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.
