what human needs community
20171202–0507, over-exertion & community scaffolding
I’m going to describe to you a very interesting word problem — -some human math, for your enjoyment. though somewhat non-linear, we still have a template.
these usually start by introducing a challenge, for instance…
from startlingly promising recoveries, I can get taken down very fast, and have been.
…and progress to a conditional…
to maintain our gains, an enormous amount of physical activity and supreme effort is required.
…which can be expanded to enormous detail, certainly daunting in scope, and yet, promising a certain intriguing nourishment in its complexity and depth…
we are struggling to keep up with hundreds or thousands of immediate physical needs and grave decisions, the compromise of which will set us back dangerously for days or weeks or more. such as — -
- specific breathing patterns that must be engaged throughout the day and other activities to avoid collapse of the breath and shutdown of the vagus nerve
- a long list of specific tasks that must be done every day, in patterns that last a week or more to ensure the greatest likelihood of restful sleep, rarely achieved (constantly changing bedding, remediating the indoor environment, endeavoring to detoxify and strengthen the physical body to reach a more secure physiological threshold, and endless items more)
- robust eating and medicine schedules, and a medicinal food preparation regimen that requires a full-time chef (me) to avoid digestive failure.
- …struggling at one’s last capacity in isolation to make meals that would beautifully befit a community table
- …packaging them to freeze and hoping that the body is strong enough again to make the next broth or juice by the time the frozen portions run out
- …and all the dirty dishes that go with making beautiful and healing community cuisine (and no dishwasher, which can cause reactions in many of us)…
- loads and loads of extra laundry to be specially treated for toxic sensitivities…
- … remembering of course that the longer dishes and laundry sit out, unfinished, the greater mold spore proliferation will threaten one’s physiological threshold in the house…
- … and if your function and livelihood are dependent on maintaining a set of skills that involves EMF fields, like mine does, and gosh, like most people’s! Well, that is a whole new interesting adventure.
- needless to say, this list is far from complete.
…and once we are feeling thoroughly exhausted in an attempt to contemplate it all… we begin tentatively, warily, touching on possible solutions. This of course often comes along with new and unique additional problems.
These problems, thankfully, help to clarify the solutions best for our purposes:
this list assumes that the survivor of severe environmental illness is lucky enough to be in a good-enough living space by themselves.
if you add other people, or if the living environment is too deeply compromised already, the number of necessary physiological decision points and crucial needs balloons.
without a certain aforementioned missing community scaffolding, this is usually beyond the capacity of the survivor to meet.
this is why so many end up living in their cars and homeless.
common and unconscious societal patterns make it highly likely that those around the survivor are already holding them responsible for their failure to overcome their own legion of obstacles, primarily because of lack of understanding, and some weird misinformation campaigns.
(if you would never do such a thing, please stand with survivors in public solidarity in the face of those who still do.)
over-exertion is never far away, even in the moments after reporting the latest physiological miracle that has still somehow been accomplished.
only rarely does another person recognize, without this experience themselves, the crushing and destructive amount of physical exertion that goes into even failed attempts.
(and then many people feel relief having heard about the successful attempts, and do not realize that it took the very last bit of desperate adrenaline to accomplish.)
this scenario is an item on the very long list of safety concerns that acutely threaten the lives of survivors of severe environmental illness… which does not seem to be communicated effectively with the language we have.
it is also mitigated by (our invisible, missing) community scaffolding.
I see others try to communicate this, and give up in despair, over and over again.
me too.
but I think I’m doing better describing it this time.
here is an instance related directly to communication:
if I communicate by voice instead of text, there is much less reach for messages of urgency.
speech to text doesn’t work properly unless a device radio is on, so if I am unable to type coherently, I must turn on the wifi or the data signal.
I am now sacrificing a large portion of my self care in order to be able to type and sit in a Wi-Fi field almost every day, because if I do not continue to communicate most effectively and urgently through text, the attacks will pile up too fast and I will be unable to communicate at all through the neurological inflammation.
(when this is at its most bad, I may forget how to use English for a while, or find that I cannot move my body.)
whether it is because of an EMF field, exposure to paper particles, or struggling to force words through inflammation, communication efforts exhaust and compromise me quickly if my threshold is already lowered.
if the thing I communicated is not heard and understood by others… and through the fog of re-trauma that hangs over the last superheroic effort… it’s hard to remember why I tried again.
to be constantly exhausted in a state of severe environmental illness means one’s physiological threshold is much more vulnerable to stressful challenges, even stresses that others effortlessly take for granted and never think about.
This results in worse attacks, worse pain, a much more difficult time pulling out of it, and less resilience gained when other things are going well.
Swiftly returns the spectre of one’s worst symptoms, frequently followed by those symptoms themselves, like:
- anaphylaxis and shock
- mast cell release
- gut rupture
- heart failure
- cold intolerance that paralyzes the body and traps a person in dangerous places like the tub (if you’re lucky enough to have a tub)
- inability to breathe
- increased neurological inflammation
- oxygen and nutrients cut off from the brain
- acute and severe stabbing pains in the spine and head
- increased likelihood of unpredictable confusions that keep one from being able to solve very simple problems — — which becomes life-threatening very fast under circumstances of isolation, social disintegration, and physical hardship
weathering this challenging landscape, one’s next efforts will be less predictably successful because the body has simply been under too much stress for too long, and no real relief.
constant overexertion, invisible to those who have not experienced severe environmental illness themselves, destroys the positive progress of individuals who are often then blamed… for not trying hard enough.
it does not matter how well healthy people think the survivor is communicating, as has been so frustrating in my case.
because the body is overwhelmed with trying to get through traumatic symptoms and effects privately, in the moment… the sheer enormity of the number of urgent items that does not get communicated destroys most capacity to communicate it.
this time, will it get through? will someone understand?
by the time I’ve written most things, it is hard for me to remember them, and I am not able to reflect well on whether the communication was coherent or not.
I depend on others reflections and responses in order to find out.
and of course, I am lucky if I can read or listen or watch in order to receive those reflections and responses, having so thoroughly decimated my resources in reaching out.
I have been so incredibly lucky.
so I keep moving, and see if the luck holds up.
this of course leaves the question of what to do about it.
I use the words community scaffolding over and over again, but I have not clearly expressed what that means.
for any one of us, there is a trauma tangle to work through; nobody has the community scaffolding they need anymore.
nobody you, nobody me — nobody. because there is no scaffolding of nourishing and collaborative community around the subjects of severe environmental illness — which every person has some risk now of encountering themselves.
the community needs of survivors of severe environmental illness are an extreme example of what is necessary for non-survivors, too: human nourishment, belonging, connection, compassion, and care.
are these just a bunch of words, or are we willing to craft them into an approach that heals and saves us?
Finally, this becomes a discussion of possible solutions. for instance, this “community scaffolding” someone has been going on about…
this is community scaffolding:
whether you are a survivor or not, whether you are healthy or not…
if you and I are in communication about these crucial human needs, we are already starting to solve the problem.
that is what is necessary in the face of life-threatening overexertion… widespread misinformation… and the personal hardship of any one of us.
these kinds of human nutrients are already fundamental to your functioning, whether you yourself face life-threatening overexertion or not.
Community scaffolding is what we build to ensure that *all of us* can engage these nutrients… learn from one another… and learn to connect our selves, each of us, with what heals us most effectively.
in co-support.
together.
that sounds nice, doesn’t it?
if you feel you understand any part of this — or simply want to — we would like your help.
we are creating a resource to support all who encounter severe environmental illness, whether you yourself may one day get sick, or whether it is someone you care about, or crucial members of your community.
we need you.
we think you might need us, too.
