"I'd love a 5 minute spoken word poem that said 'I believe you' over and over."
There are the dark, ugly things inside. The things people don't talk about. The things I don't talk about because it feels like this soft, fragile outer shell and I am afraid even one wrong move will crack its gentle interior.
I used to write openly and perhaps what some would define as bravely about my struggle with chronic illness. But the bold days of undiagnosed (where I had to write to give this thing a voice and the only other option was to be suffocated by it) have faded into these days of knowing exactly what this monster is lurking inside your body but being unable to fight it because it is both in you and of you, and I of it.
Some days I am wildly accepting of this truth in my life. I accept that my illness has created this order, even if it looks like chaos to me, and that rather than rage against what I cannot change I must find the courage to embrace it. I accept that some parts of my body look different than others, the same way leaves on the trees are different shades of green and yellow and red, and yet we do not yell at the tree for having such colors. There are days when I can settle in with my breath, in this body, when I can whisper to every single cell in my being, "Show me what you have to teach me today."
Those are my becoming days. It is on those days I feel strong, feel like I am doing this whole life with chronic illness thing right.
But there is no guidebook on living life with a chronic, genetic illness that is both in you and of you and at times feels like it has it's hands around your throat. And I am not always accepting of this reality.
There are days when the anger inside me bubbles up, and I cannot contain its strength. I am angry at this body, at myself for not protecting myself from this unknown invasion, at my emotions for daring to feel the heavy brunt of this load, at the world around me and the sun for daring to shine and people for daring to smile and my friends for talking about skating on frozen ponds and crushes while I am confined to life inside this body.
I suffer from the need to be near to people, find myself clinging to their warmth and security when I feel I cannot muster up my own. The ones closest to me, I turn their bodies into blankets and pray it will keep me from this oncoming storm.
And I am afraid. I am so afraid and I wonder how it is that I can be afraid of myself. There are times in the night when I wake, my breath caught in my throat, unable to think or make a noise, unable to escape from living inside my head. The night is worse, when panic runs wild and I cannot distract myself with the regularities of the day.
There is sadness too, the kind that makes me want to stay in bed all day with the covers over my head. Because my life has changed drastically and sometimes I am unable to cope with everything I have lost. I at times feel hysterical (though according to Eve Ensler, "Hysteria is a word to make women feel insane for knowing what they know.")
It is a world I don't expect anyone to understand, one I don't even understand myself. And yet I feel as though I have to defend my right to live in it. With no one around me understanding the depths of this, I must scream out my own feelings and fight my own battles and find courage to keep getting back up and daring to live life in a world that has repeatedly assaulted me over and over again even when I feel there is no courage, and at times I feel too small an animal to handle these tasks.
It is lonely, in this neck of the woods.
When I heard these words from the poet Andrea Gibson this morning, tears pricked my eyes. How wonderful it is to know that another soul on this planet has felt, and desires, the same things I have and do. They are the words I long to hear, as my hands shake and the emotions cover and I am gasping for air and sense in this maddening world. And as I crave them deeply, I say them back to a world that has not given me them as many times as it should have: "I believe you, I believe you, I believe you."