Calculating the Odds

Suppose you got nipped by a neuro-degenerative disease and you spent a year and a bit getting used to your prognosis, only to find out you had wrapped your head around the wrong numbers?  Say, you thought you had one lesion on your central nervous system, and you actually had two.  Or, that you thought your probability of going from CIS on to full-blown MS was, say, 15%, but it was really 50% ?  Take note that your prognosis has not actually changed, you just think it has.  Never mind the fact that you have gone 15 months now without a second attack, or that your odds will drop to 15% when you go four more years without incident, or that your CSF showed no active demyelination at the time.  Important things, like these and the faith of your excellent, well-informed neurologist, could be forgotten in a moment of shock and wallowing.
I don’t know what you would do in this situation, but I unraveled a bit.  In preparation for this meeting with my neurologist yesterday, I’ve been doing whatever I can to de-stress in healthy ways.  I’ve been going to bootcamp more, I started running again, I’ve been doing yoga every day, trying meditation every night, walking outside, being present, being grateful, blah, blah, blah, blah.  I still had the nervous sweats in the office yesterday.  And nervous laughter.  And yet…nothing has changed.  I’m still not taking any disease-modify therapies.  I got sent away with this advice:  “Live.  Go out.  Do what you want to do,” and an appointment for a year from now.
 So I collected my kids, texted my husband, and brought them home to the first real day of spring.  A 52 degree F day, with rivers of sand and snowmelt running down the street, my kids put on shorts and boots and dragged out their wagon and bubble mowers.  They slogged through the five inches of snow in the backyard on some epic journey through the Cretaceous while I drank a beer in the sun on my back step.
This morning I practiced saying “50%” aloud to my trainer and friend and still managed to stay for the rest of boot camp, grateful for the shin-splints that kept me from working myself to tears.  Rationally, I know nothing has changed.  The number could be 99% and we’re still talking about the probable outcome, based on other people.  But, maybe I didn’t feel like being rational today after my simple admission.  Maybe I felt like going grocery shopping and buying a lip balm, a world music CD and a two-pound bag of popcorn kernels.  Maybe I thought going to the Dollar Store to buy diversions for the kids for the upcoming road-trip would be a good idea.
I used to play a game whenever I was in a crowded elevator to distract myself from my claustrophobia.  I would look around at all the other passengers and try to figure out who would be the one to break first if the elevator broke down.  Who would be the leader?   Who would be the hysterical one we would have to smother with jackets to calm down?  Who would be indifferent?  Who would be McGyver? (Me.  Obviously.)  I got out of my car outside the Dollar Store and there were a handful of people walking in and I immediately realized that in my state, I would be the weak link among them.  I would be the one who fell down, weeping.  In the group consisting of a frail, elderly couple, a mom with babe in arms, and the construction worker, I was the one likely to look at little packs of Sponge Bob erasers and say “OMG! I want a dozen!”  Don’t mistake that for living.
 So, with that realization, I’m over my despair.  I will not be the weak link.  I refuse. Not this trip.  I’m aware that the probability of what could happen may surge back the next time I go for a run, or sit down and see the sun on my daughter’s hair, or the toothless grin of my son.  My husband maintains that bad things happen to people all the time and that my odds are just a bit greater than those of the average bear, or something like that.  So when it happens that you see me glazed over and mumbling “fifty percent”, give me a minute and I’ll be back to following my doctor’s advice to the letter, living, going out, and doing what I want.
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 So.  I was all ready to put this out there, when I stopped to take a breath and gather up my daughter from preschool.  It turned out to be that day, that one day in spring where it climbs from 28 degrees to 52 in half a day, and all the world wakes up.  This is my favorite day of the year and this year’s is flagrant and amazing.  We spent the afternoon on the defrosted deck, reading princess books, picnicking, watching the cats explore the outdoors and doing our own reacquainting with the garden and the earth.  We took the wagon to the bus stop to collect my eldest and have been biking, snacking and foraging since.  Yes, tonight will be a picnic on the deck (if you call take-out from Pasqual’s a picnic, and I do.)  Yes, I felt so, so lucky to live where I do, to be this grateful for sunshine and new life.  Life goes on. We’re soaking it up.
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2 thoughts on “Calculating the Odds

  1. I’m sorry, that sucks hugely. It’s good to embrace the spring. Feel free to come over and mutter numbers whenever, and then we can move some mulch around.

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