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Social Media, Isolation, Disability and Spirituality

Or, how to be human right now.

Back in June, when things were looking up pandemic-wise I was inspired to deep dive on some social media research. In what was pretty much an argument with myself, I laid out all the reasons why social media is a problem for me, for humans, and the negative trajectory of our social behavior when it is driven by an algorhithm. At the beginning of July I published the article and took what I thought would be a long break from social media.

Like so many things in these past weeks, I’ve had to reconsider my initial assessment, overlay my expectations and desires with the congruent reality, and lessen my ever present binary conditioning. This writing is the result. Not an answer to the question of whether social media is good or bad, I have no answers there. But a conversation about the challenges of being disabled in a global pandemic, the potential spiritual uses of social media for connection, and a desire to be present with our flawed humanity as we navigate this impossible situation.

A bit of backstory: I have been progressively disabled by chronic illness for more than a decade. Prior to disability, which was catalyzed by a two year long bacterial infection that went undiagnosed due to economic instability and job insecurity, I was a university professor and PhD student. That all ended with severe illness.

My basket of diagnoses includes conditions that are not widely recognized or respected in the medical establishment — mold illness, known as Chronic Inflammatory Response Syndrome, Multiple Chemical Sensitivity and Myalgic Encephalomeylitis/Chronic Fatigue Syndrome. Because of institutional and academic bias against these diseases it has been difficult for me to receive quality information, support, treatment or care. When I finally was diagnosed with ME/CFS in 2016 my doctor sent me to Facebook for support. There are no specialists in these diseases in my region, no resources for folks with these diseases in any of the major medical systems here, so online groups became the only place I could access information about my disability.

In 2017 I began connecting with others around disability and spirituality on Instagram. Since I was primarily homebound and mostly bedridden, it felt pretty miraculous to have a community, to share my writing and art, to be supported in my work.

If you struggle with social media, however, you know the dance. The expectations. The obligation. The interpersonal challenges. The terrible comments. The disgusting DMs. People plagiarizing art and writing, courses and concepts — sometimes word for word. For all of the positives social media brought into my disabled life — including real friendships and powerful insights from other folks with my illnesses — the negative consequences I could not seem to prevent, and I did not experience them anywhere else in my isolated, low drama life. They were specific to social media, its manipulation and commercialization.

The negatives would not lessen amid the pandemic.

Between politics, activism, health and censorship, I began to dread opening Instagram. And I started to question why I was even there.

This July, after reading the paper Stewardship of Global Collective Behavior, which details real concerns about the impact of social media on humanity, I left Instagram. The plan was to stay off for the remainder of the year, to work on building social connections in my local community.

Two weeks into my experiment the Delta variant became so widespread in our area that my family had to reconsider our social engagement and begin a modified quarantine again. We are all vaccinated, but I am vulnerable - we don't know what kind of protection vaccines offer me, given my immune system irregularities. So all of our in person socializing, autumn travel, family connection, is paused for now. Again.

Three weeks in, I was given two new diagnoses: Ehlers-Danlos Syndrome and Mast Cell Activation Disorder. My clinic is so overwhelmed that there is a month between my diagnostic appointment and discussion with my physician. Without a social support network already in place I was once again directed to Facebook.

Then there is my work.

My disability limits me to only a couple of hours a day for work, housework, family life and health. This energy envelope is critical, especially because over the past several months I have been experiencing a severe reaction and unmitigated inflammation along with new symptoms. In the month of July, without really thinking things through - neuroinflammation makes that difficult sometimes, and I am currently more isolated than ever thanks to the pandemic, so don't have a lot of outside perspectives to work with - I tried to eliminate tools that have helped me sustain my disabled life through the past year and a half. These services conserve my energy, bring me goods and information, offer me respite and community. But they are considered problematic/bad for many reasons.

I don't want to contribute to Facebook's empire, I don't want to be caught up in the commodification game. There were many things I enjoyed during this past month away from social media: not feeling the constant tug of obligation, not thinking about content creation daily. But I also don't want to be so isolated, so entirely alone. I work from home, so do not have colleagues and co-workers. I teach online classes occasionally through my school, and that provides me with some engagement, but it is on a whole different level than casual conversation and sharing.

In the past two years I have seen three friends socially no more than a couple of times each. In this month I missed my online friends. In the absence of in person friendship, it is a balm for the pain of disconnection that has haunted me these past five years.

This year I learned about internalized ableism, and it came as a huge shock for me to realize how much I hold myself to ableist standards.

Creating a false binary around social media, when it is truly the only tool for connection for some of us, is the result of my internalized ableism. A lovely friend wrote me a letter at the beginning of my social media experiment detailing the challenges and pleasures of social media when disabled. Her letter made me realize that I was falling into an eternal trap of what I call the myths of modernity: duality. Right-wrong, good-bad, yes-no, quit-stay are false dualisms, an illusion of certainty pervades.

Isn't it possible that everything exists on a spectrum, that fluidity and adaptability have to be embraced, especially during these incredible times and circumstances?

In my work I teach that anything done with intention is ritual, and in order for me to have a ritual practice at all I have to ritualize the routine - bring intention to things I already do, sacralize the mundane. This allows for spirituality to infuse my daily lived experience, which is more in alignment with the traditions of my ancestors. This lived spirituality applies even in the so-called secular realms of technology. By bringing intention to my online presence and ritualizing my online behavior I am able to be more aligned and rooted in my interactions there, less buffeted by the challenges.

In my spiritual tradition, the fabric of the universe is known as wyrd.

"Wyrd is alive, it shapes everything: life force, energy, gestation, birth, destruction - it forms everything. From this thread of wyrd comes all that you are." - Wild Soul Runes

In the wyrd all things are connected. Some aspects of wyrd are fixed, fated, but others are mutable - responsive, always to our intentions and behaviors. I believe that even complex tools like Instagram (or Medium, for that matter) can have a spiritual application when approached with a wyrd view: the web, interconnected, the threads sacred, intention in the engagement and mindfulness in the weaving.

This is where I find myself today:

In the sunrise garden I made offerings and asked for repair.

Sometime soon I will be returning to social media, to weave some wyrd, and try to get some perspectives on my new diagnoses.

My intention is to offer as much love as I can in that space, to make my work an offering too, and weave a wyrd of nonattachment to any particular outcome.

One aspect of having a neurological disability that I am not used to is inconsistency in my thinking. I change my mind now about things, reverse course, a lot. My brain is different, less fixed, more mutable. In my spiritual work I have reframed this inconsistency as listening, being responsive to the moment and trusting the path. Arbitrary intellectual power-over responses never work in my ancestral animistic practice- my ancestors just laugh at me. They say it is the weather you must listen to, and the spirits of the weather, the seasons and the spirits of the seasons, the beings of plant and tree and bird and animal. It is the secret of the river that calls you down to prayer this morning, and the heron that flies over west. All affirm your step and breath, all ask you to be easy and of service in your journey home.

Because this is home. This body. This time. This earth. And when we listen, we become our wholeness, all a part.

In these days of change and challenge, the river, the wind, the sun, the heron, they all whisper: child, take heart.

In your imperfect being may there be both love and root.

By this and every effort may the balance be regained.


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