I Choose... The Retired Bridgeburner

Invisible illness isn’t a choice, but I choose… to share my experiences through The Retired Bridgeburner.

(The origin of the name of this blog, and a series for which I will know passion unending for the rest of my days as my touchstone. Image form ebookee.com)

I had to wrestle with myself for a fair while before committing to creating The Retired Bridgeburner back in February of this year, and I don’t think I’ve ever spoken very clearly on the blog about why I chose to do so. Given it’s in-keeping with the theme of this year’s Invisible Illness Awareness Week it would seem fitting to do so now.

Firstly, I’m going to try and explain why invisible chronic illness is an inherently lonely state of being, something it’s worth understanding in the context of the origins of my writing. As a patient suddenly struck down with these monstrosities you find yourself surrounded by people who for good or ill cannot really understand what’s happening to you. It’s not their fault for the most part; for the first year or so I didn’t understand, so how anybody else could do is beyond me. For a while I wondered if it was a quirk of my personality combining with the situation to create this loneliness, but on venturing into the chronic illness tags on Tumblr, finding forums and Facebook groups I soon realised this was a problem almost universally felt across the self-named “spoony” community.

Another thing I soon discovered is that outside of these small boltholes and safe havens most patients were quite reluctant and even scared to talk about their experiences – having at some point been on the end of comments along the lines of “You’re just attention seeking”, “You’re just lazy”, “If you’d just exercise and lose weight”, “You’re faking it/lying/your condition doesn’t exist” etc. and naturally had ceased to talk about it. Rather than put up with unhelpful or abusive reactions from others they suffered in silence.

What I soon realised was that suffering in silence was not acceptable. I understood why patients did, but at the same time I became increasingly angry at the general ignorance which drove them to do so. I began searching around for people who broke this mould and wrote open blogs – my search didn’t come up with nothing, but certainly with understandably slim pickings.

One such blog belongs to my friend Jenny, a sufferer of severe chronic eczema currently going through Topical Steroid Withdrawal in a desperate attempt to aid recovery. You can find out more information about her experiences and about “Red Skin Syndrome” on her most excellent page here.

A little reluctantly at first I came to the inevitable conclusion that if you want to make a change for the better, you have to be prepared to do it yourself.

The name walked into my head pretty much without thought. A play on firstly being ill, but most importantly a reference to the authority resenting, hard-as-nails band of soldiers who represent one of the last vestiges of the “old days” in Steven Erikson’s Malazan Book of the Fallen series. Why? Partially because they’re some of my favourite characters* but mostly because the series became a touchstone for me in the dark days of numerous hospital visits and seemingly innumerable dead ends.   

Armed with a name I started to think about what I wanted to do. It wasn’t enough (for me at least) to write long posts declaiming all the reasons Fibromyalgia and Interstitial Cystitis are not the most friendly of beings. That wouldn’t give patients anything they didn’t already know and would be likely to kill off any interest from healthy people who wanted to find out more. If I was going to commit to this and put the most vulnerable part of me out there on show, I wanted more than anything to be of some help.

Thus the most simple of ideas – to aim for positivity.

I had to tread a fine line with this – going for 100% positive all the time and refusing to acknowledge the rather long list of negatives would be firstly unrealistic and unhelpful and secondly likely to make me throw up. I’m a cheerful soul but I don’t do saccharine and sugar-coated. I wasn’t aiming to be fluffy, whiter than white and universally liked after all; I was setting out try to do something useful.  

(Dovakhitty - my only allowance for "fluffy")

One of the things which becomes apparent in the chronic illness experience is that you never stop learning, and so I decided I’d share the things I learned and any helpful practical tips these led to. I soon found I couldn’t do so impersonally, and regular readers will know the blog is littered with unashamed geeky references, whimsy and my dry and sarcastic sense of humour. I’ve never been a believer in the concept of presenting an “internet persona” which differs from your true person, it’s dishonest and I neither like it nor have the patience to entertain it. I couldn’t be honest about my experiences unless I went about it being nothing less than myself, warts and all.

Now here we are today. The blog has certainly attracted its fair share of nay-sayers which was always to be expected, but from the intended audience I couldn’t have asked for a warmer or more appreciative welcome. She’s just broken 12000 views and to my delight some of the most popular posts are those in which I’ve mentally said “sod it” and waved my “geek girl” and heavy metal fan flags respectively.

So, why do I choose to be open about my most vulnerable side and write The Retired Bridgeburner?

Because it’s important, and every voice attempting to raise awareness and speak against ignorance is another step on the road to wider acceptance that invisible illnesses are real and just as deserving of respect, understanding and compassion as their more visible counterparts.

"Even the smallest person can change the course of the future."

The Lord of the Rings, JRR Tolkien

*If you’ve read the whole series and Fiddler in particular didn’t rend you into tiny little pieces at the end of The Crippled God, I’m sorry to inform you that you probably don’t have a soul.

Invisible Illness Isn’t a Choice, But I Choose To…. Invisible Illness Awareness Week 2013.

I choose to... continue with my creative hobby despite the difficulties and pain it presents in the face of my chronic ill health.

I accepted a long time ago that I’m a creative soul, and what I mean by that is that if I don’t have an outlet for creativity then my general well being suffers noticeably. I don’t quite feel like myself unless I can occasionally sit down and exercise ideas.

My particular strength lies in sketching, and in replicating what I see. I’d love to be able to create from my own head, but that doesn’t seem to be something I’m destined to do and I feel a mixture of awe and envy for those can. However, I’m happy enough with my ability to put down on paper with a pencil whatever is in front of me. In recent years I’ve turned my hand to replicating album covers, mostly heavy metal albums and particularly those with a dash of the fantastical about them.

Thus far I’ve taken on Trans-Siberian Orchestra’s Lost Christmas Eve, Edguy’s Hellfire Club, Sonata Arctica’s Reckoning Night and most recently King Diamond’s Abigail – a departure in style from my norm and something I enjoyed all the more for the novelty.

I’m one of those people who get a real buzz from buying art supplies – even if it’s just a new sketchbook to replace its full predecessor. I also own a beautiful set of Derwent Coloursoft pencils, a Christmas gift I still get somewhat giddy over using – I’ve been known to get them out just to look at them on occasion. If anyone is looking for a high quality set of pencils without paying a portion of your immortal soul to Faber Castell, I really recommend them.  

(MINE! Image from artifolk.com)

Why is this a choice? Sadly, my hands aren’t what they were, I have noticeably less dexterity and they protest painfully when put to work with a pencil. The first time I sat down to sketch and found this was the case was probably one of the lowest points in my journey with chronic illness. The one talent in which I wasn’t merely mediocre it seemed would be taken away from me. Though no small part of creative skill lies in the mind, I’ve always envisioned for myself that my talent sits in my hands, and it felt like my own skilled hands and been replaced with an ungainly, awkward collection of fingers which didn’t quite work. At the time I couldn’t see a way round it and so despaired for a while.

Since then I have found that with the help of neoprene heat therapy gloves (I had to try out a couple, and eventually settled on a thinner more flexible pair) and teeth-gritting determination I can still create. Some months ago I completed a composition around The Last Unicorn film for a friend, and in finishing it I took a huge step in my own recovery. It was difficult, and painful to the point of tears sometimes, but whatever the cost to find that I could still do what I loved was a relief I cannot describe.

(My attempt at King Diamond's Abigail)

It takes longer and it is inevitably painful – this most recent attempt saw my knuckles swell for the first time and I’m left with the residual stiffness and pain as I write now, but for the sake of my own sanity it does me the world of good to occasionally fight through the discomfort and indulge in my beloved creative hobby.

And believe me, nobody wants to see my take on “artistic temperament” when such an outlet is denied!

This has been my blog for Invisible Illness Awareness Week 2013, a contribution along with my guest blog last week. I hope you like it and hope to encourage other bloggers to join in throughout the rest of the week!

Wishing you all many spoons xxx