Shante’s Support Web for Mutual Flourishing

(This fundraiser is being administered by my mom, Kara Williams Zenith, to protect the money from being treated as income by social security)

My name is Shante' Sojourn Zenith. I am an Earth Poet Edge Weaver attuning to primordial nourishment through the nervous system, creative expression and relationship to wider ecosystemic bodies of support.

My experiences living with chronic illness and neurodiversity have been invitations into forms of perception that have been actively suppressed within colonial structures.

I spend large portions of my time unable to engage in productivity, where physical discomfort or body sensitivity requires me to slow down to a different rhythm of reality underneath the pushing through of the dominant culture.

Over the past year and a half, I have experienced the failure of the social safety net systems within capitalism as I have been among the 70% of disabled people whose initial applications for social security disability have been denied after over a year of waiting, with the appeal process estimated to take at least another year.

This fundraiser intends to create a “Support Web” to support me in rehabilitative process and buffer my living expenses over the next six months while I put in place the foundational systems I need to navigate life as a disabled artist-practitioner existing with chronic illness and neurodiversity.

MY CURRENT SURVIVAL-MODE BASELINE LIVING WITH CHRONIC ILLNESS AND NEURODIVERSITY

My diagnoses include mold toxicity, chronic fatigue, depression, POTS, mast cell activation syndrome, insulin resistance, candida, and chronic migraines. In the process of seeking support for my chronic illness, I have also recently learned that I am living with undiagnosed autism and adhd, which illuminates why in addition to my physical symptoms, so many executive function activities have been so difficult for me.

The health things I struggle with on a daily/weekly basis include: The complexity of planning for and tending myself in chronic health flares like the 10 days around my bleeding time when I am living with increased fatigue, depression, and pain. The complexity of living with mold sensitivity, which means that after visiting most buildings other than my home I will have 24 hour migraines as my body detoxes from the environmental toxins. I have to keep to a very limited diet that requires extra energy to prepare and follow, and when deviated from results in increased mood swings and fatigue.

Compounding the overwhelm, my “executive dysfunction” make my attempts to grow my practice as an artist-facilitator exponentially more complicated as I have difficulty with organization and timing as I am also trying to keep a sense of continuity amidst the shifting textures of my many health issues. All of my daily life necessities (laundry, dishes, grocery shopping, cleaning, food prep…) pile up during the consuming illness flares and I do not currently have any other support for tending to them, so the backlog with daily life things is also very overwhelming.

As the social safety net systems have failed to offer support, I have been defaulting to societal conditioning around “bootstrapping,” thinking that if I just “tried hard enough” I could earn enough through my practice to afford the rehabilitative supports that will allow me to "function." This has been the pattern throughout the whole of my twenties and it always results in me getting burned out and crashing.

I spent the past year and a half almost completely unable to work as many of my chronic illnesses reached different levels of acuteness. I applied for disability over a year ago and have been treading water since then piecing together survival out of a small amount of food stamps and county cash assistance, student loan overages, donations from a previous GoFundMe campaign, and monthly financial support from my mom.

Over the past few months, my mom’s ability to continue to support me both financially and also with housekeeping has become more limited as she has already maxed out her savings and credit to pay for my medical expenses and is currently the full-time caregiver for my grandmother who has dementia, which is taking up most of her time and energy.

I also have not been able to access food stamps or cash assistance for the past four months since I missed the renewal deadline and then had to reapply, and the county is currently so behind on applications that they have a 60+ day wait time.

I’ve been able to make a little bit of income from the Ecosystem Spoons support group for people with chronic illness that I run as part of my practice Earth Poet Edge Weaver, but those funds only supported about a third of my living expenses and are now exhausted. I also graduated this spring which means I no longer have access to student loans.

The past few months I have experienced food insecurity and have had chunks of time without essential supplements and medications that I cannot consistently afford. This exacerbates my health conditions and makes it even more difficult to focus on my practice.

Especially as someone who has been “high-camoflaguing/masking” as a neurodiverse person, it feels really edgy to ask for what I need in a cultural context in which so many are struggling and “needs-not-being-met” is the complete and utter baseline of our society. But what I’m realizing is that for anything to change for me, I need additional rehabilitative and daily living support since the current survival stress is compounding the difficulty I’m experiencing with taking steps to grow my practice.

WHAT REHABILITATIVE SUPPORT DO I ACTUALLY NEED TO SHIFT MY BASELINE?

Naming this full list of not just the expenses that will help me to survive but the ones that will help me to shift my baseline towards rehabilitation and flourishing feels hugely relieving and hopeful!

My rehabilitative support expenses for chronic illness and neurodiversity (that in an ideal world EVERYONE WOULD HAVE ACCESS TO WITHOUT GATEKEEPING) are:

Ongoing monthly health expenses for full thriving: $2074/month

My full expenses include an additional $600-1200 of living, business, training, and playing costs that will not be covered by this fundraiser. I am getting closer to being able to meet that amount through my self-employment as a practitioner and having this Support Web for rehabilitation and healing should help to grow my capacity for that.

One-time additional health expenses for full thriving Spring-Summer 2023: $3701

Also, in terms of mutual flourishing, a lot of the practitioners who I want to work with are people who themselves are living with chronic illness or other forms of marginalization within this culture, so supporting them is another way that this Support Web can circulate outwards.

HOW WILL THIS SUPPORT RIPPLE ONWARDS TO OTHER BEINGS FOR MUTUAL FLOURISHING?

As I’ve been sensing into this fundraiser, it feels so deeply clear to me that inviting in this support is not just for me as an isolated individual, but that each tendril of nourishment I receive here will ripple out to the body of my creative practice and all the people who are touched by it.

The support I need as a disabled human in rehabilitative process is also mirroring the support that this culture is needing in terms of tending calcified patterns of ancestral trauma and learning to access somatic nourishment for collective flourishing. Many of the deeply rooted projects that are calling to me are somatic and artistic offerings that are not inherently “money making” but are medicine for tending to the fragmented systems of care within our community body:

I will still also be growing my somatic practice at Earth Poet Edge Weaver in small group and 1-1 facilitation and consulting, and also designing some other short courses and workshops in future. The baseline needs met by this Support Web will allow me to offer more sliding scale and donation-based options for these aspects of my practice as well since my medical and rehabilitative expenses will have been met in this way.

If you are yourself a practitioner and would like support the flourishing of my artistic-somatic practice, another way to help me right now is to invite me to guest facilitate, collaborate, or consult on existing projects. Invitations such as these are really helpful to me at this time as they allow me to come into an existing structure and offer my practice, with less of a load around the executive function/coordination piece of things.

My prayer is for mutual flourishing for all, that through following the depth of our longing and what it is calling us to bring forth, we can ask for and create the conditions of support even in the midst of this dying society.

Thank you.

—Shante'