Pathos, Pain, and Percentages (Or, My Masochistic Machismo)

I don't know how the cat knows. Maybe I start to smell weird. Maybe he's as good at reading my face as my grandmama is. Whatever cat hoodoo he's using to divine my pain level, it's incredibly accurate. He adds his weight to the heating pad. He licks my worst ankle. I am grateful for his attention.

To make a long story very short, I've condensed this summer's events into a numbered list:

1. I gave myself pancreatitis this summer because I stopped eating.

2. I stopped eating because of a particularly nasty flare of my Ulcerative Colitis.

3. The UC flare was caused by an urinary tract infection.

4. The doctor who found the UTI neglected to run a full blood panel and sent me home with pancreatitis to writhe on my couch with the most painful condition a human can stand for a full week before my mother forced me to go to a different ER.

Now that we're caught up, I need to tell you what the other not-incompetent ER doc told me, "I know you're in a lot of pain, but some people with Ulcerative Colitis present this way while flaring." If I had been able to draw a deep enough breath, I would have laughed in his face.

Just to make sure we're all on the same page, I will tell you what Ulcerative Colitis is. I will not discuss the more unpleasant symptoms. If you want to be thoroughly grossed out, google it. Ulcerative Colitis is an autoimmune disease which effects the colon, joints, eyes, and less frequently, the liver and skin.

What that means: my immune system is homicidal. It interprets the good bacteria and food inside my large intestine as an invasion force. So, like any strong, healthy immune system, it bombards the living shit out of the invader until the invader backs the fuck off. The problem is, I need food and bacteria to live. In its war on those things, it creates millions of open sores along the full length of my intestine. In addition to this joyous circumstance, my super-strong-yet-entirely-insane immune system also attacks my joints and causes my eyes to swell. Some days I can barely wear shoes and can't manage my contacts at all.

Now that we all understand the science, let me tell you what it feels like:

Take an empty sausage casing. Stick a million razor blades through it. Twist.

Ask your best friend to jump up and down on your ankles.

Poke yourself in the eye.

Better yet:Acquire road rash. Scrub road rash with steel wool. Then give yourself epic food poisoning.

Now you understand what it's like every time I eat during a flare.

And that's all pain I can put into words. The pain of pancreatitis isn't like that. It is unspeakable. It is death in your belly. It is boiling alive in acid. It eats you up.

The problem with my face is that it's too expressive. My instructors always know when I am thinking something. If I know I am going to make a face, I can control it. I walk around most of the time pretending it doesn't hurt, that I'm just an average 27 year old woman. I actively think, "When you hurt, you show the tension in your eyes first. Smiling creates similar lines. Smile and people won't notice." This works out most of the time. It takes a discerning eye to see the pain on my face. My grandmama can always see it. My friend Kara, with her artist's eye, can see it sometimes too.

I go through a lot of trouble to carry on as if things are normal. Because I don't want to talk about what it's really like. Because I want to win. Because I want to understand myself as someone who is strong no matter what. Because I despise weakness--most of all, in myself.

Tuesday my doctor asked me what percentage of the time I spend in some kind of pain when I'm flaring. It never occurred to me to consider it in those terms. But there was a time before the pain, when I never hurt at all. Now the pain is a person who lives inside my body. I am not without her, and she is never far from me.When I asked my doctor what I could do to help my left ankle, which is by far the worst of my joints, she told me that my colon and my joints are "wound up tight like a ball of snakes." My tattoo nearly tingled, because those snakes are just going to keep eating each other up until I die. And I deceived myself if I ever thought any different. I just need to smile through it, give myself a chance to value my own strength, keep my life stress free, and eat plenty of calories--even when every bite becomes a sacrificial gesture on behalf of my daughters. Because food is not my enemy. Anorexia is. And right now, she's eating me alive.

I can't let her win. I can't retreat to my heating pad and sleep through the flare. I must stay up to stay alive.