Just waiting while time slides by like oil and stretches in sticky ropes like taffy, waiting while it pours out like water and then freezes in bright crystalline sharpness. Waiting is part of every life, but especially the chronic illness life. Chronic illness is expensive. It takes and takes… friendships, money, physical senses and abilities, the very thoughts in your head. Eventually, as someone else pointed out, we have so little left that the system cruelly demands the one thing we do have . . . time. It demands we spend hours fighting for accessible transportation because we can’t drive, interminable stretches on the phone on hold, months trialing one medication before insurance companies will allow a trial of the more expensive, effective one. It takes time from off our life threads like something out of myth, spinning, measuring. Snipping.
Time is, strangely, something those with chronic illnesses learn to value very quickly. The hours when you feel good are so few and far between, whether that is a good mental place or just not throwing up for a stretch. Chronic illnesses can last a lifetime, but at some point during the tours of hospital corridors, weaving as incomprehensibly as Red Riding Hood’s forest path, it becomes clear that not all lifetimes are the same length. It’s not a fairy tale world of soap-bubble shimmers and sparkles; it’s a fairy tale of dark forests and beasts that galumph out of trees to eat you without warning. The wolves get some before Grannie’s house, after all.
And so the rest of the world chuckles on blithely, in deliberate denial of that which the rest of us forcibly know. And I stare desperately at the phone, at my email programs, at clocks counting down to one medication and up on how long I’ve survived on another. I will bargain with my time for the things I do not have, because I have nothing else to bargain with now. What will you pay for the information from a doctor’s office? A sunny afternoon? Or perhaps you shall barter the memory of a spring morning for the paperwork your insurance company requires. I wait for information from one doctor’s office to trickle in, so I can pass it to another and then branch off to a pharmacy. And when that pharmacy is out of the medication, I use my time again, calling up another pharmacy and then a third, hunting for a life-saving elixir.
It’s not going to work, you want to say to the character in the fairy tale. It never works. You’ll sign a deal with a jovial merchant or a grinning granny, a seemingly sweet bargain that only later turns out to be a sour, rotten to the core and stinking. Don’t do it.
And over it all hangs the pall of waiting, just waiting for something to be approved or denied, for a good day to come again or a bad time to stop, for a friend to visit or a family member to accept. Maybe it is only a fairy-tale if the characters don’t know what is going to happen. What is the genre, if Red Riding Hood prances down that path, knowing that the wolf is there yet going anyway, counting as she skips, the steps like minutes?
I don’t know right now. But I do know I’ll have plenty of time to think about it, while I wait.