‘Soul Friends 2 – Jen and Jess from ‘Unrest”
© 2017 by Shiloh Moore 8×10”
Watercolour on Paper
Jennifer Brea and Jessica Taylor-Bearman are two revolutionary patient advocates for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.)
Jennifer Brea’s film ‘Unrest,’ which they both star in, will be released in Australia at the Melbourne International Film Festival tomorrow, on August 5. Jen was studying at Harvard and about to be married to her partner Omar, when she became ill with ME/CFS and so turned cameras onto herself to film her experience. She had a successful Kickstarter Campaign to fundraise for the film, which was then called ‘Canary In A Coalmine’. The trailer for Unrest is here.
Not only has she directed ‘Unrest’, but she has revolutionised online patient activism. She co-founded ‘MEAction’ which is an online platform for people with ME to advocate for rights, lobby governments and educate the community about ME/CFS. 20 years ago when I was a teenager with ME, we were frustrated that with ME, we couldn’t protest in large numbers and make much of a difference as we were too unwell. Now, by embracing social media and the internet, millions of people with ME worldwide, are in contact, and with Jen Brea’s initiative, we can collectively campaign for change – from our beds. #MillionsMissing is one of MEAction’s campaigns, where patients sent shoes to cities around the world, where empty shoes were lined up in public places, each pair representing thousands of people with ME who were not well enough to protest in person. Governments and researchers around the world are starting to take notice. Change is happening on a scale unprecedented before the internet, largely thanks to Jennifer Brea. Read more about Jen here: http://www.jenniferbrea.com/
Another patient featured in the film Unrest is Jessica Taylor-Bearman who lives in Kent in the UK. She has been bedridden since age 14, for nearly a decade. She has a Facebook page following her story ‘The World Of One Room’ and has written a forthcoming autobiography ‘A Girl Behind Dark Glasses.’ Earlier this year her dream came true to walk down the aisle at her own wedding – the first time she walked in years. She was hospitalised soon afterwards…but somehow she did it! She has a large online community following her and is proof that you can be severely debilitated by illness and still live with a valuable quality of life. Read more about Jess here: JayTay.co.uk
Living on opposite sides of the world, Jen and Jess inspired each other and were soul friends from afar for more than 5 years, not knowing if they’d ever meet in real life. On June 16 2017 their dream came true to meet in the flesh, and Jen was able to fly to Kent where they met.
I drew them from a photograph Jen posted on facebook: https://www.facebook.com/jenbrea/photos/a.640213589454972.1073741828.361045300705137/920107161465612/?type=3&theater
I changed the shirt Jess was wearing to be a block blue colour to add more colour, and in doing that, somehow I made her look bigger than she actually is – huge apologies, Jess, but I don’t have the spoons to draw it again and correct it! Sorry! So this will have to do…
I chose to draw them in royal blue as blue ribbons are a symbol for ME/CFS Awareness.
Thank you Jen and Jess for opening your lives and experiences with ME to the world and bringing support for the patient community along the way. You are both invaluable.