Chronic Illness - Buzz Words and Trends in Self Care

Mindfulness – What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

Can I tell you a little secret? I have an almost instant allergic-like reaction to certain words... They're usually the latest trendy buzz words - like mindfulness. Gratitude is another. It's not limited to words. You know when there's a massive amount of hype about something? A new book, a movie, a place to go...? That will be the book I DON'T buy, the movie I DON'T see, and the place I DON'T go... I know it's perverse, and I know it's a bit ridiculous, but there you go - it's how I react. 

So, I saw that this prompt had made it through the voting process, and wasn't happy. I thought to write today on one of the wild card topics. But I wasn't overly grabbed by those either, as they don't apply so much to the situation here in Australia in the way they do in the States. *sigh* What to do...? 

There's also the whole debate around analgesia and the beginnings of a move here in Australia away from opioids as a first option for treating severe pain - in exchange for cognitive therapy, meditation, para-medical treatments such as massage and physiotherapy, and...MINDFULNESS. And, I'm sorry, but if someone tells me they're going to take my pain meds away from me and exchange them for those alternatives, they're going to have a fight on their hands! Because despite what all the people who are currently making hell for chronic pain patients say, opioids DO work for the chronic pain caused by a degenerative, inflammatory disease.
 
So I Googled 'mindfulness' and found an Australian government website with a short - 2 minute read - you can read it HERE.

So, here's the thing...according to that definition, I already practice mindfulness. Who'd a thunk?! 

Back in the day, in the early months and years of having RA, I used to journal with a friend. She also had autoimmune illnesses, and like me, is an artist. So we journalled, often together, and as well as writing, we drew and painted in our journals, sometimes showing each other what we'd done, and talking about what the imagery meant for us. We also talked about the process of journalling, and how that made us feel - what was helpful, what wasn't. And the drawings and paintings - how THEY made us feel. Quite often, for both of us, they were a fairly unconscious process - the antithesis of mindfulness. Neither of us ever planned them, per se... There was no consistency as to whether we did the art work before or after writing. And for both of us, most of the time the imagery that emerged was pretty spontaneous. Sometimes, that could be a pretty spooky experience. And the finished imagery was often quite confronting. 

Into the Vortex, Mixed media on cartidge paper, 20.11.94

Journalling is an activity that's often recommended for people with chronic illness, as a means to get emotional stuff that we may find difficult to talk about OUT of our heads and to a place where we can perhaps process it a bit better. In a sense, blogging has become that for me, when I AM blogging... Like blogging, journalling requires commitment - making time each day to do it. Beginning the process can be difficult, because it can feel selfish, and self indulgent - especially if writing isn't your thing, or you've not typically taken time out specifically for yourself. 

It's a MINDFUL process though, journalling, and blogging. It requires self examination, and taking time to stop and monitor where we're at. And while I might not always be writing regularly, the past habit of journalling and blogging means that that self monitoring process is something that I do - whether I'm writing the stuff down or not. 

When I draw and paint, the activity takes me to a different space in my head. I did an activity earlier this year shortly after signing up to Instagram - after MUCH pressure from a number of artist friends. Those same friends then started encouraging me to do the #100DayProject. It's an international online event facilitated by a pair of artists whose names I can't recall at the minute, and I can't remember - #brainfog - how long it's been running. Essentially, it's a creativity project. You choose a creative endeavour - it can be absolutely anything, and the diversity among the participants was one of the wonderful things about being part of the event - and commit to do something with that EVERY DAY for 100 days, and post with the hashtag so everyone can see each other's work. 

We're VERY broke at present. Part of the stuff I've not been blogging about for almost a year has been Dragon Dad's changing work situation - which is still in a state of flux. Needless to say, that's meant our financial situation has become increasingly precarious, and at this point, the only thing that's kept us in our home, fed and surviving, has been help from some very generous friends. So, for me, embarking on a creative project over a decent span of time dictated very much what I could commit to in terms of materials - art materials aren't cheap, and there just isn't money for anything beyond absolute essentials. But I had pencils, and I had lots of art journals that weren't full, so I decided on graphite drawing as my process. 

Every afternoon - most days...there were some glitches along the way, and I also got back into the habit of carrying a wee journal and clutch pencils in my bag and did some drawing while out and about - I'd settle down to draw. And let me tell you, going back to basics just armed with a pencil is perhaps one of the toughest things an artist can do. There is NOWHERE to hide, no colour to distract...just the graphite on the white paper and a drawing of an object that might or might not have worked! 

The mental focus required is immense, and I found myself starting, after the first couple of weeks, to feel that my day had lost some necessary balance if I didn't draw. Most of the time, I was, essentially, working with still life. I'd scrounge around the house looking for something to draw, drop it onto a board on the table, then sit and work away until I'd rendered the object to my satisfaction. I drew loads of fruit and vegetables, my shoes, sewing oddments like old cotton reels. The day I decided to draw some knitting I had on the go - well, that might not have been the most sensible decision... The cats - when they were sleeping. Had to be quick with those, because the little blighters could FEEL my attention on them, I'm sure, and would invariably move halfway through. I am right handed, so my left hand was always there if I couldn't think of anything else. And if I was out, I'd draw the people around me in cafes and markets.

#100DayProject drawings, graphite on cartridge

Drawing like that is very much about being in the moment. You have to coordinate hand and eye movements to take what you see and lay it down on the paper. It's something I've done since I was a child, and then reinforced with formal training at art school. It informs the way I look at the world. When I look at what's around me, I don't just see people, scenery, buildings, stuff.... I see shapes, lines, colours, shadows, patterns. 

I'm also a photographer. I participate in a daily photography challenge via a group on Facebook. Ever day we have a prompt to use, and ultimately, it means for all of us - and this is a thing that gets discussed in comment threads in the group - we see the world around us much more acutely than we did. For me, it's another layer of looking on top of the way I was already looking at things. Now, in addition to the shapes, lines, colours, shadows and patterns, I'm framing things. I photograph within square formats, for the most part - something I started doing after signing up to Instagram, as rectangles get amputated there...and even on FB, large photos get compressed by the site. But I also like the square as a tool. It's EASY to offset an object in a rectangular format and achieve a balance of the negative space. A square, because it's a perfectly even shape already, makes creating asymmetry within it much more challenging, and I do love a challenge. 

Selection of photos from this year's Photo a Day

So, as I've often discovered in the past when I've refused to read that book everyone's talking about, or go see that movie that is making waves, I find that my daily practice as a creative - whether I'm writing, drawing or taking photographs - has instilled in me, by default, a practice that is akin to mindfulness... How very humbling that feels. 

And what does that do for my RA? Well, I write because I've always written - academically, professionally and for myself. It satisfies something in me to craft a story that sometimes others will read, and sometimes not. That's not the point. I'm MAKING something. I joined the photography group to give myself a daily practice, at a time when I felt quite lost and didn't have anything like that happening. I also found wonderful people in that group, who have become good friends, some of whom I've been able to meet face to face. And it was some of those people who pressured me onto Instagram, and then into the #100DayProject (I have to add, incidentally, NONE of them did the project...so I was left out there like a shag on a rock!!). And that's lead to me beginning a rebuild of my professional art practice.

All of these things have brought me back to daily practices of creating, back to myself and the person I am - the person I was pre-RA and the person I STILL am, despite the disease and the changes it's brought to my life. They offer distraction. They make me get up, get dressed, and leave the house, in search of things to photograph and draw and write about that are beyond the confines of our home. And they are mindful practices, in and of themselves that make me be very aware of what's going on around me and how I respond to that. 

It may not be the mindfulness that's touted as an alternative/complimentary mode of treating chronic pain. But it's MY mindfulness. It's the stuff I do to make sense of my days. And the stuff I do that gives me a reason to keep going. So I don't particularly care if this is a somewhat unorthodox take on the concept. It's working for me. And that's enough.