We have recently started offering online Creative Writing workshops for members of our Support group. The sessions are hosted by Writing Skills Trainer, Judy Yorke and are a great way for people living with CES to express their lived experience in a creative, different way. Here is Zoe’s creative writing that she completed during the latest online sessions.
Cassandra was a princess of ancient Troy (yep – of the Trojan war fame). She
is known for having the gift of prophecy, but being cursed by the god Apollo
to never be believed. Let’s keep it PG and say she…rejected his advances.
The Greek gods don’t like it when you do that. Cassandra accurately
foretold the destruction of Troy, the murder of her captor and sadly, her own
murder as well.
What’s that got to do with Cauda Equina Syndrome? Fair question, but I’m
a classicist and get Greek myths in wherever I can. I’ve always felt an
affinity with Cassandra- seeing things others didn’t, not being believed,
then those things happening. Standard fare for a woman interacting with
health care, to be honest.
When my back first went, I knew immediately something was very wrong,
so I went to my GP. “Go to physio and here’s some painkillers” was the
response I got for almost two years. I knew that physio wasn’t going to fix
this. I was never referred for a scan or anything. Just physio and painkillers.
Then, at work, I spoke to a student who had to defer a module due to CES,
and thought…oh no, those symptoms are familiar. But no, I told myself, if it
was CES the GP would have picked up on it. You can’t miss that. It’s a big
thing!
Then my legs went numb.
The out of hours GP sent me to A&E, where after 14 hours, a doctor asked
me if work was more stressful than usual. Then he sent me home with
codeine. My legs were still numb.
Then two weeks of agony later, I got on the floor to stretch…and got stuck.
At 31 years old I had to call the paramedics to come get me off the floor.
Thankfully, they saw that this was absolutely not work stress, and I needed
immediate help. Well…10 hours later I got that immediate help after an MRI
showed two massive disc prolapses causing Cauda Equina Syndrome. I
was in urinary retention. Turns out I’d kind of “Cassandra’d” myself by not
believing myself when I knew something bad was up. But I trusted the
doctors, which is what we are supposed to do, right?
Anyway, a few hours later I had surgery, and although it took a little longer
than expected, it worked. Well, for 10 days at least, then the symptoms all
came back and I got an Uber to A&E. “It’s probably inflammation from the
operation” I was told…not being believed AGAIN. But they did another MRI,and it turns out the disc prolapses were back, and even worse. Time for
another surgery.
I joked with the surgeon during the consent procedure, about how I would
very much like a blood transfusion if I needed it. Good job I said that,
because the surgery went, like, super wrong. Had a huge hole torn in my
dura (the membrane around your spinal cord and brain), lost a ton of blood
and ended up with a huge Cerebrospinal fluid (CSF) leak. What followed
was five weeks in hospital, bedbound. I then got an infection in my CSF,
nearly died from that, then had to have a third operation where I think they
just duct taped my spine shut.
My left leg is still numb. I’m still in pain. I have PTSD. But I’m still here.
I guess my point is, it can be defeating when no one believes you. It can be
frustrating to have someone suggest your agony is just work stress,
hormones, female hysteria, wandering uterus, or whatever archaic thing we
should have moved past long ago. But you know your body, and you know
when something is wrong. You haven’t been cursed by Apollo, so you will
eventually be believed. Keep fighting, and if needs be, put that numb foot
down when seeking help!
Zoe’s CW workshop testimonial
I recently attended the CES creative writing workshop with Judy from The
Sentence Works, and I only have good things to say about it! My only
experience with writing was essays for uni, and some translations of
Sappho I attempted. The idea of writing prose rather than poetry, and of
deciding my own subject, was really quite daunting. The information and
advice given by Judy really helped my to find my story, and tell it in an
interesting way. It was also lovely to meet other sufferers of the condition
and hear their stories and the way CES has affected them.
I’m intending to write further on the subject of CES, and I am currently
trying to work out how I can weave my obsession with the ancient world
into my exploration of the subject!If you live with CES and would like to join the online Creative Writing Workshops, you can keep an eye out for upcoming dates and reserve your spot by visiting our Eventbrite page – https://www.eventbrite.co.uk/o/cauda-equina-champions-charity-1187294-27827793471