
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