Asked today if we were over-reaching our “agency”, when proposing adjustments or clarifications to various models, frameworks, or classifications.
And on this — I think our strategic mission and walking instructions are revealed in our phrasing. we work to be calibrated for that purpose, not overreaching.
For example: “Fast-flow-within-capillary-predominant pattern, within the slow-flow vascular malformation family” doesn’t claim CMTC has been reclassified as fast-flow. It says something much more careful: fast-flow-like behavior occurring inside a family that’s fundamentally slow-flow — which is exactly what “pseudo” and “light” are doing, hedging the claim rather than overstating it.
This is more than a defensible position for a doctor to read, not agency-overreach. We’re describing a nuance, not asserting a new taxonomy. No patient responds well to anyone, even doctors, who seemingly convey, “I’m a doctor”. We know it. We are in a doctor’s office, with questions, with real biological issues, while desperately needing help.
None of this compels us to sink into the child in a Parent-Child dynamic. We are adults, thinking, feeling, intelligent adults looking for an Adult-Adult conversation. It’s not popular to say or admit. Being born rare, builds a genuinely different human being. Adults when biologically and chronologically still a child.
Mother Nature did this and we are doing our best to understand. Be body aware, To be an active participant in living out being a 24-7 patient. Compelled to be the endless student of necessary, evolving science and medicine.
The hard core truth — we have lived the real and sad tales of born rare companions who died as children, woke up to find ourselves frantically being rushed to emergency rooms, accepted being permanently disabled and shut out from any form of employment. Among us are the misdiagnosed who no longer walk with ease or assurance. The mid-life diagnosis of high-output Heart disease whose root cause is congenital Arteriovenous (AV) anomalies that were not properly diagnosed from birth on.
Our agency? Lived experience! Being the one a doctor has never encountered before. The survivor of rabid infections that stopped one lymph node from killing us.
As sincerely as I can say this we are the very definition of agency.