[ [ f e a t u r e d a r t i s t | a r t a n d w o r d s ] ]
"I'm an Australian artist and poet with 30 years of experience living with severe Fibromyalgia and ME/CFS. My mission is to inspire you to express and escape with creativity."
– Shiloh Moore • blog/website: www.byshi.hogfish.net • Facebook/Instagram @ByShi.art
V s c r o l l d o w n t o v i e w e x h i b i t V
[ [ p o e t r y • d r a w i n g s ] ]
Showcasing poetry and line drawings from Shiloh's book 'Stranger In The Moving Chair' published in 2004. Some of Shiloh's more recent poems have been included in the gallery below.
🔍 click on first image below to < view gallery > click on ✖️ at top right corner of image to exit gallery
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Can you tell us about your history with ME/CFS and your creativity?
I first showed signs of Fibromyalgia Syndrome and ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) as a 10 year old child in 1990, but doctors blamed my pain on ‘growing pains’ before diagnosis at the end of 1994. I thought everyone was in excruciating 9/10 pain all the time, but it must be a ‘taboo’ subject as nobody else complained so nor dare I. I taught myself to block it all out and only talk about it when it was critical (- often!). I was in constant pain by age 13 and have not had a moment with less than 6/10 pain ever since. Despite this, at school as a 14 year old I was a straight A student and achieved highly in six extra curricular activities as well. My lowest marks, the only ‘B’s and ‘C’ I ever received were in Art and English. Aged 14 I had to cut off my beautiful long hair because the weight of it gave me intense headaches and pain. Even pinning back the short hair that remained, hurt. I was forced to leave school aged 15 and I was bedridden, unable to feed or bathe myself for a year aged 16. I needed to be pushed in a wheelchair to leave the house for two further years.
When I was bedridden, I longed to communicate my profound thoughts and ideas. I wished for a computer to read my mind. My head hurt to think. So much so, I had to slow… down… the… voice… in… my… head. I had to stop listening to music because I choreographed dances in my head and even thinking of this movement made my body scream in pain. I meditated on the mantra, “I am ok… I… am… O… K.” During the day I was always extremely anxious, but for an hour or so each day during my worst 100/10 pain, as I meditated I was aware of the pain, but somehow I felt ‘held’. I knew I was safe and whether I was to live or die I would indeed be ‘ok’.
Still today I have to slow down my bombarding mind and meditate. To cope with this ‘sensory overwhelm’, I have to rest with no stimulus: no reading, no writing, no noise, no light or scents. I call this ‘wholehearted rest’. Wholehearted rest doesn’t take the pain away, (in fact sometimes it makes you realise just how unbearable your pain is!), but it is the only thing that helps. Even now, meditation is not always positive. Sometimes when I meditate I become aware of the 10/10 pain in the present moment and I am overwhelmed with darkness, fear and terror. Other people meditate on the present moment because their flashbacks to trauma are in the past. For me the trauma dominates my past and present and threatens my future. Other times I meditate and experience absolute transcendental bliss. I don’t experience much in between, benign day-to-day monotony and boredom are rare for me. Both states are exhausting!
As a teenager writing journals, letters, cards, poetry and art was my outlet. I created to express and escape and I was prolific. Then I suffered PTSD-like shock and could not do art or write for four years, as I associated it with pain and trauma. In 2004 I had a book of my poetry and line drawings self-published, ‘Stranger In The Moving Chair’. Then a friend encouraged me to do art therapy and this unleashed my artistic creativity. Then I joined an art group called ‘Creative For a Second’ for people with CFS around the world. This was before blogging and online sharing, so we hand drew in hardcover journals then posted them to the next artist overseas via snail mail. We were encouraged to create art even just for several minutes at a time, bit by bit mostly lying down, while carefully pacing. I loved it and built from there. I made, posted or sold several hundred handmade cards each year for several years. In 2012, I started a blog: www.byshi.hogfish.net with a New Years resolution to update an artwork a month for a year. Almost ten years later it has 174 original posts (though I haven’t posted regularly for a couple of years). In 2015 and 2017 I published collections of my artworks as calendars. In 2018 I bought my first iPad with Apple Pencil and my artwork productivity privately exploded!
Now I’m still extremely limited by my pain. My arms, back and neck hurt all the time. I need to lie down between 18-23+ hours every day. I can recline and draw on the iPad for 30-45 minutes but then need to wholeheartedly rest, and I cannot use my arms for several days, before drawing again. I recently had a ‘good patch’ of energy and I excitedly typed or drew for an hour every day for ten days. As a consequence the pain in my arms was so excruciating I could not draw or type for 6 weeks! Since childhood I have always blamed myself for doing too much or too little to cause my pain. I am only realising now that this is inappropriate, it’s not my fault. Others don’t experience this. I am now learning to reframe it. I’m severely limited, but I’m still prolific, as now I can do in half an hour what used to take me a month. Since 2006 I have relied on weekly specialist physio, ice packs on my muscles even through winter, and need several hours of wholehearted rest every day just to maintain any function.
I have prolific ideas for art and writing at all hours throughout the day and night, my brain never turns off (2am I always have ideas!). Great ideas come and I can see amazing artworks in my mind, that I break down step by step, to bring to real life. Every one of my positive mental-health artwork memes comes from hours of wrestling with profound anxiety, trauma, pain, angst and suffering. After thoroughly analysing the pain, wisdom comes to me that helps me transcend the pain, and I write and draw that wisdom. Every artwork represents a significant amount of both physical and emotional pain, and PENE (Post Exertional Neuroimmune Exhaustion – the cardinal symptom of ME/CFS) needing several days of wholehearted rest to prepare for and recover from, as well as being cathartic, fulfilling and well worth the effort. Art is my favourite form of therapy, but I need therapies and wholehearted rest to be able to do it!
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[ [ p a i n t i n g s • f i n e a r t • c o l l a g e ] ]
There is an analogy used widely by people with chronic illness and ‘invisible’ disabilities by Christine Miserandino called ‘The Spoon Theory’. Many people affectionately refer to themselves as ‘Spoonies’. In her analogy, spoons symbolise energy (also pain threshold). A person with chronic illness only has a certain amount of energy per day, so only a few spoons. Every task takes a varying number of spoons. Often, you don’t know how many spoons you will have throughout each day so you must be wise with how you spend them. To complicate things, at different times, the same tasks take varying numbers of spoons. If there’s something you have to do that day, you must keep enough spoons for the task. You might have to give up doing something else in order to have enough energy to do what you need to do. You learn to prioritise what you spend your ‘spoons’ on.
Many with chronic illness also use a phrase to sign off messages with – ‘I hope you are AWAP’. AWAP stands for ‘As Well As Possible’. So I came up with this artwork ‘Sending Spoons’ using Zentangle patterns on spoons, with the phrase ‘I HOPE U R AWAP’.
I like to say ‘I hope you’re going AWAP’ with the emphasis on emotional well-being rather than physical health. I am realising now, since childhood I have put pressure on myself to live up to misinterpreted expectations and have felt pressure like I am disappointing people by never living up to their wish for me to be physically well. Like being sick is wrong and naughty. Also, you can still be very sick but be happy, just as healthy people can be physically healthy, but not coping emotionally. I feel of the two, it’s more important to be happy! So I like to say ‘I hope you’re going AWAP’ to everyone. One support person replied to me he is ‘ebtAWAP’ – even better than AWAP! I loved that!
– Shiloh Moore
above – SOUL FRIENDS – Ket and Shi
Meeting my bestie of five years for the first time. I was finally well enough to ‘choose my pain’ and travel by car for two hours to meet Ket in person in her nursing home. Previously we wondered if we would ever meet. It was amazing! She’s amazing ❤️ Ketra's Story 'After Unrest' can be watched on YouTube.
below – SOUL FRIENDS – Jenn and Jess
Jennifer Brea and Jessica Taylor from the documentary ‘Unrest’ (on Netflix) meeting in person for the first time.
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Was there a difference growing up with ME in the 1990’s compared to now?
Leaving school aged 15 there was no internet, so when I left I lost all contact with acquaintances and relied only on friends’ home phone numbers. I was the most severe case we knew about apart from Alison Hunter, a 19 year old South Australian girl who died of CFS in 1996 when I was completely bedridden. Death was a very real possibility, and it was isolating and scary. I journaled everything, but I appreciate my privacy now, and am glad I did not blog it all. There was barely any way to meet up and advocate so I instigated fundraising but there was very little awareness or funded support. I was a lone ranger with my advocacy, but after diagnosis I was respected and it was always well received. The pervasive belief people with ME fake illness to claim sickness benefits was rife in the 90’s. My first advocacy was a letter to the editor aged 15 ‘we’re ill, not faking it’ pointing out I was not even old enough to claim the Disability Support Pension. In response to my advocacy people often told me how important my story was.
In 2021 we still have no diagnostic marker let alone treatment or cure. We still have to prove we are not welfare cheats, are discriminated against and have to fight for our basic human rights and needs to be met. But now there is irrefutable biological evidence of physical incapacity. There is still ignorance and neglect but with the internet thousands of us can connect, and campaign for change even from our beds. This has been empowering, but being in contact with millions suffering worldwide has also been empathetically overwhelming for me. I’m learning to take breaks from advocacy, choose how much I share and delegate difficult tasks to allies. It’s absolutely devastating that Long Covid is causing ME-like illness in the general population. I can only hope that from this, research will spill over into greater understanding and acceptance of ME. Covid lockdowns have made my healthy friends more aware of what it’s like to be housebound and unable to reliably plan and to miss out on much loved activities. Increased online access and internet modes like zoom and Telehealth have been inclusive and life enhancing for people with ME. It’s a scary time for all of us, and I would like to inspire people to tap into self expression and creativity. I encourage you to do art, music, writing, journaling, even if only bit by bit within your capability. Expressing our suffering and focusing on hope, creativity, strength and light will help pull us through tough times.
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[ [ e a r l y i l l u s t r a t i o n s • q u o t e s • p o e m s ] ]
🔍 click on first image below to < view gallery > click on ✖️ at top right corner of image to exit gallery
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What were your ambitions and how have they changed?
I desperately wanted to be a mother, career woman and flautist. I wanted to make flute funky like Tori Amos made the piano. I have never even been able to hold up my beloved flute, will never be a mother, and I have never had any traditional paid job. However, I published a book aged 23, and most importantly I love being a friend, aunt, mentor, connector, artist, tireless advocate, deep thinker, spiritual explorer, master meditator and my life very much has meaning and purpose. Life is still fulfilling.
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[ [ n e w a r t & d e s i g n f o r m . e a d v o c a c y ] ]
ME Action Network Australia #MillionsMissing Pop Art Thongs Logo - 2018
Logo for ME Action Network Australia’s #MillionsMissing campaign 2018. Empty Aussie thongs represent approx 250 000 Australians missing from activities due to ME/CFS. Note the directionless children’s shoes in the bottom right hand corner.
#MillionsMissing 2021 - Living with ME/CFS - Lying down Series - 2019
(First drawn 2011, redrawn 2019, Published for #MM 2021).
I have had severe Fibromyalgia Syndrome and ME/CFS for 31 years. I have needed to lie down between 18 and 23+ hours every day for decades. Though I drew this in 2019 I did not have the energy 'spoons' to post it publicly until 2021.
IN PAIN – I have NEVER been pain free in 31 years. I need to lie down most of the time and for several hours a day this needs to be wholeheartedly resting, totally unstimulated. Not doing anything. Although resting is best, even in stillness my body feels like it’s burning alive in pain.
IN BRAIN-FOG – my brain hurts. For several hours every day all sensory input overwhelms me. It hurts to think, my usually bright and intelligent brain is overwhelmed by even the most minor stimulus. During lockdown, able bodied people can entertain themselves by doing things in the home. Most of my days I need to wholeheartedly rest, unstimulated.
TEXTING – Texting is my main mode of communication, but it hurts to type and reading screens hurts my eyes.
SOCIALISING – I can rarely go out and sit up long enough to socialise for long in public, so most of my social contact is via phone call.
TALKING – I prefer phone calls to video chat, so I can close my eyes and not look at the screen or be seen. Talking on the phone is my favourite activity (though nothing beats in person visits and hugs from friends!). Telehealth during COVID-19 has made essential appointments with doctors achievable and is something I have campaigned for years!
LEARNING AND WRITING/DRAWING – I need to lie down most of the time to use the computer and to create art or write.
READING – I have to limit reading as it hurts to hold books and my eyes hurt to read. Most of the time I struggle to comprehend or remember what I read.
LISTENING – When I was well as a kid I used to choreograph dances in my head when I listened to music. For the year I was completely bedridden aged 16, I had to turn music off as even imagining movement would trigger extreme exhaustion and pain payout. Now I can enjoy listening to quiet music for some time each day, but I still need silence for several hours of the day to recover as I feel physical pain and drained by the stimulus. ‘Sound sensitivity’ also means I am always drained of energy by certain sounds – like: background noises, wind chimes and air conditioners.
SITTING UP – is extremely painful, and so is sitting up in a wheelchair. It doesn’t make sense, but I actually feel more able to walk a short distance then lie down or sit briefly, rather than sit up in a wheelchair for long periods. You may see me for a moment upright and appearing healthy, but most of the day I need to lie down.
Living with Fibromyalgia – 2021 (First drawn 2011)
I have NEVER been pain free in 31 years. I need to lie down most of the time – and for several hours a day this needs to be ‘wholeheartedly resting' – totally unstimulated. Not doing anything. Although resting is best, even in stillness my body feels like it is burning alive in pain. I am always in pain, all over my body and it is always changing presentation. It is totally unpredictable.
Living with Brainfog – 2021 (First drawn 2011)
My brain hurts. For several hours every day all sensory input overwhelms me. It hurts to think, my usually bright and intelligent brain is overwhelmed by even the most minor stimulus – physical, cognitive or emotional. Most of my days I need to ‘wholeheartedly rest’ – unstimulated. Slowing down my mind with mantras and chanting helps.
I heartBREAK NDIS - Drawn 2021. First published Anonymously by ME Advocacy Network Australia (MEANA) May 12 2021
For #MillionsMissing ME/CFS Awareness Day 2021, I created my own interpretation of the ‘I Heart NDIS’ Logo which I shared anonymously through ME Advocacy Network Australia (MEANA). I thought of ‘I heartBREAK NDIS’ in 2017 when I first started to prepare for the NDIS and was heartbroken by the process. Seeing the ‘I heart NDIS’ logo everywhere felt insulting as in my experience applying for the NDIS, was far from love. My case was complex. I spent 3 years applying for and fighting for adequate funding. At one point they cut off all the care I had received for 12 years and left me with nothing but funding for an OT report. I was left bedridden with no care and I was the most traumatised I have ever been. An officer at the NDIA CEO’s office apologised for my treatment twice after my advocate went to ministerial intervention on two separate occasions. Now I have amazing care – it’s been transformative. However, navigating the system and organising care is challenging. I still now fear having to fight for continuation of that care at future reviews. The ongoing anxiety is heartbreaking.
In my case several issues caused my heartbreak, including:
• An inability to communicate my needs in their complex, exclusive language. My doctors and therapists spent many unpaid hours writing reports and their words were not listened to or respected and were sometimes even used against me.
• My case was complex with ME, Fibromyalgia and coexisting conditions the NDIA insisted were the responsibility of the health department. The health system does not help with disability needs therefore people with disability caused by health conditions fall through the cracks of both departments.
• Care does not build my capacity to reduce my disability needs into the future. My needs are ongoing for life. I fear having to prove this over and over again and having the threat of this essential care being taken away in future.
• Having to share intimate details about traumatic experiences in my life brought up profound shame and trauma. Having to prove my disability in great detail over and over and prove it was permanent, that I didn’t have enough support and prove my needs were unmet... To the NDIA it was just paperwork, to me it was PERSONAL.
• The way my friends, people with ME/CFS and other disabilities have been treated is traumatic and appalling. Rather than enabling more socialisation like the scheme is meant to, I have had to cut off supporting many friends as I cannot cope with the suffering. It’s heartbreaking.
In 2012 there was an NDIS Rally in Brisbane, campaigning for the NDIS. A charity my friends ran, Change For ME, organised for 13 of us with severe ME to attend the rally by displaying our portraits and stories on a banner. None of us were well enough to attend the rally in person, but we wanted to be seen, heard and included in the rally campaigning for much needed care. Nine years later, all 13 of us are still severely disabled due to ME. To my knowledge, none of us were accepted into the NDIS for ME alone and each of us has had to fight for care, despite our high hopes when campaigning for the scheme. I don’t know specific details because I had to cut off contact with many from the group as supporting them through their own struggles applying for NDIS care was too heartbreaking for me to cope with. I have had to pull out of all support groups, except I remain following one facebook group that gives important tips for people with ME navigating the NDIS. Every day in that group, people with ME share their stories of neglect and abuse by the NDIA and NDIS system. It beggars belief. I need tips on how to navigate my own journey, but seeking that support is traumatic and heartbreaking because of the collective suffering.
In May 2021 MEANA published my artwork ‘I heartBREAK NDIS’ to share my experience and protest NDIS Independent Reviews. I chose to remain anonymous as I felt profound shame, fear, extreme vulnerability and was terrified to talk about my experiences with the NDIS publicly. I am still very anxious to put this artwork ‘out there’ and don’t want to talk publicly about the NDIS and the heartbreak it causes. But it’s been a significant part of my life and with the weight of all my supporting artworks in this collection, I feel it’s an opportunity to stand up and share my heartbreak. It is heartbreak shared by many others with disabilities, and most of the general public have no idea of what we go through.
My heart breaks for myself, for the ME community and for all with disability struggling with the system.
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What is your inspiration for your art?
I’m inspired mainly by two E’s with the option of two C’s:
E) To EXPRESS my pain and describe and put it into words and art. This releases me from the pain and makes it into a depersonalised story or piece of art separate from myself. It no longer holds power over me.
E) To ESCAPE in beauty, joy, wisdom, wonder, awe, connection and love.
C) Then I can choose to COMMUNICATE to others and share if I wish. Art and words can be powerful tools for education and to describe to others experiences I otherwise don’t have words to express.
C) I love to create to CONNECT with others, with no expectation of anything in return. I trust they will pay it forward. I get back ten times what I give out.
A friend and Uniting Church Minister, the late Rev Evan Jones taught me the meaning of the Hebrew word ‘healed’ in the bible does not mean ‘cured,’ rather ‘to be made whole’. I love this as I am spiritually whole as I am. I don’t need to be cured to be worthy. I share my creativity because I believe to inspire someone to create is to inspire them to heal (be made whole) and grow.
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[ [ r e c e n t p o r t r a i t s ] ]
🔍 click on first image below to < view gallery > click on ✖️ at top right corner of image to exit gallery
▶️ press play on portrait below to view and listen to Shiloh's Compassion Prayer
Compassion Prayer – Self Portrait | 2021
‘This is my Compassion Prayer For Humanity:
Power and Strength
Hope Grounded in Reality.’
Over the three decades that I have been living with severe Fibromyalgia Syndrome and ME/CFS, I have had to develop ways of coping with the illness such as ‘wholehearted rest:’ resting with absolutely no stimulus. Even thinking at a normal pace is painful as my head is bombarded with pain and overwhelming stimulus, so to slow... down... my... mind..., I meditate on mantras and chanting in my head. In 2020, my incredible mentors Alexandra Westaway and Rev Simon Ruth De Voil taught me to write my own chants. I was overwhelmed with my own suffering and the suffering of my friends, the disability community, and the world, so I wrote this chant and body prayer that I can do even when bedridden.
For this chant, I hold my forehead with one hand, and sing in my head ‘Power and Strength’, feeling strength enter my body through my hand. Then I rest my other hand on my heart and sing in my mind ‘Hope, Grounded in Reality’, feeling compassion and hope pour into my heart and into the world. Then I repeat chanting over and over in my mind, slowing it down to meditate on it, sometimes for hours.
I drew and lettered this self portrait, brush lettering my prayer on my arms. The way I am holding the globe shows Australia (where I live) under my arm in green and gold, the North Island of New Zealand as a red love heart, and you can see my friends in India just under the word ‘Hope.’
It sucks that I can’t be out in the world, involved with friends and doing things I love. This prayer and chanting is something I can do, to feel involved with my friends even from my bed.
Kaleidoscopic Sky Gif – Self Portrait | 2019
This is a self portrait of my inner spirit, the comforting wise companion part of me I call ‘Sky’. My mind is constantly bombarded with ‘sensory overwhelm,’ pain, anxiety and sheer terror. This sensory input presents even when I close my eyes, like I am attacked by a kaleidoscope of vivid, rich, crazy, exhausting colours and stimulus. ‘Sky’ saves me with comforting wisdom, art and music ideas, she highlights the beauty of existence, connects me to the universe and brings me peace. This portrait is of me ‘wholeheartedly resting,’ blocking out the bombarding stimulus and feeling connected to the cosmos through ‘Kaleidoscopic Sky.’
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How is your art set up so you can accommodate your illness?
• I create lying down, and only sit up to draw good copies.
• I have a notebook with me everywhere, to jot down words and ideas as they come to me, to save to do when I am strong enough.
• I limit my artwork to a maximum of A4 size.
• I started with line drawings, then watercolour. Watercolour is challenging but great for pacing because it needs to be done in stages. I couldn’t colour in with pencils as the pressure hurt my hands, arms and neck too much. Watercolour was gentler, though I had to limit doing it as I needed to sit up.
• Then friends inspired me to make cards from mixing patterned papers with stickers and using a guillotine, glue sticks and cardboard templates of different sized rectangles. I became so fast I would make 10 cards in an hour. Playing with papers was so exciting, calming and therapeutic. Buying supplies was addictive (!) and sharing was special.
• Now I mainly create using Procreate on the Apple iPad with Apple Pen. I enrolled in an amazing lettering course by Liss Amyah and have never looked back!
• I use dictation software on my phone, or dictate to a carer or friend to write.
• I use a Levo stand to hold my iPhone and to hold my iPad above me for zooms, and use the iPad above me with a keyboard on my lap to type while lying down.
• I also have a stand for my laptop so I can lie down and touch type.
• I laminate prints of my art and favourite writing so I can enjoy looking at it in bed.
• I use Google Docs to write using my phone, iPad or computer and share, dictate to, edit and write with friends in real-time.
• I have a printer set up wirelessly to my phone and iPad as well as computer and I print drafts to read from paper as my eyes hurt to look at screens.
• I can’t remember lyrics to songs, listening to music can be painful and I can’t physically play an instrument or even sing out loud often... but I can sing simple melodies and chants in my head and meditate on them to slow… down... my... mind… as I wholeheartedly rest. I desperately long for more, but in a very limited way, my life can still have music. It’s in my blood.
I don’t create with a massive project in mind. I just start small, and bit by bit build until I have a collection of works I can then use for a significant project.
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[ [ r e c e n t i l l u s t r a t i o n s a n d w o r d s ] ]
❀ Art and Quotes ❀
Illustrations and Words created with an iPad | Artist Statement
I Support You – 'I don't understand, but I believe you and I support you' – These words are a sign of a great doctor / therapist / care worker / friend.
False Wellness Beliefs – For decades psychiatrists have blamed patients with ME/CFS as having ‘False Illness Beliefs’ and faking illness. My friend Simone suggested we instead have ‘False Wellness Beliefs’ and live in denial of our pain, fatigue and many limitations and power on accomplishing extraordinary achievements despite them, triggering payout and Post Exertional Neuroimmune Exhaustion (PENE) from our very real illness.
You Can and You Are – In a dream I was a toddler, bawling and crying out ‘I can’t, I can’t…’ and words came to me, ‘oh but my darling, you can and you are.’
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What can people/society do to help people with ME and how have you coped?
A) Firstly, I want doctors, therapists, care workers and the general public to be informed of the latest biomedical research and awareness materials they can find through Emerge Australia. (Please also donate to Emerge.)
B) The best thing anyone can say to a person with severe chronic illness is “I don’t understand, but I believe you and I support you” (See first art quote in above gallery)
C) The NDIS and Centrelink absolutely need to recognise ME and Fibromyalgia Syndrome for the profound disability it causes. Because of my disabilities I can’t ever become a paralympic athlete. I can’t use funding to drive me to attend physical art classes and to go out on regular social outings. I need funding to get my basic physical essential needs met. I need home help, support with mobility, regular physio, podiatry and therapies ongoing for life just to maintain basic function. I should not have had to fight for three years to access an appropriate level of support for another coexisting condition, and I should not need to fear a threat of this care being reduced or taken away. People can have a health condition but also be in need of disability support. The health system does not cover disability needs and at the moment people with ME or other health conditions causing disability, fall through the cracks of both systems.
I am incredibly grateful to live in Australia with support from the Disability Pension, public health system, Medicare and the PBS my whole life, which has literally saved my life several times. I am very aware of and appreciative of that privilege. It has allowed me to live with the bottom rungs of Maslow’s Hierarchy of Needs: safety and security, met. This has enabled me to live in self actualisation, until my care was taken away by NDIS and those bottom rungs were removed and threatened. It was devastating. Now I have amazing support, I have been able to rebuild my life and start to feel safe and at peace once again. However I continue to have extreme anxiety and fear about my ongoing needs and extreme vulnerability. ME and Fibromyalgia need to be recognised and supported, and applying for NDIS care should not be the most traumatic experience of my life.
D) For the NDIS and any government assistance, continually having to prove what you can’t do, what you don’t have, how your needs are not met and proving your disability is permanent, over and over again is absolutely traumatic. In my thirty plus years of experience with ME and Fibromyalgia Syndrome, I have coped by focusing on the opposite: focusing solely on what I still can do, living with gratitude for what I have, accepting my situation and doing my best to adapt and not let the disability take over and control my life. Living my life to the full despite and with disability. Encourage us to focus on our abilities, not our disability. ME and my other conditions do not define me.
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❀ Dark Night of the Soul Artworks ❀
* strong language warning *
Dark Night of the Soul Artworks created with an iPad | Artist Statement
DANCE POEM – Written 23/3/2019 when I lost all disability support funding, then two weeks later received the first apology for my treatment by the NDIA
SPIRALLING (‘FUCK!’) – 23/9/2019 My all-time favourite artwork for its honesty: spiralling out of control with anxiety, depression and anger – creating a beautiful abstract floral-like black and white mandala from repeating the word ‘fuck’ eight times in a spiralling pattern using the‘Symmetry’ feature in Procreate. Drawn at the time leading up to the NDIA CEO officer’s second apology for my mistreatment.
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May I ask what’s it like to live most of your life isolated and in bed?
Absolutely. My house is a gallery of my artwork that I love to look at. For several hours every day and all day when severe, I need wholehearted rest. Much of this time I live ‘out of body’ and block out my pain and the outside world and live in my mind. I live absorbed in my thoughts working through my traumas, pondering life itself, exploring art, music and writing ideas, and I meditate on mantras, chants and visualisations to escape and transcend the pain. Sometimes when I meditate I go to dark places, but wisdom and comfort come to me and help me through. At times, I live beyond my body and my ‘self’, connected to the cosmos, safe in other realms. I love my friends thinking of and praying for me so I can live in their hearts and be present in places all over the world even if I can’t go out with them often and be there in person. I profoundly feel my friends with me, within.
My life is still fulfilling even living mostly in bed.
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❀ Life Goes On Artworks ❀
* strong language warning *
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What main message would you like to convey?
Especially with Covid-19 threatening the healthy population, people fear living with long-term chronic illness and disability. Indeed it is torture, and I wouldn’t wish it on anyone, but I want to reassure you, even being bedridden, life can still be worth living. No matter how we are forced to live, we have worth. I desperately want a life beyond just ME and my other diagnoses. ME is not all of me. Illness, disability, pain and discrimination may be my current life situation, but they are not my life itself. I choose to live!
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For more art and words by Shiloh Moore, please visit her blog/website: www.byshi.hogfish.net
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Emerge Australia is a national organisation providing information, support and advocacy for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our work gives hope and help to more than 250,000 Australians living with ME/CFS.
The impacts of ME/CFS can be devastating, leaving 25% of patients housebound or bedbound, with many people unable to work or participate in community life. People living with ME/CFS often feel invisible due to the unknown cause of the condition, lack of effective treatment options and limited community awareness, leading many to 'go missing' from their own lives.
In order to continue our essential work, Emerge Australia relies on generous support from the community as we continue to lobby for increased public awareness and funding for biomedical research.
If you're unable to donate at this time, please share this exhibition widely to help raise funding and awareness for ME/CFS, which is in desperate need of biomedical research and support.