Head Above Water

More than 75 patients living in the worst degrees of pain have lost access to their medication because of an interstate law dispute. They suffer from stigma, controversy in the medical system, and doctors who are afraid. They are at risk of losing both their dignity and hope. I know where that road can lead, because I have been there. (If you are in a dark place right now, in a noman’s land feeling there is no safe place to turn, please call or text 988. You are not a burden. Your life matters❤️)

This is not the first time patients have been cast out into a noman’s land—their lives at risk. This article “Head Above Water” is one such story, facing similar obstacles: from my years without adequate care (2007–2018), and it’s why I’m asking you not to look away today. 

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 was just one of the symptoms of a health condition that had impacted me for over a decade.

From the impact of this same pathogen, the first guest of Emily’s Place The One—described longing to “unzip the prison of her body to be free” (inhumane suffering) and anthropologist PhD Aaron Jackson related, "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.

For patients like Wren Sparrow, Women’s Studies PhD, the cost of a medical system divided against itself was far worse. She was forced without adequate means for treatment back into the home of her childhood abuser, and there more severely abused as a disabled adult, where she nearly took her life.

MY WORLD CHANGED when a stranger named Emily heard my story and changed the trajectory of my life. The gift of her care and devotion, can be found at The Gift of Emily. After recovering, thanks in large part to her help, I decided to love the gift forward: helping other women trapped in suffering *without a voice* to reclaim their lives, their dignity, and hope for the future.

TODAY, A NEW GROUP OF PATIENTS face similar obstacles. In a medical system divided against itself again, doctors who take a stand against the norm walking alongside—seeing patients the system no longer sees—risk their careers to defend them. Their patients fight stigma, dismissal, physicians turning away, misjudgement, skepticism, losing hope, despair. The risk of suicide was real for myself, for Aaron, and fWren under such conditions and IT IS REAL for over 75 patients right now.

Hope is already far from them. The least we can ask is to make certain they are not robbed of their dignity. THE FOLLOWING MESSAGE TO DOCTORS IS HAIL MARY TALK. All of these patients have been turned away already. Their conditions complex. Their pain the highest among us. Life-Altering Severe Intractable pain.

TO THE CLINICIANS WHO RECEIVE ONE OF THESE PATIENTS:

• The person in front of you just lost their medication through no fault of their own. Please treat them as a patient, not a suspect.

• Abrupt loss of pain medication is dangerous. The FDA has warned that sudden discontinuation has led to serious withdrawal, uncontrolled pain, psychological distress, and suicide. It also advised monitoring patients for suicidal thoughts.

• THE CDC 2022 GUIDLINE SAYS clinicians seeing patients already on opioids should avoid rapid tapering or abrupt discontinuation. THe CDC’s Guidance for administrators adds that clinicians should not be penalized for accepting patients who take opioids.
  
  
• Ask gently how are they holding up, including whether they feel hopeless. That question can save a life.

• Even if you can’t take them on long-term, help them bridge to someone who can. Please do not close the door.