Today, August 8, we unite to honor Severe ME/CFS Awareness Day. This year, we raise awareness through the lens of Whitney Dafoe. Whitney, son of Ron Davis, PhD, and Janet Dafoe, PhD, is an extraordinary soul whose ME/CFS journey has been one of heart-wrenching challenges and remarkable courage.
Since 2004, this disease has tested his limits, yet he remains a source of inspiration, advocating for others and sharing his experience with a heartfelt authenticity that resonates worldwide. Explore Whitney’s powerful story here.
I Still Feel Free by Whitney Dafoe
I haven’t felt the wind on my back in 11 years. But I still feel free.
I haven’t touched a woman with love in 12 years. But I still feel love.
I haven’t spoken a word to another person in 12 years. But I still feel understood.
I haven’t eaten food in 11 years. But I still feel fulfilled.
I haven’t walked beyond the 6 feet from my bed to my bathroom and back in 11 years. But I still know how to run.
I haven’t truly slept in 11 years. But I still feel awake.
I haven’t been spontaneous in 11 years. But I still feel choice.
I haven’t had a conversation with my father in 12 years. But we both still care.
We are not our circumstances. This physical world does not define us nor can it confine us. We are infinite beings. We create our universe. And I choose to live in wealth and freedom and love. ME/CFS can take all of my health and my good fortunes and circumstances but it will never take me. I live on, unfettered, untouched, unsoiled. Bright eyed like the morning sun. I exist. I thrive. I dream. I love. I change. I inspire. I. Am. Free.
No one and nothing can ever take my freedom. In the chains of ME/CFS I am still free. Beneath the cloud of oppression, I call out to the universe and rejoice in this life that I have, the miracles that still exist all around me and the power I still have to take it back.
ME/CFS can destroy most of me but it can never own me.
I suffer, cry, feel miserable, lonely, often brain dead and disconnected from myself. We all do. We have lost so much. But those things always pass and light eventually pours into my life and makes me weep for the glorious beauty of this world.
This year on Severe ME/CFS Awareness Day, let’s acknowledge what ME/CFS has taken from us, the suffering it has inflicted on us, and the life it has destroyed. Let’s never try to repress or forget. ME/CFS does not deserve forgiveness. But let’s also look around at the life we still have and rejoice in the miracles that are still happening all around us, to us and for us. WE ARE ALIVE! And one day we will be free from these chains and nothing will slow us down. Our wake will shake the earth with a great tidal wave of redemption.
Love,
Whitney
Whitney’s experience, and thousands of other stories like his underline the need for rigorous scientific research and innovative treatment options. At Open Medicine Foundation Canada (OMFCA), we are dedicated to changing these stories.
We invite you to explore OMF’s View for ME project, launched three years ago in recognition of Severe ME/CFS Awareness Day. This initiative shares the powerful stories of individuals living with severe ME/CFS to enhance understanding and visibility.
In addition, we encourage you to review a new guide from the OMF supported Medical Education Resource Center (MERC) at Bateman Horne Center. In her presentation, “How to be a Demanding Diplomat as a Severe ME/CFS Caregiver,” Galen Warden offers valuable insights and practical recommendations for managing the care of individuals with severe or very severe ME/CFS.