Today is International ME/CFS Awareness Day. It’s a timely reminder of why I’m an artist, and why I do what I do.
I don’t really know why other people choose art. I didn’t choose it because I wanted to say something, or had some vision to express (although those things are still true for me).
I chose it because I needed a reason to live. I chose it because I needed purpose in my life.
As dramatic as it sounds – it was going to either be art, and purpose, or desperate attempts to lead a typical life, and ultimately, death. That I eventually would have killed myself, I have no doubt.
I need art. Even during months when I’m blocked and unable to actually make art, it’s still my reason for being. It’s still my driving force, the reason I get up in the morning.
I made a choice when I was 18 to make art that I’m passionate about and share it with the world. And nothing anyone says will ever change that. No one can take that away from me. I might forget it for a while, and let their words cause me to forget, but they can’t take that away.
I will always make art. I will always be passionate about making great art. And I want to share my art with people because it changed my life so much, I steadfastly hope that one day, it might help to change someone else’s.
Having ME/CFS has taught me to be grateful for the life that I have. It’s taught me that following your heart is more important than doing what others expect of you. It taught me that not only does normal not exist, but that it’s not really all that important.
It taught me that passion and vision are important. It taught me that small things do make a difference.
It taught me extreme vulnerability, but within that – compassion. Empathy. It taught me how to connect with others, to see their pain, to hear it, to be with it. Because I felt that pain too.
Life hurts, but it’s exquisitely beautiful too.
That’s what I’m trying to get at when I paint – the beauty and the pain of life. They’re both there. You can’t have one without the other.
I’m not always this zen about being sick. Some days I still rail against my body. On bad days, I am paralyzed with fear that I won’t feel better when I wake up the next day. That maybe this time, I’ll have to spend weeks & months in bed again. That fear is always with me. You become painfully aware of the preciousness of each day because you don’t know what tomorrow will bring.
Yet at the end of the day, all of this goes into my art, goes into my vision. I make it serve a purpose. I give it meaning, to preserve my sanity.
So today, look down at your body and thank it.
Thank it for working and moving and walking, even if it doesn’t do those things well. It’s trying. It’s doing its best.
In honour of today, my art is part of an online art exhibit with other artists with ME/CFS. Please go check it out, or at least visit the site and read a little bit about ME/CFS and the effect that it can have on people’s lives. The more awareness we bring to this disease, the sooner we’ll be able to create effective treatments and maybe one day – a cure.
ME/CFS Awareness Art Exhibition
The ME/CFS Centre in the virtual world Second Life is launching an art exhibition on Wednesday May 12, 2010. The exhibition features creative works in all forms authored by people with ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome).
The exhibition includes paintings, illustrations, line drawings, sculpture, digital art, poems, prose, book extracts and song lyrics. Every contributor has a story to tell.
The exhibition is spread throughout three floors of the Centre. Features include a gallery on the ground floor, an art installation called “Have a drink for ME” on level 2, and a “Day in the Life of ME” on the roof garden.
The exhibition is being launched on International ME/CFS Awareness Day in order to promote awareness of this misunderstood, under-funded and under-researched illness.
Despite having ME/CFS, contributors to the exhibition have demonstrated an amazing wealth of talent.Time and day of launch: May 12, 2010, 6-8pm Pacific Daylight Time (GMT-7)Location of exhibition: ME/CFS Centre, Murdoch University Island, Second Life (SLURL: www.tinyurl.com/me-cfs)Website www.mecfscentre.orgFor more information, please contact Kirsty Best at email@example.com (avatar name Kirsty Bearsfoot).
To access Second Life, create a free account at http://secondlife.com or through Virtual Ability at http://virtualability.org/signup.aspx and then teleport to the ME/CFS Centre (www.tinyurl.com/me-cfs).
This is the piece that I’m showing. It doesn’t often get a chance to shine, but I love it anyways.