Remember when you were little and you had an unnatural fear of monsters? For some of us it was the monster in the closet, that had our eyes trained on the door when the lights went out at night. Or it could have been the monster under the bed, making us fear for our limbs if we had to get up for water or the bathroom. For me, it was the drain monster. The brother of one of the girls in my Girl Scouts troop would tell a story about a monster that lived in pool drains. If you ever swam too close to the drain, the monster would reach out and gobble you up. This story haunted me for years. In fact, to this day I’m still wary of pool drains, tending to stay away from the deep end. It’s funny how childhood terrors stay with you.
I always figured this was the reason I was so into horror movies. As an 80’s child I grew up watching Jaws, The Goonies, It, and The Gate. Sure, they were scary movies that have me nightmares, but I still liked watching them. As I grew older, my tastes didn’t change. To this day Jaws is still my favorite horror movie; in fact I own the 4 movie series on DVD. I love monster flicks. Lake Placid, Piranha, Deep Blue Sea, Aliens, Predator, all great creature movies. But one that has always stayed with me since I saw it in the late 90’s was Deep Rising.
Deep Rising was cheesy horror movie that came out in 1998, about a high end cruise ship being attacked by an ocean dwelling monster. It captured the idea of the ‘fishbowl theory’ perfectly. That idea of course being that some fish only grow to the size of their tank, so just think how big they could get in the deep blue sea. In the movie these small worm-like creatures ended up being quite big out in the ocean, and took it upon themselves to attack this ship, entering it through bowel systems and pipes. One of the best ‘horrific’ scenes is when a scared passenger locks themselves in a bathroom and sits down on the toilet, presumably in attempts to hide from the scary beasts. Bad choice on their part, as one of these creatures comes up through the toilet and devours them. Not a great way to go…
When I first saw that movie I was in my late teens, and had obviously long ago gotten over my fear that monsters did in fact live in drains, hide in closets, and lurk under beds. Sure the memories lingered, and to this day I’m still wary of cannibalistic clowns hiding in storm drains, and tend to avoid walking across them. And I have no problem at all admitting that I am often afraid of the dark, and spiders should be murdered on contact. The point is that we grow up and change. The things that go bump in the night are no longer hiding in the dark corners of our bedrooms, but rather the back alleys of Chinatown. And claws and sharp teeth aren’t as scary as guns and knives.
I am not afraid of the drain monster. My shower and the neighbors pool don’t scare me. But… on a really bad pain day, my toilet can be pretty scary. No, not because a giant worm monster is going to creep up the pipes and eat my butt… though now that image will definitely be in my head next time I pee (Good job, Christine). What I fear is the pain that comes from trying to get off that toilet seat once I’m done. What a very real fear that can be.
Today was a bad pain day. I must have been really exhausted yesterday, because I slept through my 4am medicine alarm, not waking until 6:30am. My joints were not happy. I should have had a good dose of steroids and pain management a couple hours before, to hopefully start my day in a semi-mobile state. But because I slept through my alarm, I’d gone 2 1/2 hours without continual medicine in my body. Gosh, could I feel it. To say I felt like I’d been hit by a bus would have been a gross understatement. My flare was widespread and excruciating. I knew I had to use the bathroom but the very idea filled me with panic.
How was I going to get up once I was done?
I knew from the sight of the discolored skin on my knees that they were flaring the worst. The flesh was squishy to the touch, a sure fire sign that there was infected fluid around the joint and bones. Clutching my newly fractured left ribcage, I rolled to my left and pushed myself into a sitting position. Gingerly, I touched feet to floor and hoisted myself up.
Involuntary yelp. The pain was undeniable. I hobbled into the bathroom, and nervously looked at the toilet. I knew I had to sit on it, but I was truly afraid that once down I may not get back up. My need for relief outweighed the fear and I slowly lowered myself down.
Another involuntary yelp. How could anything hurt this bad? I was exhausted from the effort. I did my business, and then closed my eyes, readying myself to get back to bed. With one hand on the wall in front of me, and another on the sink to my right. Deep breath. Deep breath. And go….
Nope. No go. The second I put pressure on my knees I fell back down.
Fear engulfed me. I wasn’t even near my phone. What if I couldn’t get off this toilet? What if I died right here from the pain? Was this my story?
“Patient dies on toilet.”
Let’s try this again. Hands on wall and sink, feet spread wide for traction, and…..up?
No, not quite. Okay, third time is the charm. Just think how great bed will feel. Smooshy pillows, snuggly blanket, cuddly cats…
Not dying of arthritis pain on this toilet. Not today. No sir.
One, two, deep breath, and… “AAAAAAGGGGGGHHHH….”
I was up! Gosh, I hoped my neighbors didn’t hear me screaming and call the cops. But the point was I made it. It hurt like nothing I could describe… But I had gotten up and back into bed.
The pain was real.
The fear was real.
I know healthy regular people don’t understand how someone could be afraid of a toilet at 34. To be honest, if I shared it with a friend their mind would probably go to a different place than what the reality was.
‘Was I nuts? Was I scared of a toilet boogeyman? Did I think something lived in there?’
No guys, I’m not nuts, though peanut butter on toast sounds really yummy right now… There is no monster under the bed, or worm monster coming out of my toilet to get me. The only thing I truly fear these days is when and where I’ll die. And how much more pain I can possibly endure. Or what happens if I really can’t get off my toilet when I’m done.
Is fearing Jaws will eat me when I go swimming in the ocean a rational fear? No.
Is fearing pain itself real? Yes.
And I live with that fear every minute of every day.
If you would like to learn more about my disease and journey, please visit my page here, where you can also help support me. Thank you.