Where Has The Art Gone?

Where has the art gone? For an art blog and website, there’s not a lot of art happening here… So what’s gong on?

With a lead-in like that that, it’s evidently going to be a somewhat rambling and introspective post – but I don’t want it to become a downbeat one!

Mainly what’s going on just now are my ongoing health problems… I don’t like speaking about them like that, as they become a third party entity. When externalised, they become something I am ‘at war with’, and I generally like to ride them like a big surf wave, if I can…

If you follow the blog you’ll know I have a misbehaving brain and spine. I have a cyst inside my spinal cord (Syringomyelia), that was discovered last year after it began causing all sorts of neurological problems. To treat it, I had a permanent drain (shunt) inserted into my spine, in an operation early last year, which brilliantly solved a lot of my symptoms and has halted the neurological degeneration, but (as an unexpected side-effect) ever-since has been overdraining. Too much Cerebrospinal Fluid (CSF) is flowing away from my spine, which means not enough CSF to cushion and support my brain (Intercranial Hypotension), so I suffer with daily excruciating headaches, regular bouts of uncontrollable sickness, extreme light and noise sensitivity, and occasionally (if I get ill with a cold or suchlike) absolutely unbearable pain that needs a hospital stay and lots of morphine until it stabilises (I’ve just come home from one-such stay).

One of the ways to lessen the effects of the overdraining is to spend a good chunk of my time lying very flat, so there is less pressure on the base structures of my brain. I also have to be very carefully about always drinking a lot of fluids (3 litres a day). so that my body can produce plenty of CSF. I get tired far more easily than I ever used to, and if I overexert myself it weighs on me heavily. It’s hard to plan. I’ve never very sure if I’ll have to abandon things as I’m not up to them.

I’m so incredibly lucky in some ways! I have the most supportive husband, who covers my short-fallings, holds me when I’m in pain and has even just learned to give me injections of sickness relieving meds so I can get relief more quickly.  true hero! My kids are also amazing, and are very understanding and helpful. I also have the most lovely friends who offer help with childcare, lifts, surprise me with flowers and baking, sit on my bed to chat when I’m too sick to move, think of ways to cheer me up, carry and fetch – and most importantly listen, even when I feel I’m endlessly moaning! My local GP Team have also been fantastic in supporting me. Occasionally I have a few amazing days – I pulled it out of the bag a few weeks ago and was able to make it (with the companionship and help of two dear friends) to London and (amongst other adventures) was able to make the Peter Lanyon exhibition at the Courtauld Gallery before it closed. 

Just recently I had begun feeling that the amount of symptoms I am enduring were too much, they were having too much of an impact on life and I needed to consider options for stopping them or lessening their effect on my health. The last Consultant I spoke to very much gave me the impression that interventions were on offer to me, that I had some power and control in choosing my medical future – and even though they all involved more surgery, I felt ready to give them a try. Sadly in hospital last week my hopes were shattered, I was told that (at 10 months post-op) it was far too soon to be offered interventions, and I have to live with the life-altering symptoms of the overdraining for the next few years… I have to hope things settle of their own accord in that time.

“Syringoplural Shunts are very tricky to manage” I was told. I’m not sure where that leaves me. My life’s a bit tricky just now…

So I’m kind of left feeling a bit alone with it all. It seems I’m perhaps in a very small minority of people with Syringomyelia who have permanent shunts that are causing side-effects. I share symptoms and restrictions with folk with spontaneous CSF leaks, but I don’t share any similarities in terms of options for stopping / improving the symptoms or general outlook…

Somewhere in all of this I’ve kind of lost my creative ‘oomph’. I have lost my confidence. I’m a landscape painter who feels entirely cut off and alienated from their subject matter (I don’t feel so very able to ramble up hillsides and sit in the rain just now). On a better day there’s nothing stopping me venturing into the studio physically for short periods – I just feel like painting is a language that I’ve entirely forgotten how to speak… And if I do start speaking it again, I’m frightened of what might come out!

So, Dear Reader, please forgive me whilst, for a time, I put up the ‘on a break’ signs x