Sometimes it’s okay
to write a poem and then
throw it away.
You don’t need to keep what kills you.
Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)
Sometimes it’s okay
to write a poem and then
throw it away.
You don’t need to keep what kills you.
okay can we just one last thing
spreading the idea that one is only triggered when having a full blown, system-shut-down panic attack is damaging and delegitimizing to people who have physiologically and emotionally different reactions to…
Great validating post on triggers. Speaking of which, I’ve been doing really well lately. I’ve been really happy with myself. I haven’t thought about cancer or Lynch Syndrome much for maybe a month now, and when I have, I’ve been able to let thoughts drift into my head, then let them go and move onto something else. And it’s been something I’ve instigated, like looking on the LS Facebook page, and then been able to stop thinking about easily. Until Sunday, when I answered the phone to a cancer charity who have been calling me every day for the past two weeks.
I had been avoiding answering the phone partly because I was worried about the conversation being a trigger. I finally answered it and the guy on the line asked me why I had previously agreed to donate to the charity, to which I replied “personal experience”. I was then pressed further – “someone close to you?” “Myself…” “What kind of cancer did you have?” I probably should have just said mind your own business or something, but I just went along with the conversation. Then the guy started talking about his cousin who’d had cancer, and had suffered with a low immune system due to the treatment, and did I have that problem too? I didn’t think so. Apparently it was really difficult because nobody could visit his cousin if they had even the sniffles. That does sound difficult and though I sympathise, I don’t actually remember asking. I’ve had the charity (maybe not the same charity, thinking about it) call me before and they’ve always been really nice, but never as personal as that, with their questions or their own unsolicited anecdotes. It was all very strange and a little triggering, and also turned out to be totally unnecessary because they wanted me to donate regularly, which I do anyway.
So. I think that’s the reason I’ve been finding it a little difficult to catch my breath a few times over the last couple of days. Breathlessness caused by stress, I think. I’m just going to have to try really hard to kerb my thoughts and not slip back down that hill. It’s only a setback if I let it be a setback, right?
Isn’t it interesting how we can talk to and sympathise with each other about bruises, broken arms, accidents and so on, but we can’t do the same with things we really need to talk about, like life-threatening diseases? I stepped on a plug last week and spent the following days walking around like a drunk hunchback in slow motion. It hurt. A lot. But I didn’t really mind at all. So that’s where this has come from.
I don’t want
sympathy for sciatica
because I know what it is
and it’s not much to me
and what’s all the fuss over a foot?
A bruise, a cut, it’s nothing much –
soon it’ll be nothing to me
I don’t need tuts and shaking heads
for being unable to drag my leg out of bed
Anything I can see is no real issue to me –
a twinge is no big deal
and pain is okay to feel
if I know its rhyme and reason
But fear is the worst pain
Fear is the sharpest stab in my side,
the most familiar ache
I would welcome a broken arm instead
A fracture is just that – a fraction of a problem
So I don’t want sympathy for sciatica
I don’t need support because of my limp
or anything solved by sitting down
because none of that will drive me underground
We haven’t even left for work yet
but already I’m thinking about
coming back home to you.
what if we were never in a tunnel
and the light was just a lie we were told
to make us keep walking?
what if that burst of morning
was something they were holding
just out of our reach?
what if they watched as you ran
on that treadmill, as you
racked your brain for a lost memory
when you fought their grasp
when you held your head
when you were just trying
to remember
the softness of a neck
Your bare ring finger
is the most provocative thing
I have ever seen, matched only by
the nape of your neck.
I am tortured by the things I said I would do.
The list of things is mounting up,
things I said I could do that I just can’t,
things I wanted to do but was apprehensive of.
Where has my resolve gone?
Why no sense of urgency?
Which way does the crow fly now?
It zig-zags, taking any diversion it can.
the amount in which I miss you
is matched only by how ridiculous
it is that I miss you
and the certainty I hold that
it doesn’t bother you
how does it feel
to be so very afraid
that every dark cloud
will summon a monsoon?
how does the weatherman feel
when he sees the hurricane coming
but can do nothing about it?
how does it feel to know
that every leaden sky
could bring news just as heavy?
how will it feel when the
first raindrop rolls down the
side of your face like perspiration?
how will it feel to suddenly be
in the eye of the storm?
I wish I didn’t know.
be terminally honest
different to the point of a fault
while also
indifferent, somehow
be genetically and wholly unabashed
be careless and
care less
and want
and be so, so impatient
and impulsive –
tell yourself it’s
a good combination
love yourself
try
even when you don’t
give yourself a reason to
be shameless
know fear as a terrifying tool
open up like a lotus flower
or a bulging trash can
better out than in
talk to yourself
repeat things to yourself
get some good responses
appreciate yourself
don’t change
be unabashed
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