When I sleep tonight, curled up in bed, wracked with pain, weak and defeated, I will huddle under a blanket of Death. I am lucky in this present, that there are several layers between me and Death so its scratchy coldness does not rub abrasively against my skin tormenting my dreams with its false intimacy. But in the early morning hours, when my subconscious is untethered I sometimes hear Death whispering sweet nothings, beckoning me elsewhere. And one day I fear I will wake swaddled in Death, too weak to unwrap myself.
Death is such a distant prospect for most people. It is an idea, an imagined place, a remote destination. I think it must be hard for healthy folk to understand what it is to be stalked relentlessly by Death. To know that in the moments when you have not heard from it, you are being watched, chased from afar. And then the distance closes and Death becomes bolder, aggressive, and ever present.
We do not speak of it often; we don’t think you will believe us. But we feel it, the membrane of protection between us and Death is woefully thin. Sometimes it thickens like scar tissue on leathered skin, but mostly it is a miniscule layer that is permeated by tormenting forces – virus upon virus, bacterial infections, excruciating pain signals, cognitive dysfunction, spasming muscles, and neural symptoms – and sometimes all at once.
Today we lost a CFS warrior, a bright star, a creative mind, an intuitive soul. I do not know yet if she died from our illness or complications from it, but either way we all know it will not be classified as caused by CFS or ME.
She has reinforced my belief that we must not go quietly into the night. That we should give voice to the truth, that Death is ever present, that for those of us who are very ill, we visit with Death often, sometimes stoically fending it off, other times doing our best to just ignore it. Sometimes we even manage to put a little distance between us, but in quiet moments of joy, we remember Death will come hurtling back just as soon as we stop being careful.
So for those skeptics who torment us, you cannot die of hypochondria, perhaps you need to challenge your belief system. For the scientists who debate and play political games, we do not give a shit which one of you is right, all we care about is trying to have a future that doesn’t involve sleeping with Death every day. And for sanctimonious, self satisfied students who take joy in finding fault in the work of others, you have every right to make a point, but you do not need to be vindictive to do it. I want the truth, I don’t want a fairytale, I’m a big girl, for f*%k’s sake I battle Death every day, but don’t be an asshole when we are all slowly dying.