Author: paintom

  • Protected: Getting to Know Kadeem Gayle

    There is no excerpt because this is a protected post.

    Read more

  • The Long Game

    Why patient engagement won’t be fixed by Friday I have lived with chronic pain for more than 37 years. I have facilitated a peer support group in Los Angeles for 27 of them. You learn something when your work is measured in decades instead of quarters. You learn that the things most worth changing rarely…

    Read more

  • The Man on My Wall

    On comparing yourself to the person you used to be Ever compare yourself to the person you used to be? I don’t have to imagine him. He hangs on my wall. A wall full of medals and certificates, framed and dated, every one of them saying the same thing: this man was competent at his…

    Read more

  • Two Emergencies at Once: Earthquake and Wildfire Readiness When You Live with Chronic Pain or a Chronic Condition

    For most people, an earthquake or a wildfire is a single emergency — the ground moves, or the air turns to smoke, and then the long work of recovery begins. For those of us living with chronic pain or a chronic condition, it is almost always two emergencies stacked one on top of the other.…

    Read more

  • The Scale That Asks What You Can Do

    How the ACPA Quality of Life Scale measures the day, not the hurt. Every person living with chronic pain knows the question. You walk into the clinic, you sit down on the paper-covered table, and someone asks you to rate your pain from zero to ten. I have answered that question for thirty-seven years. I…

    Read more

  • The Science Speaks for Itself

    A clinician said that recently. I have been thinking about it ever since. Someone passed along a remark a clinician had made. The question was whether patients belong in the room where research gets designed. The clinician’s answer was clean and confident: they did not need to hear from the patient. The science speaks for…

    Read more

  • How to Become a Chronic Pain Advocate (One Path, Not The Path)

    People ask me how I got into chronic pain advocacy. The honest answer is I didn’t plan it. I lived with pain long enough that I started paying attention. Then something specific happened. I joined a chronic pain support group, and sitting in those rooms, I realized the problems I’d been facing weren’t mine. They…

    Read more

  • The Folded Sheet of Paper in My Pocket

    What twenty minutes at the kitchen table taught me about fifteen minutes in the exam room I have been a patient with chronic pain for a long time. Long enough that I have lost count of the exam rooms. Long enough that I can tell, in the first thirty seconds, whether the visit is going…

    Read more

  • You Can’t Pour Water From a Broken Pitcher

    For three days this week, I could not think past the end of my nose. A flare of chronic pain arrived with complications from diabetes riding alongside it, and the two of them together cleared my calendar without asking. I stayed in bed. I waited. My only job was to let my body do whatever…

    Read more

  • What the ENGAGE Report Means for a Chronic Pain Advocate

    ‹ PWLE Voices — Issue 1 · June 2026 Research Spotlight What the ENGAGE Report Means for a Chronic Pain Advocate A new NIH report sets out a roadmap for how researchers should work with us. Here’s how to read it — and how to use it. In November 2025, the NIH published a report…

    Read more

  • Who Is a PWLE?

    ‹ PWLE Voices — Issue 1 · June 2026 Foundations Who Is a PWLE? Four letters, one growing role in research — and the words a major new NIH report uses to describe it. If you’ve spent any time around chronic pain research lately, you’ve probably seen the acronym: PWLE. It stands for Person —…

    Read more

  • Getting to Know Laura

    ‹ PWLE Voices — Issue 1 · June 2026 Meet a Fellow PWLE Getting to Know Laura Quiet water runs deep. A retired kindergarten teacher and reading specialist, Laura listens carefully, asks the practical question nobody else thought of, and lives by a simple rule: movement is medicine. By Tom N. · PWLE Voices Laura…

    Read more

  • Same Ocean: What a Chronic Pain Support Group Actually Offers

    Same Ocean: What a Chronic Pain Support Group Actually Offers

    We all have different situations, but we all swim in the same ocean. You are not alone in this. The first time I walked into a chronic pain support group, I was looking for a fix. Not a cure — I had given up on that word — but something. A practical tip I had…

    Read more