*(permission to repost)*
Four fifteen in the morning and I'm thinking; what will it take for a
phoenix to reach us here ? I hold Linda, my wife's, hand as Florencio
Avalos emerges from the escape capsule ; his young son bursting into tears.
Children have been denied to us, by ME.
Linda, herself , has been trapped underground now since 1993.
The two of are buried deep . 2362 feet beneath the surface : that's a good
an estimate as any. Our Doctor called yesterday and admitted that her life
has not one of the ordinary pleasures that, well, make life even bearable.
Food, drink, socializing, music, reading, cinema, theater, walking...
joining me on my morning bike ride.
Both of us have a classy Dawes Galaxy : serious bikes. One time, before
she got ill for 17 years, Linda, head held high, flew off down a hill at
such speed I could not catch her up. Well she would, she used to cycle 18
miles a day to work. She's got the build of an athlete. This woman whose
days consist in surviving on cold salad and moving from bed to chair, in a
miasma of exquisite pain and paralysis. ...
...whose spider-infested bike lies long buried, down the shed, under years
of flowerpots, discarded lawnmowers and cardboard boxes....2362 feet beneath
the wicked, deliberately placed rock pile that is "CFS".
Each time someone uses the word "CFS" - or "forward slash CFS" , to
describe this disease, another rock is added to the hardening , growing
Down, down deep in the darkness here , though, lies "ME", like that three
thousand year old seed that was found in a portion of a tree, in an
ancient Egyptian tomb, back in the nineteenth century, Ramsay -defined ME,
with all its promise of serious research lies dormant . We were doing so
well back in the day , until the CDC came along .
That seed grew though , even after three thousand years.
We need people to know we are here. Peggy Munson's blog :
on what we can learn from the AIDS community, is the best thing I've read
yet on how to make ourselves heard.
Meanwhile, waiting here on a phoenix, with as much fierce courage as those
miners, we can at least begin to dig ourselves, if not out, at least no
(The Lived Experience of Severe ME)