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.


5 thoughts on “Your Results May Vary – my blog about living with CFS

  1. In 2002 I started a Master of Teaching (that I never finished, lasted 1 semester) where a girl I was friends with was diagnosed with CFS. She mentioned it once and I went out of my way after that to get her lecture notes and help her out when she couldn’t come to class. One of the lecturers made a flippant remark about how it was a bullshit illness and intimated that this girl was taking everyone for a ride. I was horrified at his attitude (PhD may make you smart but not necessarily human) and I basically took the view you describe above. It may be a ‘parking’ diagnosis. We don’t quite know what’s going on. But something is. Not everything is Cancer/heart disease/diabetes (big ticket diagnosable illnesses in other words). I’d rather listen to her about what is going on with her and take my cues from that, including helping where I can.

    I’ve had both a similar ‘bullshit illness’ – irritable bowel syndrome, and a proper big ticket illness (cancer). The cancer was actually easier to deal with and recover from and move on from. The IBS outed over 12 years ago and while lifestyle changes usually let me have it under control, I will live with it for the rest of my life. Well, the cancer too, because my thyroid had to come out, but I pop a tablet each morning and that is it. I don’t need to think about it. It disrupted my life a few years ago but it hasn’t changed my life.

    What I dislike about modern Western medicine is exactly that approach of diagnose, treat, cure, no effects left. Anything else confounds the medical profession. But it’s not how our bodies work and not what we need to hear when it comes to having to adjust to ‘living with’ something, rather than having this idea in our heads that we can be cured and will revert to a prior state unchanged. I’m glad that I got IBS. The changes I’ve made to how I live mean that biologically I’m about 5-10 years younger than my actual age. I have to live healthy and follow a careful regime or my body punishes me quickly. It makes a single glass of wine a treat the way most people who guzzle a whole bottle probably never enjoy it. It makes small indulgences seem like the wonder that they are. Special. Treats. Exceptions. There is, in my view, no ‘normal’ state of being (in which we are all alike) that lets us treat our bodies like junk yards that we can push to extremes without paying a price. You are more aware of it than most. Listen to it. Adjust. Seek advice. Read. Find out what’s right for you. Find ways to live with it, work with it, rather than against it, and you find your own flow. Unique. Yours. Full of small pleasures and pretty bloody huge wonders!

    1. Thanks, Tanja, for your wonderful comment! I hear what you are saying and agree with you. Yes, I’m figuring this out but I recently realized something amazing: I wouldn’t take this back. I’m deeper & stronger, more resilient & powerful, because of this illness. I have better, more loving relationships with my friends & family. I laugh more. I don’t take myself so seriously. I may not get “back” to where I was, I may never be physically normal or healthy, but I still have a lot to offer the world. It’s going to take a little creativity to get there, but, luckily, I am a smart, resourceful, creative person. I can do this thing! 🙂

  2. Excellent post, thank you. I Especially like “recalibrating in order to respond to what is.” For me it this has applied several times in my life, not so much due to health issues as to life events. Now, it’s about having an aging body that I can’t take for granted as I did for 65+ years, having to live with pain, as they say, accept physical limitations and so on. More power to you in living the life you have. I agree with Jompoi, inspirational!

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