I was three years old when I was diagnosed with chronic renal failure. There was a mistake, an ego trip, and it all led to my life being interesting? Is that the right word? It wasn’t…boring?
Wow. Okay. No, not even close, but I do understand the confusion.
All you hear about are the exploding life bombs. Trips in ambulances. All those surgeries. Stays in the ICU. High adrenaline, shot of fear, kinda stuff that’s straight out of a tv show. The other stuff? Well, commercial break!
Do you want to know what living with a chronic illness is really like? Here are some cold hard numbers. Facts and figures. Irrefutable enumerations that I just made up. By my questionable and dubious mathematical skills, I calculate that life with a chronic illness is: 90% boredom, 7% dread, and 3% WHAT FRESH HELL IS THIS!
I can’t even count how many hours I’ve spent in plastic in chairs, on hospital beds, or cold hard gurneys. Sitting there, or laying awkwardly, staring off at nothing while I wait for something to happen. Killing time by counting ceiling tiles or getting groovy to the beep of some damn machine.
You thought elevator music was bad? Ha!
Tv makes a hospital look like a nonstop thrill ride. The stakes are high. Every second counts. The music is fast and our hearts race. Live damn it. Live! Crap, I’m running out of popcorn.
As a real patient, with a real illness, it’s less enthusiastic. I spend most of my time waiting for something to happen. Then, I wait for my life to adjust to whatever the hell just happened. It’s a merry-go-round with a little more scary than merry.
The fresh scars become a part of this new life. I get used to whatever pain lingers. I settle into a new reality that’s only slightly different from the one I was living. What else can I do?
It’s not like I can exit stage left and leave it behind. The credits don’t roll. I can’t hang up my costume, wash off the makeup, and get drunk with my costars. Real-life, that little bitch, doesn’t work that way.
So I shake it off, get used to walking with a bit of a limp, and keep on going. Pain becomes normal. The scars fade. The story becomes vapid and, damn, if I have to talk about it one more time.
It all becomes so boring.
Except for that ounce of dread because it’s going to happen again. I know it’ll happen again. It’s inevitable. It’s a part of the deal. The shoe will drop. The cannon will sound. War drums will beat. At some point, all hell will break loose.
It’s all or nothing. Nothing happens for hours, days, weeks, or years and then boom! The first shot is fired. The fight begins without warning.
Pain or the burning grip of imminent death. A ride in an ambulance. Prayers sent to the guy on top of the thing. Fists clench in a desperate attempt to hold on for one more breath.
3% absolute terror.
Even the fear becomes normal. We get used to the rush of adrenaline. That taste of death, stinging the back of the throat, doesn’t bring a whimper but a sigh. We rationalize the moment and boil it down to something more palatable.
My Gran used to say, “This too shall pass.”
I don’t like cliches but this one stuck. This time tomorrow, one way or another, it’ll be over. I’ll have survived or not. It’ll be over. This moment won’t last so hold on for one more minute.
It’s the one thing that helps me find my feet and walk into another operating room. “This time tomorrow it’ll be over.”
When I was bleeding out and we were waiting for an ambulance it kept the fear in check. “This time tomorrow it’ll be over.”
When my heart races, my chest tightens, and panic crashes through me it’s the distant voice that brings some calm. “This time tomorrow it’ll be over.”
Calm in chaos.
Stability in instability.
Certainty when uncertainty takes over.
I need calm, stability, and certainty but having a chronic illness means those things are as mythical as fairies, unicorns, and tv shows. They’re fun to dream about but reality is always there. It nags. It tugs on my pant leg. It pokes me in the ribs. I have to wake up and face it.
I wouldn’t mind staying in that magical world for a few more minutes, hours, days. Years would be too much to hope for right?
When life gives us more shit than giggles there’s only one thing to do: Get a shovel. Go digging for a version of calm, stability, and certainty that’s strong enough to keep our heads above water.
For me, it’s a silly saying my grandmother got from her grandmother. It’s my family, friends, dog. It’s a faith in God, science, the planet, and mythical beasts if you know where to find them.
If we dig deep enough and look hard enough we’ll find something to hold on to. It doesn’t have to be magical, spiritual, or mythical. It doesn’t have to be all that big. It doesn’t have to be something we can explain.
It’s personal. It’s something that connects us to that special place where hope hides. It’s a hand that holds onto us long enough for this moment to pass. With any luck, it gets us back to good. Eventually. Hopefully. Knock on wood.