Awash in "wow"

We are putting together a program called, “CRPS: Art & Spirit.” We aim to collect information — and creative work — from those who manage this disease with extra poise, focusing on what works (rather than profits or politics) and finding our way towards a cure.

The paperwork involved in getting funding and charitable status is a bit more than I can manage. Getting help with that is my holiday gift from Mom.

Designing a web page is essential to getting any message across. After months of flailing, a design suddenly came together that includes everything we need. (Details and testing are still in process.)

A hurricane hit as I was preparing for my journey. Apart from a few bad pain days and a localized power outage that provided some enforced rest, it’s gone easy on me (so far).

I might be able to get some small-business breaks from my bank and phone company (and if I do, I’ll link them.)

The clouds are clearing in more ways than one.

Curiously, I’ve started wondering what I’d do if I no longer had CRPS. I realized that, given how much has been beaten out of me and how much under the surface has been revealed, I’d probably NOT sink back into anxious denial and run as far from this as possible (as many with solid remissions do.).

I could be wrong but I think I’d stay in the thick of it, riding herd on this project with the power and vigor of an _able-bodied_ person — one who doesn’t take it for granted — and keep working a cure for everybody who has it.

None of us is free until all of us are free. I feel it in my bones. Even a perfect remission won’t take me off this road. That well-honed determination will keep me in the game. And, with a structure & funding to back me up, it’s hard to see how any success could stop me.

But what do I know? I’m still in the thick of the illness as well as the work. No point in imagining that things are different, but it’s fun to think about.

Dreaming is free, and when barriers seem to be rearing up only to fall away, anything is possible. 


White matter map and why it matters

This article describes a new, life- and reality-based map of the white matter in the human brain:

First Micro-Structure Atlas of Human Brain Completed

It addresses two crippling gaps in our understanding of the brain:

1. Hitherto, brain models have been derived from microscopic analysis of a handful (so to speak) of cadaver brains.  Since significant physical and chemical changes begin to happen immediately upon death, this puts a hard limit on  how accurate these models can be — and gives us no real clue about the true extent of the inaccuracy, because there were no living models to compare them with.

2. Until now, the science has focused on grey matter. We don’t even really know what white matter does, except convey the messages the grey matter processes. (It’s a bit like not knowing anything about your internet uplink — not ISP contact info, speed, bandwidth, nor hardware — even though your work and connections depend on your internet access. You can still get something done, but if anything goes wrong, where do you start?) One day in the near future, we’re going to be really embarrassed about ignoring white matter for so long.

This map was made as follows:
– using MRI that yields unprecedented resolution, able to provide solid estimates of such details as the width of different neuron fibers (!),
– done on living brains,
– in the skulls of 100 different people — a much more meaningful sample.

This is a great day in neurology. All of us with CNS disorders have a brighter future, with information from this map making its way into the science.