Some of you lovely folk who follow my work will have seen me mention recently on social media that I was needing to take time out from painting to have some surgery (thank you so much for the lovely well wishes). I thought I would explain a little…

I’ve tended, over the years, to keep a separation between ‘personal’ and ‘artist / art business’ related posts, only mentioning private matters where they directly affect my art practice – but I seem to have entered a somewhat ‘gung ho’ period in life (big life events tend to fuel these attitude shifts, I guess) and I so I thought I’d open up a bit… As it so happens. it turns out that the two things – surgery / illness. and making art – are inseparable issues anyway.

A few months ago I realised I was having increasing problems with a number of things – my balance was less stable, I was falling over and I had trouble making one of my legs ‘work’ sometimes. I also was having some cognitive issues with finding words, remembering information, carrying out certain processes (like driving the car – so I stopped). On one occasion I completely lost the ability to form words for ten minutes or so, on another occasion I was unable to swallow. The central part of my face would regularly go numb for days at a time. I also developed a tremor in both hands and was experiencing weakness in my arms, which was making daily tasks difficult, like chopping vegetables – or drawing / painting. I had been back and forth to the GP for a couple of years (since picking up a mystery bug whilst travelling in South East Asia) with a string of annoying little complaints and a general sense that ‘something wasn’t quite right, but the fact all tests had always been okay and nobody could find anything reassured me that I was just unfortunate in ‘catching a lot of things’ from the kids, and that I probably needed to slow down a little and take less on. When tremors and walking issues became apparent though, my GP referred me to see a neurologist, who in turn ordered an MRI scan and sent me to see a neurosurgeon.

It turns out I’m one of a very small number of people (about 8 in every 100,000, depending on what sources you read) who has a syrinx (or fluid filled cyst) inside the nerve material at the centre of the spinal cord. These are often formed as the result of a congenital deformity at the base of the skull, but in my case could well be due to a small kink in my spinal bones caused by a fairly minor, low-speed car accident about seven years ago. The spinal cord has a small (the width of a strand of hair) canal running down it’s length, which connects to the brain cavity and is filled with the same Cerebrospinal Fluid (CSF) as cushions and supports the brain. In my case it looks like the bones that have got slightly misaligned in my lower neck have caused a build up in the fluid and forced the tiny canal to form into a fat cyst at the very bottom of my neck, which is about 4 vertebrae long and takes up most of the width of the spinal cord.

The spinal cord, of course, carries messages from the brain to all the other parts of the body – so a little like when a stone blocks the spout of your watering can (and stops some of the water from fully flowing out), the cyst can interrupt normal flow of nerve impulses to different parts of the body.

Apparently it’s possible to have a syrinx and have no issues from it. Also the size doesn’t necessarily say an awful lot about the symptoms it causes (big syringes can sometimes cause no or few issues, and small ones can cause lots of problems). There’s no cure for syringomyelia, the only real option to try to ease symptoms from a misbehaving syrinx is surgery to try to shink it.

And so I found myself, within a few weeks of diagnosis, in hospital for a procedure to put a permanent drain (shunt) into the cyst with the hope of draining it and either relieving symptoms, or at least halting their progression. The op involved drilling into the my spinal bones, cutting through the grey nerve matter and accessing the cyst and putting a small tube into it (and fixing it into place). Another incision was made in my back into order to site the other end of the tube, which drains CSF into the cavity around my lungs, where my body can absorb it. Obviously any sort of op that messes with grey matter is a serious matter – and I was a bit grey worrying about it all. Thankfully I was in very experienced (and steady!) hands, and the procedure went to plan.

Unlike the watering can analogy, where removing the stone from the spout returns water flow immediately and completely to normal, squishing the spinal grey matter can sometimes cause permanent damage. So after an operation like this, it’s a waiting game to see what improvements become apparent, if any (and also if the procedure itself has caused any further issues). Also, shunts have a habit of dislodging, blocking or otherwise going wrong – so there’s a good chance a repeat of the operation will be necessary at some point in the future.

In my case I seem to have had some improvements with use of my arms and a little better balance, but unfortunately I seem to have a trade off situation with the loss of a lot of feeling in one leg. In time I should know more, and a repeat scan should show if the syrinx is shrinking.

One side-effect of the procedure has been low CSF headaches – where too much fluid has drained from around the brain, leaving it no longer properly cushioned (these, at worst, can cause debilitating headaches, nausea / vomiting, extreme sensitivity to light, and are only improved by strong painkillers, and laying flat) – thankfully these are getting better week by week, so I’m hopeful that my body is permanently adjusting.

So what does this mean for my art? Well obviously not being able to reliably hold pencil or paint brush where you want it can be beyond annoying, and I have a feeling the hand tremors are with me in some form or another for good. My stamina isn’t what is used to be – but actually having a studio in my house, a 30-second commute to work and a 30-second journey back for a lie down is pretty convenient. My mind’s not always ‘in the right zone for painting’ – but then artists have this issue all the time for lots of reasons, ce la vie! It’s true I won’t be taking on any major exhibitions or travelling to events for a while yet. The one thing I’d like to make happen is being able to travel independently into the countryside to do prep work for my landscape paintings – and hopefully one day again being able to work out in all weathers making work directly *in* the landscape (for me a really important part of that side of my work).

I think being adaptable is key – look at Monet and his late paintings when his eyesight was failing, possibly some of his most famous and successful works. So I’ve been working with some new tools which allow a different kind of grip, and I’m allowing myself looser mark making.

I had recently been working on my art only intermittently, as I’d taken on some work that was not art-related (which had to take priority). But I now have no excuse not to find some ways of dedicatedly focusing on my art (I’ve had plenty of other excuses for not focusing on painting over the last couple of years – charity work, curating a big exhibition, traveling for six months, family things…). I think making art is rather like many things, the more you do it the more intuitive and gracefully flowing the whole process becomes – and so I hope from renewed effort and through forced adaptation I can find a new direction, tempo and focus to my work (including a brand new shiny website, which I’m slowly building). Watch this space…




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  4. Hi Nicki – well done…….for everything you have been through – all whilst being a Wife and Mum to 3………..your wonderful art, fantastic heart, great sense of humour and beautiful soul!!! Your honesty and courage have touched and inspired me! Lesley xx

    • Nicki MacRae Art

      Lesley, thank you so much! Means a lot knowing you’ve had all your own recovery and life juggling to deal with xxx

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