Chronically Speaking: An Essay on Chronic Illness

The golden hour sun peeks through big hospital windows, where the Rockies peak behind the tall of the city. Field trips to St. Joseph’s for specialists are the only opportunity to see a different view, even momentarily. Crepe paper hopes used to hold me together in the sea of light in my living room. Now, a wheelchair whisks me to and fro, down the hall and back to my room. MRI’s and Echo’s and EKG’s on special days. Weights, BP’s, O2’s, blood draws, copious medications, and NG tube feeds with only hours between. Here I’ve waited. An expected two to four weeks has become six, seven, eight. 

Some days, I am nauseous with hope. Others, my anxiety is so sharp it cuts into my pink inner cheeks, exposing a scratch of a bleed. Some days, I sleep for hours on end plus naps. Others, I am woken up by the beeping of machines or nagging pain at ungodly hours. The source of my hope has surely been exfoliated from the folds of my head and heart. I remember the nights when the insomnia of hopeless-feeling hypoglycemia kept me up and bradycardic.  

Each day, I inhale searows of patience, as every day is waiting. For communication between specialists, referrals, and test scheduling- each its own view of eternity. But, for once in my life, tomorrow marks one week of my diagnosis, of me no longer being a medical mystery. This idea that I am not ‘crazy,’ not dramatic, feels almost blasphemous. But it's true. There are names and treatments and people who understand the experience of these illnesses. There are words doctors will comprehend: their care can finally transpose into my healing. 

People might imagine a new diagnosis as a scwraling of a foreign language on a sticky note; as a heart-stopping moment where grave news is explained. But these conditions, they are old friends I’ve always known. I remember the days we’ve spent together over a decade. These diagnoses have accompanied me through life, landing me in ERs unannounced, whisking me out of class early, and haunting me at every concert I’ve attended. Their symptoms, stick to me like bandaids all day; poking out of my pockets; and calling my every move in life. My breath slows just thinking about how beautifully rare it is to be understood.