So I finally got the message my amazing MS nurse had patiently been drumming into my head and accepted that “you must rest, completely” meant “do nothing”. I’ve been pretty good the last few days but yesterday I got to that point where the crutches, the rowing machine, the medicine ball called. The little voice worked its way back into my brain; “you need to fight this Cat, you need to get up and do something, you can’t just lie there”. I managed to resist, Battlestar Galactica on Netflix helped, but it got me thinking about the language of illness.
It took me so long to accept that word disabled, and I used so much energy trying to maintain the illusion that I’m not. When MS wants me to rest is usually when I do exactly the opposite. It seems pretty clear that I did really know that first relapse was working itself up, because I went into a big kick on the rowing machine, pushing myself really hard everyday. Work was incredibly stressful, I was feeling sicker and sicker, and working out gave me a sense of control over my destiny. Illusory as it turned out but at the time it felt right.
But the language of illness in the era of “heroic achievements” and hyper-inflation of every small thing we do doesn’t help. We are supposed to be fighters, to battle our illness, to be brave characters in some superhuman saga of triumph against adversity. Just as in our work we are meant to be ever better, ever greater. Our “impact” must be “international”, our practice must be “best” and not only that must be “shared” with all and sundry too. And where does this leave us? With PhD students who publish papers before they have undertaken any research, with lecturers who struggle against ever more ridiculous targets and workloads, with researchers chasing desperately any and all funding, sitting into the wee small hours trying to finish that paper so they can fill in their forms and justify themselves in terms that any sane, measured consideration would see are simply ludicrous.
Of course these inclinations to the heroic have been around a long time, after all much easier to face the prospect of life’s hardships when you have fooled yourself into thinking that they will, must, submit to your will, your (superhuman) abilities. It’s only as we age and go through more and more of these challenges that we begin to see through the myths, begin to understand that our doctrine of self-belief and self-help is just a contemporary version of religion. The religion of the (public – of course) heroic self fills in where once traditional religious myths satisfied. We are “too smart” to believe in the fates or gods directing the course of our lives. We believe instead, apparently rationally, that *we* direct the course of lives. It’s only as we age that we begin to suspect that this myth is as baseless as that of the bones on the temple floor to guide us, or the spirits in the sky. I can’t fight my way through this, I need to submit to it. It’s time to let my body rest and heal. It’s time to let my mind face the fears that I have fought so hard to ignore all these years. There’s such a relief in entertaining the idea that this is not fully or even largely, in my control, but that I can choose how I feel about this.
I choose not to feel guilty that I am not fighting this. I choose not to feel guilty that I cannot play the heroic game in my illness, or my work, any more. I choose to speak out for those of us who have reached this place, to try and call out to those not yet here and say “This will come to you to one day, think about what kind of world you want to live in when it happens, and make that world a reality now.” The cult of the hero has gone too far; media, institutions, politicians have whipped us up into a totally unsustainable and truly in-human state of being. It’s doing to our psyches what we have been (not un-relatedly) doing to our environment these last couple of hundreds years. It’s time to change the story. We need a new myth, a new belief system. We need a “rest”.