Last night, I read a short story called, The Spoon Theory by Christine Miserandino. Although it was originally written as a way to describe living with lupus to one of her healthy friends, it is just as applicable for anyone living with a chronic medical condition who finds themselves lacking the words to describe what daily life is like. To be honest, this piece actually brought me to tears. The beauty of this story is in it's simplicity; those living with serious medical conditions have to budget so much more than just money. There is never enough of anything so we are forced to go through life in "disaster mode" full-time.
Symptoms chew away at our physical resources, excess medical expenses dissolve our assets, the lack of understanding from those who are healthy eats away at our social support systems. Every single accomplishment, no matter how small, derives from extensive planning and preparation because despite our best efforts to stretch our limited resources to the fullest, we won't ever be able to accomplish everything we set out to do each day. Activities the healthy take for granted require Herculean efforts from those who are ill and so the battles we wage against the challenges of daily living go unnoticed.
I consider myself to be locked somewhere between the worlds of the sick and healthy. Before I got my pump, every aspect of my daily existence came with a cost. I had to decide whether to eat or ameliorate my pain. I had to decide whether to go out to lunch with my colleagues or cover the co-pay on my prescriptions. I had to decide whether I would take work home with me in the evening or go to work the next day. I never seemed to have enough of anything required to cover the most basic life necessities. Going without things considered by most to be "bare bones minimums", meant that I eventually grew accustomed to a life of deprivation.
Even after I got better, I still couldn't bring myself to emerge completely from "disaster mode". I plan my experiments at least a full week in advance (back-up plans included), I keep all of my workspaces in a highly organized state (can find anything I have in under 10 seconds), and before even coming to Madison, I had a list of concerns a mile long which centered around issues such as whether I could actually afford to move here and how much medical insurance should I purchase until UW's policy kicked in.
I chose my current residence on the basis of economics and proximity to the UW Hospital. I never buy anything that hasn't been on a list for at least a week and if I can't eat, cleanse with, or use an item for work, I don't buy it. In the event of a sudden financial crisis (i.e., surprise medical bills), I know what foods to slash from my grocery list and how to my juggle accounts in order to keep all the bills covered. I could grab every item I can't imagine living without in under 30 seconds if a tornado siren ever woke me in the middle of the night. I even have supplies so that in the event that I get really sick (to the point that I can't keep anything down) and can't get medical care (used to happen a lot), I can sustain my own life for a few weeks (once, I actually had to do this).
When it comes to that last item, why would I ever need to prepare for such a thing? Let me put it this way, you'd be surprised how many ER docs label chronic pain patients as drug seekers and turn them away. Since there aren't any tests to differentiate between addicts and everyone else, mistakes happen and at some point, every chronic pain patient has paid a steep price for it. You see where I'm going with this. I got so used to anticipating catastrophes, that I'm having trouble turning it off. I don't want to become completely carefree and ignorant of the risks around every corner-- this could be a very useful skill to have someday if I'm ever fortunate enough to have kids-- but I know I'm investing (wasting) a lot of time and energy that could otherwise go towards more productive endeavors. The evidence of my anxiety is everywhere... I keep everything, from my bench in the lab to the clothes in my closet at home, in a highly ordered state. My smart phone is crammed with lists, appointments and research documents (backups if my laptop ever dies). I keep backups of backups elsewhere and my computer is locked up like Ft. Knox.
I still document everything but I'm not as bad as I used to be. There was one lab I worked in where I trusted people so little, I kept a digital recorder running in my pocket all day long (there is no need here). You're probably laughing but trust me, I had a darned good reason to do it then! The point is that our behavior is shaped by our experiences. I'm gradually learning to loosen up & let go but it's a long, slow process. Maybe by the time I graduate, I will have gained much more than just a PhD... I'll have a sense of normality to go with it.
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