Tag: Lyme Disease

Facing Failure and Frustration

When I was at my most disabled, I swore to myself that if I were ever to start living normal life again I would be fearless, I would take opportunities and I would enjoy everything ten times more than I had done before. And of course, just like everyone else, when some of the opportunities have returned I have quickly forgotten what a luxury it is to be painting at all, and have only been frustrated by my efforts and intimidated by the prospect of failure! Over the last few weeks I have spent an entire morning on a series of horrific paintings of a lowly sweet and wasted hours on two versions of a very unsuccessful painting of an interior window! I also failed to make it pass pre-selection for an exhibition at the Mall Galleries.

Of course any artist should be prepared for this rocky journey, but I thought I would share these struggles because when an artist shares only the work she is proud of, it can look like it all comes easily. In fact, a lovely facebook page called procraftinate summed up the agonising process of painting perfectly – you start with a wonderful idea, and a captivating image in your minds eye; you begin and for a while it looks promising – your hopes continue to rise; mistakes creep in, you start to lose that original idea, you start to hate the very sight of your painting. This, for me, sums up the first hour of any painting. By the time I’m an hour in, I’m usually at the point where I want to give up. The bulk of the work will be done against an internal chorus, singing, ‘This is terrible, you are awful at this, this is just a colossal waste of time…’ etc etc. Sometimes, usually after a night’s sleep, I come back to a painting and suddenly see its good points. From then on, the final stretch of painting is braving a nerve-wracking chant of ‘don’t screw it up, don’t screw it up!’

So there you go, after a behind the scenes look into the artistic psyche, here are some of the better bubbles that rose to the surface since my last post:

The first in a short series of paintings showing how Lyme Disease changes the meaning of ordinary objects. Here are lemons – a staple of still life painting (though my first ever attempt in oil), but here they are next to a glass because, for me, lemons mean detoxing from the effects of Lyme treatment. While painting the glass of water was an utterly bewildering experience, it ended up being fairly successful, and will only need minor alterations. The main area still to work on is the cut face of the lemon, which lost all its shine as I worked too quickly and too muddily.

I then decided to finish the portrait of little dog called Jet. You might remember the painting looking quite near completion in a previous post. In fact, it took many more hours to finish – much of that time spent over-fussing, and then trying to recover the original freshness. Over time I hope I will become more selective in these final stages of painting, and have the confidence only to work on a few areas which need adjustment, rather than diving back in head first and losing sight of the whole. As I was painting I was desperately worried about losing the character of this little alert face, but fortunately I think I managed to add the detail, particularly around the muzzle, without losing the all the good points in the first layer of paint!

Now follows a collection of new endeavours, which, for want of a better (or even, good) name, I’m calling ‘tiny treasures’.

I was captivated really by these double sided brass frames, which are now being used as a trendy way to display photos or pressed flowers. However, I love the way that these little frames seem to crystallise and suspend what is inside, so my hope is to make tiny paintings to play with the idea of a solid object being impossibly squeezed between two panes of glass. I also want to explore the idea of ‘treasure’ – selecting things which are fragile, sparkling, transient or perfectly formed. My first few have been a blackbird egg, an unfurling fern frond and a rusty key. As you can see, sometimes I use torn edges, like a fragment of life itself, and sometimes I have very carefully cut out the painting so that it really looks like the object is suspended in mid-air.  If these go down well, I have many more ideas to come…

Lastly, after my crisis in confidence a week or so ago, I decided I need to do some art from my own development, and so have started a work where the subject will be split into four fragments and each will be executed with a different medium, as an exercise and exploration of how different media bring out different qualities in the subject. My hope is that, as a whole, the work will be coherent and realistic, but individually the sections will feel painterly and abstract. I hope that leaves you interested! More on that, I hope, next time.

Until then, I will be trying to be less frustrated and fearful about my art, and rediscover the spirit of joy underneath all that self-imposed pressure! Wishing everyone else, too, a fear-less, frustration-less, pressure-less, joy-ful Easter weekend!

When life gives you Lyme….

I try not to write about Lyme Disease very often on this blog. After all, you came to this site to read about art, not an infectious disease. However, I haven’t been able to post recently because for two months I have again been too unwell to paint. There has been one or two odd hours where I have picked up a paint brush, but as it takes me an hour or two to really start painting fluently, these short sessions where I’ve really not been feeling up to it have resulted in more frustration than worthwhile results! Below are a few of the projects which have been eluding my artistic grasp and will be discussed in future posts, hopefully once they have been rescued.

imageSo, as Lyme Awareness month (May) is all too soon approaching, I thought I would take this opportunity to post about the disease. I had planned to do a new painting for this year’s Lyme Awareness campaign, entitled ‘When Life gives you Lyme’ – a play on that infuriating phrase, ‘when life gives you lemons, make lemonade’. As everyone knows, this mantra exhorts you to make the best of a bad situation and no doubt many people with Lyme have tried to do so, by putting their efforts into campaigning for better awareness, diagnosis and treatment.

image-2-e1459004996956But more often, ‘when life gives you Lyme’ you can do nothing at all. Ironically, my barely-started painting is the perfect metaphor for the impotency which Lyme forces on many of its sufferers. Lyme doesn’t stop you from having great intentions and creative ideas, it just makes you physically incapable of executing any of them. Many people manage to overcome or work round various disabilities, and some go so far as to describe themselves as ‘differently abled’ because their disability doesn’t stop them from living the life they want to live, they just have to be creative about how they go about it. For many, Lyme Disease is not like that. It’s more akin to asking someone to work around having a coma. I can get out of bed in a morning, and by the time I have dressed and had breakfast, the illness has overtaken me and I’m back in bed again. Of course, most of the time I force myself to stay up and not ‘give in’ to the reality of the disease, but for all that I am able to do in that state of pain and overwhelming fatigue, I might as well have gone back to bed. Often, I suspect getting up at all is something of a futile exercise in hope and good intentions.

I have been encouraged, in the past, to simply adjust my expectations of life and then I won’t be constantly disappointed – to focus on what I can do. If my only expectations, however, become a life of either being asleep or as good as asleep, then I feel it’s not really legitimate to call them expectations of life. That’s what most people hope for in death. There seems very little about a life like that which resembles living at all.

It is sometimes easier for doctors or onlookers to interpret Lyme Disease as the fault of the sufferer – that in some way it wasn’t the tick bite that made them ill, but rather perhaps their personality or lifestyle. It’s a comfortable way to avoid the truth of the situation: that in the UK there is devastating disease which is easy to catch from a tick bite, which is hard to test for and, if not caught early, is currently hard to treat. Those wishing to ignore these facts may tell some Lyme sufferers that they weren’t active enough before they got ill, and other sufferers that they got ill because they were too active. I usually fall into the latter camp.

It has been nearly six years now since I was bitten by a tick in Oxford and got the most common form of the EM rash, which is a diagnostic sign of the disease. Yet it was missed by at least two GPs and I did not receive a diagnosis or any treatment for another 4.5 years. I hope it wasn’t already too late by then. I hope I don’t have a lifetime of this ahead of me. I hope I don’t have to see my family bankrupted for treatment which the NHS should be providing. But two years into treatment, the episodes of progress I have seen have been outweighed by the otherwise intransigence of the disease.

There is a reason that Lyme Awareness Month is in May – if it’s warm enough for you to be spending time outside comfortably, then it’s warm enough for ticks to be out too. The immature forms of the tick can be as tiny as full stop, but their bite can be just as detrimental as the bloated adults you most often see on hedgehogs or dogs. And yes, dogs and horses can get Lyme – in fact, vets are generally more educated about the disease that most doctors in the UK. Ticks are carried throughout the UK by squirrels, badgers, foxes, deer, rodents, hedgehogs, dogs or even birds. Have you seen any of these animals near where you live? Well, ticks are probably not far behind. Any long grass or vegetation could harbour them, be it in your garden or a park, or in the countryside. You might not only miss the tick itself, but a tick bite can also be overlooked: not all infected bites results in a characteristic rash and sometimes that rash is concealed by body hair or in a hard-to-reach part of the body.

imageWhat is your defence? The best defence is awareness: please visit Lyme Disease UK to familiarise yourself with the signs and symptoms of Lyme disease and if there is someone you know who is unware of the disease, send them a Lyme Awareness card this May or forward them this blog or a link to the website above. As far as diagnosis and treatment in the UK is concerned, your defence against Lyme is desperately poor, but this can be changed. Please look out for a support the Lyme Awareness Campaign this May. I have sent this T Shirt summarising my experience of Lyme, in lieu of being able to go to the protests myself.

I am also looking for little local shops who might sell my Lyme Awareness Cards during May. Profits will be going to Vis a Vis Symposiums, and the packs on my website will be discounted from now until the end of May. Do you know anywhere that might sell Lyme Awareness Cards? If so, please send me a message.

Rachel Alban Art

What do you do ‘When Life gives you Lyme?’ I try not to lose all hope.

Months in the Wilderness

I don’t usually begin with a discussion of stationery, but a couple of weeks ago I bought a Leuchturm notebook, which I have melodramatically christened (on the front cover) “The Black Book” – Months in the Wilderness. I got it as a new ‘day book’, in which I try to write something each day, when I’m going through periods when I’m not able to do anything more substantial. It sounds very self-indulgent, but the theatrical solemnity has been helping me to grit my teeth for the coming months of treatment. Having experimented with the process for the last two weeks, I think I was right to prepare myself.

With Lyme Disease, if treatment is making you feel better instantly, it’s usually just a sticking plaster – covering up the problem. This treatment is designed to be much deeper and more thorough, and correspondingly more unpleasant! Having forecast all this doom and gloom however, there are glimmers of hope – I do occasionally get whole weeks off from treatment and I hope it won’t be too long before I get breaks of feeling a bit better between the antibiotic nausea and ‘health crises’ which are achieving that improvement. So the prospect of art in the next few months looks patchy and unpredictable, but possible – so I hope you will check back to see if I have managed to squeeze anything past the health hazards!

In the meantime, I wanted to share something really positive. On my last ‘good day’, back in July, I went to see my parents’ MP, Phil Wilson, to talk about my experience with Lyme Disease and my concern about the lack of awareness. I have to admit, at the time, I wasn’t sure that the enormous physical resources it had cost me (due to the wonders of Virgin East Coast I had had to drive there at the last minute – not having driven more than 10 minutes in months!) would have been worth it, but Mr Wilson was receptive and proactive. He wrote this article recently, showing how much he took on board, just from our short conversation. Hurrah for a little progress! The wilderness is in need of prophets!

I can only hope to post again before too long, with art rather than articles to share!