By Katelyn O’Leary
“But I don’t want to go among mad people,” Alice remarked.
“Oh, you can’t help that,” said the Cat: “we’re all mad here. I’m mad. You’re mad.”
“How do you know I’m mad?” said Alice.
“You must be,” said the Cat, “or you wouldn’t have come here.”
-Lewis Carroll, Alice in Wonderland
We all go a little mad sometimes. But it doesn’t mean it’s ok.
It’s funny how the media portrays patients who suffer from debilitating disorders. They are always saintly, sweet, and they are “fighters.” They never get upset, they never show their pain, and they never make anyone feel small.
I think I’ve been trying to be that kind of patient for too long.
Two days ago I fell down a flight of stairs and I sat, semi-crumpled and didn’t move for fear of hurting myself further. I was in a lot of pain but I was glad. I felt as if I deserved it.
I like to think I’m a good person. Everyone does. We count our blessings and good deeds hoping those count to whoever is keeping score in the universe.
But our supposed goodness is tested time and time again, not through the good moments but through our worst. I always told myself I would never act on my rage.
There’s a debt chronic pain patients pay every day. They allocate a certain amount of energy to remain calm and even put on a good face. And when those emotional funds are depleted - we lose sight of who we really are.
I can’t blame a condition for how I act. How I treat people, known and unknown. There is always an answer to why we do the things we do. And for me? My disorder, this terrible terrible disease, has formed a black cauldron in my gut.
I let my fury, my fear of the future, the unknown and most of all - my carnal and animalistic RAGE seep into this cauldron of Black emotions. And when I am pushed or feeling threatened - I explode. The rage is like a monster, it consumes all in its wake. I will say things I would NEVER had said prior to my diagnosis.
But that’s still not an acceptable excuse.
I have so much anger and feelings of betrayal from my family. A lot of my extended family doesn’t understand (and it’s a rare disorder so I get it). My close family - while they love me and wish I was better, there are moments where I can see the disappointment in their eyes. The sadness of knowing I’m not “Katie” anymore.
“Katie” always laughed, joked, and fought for what was right. She tried so hard to follow her dreams and pursue even the hardest goals and she would leap and bound over them. “Katie” was athletic - she ran 4 miles 4 days a week. She was an ear of reason for her sisters and brothers and she was always available to her parents.
I don’t know how to be that person anymore.
I thought I was helping a member of my family by trying to protect her. And I failed her. And she failed me. When the anger consumes me, all I want to do is scream “YOU DON’T KNOW WHAT IT IS LIKE TO NEVER RUN. TO KNOW THE LIFE YOU FOUGHT FOR WAS TAKEN BY A GENETIC GAME OF CHANCE, 26 out of 200,000.”
I fail to recognize their own pain. And that doesn’t make me a good person: it makes me weak.
Most days I feel as if a bomb has exploded in my chest, and I’m looking around at my family and I’m desperate for help. I’m falling to the ground. They stare at me, puzzled by my pain, this invisible grenade turning my insides necrotic but leaving my skin and bones normal looking. And they don’t know what to do or say.
My family is full of good and loving people. But there is a great divide between me and several of them. And I let that anger well up inside me and I lash out. Sometimes so loud and so hard it’s as if my brain blacks it out and I don’t even remember what happened.
It has taken me a long time to be honest about myself and my own role in my illness: I’m failing. And my family suffers for it in two ways: for not being involved and seeing me for what I am, and for pushing buttons that they are used to pressing, resulting in my blackout rage.
How do I change that? I don’t know. But for right now all I can do is try and find a way back. To say I’m sorry. To say I love you. When you’re lost in the woods you follow your steps and the trail backwards. But how do you do that blind?