Preface: Before we can talk about solutions or research, we need to understand the daily reality of just getting by. This story was written in a season when “head above water” meant surviving hour by hour—a place many never see, but that must be witnessed if we want care and change to reach those most at risk

I will always remember the day I received the gift of relief from torture for the first time! Torture that felt like a live-wire that comes loose and thrashes around inside of you. Restless legs at a systemic level. You desperately want to escape your own body, but you can't. It becomes a merciless prison. This is just one of the symptoms of Lyme Disease, a health crisis that had impacted me since 2005.

Lyme is so catastrophic that many, including Wren Sparrow (our first patron), have struggled with thoughts of self-harm in the extremity of suffering. Before arriving here, Wren fantasized about unzipping her prison of a body to break free. Similarly, anthropologist Aaron Jackson, who also faced these dark thoughts, relates, "I know how fragile life is in the throes of illness and how easily it can be clipped with the shears of [physician] domination and misunderstanding."

Like Aaron, I nearly took my life years ago for the same reason. We both thought our families would be better off without us, primarily due to lack of access to medical care, misdiagnosis, and the stigma and skepticism we faced from doctors and family members—as we became mere shells of ourselves.

When Avril Lavigne's song, "Head Above Water" came out, it was a lifeline; she gave me a voice to share the hopeful parts of my story in the midst of health crisis. If you watch this video, you'll feel the desperation and the subsequent elation that comes when your head is lifted above water.

MY WORLD CHANGED forever just a month later when a stranger named Emily changed the trajectory of my life! Now, I’m dedicated to loving this gift forward, empowering those still suffering from Lyme Disease and other debilitating health crises to reclaim their lives, their dignity, and their hope for a better future.

HOW YOU CAN HELP: In the course of providing  support to the first two individuals I’ve encountered, I’ve faced a grave inadvertent injustice that needs to be highlighted. Our story must be shared in the media AND IN CONGRESS to remedy it. Can you please help by spreading the word as far and wide as possible to Free the Forgotten?