My brave children – both now young adults – have faced, and continue to face, a world of violent proteins from a very young age. What to many are innocent building blocks of life, to them are agents of threat.
My daughter recently heard news that pressed her back, that made her question, that brought her heart to the page so we could hear the cadence of her battle in her own words.
With her permission and with her hopes for furthering understanding of what it is to live – to live! – with a chronic illness …
by Winter Broadhurst
The stepping out of the bed. The stepping into the world, full of danger, full of harm. The people who stare. The people who ignore. The people who hate. The people who wish I would disappear. The world full of people, full of unknowns.
The due date is Sunday. Treatment is Thursday. No time to be normal. Must complete early. The due date is Sunday. Treatment is Thursday. Wish I could be normal. What is normal? Due date is Sunday. Treatment is Thursday. Professor applauds early submission. Professor wishes I spent the weekend on it. Their due date is Sunday. Mine is Thursday.
The mask on my face. Covering my mouth and nose. I still have eyes. Look at my eyes. Scared of a mask. Scared of beneath the mask. Scared of me. My fear is the Cheetos on your fingers. Watching where you touch. Death on your fingers. Death on the blue pen. Use the black pen. Mask on my face. Death on your fingers.
Drive home focus on lights, cars, music. Anything but the shot. Life or death in a needle. Don’t think about anaphylaxis. Think about March. March. March. March until March. Bloodwork in March. Answers in March. Hope in March. Deferred Hope in March. No Hope in March. Hopeless. No, think Hope in March. Deep breathe. Deep Breathe. Two more months.
Pull into parking lot. Think about homework. Must complete writing. Must do it before I feel awful. One. Step. At. A. Time. Up to the door. Darkness in building. Numbers on paper. Dates on paper. No one at home. No one in office. No shot today. No shot tomorrow. No shot on Saturday. No shot on Sunday. No shot on Monday. No shot on Tuesday. No shot on Wednesday. Shot on Thursday. Shot in a week. Only a week. Feels forever. Get into car. Try not to cry.
One more week looming. One week of pain. One week of people. One week of danger. One week of wondering. One week of masks. One week of death on fingers. One week of deadlines. One week of waiting. One week of Marching. One week. One. More. Week.
Next Thursday shot. Week after recovery. Week after shot. Marching until March. Marching until answers. Wondering if worth it. Wondering if possible. Marching until March. Marching until death. Won’t stop Marching. Won’t stop fighting. Treatment may stop. Marching won’t. Fight for my life. Treatment may stop. Fight for my life won’t, until it does. Marching forever.
Chronic is forever.
Do not reproduce without written permission.