I wake up and I can feel the familiar drip down my throat. I remember this, I remember it from January, it feels the same just not as rapid. I swallow and decide to follow doctor’s orders. It’s nothing, you’re fine. I get up and trudge to the door to take the dogs out. I step hard as I try to keep hold of them. I feel that familiar liquid slide out of my nose. Ugh. Ignore it. It’s nothing. The doctor, the nurse, they said it was nothing. Keep walking. I step again as I yawn. The yawn is all it takes to force the liquid out of my nose. I’m leaking CSF onto my hand now. It’s allergies. They told me it was allergies. Actually they told me it was “snots” in a text message with a smiley face. I feel patronized and ignored. Perhaps they see my sense of humor as an invitation to ignore me. I feel confused.
I feel angry. This is not allergies. My brain is losing the fluid that cushions it. The repairs didn’t work.
Please listen to me. I call and I beg them. Please, take me seriously, these are not the protestations of a hypochondriac. This is real.
I yawn again, more liquid pushes out. The tension and pressure of the yawn causes pain. I’m inside now. I cover myself in pain sprays, menthol and warming balm. I crawl back into bed. The phone rings as the medicines kick in and take me away. I wake up to a voicemail from the doctor’s office.
They’ve listened to me! They have answers or at very least they are acknowledging that I need their help. I have felt so helpless.
I gently push play and press the phone hard against my working ear. I hear the chipper voice of an NP.
“I just wanted to talk with you directly about your symptoms and the leak and how most of your symptoms are unrelated.”
The message goes on.
Translation: I’m calling to tell you that I don’t believe you. I am calling to tell you that I refuse to hear you. I am calling to tell you that I will not acknowledge you. I am calling to tell you that I am the expert, you are the layperson, and you don’t know. I am calling to tell you that no matter your protestations we refuse to see you as you beg to be seen.
They call me young. They call me dramatic. The women in particular act like I need to grow up. They erase my pain. They erase my struggle. They erase the repeat surgeries and make me feel hollow like some ghost that is haunting the wrong people with the wrong unfinished business. They make it seem like my questions are irrational, as though I am making this up. They make me feel helpless. They render me invisible.
I have a message for them: only I can advocate for my life. Only I can feel my pain and I refuse to be erased because my problems are inconvenient for you. Hear me. Honor me and trust that I am not a paranoid patient and recognize me. Help me or I will find someone who will.
I recoil in anger, the anger not helping my pain. I pull the blankets over my face, I wrap ice packs around my head and I force myself to sleep, hoping that when I wake up I can be seen, that I will not be dismissed and I will cease to be invisible.
Peace and love,