First published 2008 Publication © 2008 Kirrily Anderson Images © 2008 authors (as stated) Written word © 2008 authors (as stated) All rights reserved. No part of this publication may be reproduced in any form or by any means without the prior permission of Kirrily Anderson or the artists.
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collated & designed by
kirrily anderson
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CONTENTS
Foreword by Leigh Hatcher
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Introduction by Kirrily Anderson
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It’s Not About Sleep the facts about CFS/ME
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Step Into Our Worlds the creative collection
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Tell Us You Love Us! artist contact details
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Thanks a Million the special ones who helped
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Off Load Online links for online support
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FOREWORD by Leigh Hatcher This book is about the triumph of creativity over adversity. It is the product of a remarkable world wide community. Many of the people represented in these pages came together through an online forum relating to Chronic Fatigue Syndrome, born out of a humble book I wrote in 2005, ‘I’m Not Crazy, I’m Just A Little Unwell’ The ‘notcrazy’ forum is a truly remarkable place. Hundreds of people from around the world, dealing with the very real and debilitating CFS, have joined together online (and often in person) offering support and acceptance, help and hope. There is much wisdom, insight, tears, laughs and love. It’s an entirely new concept of ‘community’. Most of these people have never met each other, many haven’t even revealed their real name or where they live - yet the connection they share is deep and intimate. Many speak most movingly of the lifeline this connection has been for them in the midst of a debilitating, alienating illness. This book began with the inspired determination of the marvellous lady we only know as ‘Kirrily’. Her courage and creativity is an inspiration to us all. One day she simply floated the idea of this book on the forum and the response was overwhelming. It should also blow away the mistaken notion that Chronic Fatigue Syndrome is a lazy person’s illness, a cop out, or a freak out. These are people who every
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day yearn to regain lives and opportunities lost to this dreadful CFS. They hate the terrible loss involved – the physical, relational and material. Their stories of battling on, making the most of what they have, are so often so heroic. You’ll see it and be inspired by it as you read this magnificent book. On these pages they demonstrate powerfully how they deal with the scourge of CFS through creativity. An artwork, poem, photograph or some simple thoughts expressed - all show how their light shines, even when the days are dark. They are all my heroes and they’ll offer great inspiration to everyone – ‘in sickness and in health’. Enjoy!
Leigh Hatcher.
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INTRODUCTION by Kirrily Anderson “Just as each of us benefits from physical exercise and meditation, even though we may not become professional athletes or enlightened yogis, making art is intensely cathartic and healing, and should be enjoyed by everyone...” Alex Grey 12/07/2005 - Journal excerpt, 5 months into my CFS/ME journey. “I’m going crazy... every night is the same. Why can’t I sleep? Everything from the hips down is aching, my thoughts are running a mile a minute and my head is so awake. When is this going to be over? Am I not making enough effort?” The last thing I wanted to do during the first six months of my CFS/ME journey was to be creative. I would lie in bed staring at the technology that to me used to be an amazing design tool, and wonder if I would ever creatively bond again with my faithful Mac - its only use now to play soft music, its possible destiny to remain an over priced, oversized and overpowered iPod. I shuddered to think... For the first 12 months or so of my illness I felt confused and separated from my body. I spent a lot of time and money trying to heal and just to understand what was happening. It was about 7 or 8 months into my journey when I could finally manage my energy levels to a point where I had some energy spare to use creatively.
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At first it wasn’t a lot of energy, but as my management of it improved I began to spend more and more time creating. It became a therapy for me, healing the soul if nothing else. Some days I could only spend half an hour drawing, other days I could lose myself in a creative piece for hours. It was a meditation and an escape from the bindings of CFS/ME, and it was during this time I realised I wasn’t alone when it came to finding a sanctuary in creativity. I noticed many people in my online support group also expressed themselves through art... and they had talent! I thought to myself their art would make a great collection and at the same time spread some awareness of the illness. It wasn’t until many months later that I was well enough to process this idea a little more and able to share it with others in my support group. So many of them were thrilled and excited at the prospect of having their work shared with the rest of the world in the form of a book that I decided it had to be done. I approached other CFS/ME based forums around the world, as well as many artistic websites to find others who would be interested in contributing. Once again the response was overwhelming and so the project grew. In the following pages you will find creative pieces from all over the globe. There are also many sufferers out there who sadly missed out due to the severity of their condition at the time.
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Everyone who has contributed to this collection of works finds some comfort in what they do. Some have only discovered their creative outlet since becoming ill. Others, like myself were creative prior to CFS/ME, but have discovered another side of it since the onset of their illness. One of the reasons for putting this book together was to show the world that people with chronic illnesses are not invisible. Sufferers are doing all they can to lead normal lives. Some would be out there promoting themselves as artists if it were not for the constraints CFS/ME. I’m proud and happy to be able to promote these people through this book. Creative expression shows us honesty within the artist. This is a book of truths, spoken through the artwork of my friends and fellow sufferers. I am immensely proud of everyone who has contributed. I have been fortunate enough to have improved tenfold since the beginning of the project, but I know that others have been through difficult times and just getting their contribution to me was a huge achievement. Some of the work you see in the following pages may be available to purchase. If you like what you see or are interested in buying artwork, please let the artist know, you will really make their day. I hope the creative talent showcased here brings you joy and that this small glimpse into the lives of sufferers of CFS/ME helps spread awareness.
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IT’S NOT ABOUT SLEEP They started documenting it in medical literature in 1934 and in 1969 Chronic Fatigue Syndrome / Myalgic Encephalomyelitis was classified in the WHO ICD-10 as a neurological disorder. It affects, on some level, every system in the body. If you were to have a big night out which involved copious amounts of alcohol and a cocktail of other toxic substances, a bar brawl, a three hour walk home and two hours sleep in a sand-pit, you may start to understand the feeling of a CFS/ME patient - but of course you would have to do that every night… In 1988, what had previously been known as Myalgic Encephalomyelitis was re-named ‘Chronic Fatigue Syndrome’. Currently both names/descriptions may be used, along with a host of variations alternatively, they all may be used interchangeably. Confused yet? Wait ‘til you start reading about the symptoms. Generally CFS/CFIDS is used in the US, while ME is preferred by most of Europe, Canada, Australia and New Zealand. Worldwide, FM (Fibromyalgia) is another term often used in conjunction with CFS. Some say that it is the same illness, others argue that it is a separate condition. Fibromyalgia is primarily concerned with muscular pain, incorporating fatigue. In short, no one knows what causes CFS/ME and no one knows how to get rid of it, but there are plenty of theories, lots of research and vague guidelines starting to fall into place. Published studies continue to demonstrate that the basis lies in abnormalities of the central nervous system and immune system. Many experts believe that
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viruses are associated with CFS/ME and may be involved in it’s cause. Up to 85% of people with CFS/ME experience a sudden onset directly after infection, chemical exposure or traumatic life event. Just as no one knows what causes CFS/ME, no one really knows how to define it. In 1994 a definition was drafted by an international panel of experts. They decided that in order to receive a diagnosis of CFS/ME a patient must satisfy two criteria: 1. Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis (yep, this means waiting around for 6 months, feeling crappy while doctors do extensive tests only to tell you in the end what you suspected to be true all along); and 2. Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. (More often than not most of the above). Due to the huge list of symptoms, there are plenty of other illnesses which cause feelings of fatigue and these need to be ruled out before a diagnosis can be made. Despite the “dirty-hangover-been-in-a-bar-brawl-and-had-twohours-sleep-in-a-sand-pit” feeling you are experiencing every day, you find you have never been busier in your life.
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Everyone in the doctors’ surgery knows you by your first name, your Medicare card has been swiped so many times the plastic is wearing thin and your mum has driven you to so many places to see so many “experts” she is considering starting a taxi service (may as well get some fares while doing all that driving around). The first 6 months is a long, frustrating an often traumatic time... that’s if you’re one of the lucky ones who manages to squeeze a diagnosis out of a doctor in as little as 6 months. Once you have a diagnosis you can then concentrate on tackling the copious amounts of symptoms - one by one. Seemingly there is a pill for everything, sometimes two or three pills - which taints meal times slightly… a pill, a mouthful of food, a pill a mouthful of food. Appetites are not lost my friends they run away. Symptoms are wide and vary unpredictably from week to week, day to day, patient to patient. The bad boys are:
• Extreme exhaustion lasting more than 24hrs after physical
or mental exercise
• Loss of memory or concentration
• Sore throat
• Painful and mildly enlarged lymph nodes in your
neck or armpits
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• Unexplained muscle soreness
• Pain that moves from one joint to another without swelling or redness
• Headache of a new type, pattern or severity
• Sleep disturbance
But that’s not all folks: in addition the following symptoms are “unofficial”:
• Abdominal pain
• Allergies or sensitivities to foods, alcohol, odours, chemicals,
medications or noise
• Bloating
• Chest pain
• Chronic cough
• Diarrhoea
• Dizziness, balance problems or fainting
• Dry mouth
• Earache
• Irregular heartbeat
• Jaw pain
• Morning stiffness
• Nausea
• Chills and night sweats
• Psychological problems such as depression, irritability,
anxiety disorders and panic attacks
• Shortness of breath
• Tingling sensations
• Visual disturbances such as blurring, sensitivity to light,
eye pain and dry eyes
• Weight loss or gain
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CFS/ME also causes complications and SECONDARY symptoms such as:
• Depression (related to both primary symptoms and lack of diagnosis
and treatment)
• Side affects related to medications (due to sensitivities)
• Side affects related to lack of activity
• Social isolation caused by fatigue
• Lifestyle restrictions
• Missing work (yes, possibly for the first time, people are craving
the 9-5 existence) For a person with severe CFS/ME, a simple task such as doing the dishes, having a shower, holding a long conversation or making a gluten free, dairy free, sugar free, taste free, low GI, high protein and don’t-forget-the-pills snack (have I mentioned the dietary recommendations?) can be enough to trigger a relapse or severe worsening of symptoms. It is easy to see why CFS/ME has been described as being “more debilitating than just about any other medical problem in the world.” Tragically, suicide rates are high and seem to be related to the current climate of disbelief and rejection and inability to receive adequate support and services. An infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Sciences University, testified that a CFS/ME patient, “feels effectively the same every day as an AIDS patient feels two weeks before death.” Treatment is more about relieving than curing, with trial and error the most effective (for want of a better word) method. Even then, successes can be
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minimal and are individual to each case, as what works for one patient will not necessarily work for another. The duration of CFS/ME varies hugely. Some patients are able to resume work and other activities, though generally not without some symptoms - therefore being unable to regain previous levels of productivity. Studies show that only 6-10% of adult patients who have been symptomatic for 5 years or more experience a full recovery. To be struck down with CFS/ME when you are leading a reasonably healthy life is a huge shock. The doctor’s can’t explain it, the alternative therapists can’t explain it, specialists can’t explain it - no one can explain it: yet you feel it in every part of your body - the worst hangover of your life…
References: www.ahmf.org, www.cyh.com, www.cdc.gov, www.betterhealth.vic.gov.au, www.mayoclinic.com
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Being disabled with ME has really taught me to set priorities. I have learned the important things in life are the people you love, and not to pay so much attention to the ‘background noise’. My hobby with digital photography details that are important to me. I enjoy losing myself in a project for a little while, then ending up with something meaningful to me. It’s something I enjoy that being disabled has not taken away from me.
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SRS • United States of America • CFS since 1999 • ‘Shadows At Ground Zero’ • 2005 • photograph
and photo editing allows me to focus on the
SRS • ‘Castillo San Cristobal Puerto Rico’ • 2000 • photograph • opposite: ‘Nikolai Reflecting’ • 2003 • photograph
In 1992 when I was struggling with increasingly intolerable symptoms, not knowing what to do, I asked myself in desperation, “Must I give up my work and my income, sell our house, leave our whole lifestyle?” The answer that came to me, with utter conviction, was, “Unless you do, you’ll never find your heart’s desire.” Well, I’ve lost almost everything that recovered at all physically; but I’ve found my heart’s desire - creating needleart. Drawing, playing with design ideas, choosing materials and, especially stitching, I am joyful. ME/CFS has liberated my creativity.
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JoWynn Johns • 70 • United States • CFS since 1992 • ‘Crazy Patchwork’ • 2006 • needlework
once made my life meaningful, and I haven’t
Ever since I was a kid, painting always had a way of taking me to a place where time and space do not exist, where I have not a worry or care in the world. In 1993, when I was forced to face an incurable, most misunderstood and prejudiced-against Jasmine “Jazzie” Stoughton • USA • CFIDS since 1993 • ‘Bird Songs’ • 2006 • watercolour on rice paper
illness (CFS/ME), I knew that art would be the effective ‘therapy’ and spiritual anchor for me to deal with the daily challenges of CFS/ME. ‘Bird Songs’ symbolizes our flight to ‘live’ our lives, instead of merely existing with CFIDS.
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I am not my illness. But without my illness... WHO AM I? I am not my creativity. But without my creativity...
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Naomi Lawler • Australia • CFS/ME since 2004 • ‘Identity’ • 2006 • acrylic on paper
WHO AM I?
I bought a camera some time after getting sick and began photographing everything. Seeing the world through a viewfinder is a humbling and educational experience. I’m learning to really appreciate simple things and see the beauty in God’s creations, regardless of my condition. Water, sand, rocks, the sky; I don’t think it gets much more simple, or more beautiful.
Michael Godfrey • 26 • Australia • CFS since 2004 • ‘Protected’ • 2006 • photograph
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‘Goodbye Horizon’ • 2006 • photograph
‘Lake Tuggeranong’ • 2007 • photograph
Art has always helped me to deal with the difficulties in life and my illness was no exception. I have had CFS for over five years now and my life has changed a lot since I became ill. Alies Meerman • 32 • The Netherlands • CFS since 2002 • ‘Jack In The Green’ • 2006 • mixed media
Although many doors were suddenly closed to me, it has also given me the chance to explore other directions, other paths in life and my art has been instrumental in that. It has opened my eyes to a different side of the world and although I am still ill, my life is now better, more beautiful than before. Being creative enriches your world.
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Fairy • 2006 • gouache on paper
Koi • 2006 • copic pens on paper
I feel good when I ‘accomplish’ something worthwhile. Like the painter can express through their artwork, I can express my feelings by putting them into prose or poetry.
Paulette McDonald • Canada • CFS since 1999 • ‘New Year’s’ • 2007 • written word
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NEW YEAR’S A brand New Year given to us A chance to start anew The last one gone into history What did it hold for you? Last year has finally come to an end And a new one is here again We never know what’s around the bend Will it bring much sunshine or rain? But it’s given to us to learn new things With lessons we’ve learned before Are you ready for this brand New Year Will you gladly walk through it’s door? It only comes but once around To our pleasure or dismay Then it’s gone forever Eternity bound God willing another come our way. So give this New Year all your best Don’t shrink from opportunities given Fate is always knocking at the door And Destiny can lead to Heaven.
I Never Said Goodbye, I Only Said Goodnight! I never said goodbye, I only said goodnight. How could I know this would be not right, That with time, more suffering would come, That with time, there was work that should be done?
When I ran away, so long ago from you How could I know, I ran from the only love I knew? A love that would not flourish until the years were spent. A love that I lost and for which I now sorely repent.
If only I had known how much pain this night would bring That in the years to come, my heart could never sing. For I had it right before me, but alas I let it go, Only to find 40 years later I’d grieve forever so.
But what was I to do, when I was just so young And life had taught me that it was the time I was to run. Now I regret it, and there is nothing I can do But mourn the night I last saw you, and it was a love so true.
People and time destroyed what we might have had. So the fates were against us; were we good or bad? So in ‘sweet surrender’ I write this poem so right
Dedicated to Dale Thomas Hall (7/13/41 - 7/31/01)
‘I Never Said Goodbye I Only Said Goodnight!’ • 2007 • written word
I never said Goodbye, I only said Goodnight!
I have always been a creative person, loving photography and nature. flickr.com was an amazing find and has made a huge difference to my life. I am able to view other’s creativity when I am too ill to use my own. For me, photography doesn’t end at the making them more interesting. My photos represent what is dear to me and a time line of my life. They document my mood, feelings and ‘wellness’ and give me a huge sense of achievement. It is a small link to a wide world that I have felt shut out from... but not any more!
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Jo • United Kingdom • ME since 2002 * ‘My Life Mosaic’ • 2007 • photographic montage
camera. I enjoy adjusting the photos and
Always having been artistic, I started crafting in 2004. Crafting gives me the opportunity to be creative at a level which my illness allows. I no longer have the stamina to paint or draw; however with card making, scrap-booking and embroidery, I can tailor my efforts to my level of energy. When I am crafting, I find myself completely Jessica Wilkinson • 27 • UK • ME since 2002 • ‘Greetings from M.E.’ • 2005/2006 • mixed media
lost in the process of creating, which is a
soothing
and
therapeutic
experience.
I always manage to produce something to be pleased with - something to admire at the end of the day.
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‘Buckingham Palace’ • 2007 • scrapbook mixed media opposite: ‘Peacock’ • 2005/2006 • cross-stitch
KFC I had been to see the doctor and the doctor said
Expressions in every art form are “Just watch it”
my whole person. Having CFS only changes the pace at which I can
Or you’ll get a dose of “Yuppie flu”
work. Maybe there are days in which
Of course I took no notice and continued
nothing tangible is achieved, but I can still think - possibly rather wobbly
On my way,
thinking at times - but in particular, I can lose all awareness of my
Of working, not relaxing and to
environment. Painting pictures takes This day I’m as sorry as can be
me to a place of peace and serenity.
But not to worry folks as there is a happy ending
On the forum Even get to call it KFC KHRONIC FATTY SYNDROME?? What’s that? They say that illness’s not believable Oh yes it is There are signs all over town And when the people see them They’ll say at last ‘NOT CRAZY AFTER ALL!’
Gini • Australia • CFS since 1992 • ‘Boiling Brain’ • 2006 • oil on canvas
I get to share my problems with the people
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‘Strawberry Delight’ • 2006 • photo manipulation opposite: ‘Repose’ • 2006 • digital manipulation of oil on canvas
My interest in photography makes me look for the beauty in the everyday scenes around me. I see the world as a more beautiful place than I otherwise would and this positive viewpoint continues into the rest of my life.
Eleanor Gee • 26 • Australia • ME/CFS since 2005 • ‘Untitled’ • 2005 • photographs
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I have lived with CFS for a number of years - I was at my worst after a virus in 2005. I turned to my beading as it gave me a sense of accomplishment and is therapeutic. I could still stretch my imagination and bead when in bed. I drew inspiration from the things around me that gave me comfort. Laura Miller • 40 • Australia • CFS since 2005 • ‘Glass Beads’ • 2006 • beaded jewellery
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Nature has always inspired me; being housebound, when I am finally able to go outside, I like to take photos so I have a reminder that there is a world out there. It’s just my little memory of nature to keep with me always.
Bonnie • 25 • Australia • ME since 2005 • ‘Kurnell’ • 2006 • digital photography
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My illness began when I was 10 years old. I have had ME for 18 years now. Before I became sick I was really active in sports, drama, creating and performing music, spending time with my friends. I was good at these things and they these activities up in better periods, but I became bedbound and had to find other ways to express my creativity. I tried drawing, painting and writing short stories and poems. During the last two years I have also enjoyed photography. As small as my world is in reality, so big is it through my creative actions.
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Hester Nicolai • 27 • The Netherlands • CFS since 1991 • ‘Feel So Small’ • 2001 • pastel on paper
really made me happy. I tried to pick
‘Finding Balance’ • 2002 • pastel on paper
‘Talk To Me’ • 2003 • mixed media
Every day we have to endure precious moments of our life being stolen by this energy sapping illness. Having to slow down has helped me to open up my eyes to intensely beautiful moments in time that most simply let pass by, catching them in their mind’s eye if they’re lucky. Those drive to work, a news story, your gas bill - the dull, repetitive things we fill our lives with. If I can just catch that moment in time and capture it forever... Then that makes the slowing down part worth something.
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Lynn Clifton • USA • CFIDS since 1998 • ‘The Face In My Window’ • 2006 • photograph
moments are usually swept away by the
I started to write a year after I became ill, mainly as a way to get my life into perspective. My writing has developed in various directions since then, and in the past year led me to pick up my camera again. Through sharing my work online, I have come into contact with many wonderful people around the world. My world isn’t so lonely anymore. Being creative is helping me find a new direction and build a new life. Richard Jackson • UK • CFS/ME since 2002 • ‘Out Of Control’ • 2006 • written word
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Out Of Control Two black spots come into view From behind the roof lines of neighbouring houses. Swifts, dark in silhouette against the blue sky of late spring, Twisting and turning, braiding the air, In total control of their bodies, In total control of their impromptu pas de deux. Free spirits in the unencumbered air, Free to move as they please; To ride the breeze Or turn and power through it. Strong, squat bodies With their long angular wings. Lying on the wicker sofa, I watch the two birds Through the windows of the conservatory, My body leaden and pained by chronic illness, Not free to move as I choose, Not free to live as I desire, But held, in limbo, until time grants a reprieve: My body out of my control.
‘Skyline: Rosedale’ • 2006 • photograph
Being artistic, I lost all enthusiasm and desire when I got sick. One day, picking up my pens, I managed to sketch this picture, which is the first after many years. Now when I look at it, I smile, as I am reminded all does not have to be disordered when suffering with illness. Your body may be in chaos, but there is still a place for serenity on the inside. M Riabkoff • 30 • Australia • CFS since 2001 • ‘Untitled’ • 2005 • pen on paper
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Writing and photography keep my soul alive. I guess you could say they are my therapy. While my body may be weak, I always have my mind to express what I am feeling and thinking. That is the only constant I have. When I write and take photos, I feel as though I am doing something I love. It is my source of joy amidst the pain of CFS. I am lucky to have found it. Allison Manuel • Australia • CFS since 2004 • ‘Another Day’ • 2007 • written word
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Tomorrow’s Another Day... When the lights go out, my eyes say‘Thank you’. When the noise comes to a halt, I breathe relief. I crave the quiet and the dark, a place for this ill body to retreat. When the head pounds relentlessly, and the throat fights to swallow, I cry to myself ‘When will it be over?’ and hope for a better tomorrow.
‘Alone’ • 2006 • photograph ‘Anew’ • 2006 • photograph opposite: ‘Summer Sunset’ • 2007 • photograph
My work concentrates abstraction with representation, spontaneous gesture with artful construction; paradox. ‘Wild Peacocks’ captures a fleeting moment near Jaipur, India (2004). In mountain woods, peacocks fled our passing auto-rickshaw. You’ll find no peacocks in this image yet they’re definitely there; they parallel ME/CFS: undetectable but definitely here! In 1990 ME/CFS arrived in my life, demolishing it. Poetry and painting both gives and maintains purposeful meaning. I sometimes sense I’m no longer doing painting and poetry but have somehow become it!
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John William Brown ‘JWB’ • 61 • UK • ME/CFS since 1990 • ‘Wild Peacocks’ • 2006 • oil on canvas & written word (overleaf)
struggle with opposites and synthesise
wild peacocks
(jaipur) (from the unpublished series ‘Return to Exile’)
and then on the mountain road cutting shrub and parched bark the blanched trees an auto-rickshaw chugged up the rocky and gradual incline then there on the edge of a bend auto-rickshaw spluttered held still summit fortress way up above amber fort a sheer drop below unconcerned in the morning heat she gazed down through a frame of sparse trees at water-palace afloat on a blaze of bright pollen-green once more on their cliff-hewn way kumesh the driver drove on passed an outcrop of ragged red pine and there in between through a grey haze of dust agitated and wild peacocks fled
True Self • John William Brown ‘JWB’ • 2007 The fact was she felt both confused and dulled. Had felt so for too much of her life. There had been moments of clarity when those feelings had lifted and she responded with sudden spontaneity, without hesitation or doubt. However, she had to admit that those times had been so rare, she could count them, had usually been moments of emergency. Yet, in those moments she had felt what she would like to think was her true self. The self that would spontaneously combust into instantaneous action. Unfortunately, once those moments of clarity had passed, that more familiar confused dullness would descend. Sometimes it came as a sense of veiled boredom; it draped itself around her, gently cocooned any sense of adventure and vitality. Or, some inexplicable sadness would arrive from nowhere, smothering her finer feelings. And then, that alive and bright sense of her true self would sink back into some comfort zone and she would settle into a seemingly endless, moment-to-moment, couch-potato existence. That life of inevitable ennui that she knew only too well. She twisted a curl of her mousy-brown hair around her finger. She sucked it as she gazed out the large bright window onto the sunny mid-morning street. A soft smile spread across her face as she pulled the twist of hair through moist lips. She smiled; despite that slow dumbing-down of her bright spirit, she knew that she could sense, could feel that other awareness. She also knew she could depend upon that secure, calm inner home. It was there. Somewhere deep within. Somewhere that she could always turn to. That place she could relax into and reconnect with her true self. She smiled again because she realised that that true self was not dependent on emergency situations to come to the fore! It was always available to her! If only she could take the courage to connect with it, NOW! However, she knew that to connect with her true self she had first to accept her present numbed state. That must be her starting point. Her raw material. If she could trust THIS, through such acceptance she would be free! She could be secure 76
and happy with however she felt – knowingly! To trust in her true self while still being caught up with her superficial self! That was the paradox to be resolved! To be totally in the moment, she could then reach her fearless ever-present true self! To BE that! RIGHT HERE! NOW! ‘That would be something!’ She thought as she twiddled her pen. ‘YES!’ She thought, to trust and accept that whatever she was doing was JUST as valid as any of those moments of spontaneous activity that had previously been delivered to her out of some emergency! She could trust that......because...?......Everything was spontaneous.....! ‘If only I could accept I’m in the right place, at the right time - RIGHT NOW!’ She sighed and doodled on her pad. ‘If only......’ She looked up and back out the window and sighed. ‘BUT I CAN! I CAN stop believing my past will be repeated in my future. Stop comparing what-could-be with the what is! Now, THAT would be a great leap!’ She grinned. She folded her arms across her chest. She held up her head. She felt relaxed, confident and free as she gazed through the comforting warmth pouring in through the sunlit window. She felt her true self......RIGHT NOW! She was already there...RIGHT NOW! Her...OWN PERSON! Her own...TRUE SELF! ‘YES!’ She told herself. NEVER AGAIN would anyone be able to control her or make her leap to their call! She would not let them! She affirmed herself as she stared out at the busy street. ‘NEVER AGAIN! NOT NOW THAT I AM TOTALLY MY OWN TRUE SELF......!’ “WAITRESS!” “Right There, Madam!” 77
I believe that many, if not all creative activities can be very important for healing illnesses of the mind/body. I do art because and mind to communicate with each other; but other activities such as writing, gardening, walking, etc. can have the same effect. They put you in a state of “flow” that allows many things to happen in your body, mind, and soul that don’t happen when we’re concentrating. And they get you out of your brain - out of THINKING mode.
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Nina Bunin • 58 • USA • CFS since 1990 • ‘Nina & Roxie Fly Free’ • 2007 • watercolour pencil & acrylic on paper
that is my particular way for my body, heart,
‘Confused & Overwhelmed’ • 2007 • acrylic, watercolour pencil, mica powder & beeswax on paper
‘My Neck is So Tense’ • 2002 • markers on paper
Having suffered with CFS/ME for the past 2 & 1/2 years, I’ve had a lot of things taken away from me with this horrible illness. I have always loved to sketch and write poetry; when CFS set in I found sketching and poetry could take my mind off the pain a little and allow me to express myself the best way I knew how. The Rose was a sketch I did when I first got sick. Pre CFS, I loved to use colour, but when I sketched the rose, I was feeling like a lot of colour had gone out of my life. I didn’t feel it would show the true meaning of it if it was
The poem was written on very bad day, but it expresses the way I was feeling at the time. I get lost with the words and can best express the way I feel the with my poetry.
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Angel • Australia • CFS/ME since 2004 • ‘The Rose’ • 2006 • pencil on paper
in colour.
CFS or is it? Every morning when I wake, I pray today that I won’t ache, Most days I climb out of bed, With tom-toms playing in my head, Exhausted after getting dressed, Just sit down a minute to have a rest, Wake up almost 2 hours later, Who is this person, I’m beginning to hate her, Everyday is a constant struggle, Brain waves now beginning to juggle, Where is that girl I used to be, So full of life & energy, Taken part of me away, The part that used to love to play, No one else can understand, Unless this illness is experienced first hand,
So many thoughts go through my head, Bad day thoughts of wishing I was dead, Sometimes it’s hard to see the light, My life’s challenge, another fight, I have a lot of time to think, I wish the doctors would find the link, Trying to decide what to eat, That’s if I can get to my feet, Now my stomach is in my throat, Maybe today I shouldn’t have woke, Don’t know how much more I can take, Feels as if everything is going to break,
Between me and life there is a huge wedge, I know this is another mountain I have to climb, I just have to wait until it is my time.
‘CFS or is it?’ • 2006 • written word
Am I being pushed over the edge,
Since getting sick I’ve missed a lot, but I’ve also learned a lot about myself and life. I’ve been given the chance to sit back and fully enjoy all the little details of this beautiful world which our Heavenly Father has created for us. I like to be able to capture some of these beautiful moments on paper, as memories of
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Kat • New Zealand • CFS since 2004 • ‘Untitled’ • 2007 • watercolour on paper
my journey.
Photography for me is both challenging and relaxing. I find it helps me to forget about my illness for a while. Creating a beautiful image occasionally is also very rewarding.
Adam • 31 • Australia • CFS since 1995 • ’Dark Tree’ • 2005 • photograph
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‘Boat on Rabbit Island’ • 2005 • photograph opposite: ‘Blue House’ • 2005 • photograph
About Me: a simple bloke, who loves the simple things in life... friends, family and Jesus Christ. Why I like doing creative things: Because when I’m doing creative things it let’s the time waste away without feeling you’ve wasted it at all. Movie-making also let’s me look back on the fun I’ve had when the fun isn’t at the
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Jimmy Young • 18 • Australia • CFS since 2004 • ‘Irresponsible Teens’ • 2006 • digital media
forefront of my memory.
Throughout my journey of CFS, photography has been my one true passion that hasn’t been taken by CFS. Photography allows me to be expressive and creative – no matter how I am feeling. I can hide behind the lens of my camera at any time and any place, and be at total peace. This image was taken on a trip to Monterey Bay, California, USA in 2006. The trip itself was a huge risk health wise. The jellyfish at the aquarium are mysterious creatures of the sea – much the same as CFS is so mysterious to us all. Jellyfish lurk the sufferers – CFS does the very same – when we the sufferers least expect it. This image is proof that CFS won’t beat me – I’ll beat it!
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Tully • Australia • CFS since 2004 • ’Jellyfish’ • 2006 • photograph
waters and can cause pain to unbeknownst
I took these photos one morning, because when you are ill, you have a greater respect for the smaller things that usually go unnoticed in day to day life.
John • Australia • CFS since 2002 • ‘Untitled’ • 2006 • digital photography
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For a long time I was angry with ME/CFS for robbing me of my creativity. I no longer had the energy. My mind, like my body, seemed emptied of inspiration. But in those moments when I’ve managed to write or play with discovered a piece of myself that seemed lost. When I lose myself in something the world falls away; I step outside my body, forget everything and just live in the moment, in a place where I’m in control and magic can happen. And that makes me happy.
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Kerrie • Australia • ME/CFS since 1999 • ‘Metamorphosis’ • 2007 • digital artwork
pictures, a spark’s been re ignited and I’ve
The Dreams of Finches • Kerrie McCure • 2007 They’ve been doing research on the zebra finch. They’ve been recording its dream patterns. They’ve attached micro-transmitters to individual brain cells and recorded the order in which they fire while the finch sleeps. This recorded pattern is then compared to the waking finch’s brain. They’ve determined that, while sleeping, the finch rehearses its song; improvising and trying out new variations so that when it wakes it can offer a more finely tuned call to its potential mates. I dreamt I was on an island. On a wooden table there were ten sleeping finches, all attached to pale-green wires. The wires led from the sleeping birds to a sound system, which broadcast their songs over a loudspeaker. I stood on the shore in my nightgown with ten small, wire cages, as the songs rippled through the hot air. The cage doors were open and I was waiting patiently, listening to the lonely, dreaming finches. I wake with wires attached to my body. But my mind is too free. The cage door is open but I don’t leave. I lie in bed and think of you. Inside I’m singing, rehearsing my call, but you don’t seem to hear. Your emails are short and clipped and as practical as you. Mine are long and winding, brimming with words and colours that I suspect you’d rather not hear. I flatter and reassure you, and in bed at night press my fingernails into my palms and curse myself for my generosity. My weakness. Your world is certainties and solidity; while I float upwards, my feet no longer planted in your soil, and become wispier and more ethereal. I’m afraid I might evaporate. At night I stand under the moon in the sultry wind and call to you. My melody twists and flies through the air with the lightness of feathers and the heaviness of human touch and ties me in knots. I knew you’d never take a risk on such a loss. Why love someone who might leave? But I’m lonely. There’s an empty space that’s carved in your shape. It was yours the first time 100
our bodies came together. The first time I felt your skin. The first time I looked into your eyes
and felt you touching me deep inside. Something in me was seeded and flowered. I want to forget you but I don’t know how. When they lay me on the white bed, attach the wires, pierce my skin with needles, I try not to think of you. The fluttering heart, the tight chest, the sharp pain, the rush of blood, in and out ... the way you told me you loved me and then took it back, came and went with your confusion and fear and unpolished beauty. The illness feels the same as the love. My heart hurts. The finch’s song is ungainly and complicated. It’s not clear and melodious. But it must be beautiful to other finches. And night after night, dream after dream, more beautiful with each call. I lie on their white bed and dream of an island. I’m attached to pale-green wires, which lead to a sound system. My mouth is closed, my body is still, yet I’m singing a song. I recognise my own voice fluttering out of the speakers, high-pitched and joyous. Under the song I can hear the sound of crying. Is that mine? I can’t tell. It’s a heavenly counterpoint. I see you at the edge of the shore and I try to call out to you but no sound comes from my throat. You can’t see me, but I know you can hear the song. You’re holding a cage in your arms. The door is open. You have tears running silently down your face in silvery trails. The song seems to have given way to a cacophony of noises voices urgent beeping confusion. The sun comes out from behind a cloud, blinding me and blanketing me in warmth. I close my eyes. The sounds are floating away. My heart doesn’t hurt any more.
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Creativity has always been a central part of who I am. At first, CFS/ME robbed me of the strength required to paint, the concentration to write and the stamina to play music. Out of desperation, I took up photography – mainly to capture images for when I was well enough to paint again. However, the photography soon took on a life of its own and came to represent the process of reinventing and rediscovering myself as someone coping with CFS/ME, yet valuable and undiminished. I am learning to see and think in new ways. It has been a real gift.
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Darren Shaw • 32 • UK • CFS/ME since 2005 • ‘Street Lightning Series’ • digital photographs
Ben • 24 • Australia • CFS/FMS since 2002 • ‘Its not light yet, but it’s getting there’ • 2006 • photograph
With CFS/FMS you are completely engulfed with horror and negativity, the natural highs from good health and good mental health no longer apply. You have to really open up your eyes and discover the beauty and positive things around you, to influence a positive state of mind and thus body. Having
a
chronic
sleep
disorder
and
living primarily nocturnally, I get to see the miracle that is the birth of a new day.
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To create
to other worlds...
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Kirrily Anderson • Australia • CFS/ME since 2005 • ‘Where Dreams Meet Reality’ • 2007 • digital artwork
is to escape
‘Love Our Earth’ • 2007 • mixed media
I am 25 years old and have had a combination of CFIDS and fibromyalgia for about five years. Basically, I got mononucleosis late in 2001 and have not felt the same since. My symptoms are on the milder side, so I work full-time, but this means limiting activity on the weekends. I got my digital camera a couple of
years
ago
and
have
been
taking
pictures constantly since. Photography has it brings some joy to my otherwise mundane existence. Lately, I have been trying to capture the personal impact of CFIDS through the lens.
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Emily Forbes • 25 • USA • CFIDS/FM since 2001 • ‘Solitude’ • 2006 • photograph
become one of my favourite things in life, and
‘Hushed Trembles’ • 2006 • photograph
‘Velocipede’ • 2006 • photograph
I’ve
always
written.
Diaries,
poems,
observations, thoughts and feelings, they all go in my notebook. It keeps me sane me perspective, makes the internal less powerful by externalising it. When I was at my worst with CFS, I was unable to write at all and that was almost unbearable. I find it cathartic, absorbing and therapeutic. Being unwell, it has the added bonus of recording moments, both good and bad, that with my short-term memory problems would probably otherwise go entirely unrecalled.
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Sue R • UK • ME since 2004 • ‘A Nephew Suggests’ • 2007 • written word • overleaf: ‘Interpretations’ • 2007 • written word
(well, that and keeping chickens!), gives
A Nephew Suggests Inspired by Tom
“Panto?” “Can’t go” “Cinema?” “Too far” “Play a game?” “Too much pain” “Sing a song?” “Not that strong” “Run about?” “Too worn out”
Aunty can’t She’s got M.E. But she’ll read, quietly And if I listen, carefully I will hear her love for me
Irony For those who think they know I’m not really unwell I’ve made it up, you see And being so self-centred I’m calling it M.E. I’ll just lie here for ever And claim it lasts for years. To make it seem more likely I’ll frequently shed tears. Cite so many symptoms I’ll baffle my GP And all the talk around here Will be about, yes, ME! Maybe I invent it In order not to work Because you know, my colleague He was a total jerk. As the world of healthy Slides by, I’ll not regret The wasted years, inactive So, have you got it yet?
Hope For those who know This illness is just hellish It makes me feel so blue Doctors and the wider world Don’t seem to have a clue I’ve lost so many friends My job, my self-esteem Tell me it’s all in my head And you might hear me scream. I’d shed my skin in seconds Dive deep into good health Because I’ve learned the hard way That it’s the one true wealth. Be free from this torment It’s my one abiding hope Until that day arrives though I have no choice; I’ll cope. Oh how I wish I had My life back for a day I’d be a “proper” Aunty I’d run and shout and play.
I have always enjoyed drawing, even some years ago getting pretty serious about it, with art papers, a wide variety of media - pencil, charcoal, graphite and such. Since slipping into chronic fatigue it has been such a pain to get everything out, work with it and put it all away again. My computer has proved a blessing - it is so easy to do a quick sketch with the tools that are available on most drawing and image manipulation software programs. I find this a Adam Pearson • 69 • Australia • CFS since 1997 • ‘Little Fat Guy’ • 2006 • digital artwork
very positive activity - lots of fun, quick and satisfying results... it’s uplifting! I love doing quick cartoons.
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‘Tom Waits’ • 2007 • digital artwork
WAITING (waiting) Seconds turn to hours turn to days (waiting) turn to weeks turn to months turn to years. (waiting) Jabbing needles, siphoning blood. More tests, more potions, more (waiting) uncertainty. When will the answers come? (waiting) I have no choice; I patiently sit. (waiting) Waiting.
One of the most frustrating aspects of Anna Peterson • 36 • Australia • CFS since 2003 • ‘Waiting’ • 2007 • written word • overleaf: ‘The Beckoning’ • 1985 • written word
this illness is diagnosis by elimination; the endless tests and experimentation with various drugs... wondering if this time something will show up, if this time something will work, if this time there will be answers. The waiting is the hardest part.
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THE BECKONING Death beckons me A darkly shrouded figure, softly whispers
...beckoning...
A bleak hand steals Fr o m b e n e a t h D e a t h’s s h a d o w y c l o a k
...beckoning...
...beckoning...
I hear my name float from somewhere
An ancient tomb Somewhere lost
Somewhere forgot
Death knows my name And beckons me
I reach... into the calling darkness
Death knows no satisfaction Save, the loss of innocence
And as I grow numb I feel the smile of the Beckoner The chilling air Blast from His nostrils
Ice fills my heart Lead fills my gut Knowledge complete Fi l l s m y m i n d
A n d n o w, i n m y m a d n e s s Shall I beckon thee?
I like pictures,
I like them very much.
Collette Avery • 19 • Australia • ME since 2004 • ‘In Transition’ • 2006 • photograph
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‘Scrawl’ • 2006 • photograph
I first developed symptoms of ME in 1998, though was able to continue studying at Vet School until ‘crashing’ totally at the end of 2000. Primarily bed-bound and housebound, and grieving for the life I once knew, the Arts have been blessing. They are something I can escape into and feel a sense of satisfaction by completing, when most physical goals have now become unattainable. This has helped me to survive and has shown me that life-altering illness as ME, elements of joy can still be found. Even in bleak times, beautiful moments can still shine through.
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NikkiJo • New Zealand • ME since 1998 • ‘Lonley Road’ • 2002 • written word
even when coping with such a demoralising,
LONELY ROAD You’re a lonely road Aren’t you Yes A weary travelled one At that Aye, with many stories to tell Where leadeth ye then? Only for me to know, lass Only for me to know
INSTEAD She tries to run, but falls instead She tries to smile, but stares instead She tries to read, but the books remain unread
The child swings alone, forlorn White dress, flowers Bare feet Sad eyes staring quietly From an otherwise emotionless face
She tries to read, but the books remain unread She tries to smile, but stares instead She tries to live But falls instead
‘Spirit’ • 2007 • pencil on paper opposite: ‘Instead’ • 2001 • written word
Learning photography is the single most gratifying thing I’ve done since I became ill four and a half years ago. It has made me more aware of the beauty around me and has helped me express emotions regarding my illness and social situation, which I’m not always able to express verbally. I feel that I have accomplished something despite the loss of health, job and economic security.
Ann • 41 • Denmark • ME since 2002 • ‘Alone’ • 2006 • photograph
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‘Explosion’ • 2006 • photograph
I’ve been writing since I was five and later discovered visual art in its various forms. When I was 16 I got sick with CFS that has become progressively worse. At the same age I also started working as a freelance journalist and managed to do that for six years, but now I’m no longer able to work. During my better years I succeeded in finishing four novel manuscripts. CFS treatments. I have very little energy for living my life, but art, literature, medicine and CFS activism are my driving forces.
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Maija Haavisto • 24 • Finland • CFS/ME since 2000 • ‘Lady Gray’ • 2004 • written word
Recently I finished my medical book about
Lady Gray madeleine soaked in milk she’s boiling
and you want her dead wrapped in bergamot
leaves tainting your tea
slipped off a silver spoon lady gray
embalmed in a cotton bag
overthrown, she drowns diluted
at the bottom of
the cup
‘Astral Apple’ • 2006 • ASCII image • opposite: ‘Omivore’ • 2007 • acrylic on canvas
Creativity is a way of letting my spirit sing. It is a very joyful thing to do. It is also a process that helps me feel more deeply connected to life.
Steve Dwyer • 45 • Australia • ME/CFS since 1982 • ‘Creation’ • 1998 • written word
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CREATION creation is not over it is not a past event every moment is a new creation every breath every heartbeat is new existing for a moment and then dying to be reborn in the next moment everything that can be experienced is like this
EMBRACE Life is simple Strip away all that is unimportant and what will remain? Don’t struggle for affection Don’t strive to compete Relax Embrace where you are now Enjoy the things you love most And there you will find the freedom you seek
THE GIFT Your gift is truly great when you do not expect a return Encourage me to give but don’t be surprised if I give in ways other than those you envisaged
Your gift is truly greatest when it inspires generosity but does not require it Your gift transforms the heart when it is given without condition or expectation This poem is my gift to you
‘The Gift’ • 2003 • written word • opposite: ‘Embrace’ • 2001 • written word
Encourage me to give but don’t be surprised if I choose my own ways of reaching out
Animation is my meditation. “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.’’ - Matthew 11:28-30
Wouter Bongaerts • 21 • Belgium • CFS since 2002 • ‘Warmth’ • 2005 • acrylic on paper
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I
wrote
this
verse
during
a
particularly bad relapse when I was struggling with the complexity of
CFS.
It
has
always
been
important for me to express myself and the words just flowed. CFS and I have come to be thankful for this period of my life.
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Amazon • 42 • Australia • CFS/FM since 2003 • ‘Bleeding Through My Tears’ • 2006 • written word
changes the very core of who you are
Bleeding through my tears. The Soul is lost. Roses are Red. The wind blows through the top of the Trees. The food is going cold on the Table. Pain is but an envelope. Tears make a mighty Ocean. Smile on the Inside. The road only goes so far. Being embraced by the Void. You can run but you can’t hide. Black & Orange battle it out. Rain feels good on your face. TV will tell you the truth. Feel your Breath. Say Good Morning to your neighbour. Love will set you free. Hoping and praying I will see the other side. Don’t be afraid to ask the Question. Show your Emotions. Fresh bread is the best. My feet have lost their way. Throwing my heart out with the trash. The walls are closing in. Looking toward the Sun. Bleeding through my tears.
There’s something about creating... It’s hard to put one’s finger on what exactly makes creating so great. Yet it’s not that complicated. I love creating worlds. Places that may not exist. Places where you can lose yourself and things are much easier for everyone, or where life is infinitely more challenging. For me creating is, quite simply, an escape. Once the creativity starts building, there’s no telling where you’ll end up. That’s part of the beauty; things can go in all directions. The real challenge yet remains; to create a world within your own life... A real world to call home...
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René Mulder • 23 • The Netherlands • CFS since 2007 • ‘Bad Habits Are Universal’ • 2007 • digital artwork
disconnect from pain and fatigue. Places where
‘Dance With Me’ • 2007 • digital photgraphy • opposite: ‘Stellar Violence’ • 2007 • digital photgraphy & manipulation
TELL US YOU LOVE US! DID YOU LIKE SOMETHING YOU SAW OR READ? DID YOU LIKE IT A LOT? INTERESTED IN COMMISSIONING SOME WORK? LET THE ARTIST KNOW! Adam Pearson w http://alvason.wordpress.com e munmorah@gmail.com Allison Manuel e allieoop@iinet.net.au Anna Peterson w http://www.copybreak.com.au e anna@copybreak.com.au Darren Shaw w http://www.DistantShawPhotography.com e DistantShaw@aol.com Eleanor Gee e eleanor.gee@gmail.com Jasmine Staughton w http://www.jazziestudio.com e webmaster@jazziestudio.com John Brown (JWB) e johnbrown_jwbuk@talktalk.net JoWynn Johns w http://jowynn.wordpress.com e jowynnj1@verizon.net
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Kerrie McCure e kerriemc@gmail.com Kirrily Anderson w http://kirrily.deviantart.com
http://myspace.com/iandtheothers e iandtheothers@gmail.com Maija Haavisto w http://www.fiikus.net
http://www.brokenmarionettebook.com e maija@writeme.com Naomi Lawler e gnomes_86@hotmail.com Nina Bunin e bunwad@gmail.com Virginia McGowan w http://www.theartshow.net.au/Virginiamcgowan
http://www.redbubble.com/people/ginnymac e virginiamcgowan2@bigpond.com
THANKS A MILLION... TO THOSE WHO HELPED TURN THIS LITTLE IDEA INTO A BIG PROJECT AND WHO CONTINUALLY OFFERED SUPPORT Anna Peterson & Catherine Evans for their proof reading and copy writing skills Adam Fox for building creativeforasecond.com Leigh Hatcher for his publishing advice and enthusiasm Warren Pidgeon for tech support Ros, Justine, Johno, Angel, Kerrie, Gini, Susan & Roz for their eagerness to be involved and help out when their health permitted To those who always replied to my emails promptly and offered words of encouragement every time - you kept me going!
OFF LOAD ONLINE: For online CFS/ME support Not Crazy http://www.notcrazy.net/forum Blue Butterflies http://cfsandfmshelp.proboards84.com Help With ME http://www.helpwithme.com Creative For A Second online http://www.creativeforasecond.com http://www.myspace.com/creativeforasecond 157