No Impasse is Impassible.

Report 20171204–0728, Impasse & Vehicular Solution

The impasse at hand

I am currently at an impasse we predicted in September. Like other impasses, it is not entirely impassable. :-)

Here I will describe to you that impasse, and the highest leverage solution we have identified: transportation by independent vehicle.

With access to an independent vehicle, we will not only supercharge my recovery speed, but we will also have a means to use my story, collected documentary resources, and Intuitive Invisible group efforts on behalf of raising money to support the severe environmental illness community directly.

This episode begins (as most of them do) in an EMF field.

. . .

This refuge I am able to stay in temporarily on Plum Island is a simple, beautiful little 1st floor apartment with an upholstered living room (as living rooms tend to be).

Since it is directly on the wild East coast beach, it is quite windy and cold — and the kitchen is quite cold (problematic for me), as it is also the most airy part of the house (wonderful for me).

I steer clear of the areas with upholstery (the warmest part of the house), where little mold guys like to live.

I also steer clear of the room I am sleeping in except at bedtime, to avoid contaminating that area and further compromising my sleep cycle.

We know of a ~$150 stopgap solution — more sets of long underwear, tops and bottoms (see footnote) — which will give me some respite, and is necessary for other reasons, but is not a real fix for the challenges described here. It also requires that I replenish my emergency fund, currently at zero, and find a way to get safety and health supplies first.

All of these things are near-impossible for me to do without an independent vehicle, for which we are hastening to find the most practical, accessible, and immediate solution.

Until then, I cannot get away from the concentrated EMF fields.

There is nowhere left in the house for me to go that is both away from the EMF fields and possible to warm to a temperature my body can operate in — even bundled up quite warmly, when I have enough of the necessary clothing remediated and useable.

I do not have the physical strength to package away my electronic equipment and then take it out again when I’m ready to use it, and it is so integrally necessary as a disability aid in such a variety of circumstances, it would be very foolish to not have it ready to use as soon as I have the fleeting and unpredictable capacity to use it.

The physical strength I do have is going into the huge amount of effort it takes to bundle up and put on warm enough gear to go outside… and making medicinal food, post digestive failure, that must become more detailed and complicated to prepare as my threshold drops, when I am low on the recovery “power curve.”

My physical strength also goes into decontamination showers and detoxification baths that must follow any significant exposure to problematic toxins — often mandatory and urgent following interactions with laundry, postal mail, other people, and unpredictable environments I encounter.

I also have to decon regularly when spending long periods of time in concentrated EMF fields, especially near paper (as I do when I am sending you the most coherent and actionable updates).

Constant decon runs out the hot water very quickly, and especially on the coldest, windiest days — when the bathroom is much colder — is very hard on my body.

Going to the wildest, cleanest air is how I recover most rapidly and offset the challenges represented by exposures in and around the house.

So once I bundle into cold weather gear — an enormous effort in itself, in a fragile physiological state — I cannot walk right out the door and plan to stay near the house.

I must walk out a long path towards the ocean in order to reach the air where I recover most effectively and quickly. That’s where the greatest gains are made.

Along with this genetic sensitivity to low levels of toxins, I have hypermobility in my ligaments.

These two traits together are common to many survivors of severe environmental illness.

In context: I have been overexerting myself constantly, without rest, for many months, through various states of malnourishment, injury, and physical trauma.

The addition of any small mold exposures or common endocrine-disrupting substances (in any place where human beings live) throw my hormones out of balance, which affects ligaments considerably.

I do not yet have enough muscle tone to protect my body as it tries to move — muscle tone that must be gained under gradual and predictable conditions we have not yet attained.

Getting out to the beach is quite a challenge.

My joints start to dislocate and the pain is incredible.

Walking out that long sandy path to the ocean can be next to impossible if I am low on the power curve, especially in 40 or even 30 degree weather, and with unpredictably high winds on this wild beach.

Coffee electrolyte enemas produce very helpful physiological supports and help me feel a little stronger. But I have not been strong enough to prepare and execute them solo for a few weeks now.

There is a list of other similar interventions, either expensive or physically exhausting, that help — but not quite enough to make the difference we need.

I will still need the long underwear, and the long underwear will produce a significant difference.

But the long underwear will not ultimately solve the problem — only postpone some of the fall-out.

Additional physiological supports are crucially necessary for safety and stabilization.

With access to an independent vehicle, I would not have to put on as much heavy winter gear.

I would not exacerbate already damaged joints with the need to walk (bobble, like a baby turtle) the long sandy path in order to reach air clear enough to improve my threshold and spot on the power curve.

As was detailed for us originally (patreon post here), there are a wide variety of preserved areas and wild spaces in this location that I could drive to myself— -

• Maudslay State Park
• Salisbury Beach State Reservation
• Mill Pond and Pipestave Hill
• Battis Farm and Lake Gardner
• Coastal Trails
• Pawtuckaway State Park
• Old Town Hill
• Trustees Lands
• Essex County Greenbelt

…but cannot reach without a vehicle prepared to be safe for me to drive, and available when I am most able to use it.

Body care resources

The prolonged trauma of severe physiological stresses is undeniable, along with the extreme isolation that comes along with unaddressed severe environmental sensitivities.

And like many with severe invisible illness, I also have complex sexual trauma from abuse and assault related to my helplessness in illness over a long period of time.

A body experiencing this kind of hardship needs physical touch in order to heal.

Massage and hands-on manipulations for body health and structure are vital, and missing.

There are caring communities that collaborate to assist one another with healing body work.

These are communities I can seek and reach out to… but only if I have an independent vehicle. Otherwise, any message from me to a community like this is a request for strangers to care for an invalid.

With an independent vehicle, I have the power to move in and out of community as needed to avoid severe symptoms, and am easily 70% more self-sufficient.

There is a much greater list of problems that will be solved with an independent vehicle, and possibilities that open to us.

Vehicle solution specifications

• This vehicle must be available to me at any moment I am well enough to use it.
• There must not be any other person who needs to use it, who might make the environment of the car unpredictable with perfumes or other unintentional toxins.
• And I must be able to remediate it at any given moment according to specific procedures, myself, without having to expend great efforts in communication about those things with someone else beforehand.

These are the parameters by which an independent vehicle produces profound results in my immediate physiological recovery, particularly through relieving extreme overexertion.

They are also the parameters by which we can most effectively and quickly solve problems of local community and social services assistances, which are accessible to disabled people without cars only because those disabled people are able to tolerate shared transportation environments with unpredictable toxins.

At my current level of severity and reactivity, I am not able to tolerate those environments without days or weeks of negative and cascading physical repercussions. I will one day be able to do so — but I must have sufficient time to focus on physical recovery first.

Because of this, our progress through engaging the wonderful services in this location has slowed to a crawl.

Without an independent vehicle, support from government assistance through Medicaid, local charities and organic food pantries, and loving community interactions are almost entirely inaccessible to me.

With access to these local and government supports, concentrated and more accessible in this area than most others, improvements in my physiological safety and capacity will be rapid.

Also urgently, the individuals who have been most struggling to offer me sufficient support in these constant situations of urgency and life-threatening consequences — my family, many dear friends and collaborators who have offered what little support they could — will finally have the relief of knowing I am connected with standard resources that are already available.

This is crucial, and of course mandatory for any process we are hoping will result in either disability assistance, or sufficient recovery that disability is no longer necessary.

Our approach

We are looking for organizations that arrange car donations and car sharing for disabled people with similar circumstances.

We are also urgently seeking information on how much it would cost to rent an independent vehicle for a week, and for a month. Some rough and uncertain numbers have been included below.

I do not have my own driver’s insurance currently, so that must be part of the cost that is considered.

I have a current driver’s license in Massachusetts.

Although there are challenges and risks associated with getting a car from a rental agency, having a vehicle even for a limited time will relieve a significant amount of the overexertion that is most endangering me right now, and let me move much more rapidly through the process of accessing services and community.

Awareness & fundraising for scalable, community-wide Refuge & Recovery solutions

With an independent vehicle, I will also very quickly have the ability to visit groups and organizations to talk about severe environmental illness, toxic mold awareness, and multiple chemical sensitivity.

With the help of some others, I have mostly developed an educational musical program that must be refined in practice, evolved through group interactions that tell us the most sensible ways to proceed.

After months of rehabilitating my voice and body strength for musical approaches, the wild ocean air has given me particular progress — so I am already capable of singing it, if feebly. :-)

In offering this program to church groups, preservation groups, and other resonant communities, my request to them will be to spread the word and help us raise donations of volunteer time as well as dollars.

We need community more than money.

Half of the donations received will support my recovery and continued work on these projects, and half of those donations go into a Refuge & Recovery Fund that is accessible by request to others with severe environmental sensitivities working with Notes on Refuge.

Each program will be recorded, and a progression will be created where my recovery is more and more visible as my speaking and singing become less feeble over time.

These recordings will be made available in the ways that are most helpful and nourishing to the severe community — based on current conversations with others in that community, and continuing feedback — and to efforts in raising awareness and rescue funds.

Amounts raised in this way will be kept in a Google document until more assistance with finances is available, 501(c) status, and related administrative.

We believe this is the beginnings of a framework that others can duplicate to tell their stories and share humanitarian art for the benefit of the greater EI community — to coordinate their own more likely survival and contribute to community “scaffolding” that makes all survivors of severe environmental illness (and those who have not yet become such survivors) safer.

Once I know that an independent vehicle will be available to me, I can start scheduling these programs immediately.

If you know someone who may want to do something similar, please put them in contact with me so that we can support them in collaboration, and amplify all our efforts.

Here are the next steps identified in group discussions, which I will paste here to complete this overview:

Meg can stay on Plum Island till April 15 if she has an independent vehicle and sufficient support for the rent payment.

She is currently able to stay till January 15th, which uses up the “last month” rent payment that was part of the October 2017 move-in amount, with security deposit.

Some of our original funding plans for relocation support collapsed. And yet, the gains that have been made despite this have been considerable. (Meg asks to add: Quite frankly, miraculous. We concur.)

We do not yet have a plan or means to transport Meg to Pennsylvania without severe risks to her health, and to the recovery she has gained since arriving in Massachusetts.

In order for Meg to stay in Massachusetts past January 15th, we would need the following:

• $4000 rent (an additional month until February 15th, and a new “last month” payment that will carry her through to March 15th)
• ~$900 heating costs
• At least intermittent access to an independent vehicle (which looks to be <$400 for a week and <$1000 for a month, depending on the car agency and the insurance we get)

With a car rental even for 5–7 days every 3 weeks or so, Meg’s safety and resilience will improve considerably.

Getting a rental for several weeks or a month means less effort needed to offset the challenges of picking up and returning the car (which will hit her physiology and take down her function around those times).

Enterprise rental insurance, for instance, adds $21/day to the cost (for “Personal Accident Insurance ($6) and “Supplemental Liability Insurance” ($15).

Meg’s family is reaching out to charity organizations that coordinate donated vehicles for disabled individuals.

If you know of an organization that could help us with this — temporarily or with the donation of a vehicle — email invisible@gut.media or contact Meg directly.

Our rough total, including the vehicle ballpark, is <$5900.

$2000 of that was originally due December 15th, but may possibly be acceptable to the landlord to receive with the greater amount before January 15th. (Meg will find out how we can best serve his needs as well, as soon as we can determine whether we are able to raise enough money for her to stay longer — which he will surely want to know as well.)

If we are able to raise this amount — something we are not at all sure of, but exploring with great purpose — it ensures Meg a longer stay in Massachusetts, where the medical and support resources are much more robust for her needs right now.

It will keep this initiative from being massively interrupted by another emergency relocation that we know we do not have the resources or sheer capacity to execute — and will predictably re-expose Meg to locations and environmental influences she is now more significantly and intensively reactive to, having progressed considerably through the expected intensification response.

This could destroy all our hard work very quickly, so we want to avoid doing it in too hasty a fashion.

Keeping Meg where she is for some months longer ensures she will not have to immediately go through the grueling process of changing her Medicaid and disability efforts back to Pennsylvania, after having only just managed to successfully begin the processes in Massachusetts.

We also understand that she is far more likely to finally receive federal disability support (which will assist with rent payments and other needs) if she stays in Massachusetts to complete that process, and make it much easier for her to receive that disability support in Pennsylvania later on, because of the increased understanding and accurate information Massachusetts has in regards to environmental illness.

The longer Meg can stay where she is, the more time we have to build the safest transition plan for getting her back to Pennsylvania to regroup.

This promises significant recovery.

With Meg’s function where it is currently, that sounds very exciting — and worth a profound effort — to us.

It also promises a greater conversation in public about the need for building urgent resources for the severe environmental illness community — because truly, no individual can recover from this alone.

Our best solutions are in community, together.

So this is what we are trying to do.

Is it possible you may be able to help?

Q&A

1. (if you ask a question, we will put it here, and we will answer it.)

Footnotes- —

We know that four more sets of top-and-bottom long underwear will allow me to spend more time in the kitchen without being so cold that my function drops to nothing — where I literally cannot move or think — and will allow me to go outside more often (since I frequently run out of warm clothes and cannot self-care until someone comes to help me do laundry).

I have not yet found a place to purchase them that is inexpensive enough to direct others to in requests for assistance, and need help finding a way to purchase these sets in greater numbers for cheaper prices. Or, I need to wait to have a car, and get them at the thrift store, which will be significantly less expensive.)

2.

Here’s a thought from the group.

If we can “employ” Meg this way, through recovering from illness, and help her get what she needs to survive it… can we not also “employ” others, to share their healing work in a way that lets support for them stream in, and make the difference they need, too?

Maybe one day it’s a clean organizational website with a simple sign-up process that results in an income stream, community resources, and practical assistance for those who cannot engage the process directly themselves… to support any individual in illness and hardship who has meaningful and healing expressions or other work that they want to share as part of their own most effective healing process.

Something like HitRECord, for instance.

If you know someone who wants to do this (any of this), please email invisible@gut.media so we can work on setting something up.

If you can help us develop, clarify, and publish more widely this message, please contact Meg because wow, she needs your help. ❤