Courage is resistance to fear, mastery of fear, not absence of fear
Marge: Everybody’s afraid of something.
Homer: [smugly] Not everybody.
Marge: Sock puppets.
Homer: [shrieks in terror] Where? Where?
A friend recently remarked on how surprisingly blasé I seemed about the possibility of getting worse. “You could become seriously unwell again – and you don’t seem concerned at all!” The fact is, I am always concerned about the prospect of relapse. The thought that one day I could wake up and be totally paralysed is a permanent backdrop in my mind, and it is utterly terrifying.
A life with ME/CFS is always unpredictable. So although I could overexert myself one day, and find myself permanently worsened the next, as my friend was suggesting, I could just as likely do nothing different and still find myself experiencing a similar setback. For myself at least, relapses make no sense, and there is no logical progression to my symptoms (although I’m sure a biological explanation will be found by researchers one day).
It is the lot of a spoonie to somehow live with this uncertainty, and the fear that goes with it. For as blasé as I may appear about my debilitating symptoms, I am still afraid of them. Every day, I fear that I will not be able to get out of bed. As often as it occurs, I still fear I will collapse on my floor at home and be unable to move. Or worse, that I will not be able to make the few steps from the car to the shop, and end up paralysed on the footpath, with onlookers gawking.
You’d think that this would have happened enough for me to not fear it, but for years my nightmares revolved around collapsing in a heap in the supermarket. And not a day goes past where I don’t shut my eyes and feel that I am trapped in bed again, unable to speak, eat, or live.
Yet, I still get up every day. I still leave the house (now under supervision), I still shuffle my feet, talk and type, even though the exertion brings me to tears. I know that every time I perform an action, it may be the last time I do it. And somehow, I grapple that fear, I live with it as a constant companion and just keep going.
Just because someone with a chronic illness appears at peace with their symptoms, it does not mean they are not afraid. We have fear, but we live with it and through it.