Five
I am wake in the middle of the night grieving. My ostomy bag wakes me up and pain keeps me up. Pain leads to feelings every part of my body. I feel the tubes in my abdomen, the ostomy in my gut, the countless surgery scars. I feel saddened all over.
EDS gave me global dysmotility. Dysmotility gave me a proctocolectomy and feeding tubes. Surgery removed my colon. My removed colon left room for my organs to move. My uterus has fallen backward and birth control is suppose to help with the pain. Birth control makes me depressed and hungry, two things I can’t control in my illness.
Wanting to move and needing to eat take me out at the knees. I shower, dress, put on new makeup. I leave the house, I go on dates, I adventure past my limits and I am undone. I eat and I cry. I walk and I cry. I use my feeding tube and I cry. I get approved for two custom wheelchairs and I cry.
I’m awake in the middle of the night trying to find the words to explain chronic illness. How can I make you understand? Picture this: you wake up with the flu, call in sick from work, fight for a sick visit at your doctor, get prescribed medication that heals you and also hurts you, you rest for a few days and you’re well again. Except in my story, I went into isolation in 2020 to avoid getting COVID-19 and 16 months later I was dying anyway. I woke up sick and will never get better. No matter how many appointments or pills.
I think about dying and I cry. I realize saving for retirement is a wet dream I can’t have because I won’t live that long and I don’t sleep. I don’t take out credit card because I don’t think I’ll live long enough to pay them off. I give my money away and hope life will be added to my account.
I think about living and cry. Think about how many yoga classes I’ve missed, trips ruined or not taken, weddings un-RSVPed to. A trip to the Pacific Ocean last year almost killed me, had to be medically transported to Cleveland with a potassium of 2.5. Trying to live and laugh and love is dangerous for me. I stay away.
I drink my coffee and I cry. I want to sleep. I want to be comfortable, comforted, comforting. I want to be tall and strong. I want to dance and run. I want to fight and drive. I want to breathe and see. I want everything and refuse to accept not having it.
The only person I ask permission from is myself. I say, “cry it out.” I say, “you need rest.” I say, “it’s okay to not be okay.” I hear the wind rustle the curtain and hear myself refuse my own help. I cry into my coffee at 4:30am. I want to sleep and I cannot. I will not. Not when it hurts. Not when eating hurts. Not when breathing hurts and holding hurts and sitting hurts and laying hurts.
I’m waiting to hear if I’ve been accepted into NYU Langone’s EDS clinic. I tell them about my pain, my past, my progress. “It hurts to live. Please help me.” I cry. I’m googling public infrared saunas and light therapy. I’m doing PT. I am not deconditioned, I am dying. I am dying while trying not to die.
My hands swell as I type this. I see my veins and red purple skin. I feel shaking in my muscles and watch my tremors. Showering standing is life threatening but countless drugs are not. I sold my single speed, gave away my books, got rid of all the art. I don’t decorate but I accumulate. I perseverate my life away to be the one in control. I give up my body, blood, and soul.
