JIll gives a synopsis of why, in her opinion, Tuberous Sclerosis Complex -"benign" tumors in every vital organ, probably every organ of the body, should be a template for shining a light on the cracks in our systems of care, AND illuminating a new path forward. Factoring in the energetics of TSC, aka the emotional experience involved in living with and/or advocating for someone with this condition will connect the dots, between the visible manifestations and the invisible manifestations and how the interplay of mind-body-spirit, and our growing understanding of it, does influence outcomes. This should all be remembered and cataloged!

Jill walks a razor's edge close to her breaking point at times, for good reason. She is playing her long game and knows that sharing the joys and pains of our experience with the energetics of TSC, IS worth being shared. We as a kind...humankind, do not seem to understand that when you throw a wrench in the gears, metaphorically, in a bodily organ, it has the potential to negate years of devoted attention to observing, and one is at risk of getting caught like a wrench in the gears yourself, in the complicated way that loving someone with TSC makes your heart grow. At the same time as you realize the many challenges, disconnects, miracles, tragedies, grief, loss, anger, fears, with which all affected have been faced and the frustration to integrate the full lived experience in such a way that you can build on this knowledge and heal and move forward to a place where there is hope that the full monty of managing this condition was understood and valued by our systems of care for the deep knowledge it provides and the chance to improve on what we know, for humankind forever. And you still love it all anyway. It goes easier if you have to accept that a wrench may be thrown in the gears...at any given moment, and undo everything you may have done for years on end, and hold onto your deep inner wisdom that you are here for a reason, you are deeply worthy of speaking out loud when things with which you are faced don't make sense, when there are no good answers and life is dragging you to the edge of the drain of despair daily. You know this, live it, get up and show up and still find love is the answer and the way through, but boy oh boy, please listen to me, listen to us, and value our deep lived experience coupled with the depths of love we have harvested in our hearts and learn. If I/we/you can walk through this, we all can. I love you.

Title inspired by Alison McDowell and her blog, https://wrenchinthegears.com