Wednesday, 2 April 2014

365 Feminist Selfie

A self portrait.
A moment of me captured.
Something to tell a story
or not.

I recently discovered the #365 Feminist Selfie project set up by Viva la Feminista bloger Veronica I. Arreola. And have decided to give it ago.

Veronica gives many reasons to embrace the selfie. But, what jumped out for me in particular was the idea of representing who I am in the world in the face of media expectations.  In many ways I can say I’m underrepresented in media. Where are the fat disabled ‘young’ women with invisible chronic illness? Hell even just the ‘fat’ or ‘with a disability’ being represented would be positive. And it’s not often people with rare disease show up in a setting where they are just going about their business, having a life, and not the focus of a House episode or a documentary. So this was in part was my initial motivation.

The other part of me, the artist, loves the project for a different reason. It is in love with the history of portraiture. It has the desire to follow in the footsteps of other artists and explore the self through portrait.

Over the next 365 days I will be taking 1 selfie a day. I will post them here once a month for you all to see. I thought I would also share with you artists who have a daily self portrait practice.  So without further ado…

365 Feminist Selfie
 March 06th to 31st 2014


This months artist is Kensia Barnett. I first became aware of Kensia when a friend gave me me an article from Sunday Magazine in 2010. Kenisa has been taking a photograph of herself every day since 1997.

Love B xox

Friday, 28 March 2014

Introducing Claudette

This is Claudette. 

I can sense already that we are going to have a love hate relationship. 

I have had her in my life for a while, but can still only bear her presence for short periods of time. If I’m honest, I’m not confident she is the friend I need. But perhaps, even with our struggles to get to know each other there is the possibility that we will become thick as thieves?

I suspect she is a bit of a bogan; a lover of guns and roses; an aficionado of hairspray and eyeliner.
But then ‘never judge a book’… 
                                                           you know how it goes.

I do appreciate the quirk of her tattoos. I have longed for some of my own, but my body is all ‘I’m a temple’ about them.

We haven’t had a chance to sit down and talk life’s loves and perils, but ‘like a fine wine’…
                                                            you know how it goes.

For now we just concentrate on forward motion…
                                                     left, right, left, right, left, right,…
                                                                             all the while fighting each other for dominance.

There can be no victor. We either learn to get along or our experiment has failed and we go our separate ways.

There is one thing we both agree on though…

 There is no way in samsara we will continue to wear the man sandal!

Love B xox

p.s. Wondering why Claudette is in my life? read My left foot

Monday, 20 January 2014

So I’m Dead… : Part one: in which I explain stuff and things

I have had a slight obsession with death and dying for as long as I can remember. I wasn’t the slightly creepy kid who killed wasps by catching them in a jar with twink on the bottom and then lined up their corpses on the windowsill next to her desk to dry in the sun. I was the kid who didn’t mind sitting next to this kid.

I was the kid that loved all things science and nature. The kid who was happy to collect dead things to preserve in jars or bury so I could help in their later resurrection as skeleton creatures. The kid that didn’t think it was odd if her brother choose to freeze his long living and much loved pet frog at its death so it could be preserved at a later date. The kid who relished walking through the biology storerooms of the national museum looking into murky jars of specimens. The kid who organised funerals for butterflies. The kid who at ten when asked to do a school project on ‘anything she was interested in’ presented a ‘Egyptian scroll’ on the rituals of death and gods and manufactured a two dimensional art work of a sarcophagus decorated with roses chocolate wrappers and glitter.

I wore pink. I did ballet. I wanted to be an Egyptologist…
          then a Archaeologists …
                  then a Palaeontologist …

   but when it came down to it I chose an Information Management Degree over Mortuary studies because I didn’t want to wait for the next application period. What was I thinking?

I do not remember a time when I didn’t feel close to death. I was a healthy child with no reason to feel this way (other than an over active imagination) and yet there was something deep within me that was fascinated with the impermanence of all life. I was convinced I wouldn’t live past the age of 19. It wasn’t in a morbid ‘I will have to kill myself or die doing extreme sports’ kind of way. It just felt like a fact. Thank goodness it turns out it wasn’t.

I sometimes wonder if this fascination was a deep knowing that I would end up in this situation. That some how I sensed the thrumming of illness just below the surface. So here I am, no closer to death than anyone else and yet constantly aware that the end is near. Living in a kind of limbo with a body that wants the drama of a fast track to living like an unwell elderly person and yet not qualifying as a pensioner.

There is not much information out there on the morbidity of Dercum’s Disease. Mostly just things that are hinted to, like drowning in your own lymphatic fluid or dying of ‘complications’.

“Died of complications”… like my body tripped, tangling in an unravelled ball of yarn and in all the excitement forgot to breathe.

I am likely to be the complication that kills me. When everything hurts and there are tumours growing everywhere, when your brain stops working clearly on occasion or sends you into spasms, when you have searing pains that double you over and make you want to puke, how do you know when to seek medical attention or just put it down to another day at the office? 

So, chances are I will ‘die young’ and not at the 420 years I maintained would be enough as a teenager. This does not bother me. I’m not afraid of death. I am a little afraid of pain. But then how much worse can it get? I’m fairly confident that the next level up is the type of pain that makes you pass out and well, I would be passed out so no need to worry? 

‘So why the heck are you telling me this?’ I hear you wonder.
Well, like everything in my life, if there is a project to be made of it I’m there with bells on. So here it goes.

So I am dead …
A project in which I explore what I wish my death and the disposal of my body to be like.
And because everything needs a beautiful container I‘m creating a handy dandy cheery folder to keep all my final instructions in.  There will be pictures!

Love B xox

Thursday, 2 January 2014

A Year of Selfish

This year I’m going to be selfish!

                          It is going to be all about me.

                                            Me ME MEEEEEEEEEEE!

Some of you may exclaim ‘Surely Not!’ Some of you who know me in the ‘real world’ might be worried about what this means for our relationship? Let me put your mind at ease.

Perhaps a better title for this post would be ‘A year of self-aware’ (or even a year of awesome, because I plan on making it so). But I’m also aware that when you change how you relate to the world there are those who feel put out by it. I know at some point this year I will no doubt hear the words ‘you’re being selfish’. So in part I’m preparing myself, turning the word selfish into a positive in my life.

When you are chronically ill you have very limited energy resources (It is probably best described by Christine Miserandino in her spoon theory) and so how you allocate that energy is very important. It can be the difference between dinner or no dinner, getting dressed or not, a day of joy or a day of frustration and sadness.

Of all the hard things you deal with when you are chronically ill, other peoples reactions to how you mage your illness (in this case, how you manage your energy levels) is the hardest. Many a friend will be lost, many a family member will make comments like ‘you must have depression’; ‘you’re giving in, you need to try harder’; ‘you’re being lazy’; ‘I don’t believe it’s that bad, you are making it up’. And you will find yourself saying ‘Am I?’  ‘Why am I such a wimp?’ ‘Why can’t I just get over it?’.  But with time and luck, eventually you will come out the other side and hear yourself saying ‘NO! I’m not any those things, I’m looking after myself’. This dear friends is where I’m at.

This past year my energy levels have been very low. As a result I have done very little art, blogging or any of the other things that make me joyful. My energy has been spent on doctors and chores and things that are not joyful. Don’t get me wrong; it hasn’t been a complete write-off. There have been a lot of lovely genuine interactions with lovely people and some joyous outings. But on the whole I haven’t been as productive creatively as I would like and it has left me feeling a bit empty.

So that is what this year is about…

Here are a few key things I need to concentrate on. It’s not that I don’t already do them but I feel I need to focus on them and keep my ‘teachers pet’ persona in place. Oh yes people! There is a rapidly salivating wide eyed people pleaser in me. And when weaponized with a healthy load of self doubt she is the biggest energy wasting frustration creation machine o’ doom that ever was. She's like Voltron, only not cool. So here it goes, a list, because there is nothing like a good list.

A list of how I will look after myself unapologetically by B.

Knowing my limitations and not apologising for them
I’ve reached the point where I no longer see why I need to apologise for my limitations. I’m not in control of them and they are part of me. Why should I apologise for being myself?

Saying no with grace and without guilt.
The people pleaser in me wants to try and forget I have limitations. But the reality is I’m happier and healthier if I’m not pushing myself to ignore the pain and fatigue in order to say yes to things I think will make others happy. Did you hear that? “I think make others happy”. I can’t confidently say the things I push myself to do are actually of value to others, it is a large self centred assumption I am making about the importance of my participation in their lives and at the end of the day I’m not responsible for anyone else’s happiness. So from now on it’s about weighing up importance/desire vs. health and saying no when I need to with graceful honesty.

Participating on my terms
This is where I get to be creative. I can’t always do the things friends and family are into. Noisy bars, dancing all night at clubs, concerts and even some movie and theatre venues are pretty much out (there is always the exception to the rule but…). The noise and the ‘not B friendly’ seating can cause me days of grief after the event. It’s not that I don’t want to be there, I often really really really do! But if my only memories are of pain and feeling ill and potentially someone having to look after me, well there really is no point of ruining everyones time. 

Recently my thoughts around how I participate have been expanded like a grow your own beach towel. I was invited to a girl’s night which was to end with the shaking of arses on the dance floor. The fabulous hostess didn’t want me to feel left out when I explained the dancing would be out for me. And so asked me write some ‘bar room challenges’ for them to do. And they could Facebook photos of them completing said challenges back to me.  For me this was a bit of a revelation in how I can participate from a distance. So this year not only will I say ‘No’ when I need to, I’m going to try and come up with alternative joyful ways to participate when the need arises.

Choosing joy over drudgery
More often than not, when my energy is low, I will choose the chore over a creative activity. I will choose the ‘should do’ over the ‘want to do’. What I have realised is I do this way more than is actually necessary. Okay there are something’s that just need to get done and they will, but some tasks can be put off. And so I will choose more often to put them off and do art instead.

Joy over drudgery also comes into play when doctors are involved.  The hospital system says you have an appointment in which you will receive medical advice. In most cases what I have is a time and place to be that may change at any moment right up to the day of the appointment. I can’t do anything else on a hospital appointment day because you never know how long it’s going to take and my limited energy means sitting for hours in uncomfortable hospital chairs is likely to make any other activity null and void. An appointment often goes something like this… I show up 15mins early as is required, I sit about for a long time (sometimes an hour or more), I eventually see a registrar or if I’m lucky a doctor for a short period time, I am maybe sent for some tests which result in nothing conclusive and no treatment because I’m 'very complicated'. 

In the past I have rescheduled my life time and again for these appointments. Prioritising them over everything else. NO MORE! Doctors appointments are important but I’m at a place with my health where I understand what is urgent and what is not and the out comes from these appointments are seldom life changing or positive and more often than not full of 'I'm sorry we can't help you'. And so I’m going to put my joy first each time. I will choose to reschedule them rather than reschedule the rest of my life. 

So there you have it. Selfish, Self-aware, call it what you will. Here's to a healthy and happy amazing year of awesome. 

What are your plans for the year?

Love B xox

Thursday, 12 September 2013

My Left Foot

My Left Foot: By Rebecca Fordyce 2013

My Left Foot has a mind of its own. For some time now it has been turning under. Some days it’s more pronounced than others. Some days it will stay flat. Some days it moves through phases of distortion like a plant following the sun. Everyday there is pain.

They took pictures of my Foot to see what they could see, and all that they could see, yes all that they could see was… bones, mountains and rivers.




They could not figure out why this left distal leg extremity was being so shifty. They gave me a brace with six straps that doesn’t fit in shoes to bring it into line. But my foot didn’t care; it wanted to have its way. The only way the brace could hold my Foot still was if I strapped it so tight there was no blood in it. This did not seem kind.

They sent me to a Neurologist to see if it was my Foot’s nerves that were animating it thus.

The Neurologist asked my Foot to do many things. My Foot was a stubborn circus pony; it would only do a few things. Then the Neurologist asked my foot again, this time encouraging it with gentle hands. It seems my Foot will move when handled by a professional.

The Neurologist asked me questions about my ‘tremors’. I told him how occasionally other parts of my body have minds of their own too. It can happen any time. When I’m sitting or walking, thinking or laughing, awake and maybe even sleeping?

Sometimes my mouth will not move, sometimes my eyelids flicker, sometimes my hands turn into claws, sometimes I have tyrannosaurus arms, sometimes my legs dance, sometimes my shoulders popup, sometimes my head jerks down to the left, sometimes I look possessed, always there is pain.

He said “This is Dystonia”.

My Foot and Leg contorted their agreement below my skirt.

I sighed and nodded.

He said “We can inject you with Botox which will help straighten out your foot. This is a very effective treatment but it can take up to three times to find the right spot. It is a great treatment because if it doesn’t work it wears off relatively quickly and if it works then we can give you an injection every 3 months to help your foot without the side effects you can get from medications”

My Left Foot liked the idea of joining ‘the beautiful people’ and wondered if it would be invited to walk a red carpet.

My Adipose screamed, “We will have none of that! This is a needle free zone as stated under the 2009 Treaty of Adiposes Dolorosa: Dercum’s Disease”

And so, I had to explain to the Neurologist about my Dercum’s Disease. “Just giving blood for a blood test means a new tumor. I’m not sure what would happen if we inject something into my muscle?”

The Neurologist looked concerned and said “Well, then we should try you on a medication first”

And so I returned to my home (Left Foot in tow) with a shiny new bottle of pills.
I had one dose… 
                               and then another… 
                                                                 and another, at the prescribed times
                                                                  ‘as directed by my doctor'.

My Chest said, “umm excuse me, it’s hard to breathe”

My Body said, “ Spas-MMM, SPAS-m, SPASM!”

My Foot said, “what’s going on?”

My Mind said, “I have talked to the committee and the general consensus is you are reacting to this medication”

I said, “Sigh”

My GP said, “That is unusual, maybe give it a rest for two weeks and try it again”

I said, “Okay”

My Mind said, “Let's look up the side effects”

I said, “Okay”

The Internet said, “YES! And by the way there is an increased risk of ovarian cysts”

My Ovaries said, “ Fuck Off! We are not having that drug again. We are already dealing with all we can handle with this endometriosis bullshit that (thanks to Adipose) we can do nothing about”

I said, “OKAY! Okay... okay”

My Left Foot said, “See, I knew I would get my way”

I said, “Let’s make a deal. I will promise to rest more, stretch more, hold you gently each night as I cover you lovingly in moisturising lotions and paint your toe nails pretty colours so you can feel glamours if you agree to help me walk for the rest of my life.”

My Foot said, “It’s a deal”

And yet …
                  there is pain.

Love B xox

Wednesday, 12 June 2013

I'm a duck!

I’ve been playing the Question and Answer game. It’s a game played by the surrealists back in the day, in which you write a question on a piece of paper, fold it and pass it to someone to write an answer without knowing what the question is. We played by post, my friends and I. What they didn’t know was they were helping me write a poem…

Who am I?

Who am I?
Come rain, ice, snow then sun, all will flourish.

Who am I?
Inside your left coat pocket.

Who am I ?
The hawk flies high; sees all, yet eats raw meat… 
And yet still it is happy.

Who am I?
The grapes grew too well, there were too many to eat and no one likes them.

Who am I?
Dear friend.

Who am I
Absolutely, Yes! I’m a duck, a duck, a duck!

Love B xox

P.s. thanks Cat xox :) 

Friday, 19 April 2013

…You’re only crazy if you answer back.

I’ve been hiding.

Sitting with the desire to create and the inability to do anything. My body and I are at war. I never meant it to be this way and so I’m working on a peace treaty. I will let it rest without stressing over what ‘I need to do’ and it will let me create despite pain. I will give it days off and it will let me go out of the house for more than groceries and doctors now and then.

I know at the end of the day my body will dictate what happens everyday of my life. But maybe, if we can stay in conversation we can live happily together for a long long time. This does of course mean I’m in conversation with myself…

… let the conversation begin.

All Images, Conversation 1 : Prayer flags 
By Rebecca Fordyce 2013

Love B xox

P.s. For those that gave me wonderful suggestions on what to write about, by way of thanks I give you Viking Kittens ... The Immigrant Song as animated by the lovely lads ;)