THE MAY DAY MAY DAY PROTOCOL VOICES OF CHRONIC PAIN

from youarewithinthenorms.com

NORMAN J CLEMENT RPH., DDS, NORMAN L. CLEMENT PHARM-TECH, MALACHI F. MACKANDAL PHARMD, BELINDA BROWN-PARKER, IN THE SPIRIT OF JOSEPH SOLVO ESQ., INC., SPIRIT OF REV. IN THE SPIRIT OF WALTER R. CLEMENT BS., MS, MBA. HARVEY JENKINS, MD, PH.D., IN THE SPIRIT OF C.T. VIVIAN, JELANI ZIMBABWE CLEMENT, BS., M.B.A., IN THE SPIRIT OF THE HON. PATRICE LUMUMBA, IN THE SPIRIT OF ERLIN CLEMENT SR., EVELYN J. CLEMENT, WALTER F. WRENN III., MD., JULIE KILLINGSWORTH, RENEE BLARE, RPH, DR. TERENCE SASAKI, MD LESLY POMPY MD., CHRISTOPHER RUSSO, MD., NANCY SEEFELDT, WILLIE GUINYARD BS., JOSEPH WEBSTER MD., MBA, BEVERLY C. PRINCE MD., FACS., NEIL ARNAND, MD., RICHARD KAUL, MD., IN THE SPIRIT OF LEROY BAYLOR, JAY K. JOSHI MD., MBA, AISHA GARDNER, ADRIENNE EDMUNDSON, ESTER HYATT PH.D., WALTER L. SMITH BS., IN THE SPIRIT OF BRAHM FISHER ESQ., MICHELE ALEXANDER MD., CUDJOE WILDING BS, MARTIN NJOKU, BS., RPH., IN THE SPIRIT OF DEBRA LYNN SHEPHERD, BERES E. MUSCHETT, STRATEGIC ADVISORS

This transcript follows the struggles of individuals living with chronic pain, emphasizing that pain is often misunderstood and mistreated by the medical system.

It highlights the profound impact of this condition on their lives, leading to physical and emotional agony, social isolation, and even suicidal thoughts.

The source powerfully argues for the need for empathy, proper medical care, and a belief in the patient’s experience when dealing with chronic pain, advocating for systemic change and highlighting the devastating consequences when patients are abandoned.

Main Themes

The Systemic Failures of the Healthcare System: The narrative points to significant flaws in the current healthcare system, including difficulty accessing appropriate care, lack of integrated approaches, and the devastating impact of policies driven by external pressures rather than patient needs.

The All-Encompassing Nature of Chronic Pain: Chronic pain is portrayed not merely as a symptom, but as a fundamental reshaping of one’s existence. It is described as a constant, overwhelming presence that impacts every aspect of life.

The Struggle for Validation and Belief: A pervasive theme is the difficulty chronic pain patients face in being believed and validated by medical professionals and society at large. This disbelief leads to feelings of isolation, frustration, and inadequate care.

The Ethical Imperative of Physician Belief and Advocacy: The sources strongly advocate for physicians to prioritize believing their patients and acting as their advocates within the complex healthcare system.

The Double-Edged Sword of Pain Management, Particularly Opioids: The appropriate and judicious use of pain medication, especially opioids, for legitimate chronic pain patients is a critical point of contention, highlighting the negative consequences of overly restrictive policies.

The Psychological and Emotional Burden: Chronic pain significantly impacts mental health, leading to anxiety, depression, and even suicidal ideation. The emotional toll extends to family members and caregivers.

The Potential of Non-Medical Approaches and Personal Resilience: Despite the challenges, the sources explore the value of mindfulness, self-healing, and the strength derived from personal relationships and internal coping mechanisms.

Most Important Ideas and Facts:

• Pain as a Dragon/Solid Object: The metaphorical language used to describe pain emphasizes its formidable and ever-present nature. “pain is like this solid object that is coming towards us it’s a dragon and the dragon waits up and so there is this thing called pain that you’re gonna fight with over and over again you will be defeated” and “chronic pain is what i suffer every single day of my life for the last 30 years chronic means it’s always there i wish we had a stronger word than chronic because my whole life every single day i have to deal with my pain”.
• Pain’s Purpose and Value: Counterintuitively, some perspectives suggest pain has a purpose and that understanding its “value” is crucial for navigating it. “pain is not the enemy it has a purpose pain has shaped has temperature it has fluidity” and “we have to understand and see the value of pain”.

• Chronic Pain Leading to Loss: The personal accounts reveal the devastating impact of chronic pain on relationships, home, and overall quality of life. “i have lost everything in my life my home my friends my family everything”.
• The Isolation of Chronic Pain: The profound lack of understanding from the majority of the population is a significant source of distress. “99 of the population doesn’t understand what this is like”.

• Suicidal Ideation as a Consequence: The emotional burden of unmanaged chronic pain can lead to extreme desperation, including suicidal thoughts. “i got desperate i was again at the point of suicide” and “my life hasn’t been worth living for two years and I’m at the end of my rope”. The tragic case of Sherry Little underscores this reality.
• The Ethical Mandate to Believe Patients: Several voices, particularly within the medical field, stress the fundamental ethical requirement for physicians to believe their patients’ accounts of pain. “The duty of a physician is to believe a patient that’s the starting point for any medical person to not believe someone that’s telling you something is wrong with them is unethical one has to believe them from the beginning”.
• Chronic Pain as a Physical Disease: A call is made to recognize chronic pain as a legitimate physical disease, not just a psychological issue or symptom. “we have to as a population start realizing that this is a very serious physically pathological disease”.
• The Devastating Impact of Opioid Policy on Legitimate Patients: The narrative strongly criticizes the impact of the opioid crisis response on chronic pain patients who rely on medication for function. “family doctors have become terrified to prescribe pain medicine to people”, “Legitimate patients have become collateral damage abandoned by doctors and pharmacists who’ve been intimidated based on evidence that is specious and contradictory”, and “The pain patient who is legitimately ill is denied something based on the misuse of something that they need by someone else”.
• Physicians’ Moral and Ethical Obligation: Some physicians feel a deep moral and ethical obligation to continue caring for chronic pain patients despite the regulatory environment. Dr. Mark Ibsen’s story exemplifies this, leading to legal battles and ultimately the closure of his practice. “I felt a moral and ethical obligation as someone who took a hippocratic oath to do no harm and i saw that these patients were being harmed”.

• The Importance of Multidisciplinary Approaches: Effective chronic pain management requires a multifaceted approach that extends beyond medication. “Every disease we know requires multidisciplinary approaches”.

• Mindfulness as a Coping Mechanism: Mindfulness is presented as a tool for deconstructing the experience of pain and increasing capacity to handle it. “Mindfulness gives us this ability to deconstruct pain because not only are you facing the pain but you’re also facing the story of pain those experiences change from second to second moment by moment”.
• The Resilience of Children Facing Chronic Illness: Hunter’s story demonstrates the remarkable capacity of children to find joy and overcome challenges, even while enduring chronic pain. “I think kids are definitely hardwired to have fun and to overcome whatever’s in front of them”. However, his ongoing struggle and eventual resignation highlight the long-term impact.
• The Burden on Family Members: The impact of chronic pain extends to family, particularly siblings like Willow, who become a source of comfort but also carry the emotional weight.
• The Lack of a “Normal” for Those with Lifelong Pain: Hunter’s experience highlights the difficulty in understanding life without pain when you’ve never experienced it. “He did not know that you were not supposed to have a constant level of pain he had never in his conscious lifetime experienced zero”.

• The Bureaucratic Hurdles in Healthcare: Karen’s story illustrates the frustrating and sometimes fatal consequences of navigating a complex and impersonal healthcare system. “She just keeps getting transferred around back to this stupid robot push one push too and that was what pushed her over the edge and she committed suicide”.
• The Legacy of Loss Driving Advocacy: The deaths of Sherry Little and Karen underscore the urgent need for advocacy and systemic change. Linda Manion’s promise to Sherry, “her death will not be in vain,” encapsulates this drive.
• The “Invisible Public Health Crisis”: Chronic pain is identified as a significant, yet often overlooked, public health issue. “We have to address this invisible public health crisis of chronic pain”.

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Cast of Characters

Here are the principle people mentioned in the sources, with brief bios:

• Sherry Little: A woman suffering from severe chronic pain and multiple debilitating illnesses, including fibromyalgia, severe chronic pain, and inflammatory bowel disease caused by C diff. She is unable to digest food and has lost her home, friends, and family due to her condition. Facing immense suffering and hopelessness, she considers suicide and seeks help from advocate Lisa Blackstock. Her death by suicide highlights the devastating impact of chronic pain and perceived abandonment by the medical system.
• Lisa Blackstock: A patient care advocate who responds to Sherry Little’s plea for help. She travels to Los Angeles to support Sherry and advocates for her admission to the hospital. She is designated as Sherry’s authorized representative but is not notified of critical changes in Sherry’s condition or her decision to leave the hospital against medical advice. She is deeply affected by Sherry’s death and works to give pain a voice.
• Hunter: A young boy who was diagnosed with cancer in the fall of 2009. He underwent four years of intensive chemotherapy and steroid treatments, which, while saving his life from cancer, caused lasting damage and resulted in severe, constant chronic pain throughout his body. He struggles with the physical and emotional toll of his pain, which he initially believed was normal. He is often exhausted, frustrated, and sometimes gives up on further treatment.
• Hunter’s Parents: Their perspectives are presented throughout the excerpts, detailing Hunter’s cancer diagnosis, treatment journey, and ongoing struggle with chronic pain. They are deeply involved in his care and witness the physical and emotional impact of his condition. They acknowledge his pain is real and the difficulty he faces.
• Willow: Hunter’s younger sister. She shares a strong bond with Hunter and serves as a source of comfort and understanding for him. She is aware of his pain and frustration and helps him cope, demonstrating a deep level of empathy and support despite their age difference.
• Karen: A woman who developed chronic pain, including headaches and back pain, after a car accident at age 18. She also suffered from anxiety and depression related to her pain. She struggled with the physical limitations of her condition, including periods of being unable to be upright for long. She was later diagnosed with cerebral spinal leaks and underwent multiple procedures, but her pain persisted and worsened. Facing overwhelming pain and frustration with the medical system, she died by suicide. Her extensive writings, “Karen’s Journal,” became a testament to her suffering.

• Karen’s Partner (Likely her husband): His perspective is shared, recounting Karen’s journey with chronic pain, her diagnosis of cerebral spinal leaks, her treatments, and her struggles with the medical system. He was a source of support for her and was deeply impacted by her death. He compiled Karen’s writings into a book to raise awareness.
• Joey: Karen’s cousin. He is mentioned as being present with Karen and her partner when they visited the Pacific Ocean, and he took the last picture of Karen, noting that she was still in pain despite appearing happy.
• Dr. Mark Ibsen: A Montana-based emergency room physician who opened an urgent care clinic. He felt a moral and ethical obligation to care for chronic pain patients abandoned by other doctors due to fears surrounding opioid prescriptions. He faced investigation and sanctions from the board of medicine and the DEA for his prescribing practices, despite being cleared by a hearing officer. His clinic was ultimately closed, and he continues to practice medicine internationally, serving underserved populations. He is a vocal critic of the current regulatory environment surrounding pain management in the U.S.
• Linda Manion: Sherry Little’s mother. After Sherry’s death, she writes to the hospital seeking answers about her daughter’s care and questioning why she and Sherry’s advocate were not notified of crucial events. She is committed to ensuring Sherry’s death is not in vain and aims to become an advocate for others suffering from chronic pain and misunderstood illnesses.

This timeline and cast of characters are based solely on the information provided in the given source material.