There is a certain routine of chronic illness. It’s taking a handful of pills at 8 am, another at noon, the final handful at 8 pm. It’s taking a nap after lunch because eating tires me out. It’s sitting in a recliner for two hours every four weeks for an infusion of drugs that destroy my immune system.
It’s endless days in the hospital and that routine of vitals every shift change, daily visits from physio and OT and more pills and IVs. It’s wheeling myself downstairs for a coffee and cigarette so I can pretend for twenty minutes that I’m not trapped in a hospital bed.
It’s days and weeks in bed, watching the same tv shows and reading the same books mover and over because it’s the only thing I can count on for comfort.
It’s driving four hours to see my neurologist every few months, routine MRIs and bloodwork and all the usual jokes.
It’s my veins scarred from every one of those IVs. It’s searching vainly for the new best spot to get poked.
But then, it’s also waking up one day and I can’t walk. It’s my throat closing up and collapsing to the kitchen floor and trying to call 911 before I lose my voice.
It’s endless hours in the ER while I wait for test results and if I’m going to be admitted and shit, I forgot my phone charger.
It’s trying to explain to my kids that I have an incurable, degenerative disease, and I’m going to need some extra help.
It’s smashing a glass because my hand stopped working for a second and weeping while my husband sweeps it up.
It’s wondering if my legs are going to start working again or if I’m going to need help with nearly every aspect of my life forever.
It’s planning my life around wheelchair accessible buildings.
It’s predictable and unpredictable. It’s crying in frustration and whooping in joy when I finally get my stupid foot on top of the stupid step I’ve been trying to conquer for fucking weeks.