Your Results May Vary – my blog about living with CFS

When I was a little girl, I loved Lewis Carroll’s Alice books. I was particularly captivated by Through the Looking Glass. I wanted, more than anything in the world, to travel through a mirror (or perhaps the back of a wardrobe) into another world. I would lean in close to the glass of the bathroom mirror, my nose just inches away from the glass, my breath fogging it up, and look hard. There! Was that a little movement around the corner? A shimmer? A shift? What wonders would there be in a back-to-front nonsense world?  I so longed to find out.

As an adult, I recently reread the Alice books and I was struck by how uncomfortable the shifted reality of Wonderland was. Alice struggles with the physics of this new world, where in order to travel anywhere, one must move away from the thing one wants to close the distance on. None of the rules she’s spent her short lifetime learning apply in this new reality. It’s fun to visit this topsy-turvy world with Alice, from the comfort of our chairs, but it’s also a relief when Alice is returned to the “real” world, the world that makes sense. Being disabled, I realized, is like being stranded in Wonderland and, honestly, there’s nothing fun about it.

In May it’ll be the fifth anniversary of my collapse, the month that changed my life forever. For most of the time since then, I lived as though I was going to “get back” to a “normal life”. I was encouraged in this thinking by my doctors, by my parents, by just about everyone. It took years for me to get diagnosed with CFS/ME (and yes, trollers, I do know that CFS/ME is an unsatisfactory diagnosis, a last ditch, a junk drawer, that it may not be one disease at all but simply an “until a better diagnosis comes along” place to put those of us whose ill-health doesn’t seem to fall neatly into any other category). During the first three of the last five years (and even longer than that if you count the period before my collapse, when I was still functional but struggling), while I was being tested and treated for other things, the standard language of expectation was “six months”. In six months I’d be better. In six months in six months in six months. My most-used phrase was “when I’m well”.  I was thinking like a healthy person, one whose illness was a temporary status, a blip, a pause until business as usual resumed. But just this year it’s dawned on me – it might not be possible to “go back”. I might not be one of those outliers who has a “complete recovery”. That I could no longer think of my life as being on hold. For better or worse this thing that I’m in RIGHT NOW is my life and I have to start living it. Like it or not, I’m stuck in this new reality and if I’m going to live at all I have to start getting used to the new physics, the new rules.

When I was in film school, I was particularly inspired by the Linda Fiorentino movie, The Last Seduction. In that movie Fiorentino plays a con artist, Bridget Gregory.  In one of the earliest scenes in the film, Gregory writes to her husband in mirror script. Her character’s ability to do this, to confront problems from back-to-front, defines her. She’s always several steps of everyone else because she never reads a situation left to right. It’s a great lesson for a writer, to remember to look at things from a different angle. I used to confront myself with this all the time – what’s the back-to-front way of examining this problem, this story I’m writing? What am I missing by looking at things too straightforwardly? Now that I’m disabled, this type of thinking is more critical than ever. In order to not only survive but to thrive, I *must* challenge my assumptions, I must let go of anything I’ve learned about what works and what doesn’t work, how to address friendships, love, family, career. It’s a page one rewrite – I must learn to redefine what the word “living” means because existing day to day while waiting for something to change isn’t working for me.

I guess this first blog post is as much of a statement of purpose as anything. It’s my way of announcing to myself and the world that I’m recalibrating in order to respond to what is, rather than what I hope or wish or think or want, rather than to what “should” be. I’m making it up as I go along, people. Which, if we’re honest, is what we are all doing. Expectations are an illusion. None of us know what tomorrow will bring. In that regard, my life is no different than anyone else’s. I simply am less able to afford the illusion that I can know what to expect out of my tomorrow. Watch this space. It might be interesting.