Worshiping in the Fog

Difficulties, Delights, Discoveries, and Desires Living with Long COVID

Since contracting COVID in late 2023 and developing long COVID, I have experienced life through a haze of brain fog—alterations in cognition that include memory loss, decreased attention and concentration, and difficulties with thinking—and chronic fatigue. I want to share what it has been like to experience Quaker faith and practice through that haze. Inspired by a late elder’s favorite format for event evaluations, I hope to convey some of the complexity of this experience by describing my difficulties, delights, discoveries, and desires.

Difficulties

Finding and feeling the Divine

Much like how I forgot the familiar route to a local grocery store the other week, these days I often lose my way when trying to find the Source. In part, this has to do with my cognitive limitations closing many familiar doors to worship. Practices like recalling my day or week in the style of an examen, focusing my attention on someone to hold them in the Light, or reflecting on passages of spiritually rich writings are now difficult or impossible. But beyond my difficulties with particular spiritual practices, my brain fog seems to pose a fundamental difficulty with feeling the presence of Spirit. It reminds me of accounts from people of faith who have developed dementia, such as what Presbyterian minister Robert Davis wrote early in his journey with Alzheimer’s: “This personal, tender relationship that I had with the Lord was no longer there. This time of love and worship was removed. There were no longer any feelings of peace and joy.” 

Focusing in worship

Due to both my brain fog and some of the medications I take for my fatigue, I have a lot of difficulty with attention and concentration. My mind wanders in meeting for worship, including while Friends are giving vocal ministry. In Experiment with Light meditations on my own, I find myself unable to attend to the prompts for more than a minute or two. This is often frustrating for me. I also feel a deeply ingrained sense of shame for not being able to offer better attention to the Divine and my fellow worshipers, despite knowing that my lack of attention is not my fault.

Comprehending business

Most Quaker business documents do not make it past the layer of fog in my brain. The fog makes it too difficult to keep track of long sentences, hold multiple points in mind at the same time, and recall previous decisions and processes being referenced. In meetings for worship with attention to business, I struggle similarly with comprehending Friends’ verbal reports and remarks. I also struggle to sense unity or disunity in the room because my brain fog impedes my awareness of my surroundings and my sense of orientation in them. As a result of all this, I find Quaker business very hard to follow these days.

Releasing responsibilities

My brain fog and fatigue have forced me to reevaluate my committee, representative, and officer responsibilities. While I had been approved as a recording clerk of my yearly meeting before I contracted COVID, once I developed my current memory and language processing difficulties, it became clear that this role was no longer a good fit. I also discerned that I could not continue as co-clerk of my yearly meeting’s communications committee. I have felt some grief—and, as someone who grew up with a duty-oriented understanding of religion, a bit of guilt—in laying down these responsibilities. 

Managing energy during gatherings 

I am fortunate to have been able to attend some Quaker gatherings in the past year despite my limitations. However, managing my energy during these gatherings has proven quite difficult. I find myself stressed as I continually try to assess whether attending this or that part of the program will tip me over into post-exertional malaise, a marked worsening of symptoms following overexertion. When I make the assessment that I need to skip an activity, I sometimes get lonely. It can feel isolating to be stuck in a dorm room resting when everyone else is excitedly heading off to a plenary keynote. 

Delights

Eldering and spiritual companionship

When I first came down with COVID, I felt inspired to ask a wise Friend to serve as my “COVID elder,” thinking she could help accompany me through the fears, anxieties, and past spiritual wounds that COVID was bringing up for me. She agreed, and as acute COVID progressed into long COVID, she eldered me through all manner of COVID-related experiences (including the difficulties described here) for eight months and has continued to accompany me as a spiritual companion. It has been a tremendous gift to be so closely accompanied while learning how to navigate my spiritual journey amid brain fog and fatigue. I have also delighted in getting to know a few Friends who have had similar experiences to mine with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome.

Experiencing embodiment more fully

Some time before I contracted COVID, a Friend and I were sharing deeply and using the practice of reflecting back what we felt in our bodies when the other spoke. At one point, I recounted feeling tingles down my back, and they enthusiastically affirmed, “The tingles! You’ve got to pay attention to the tingles!” I remember hearing the wisdom in that—and then promptly returning to my habitual practice of mostly ignoring everything I feel in my body. Now that my thoughts are obscured by the haze of brain fog and fatigue, I find myself finally paying attention to the tingles on a regular basis. In meeting for worship, I think less and feel more. Many messages go by without my focusing on them or understanding them, but when a sentence is charged with one of those profound truths that sets off the tingles, I notice it. This shift towards embodied experience prompted me to attend a Ben Lomond Quaker Center program on the practice of Authentic Movement, which I found deeply meaningful. In spaces lovingly held by witnesses, we closed our eyes and moved as our bodies led us. Our closing session, a blend of Authentic Movement and unprogrammed meeting for worship, contained some of the most tender and Spirit-filled moments I have experienced among Friends. I left delighted to feel more fully embodied than I had in years.

Discoveries

New image of the Divine

My painful and confounding experience of not being able to center down and connect with Spirit like I used to has led me to rediscover Thomas Kelly’s wonderful image of God as solvent. Rather than trying to encounter the Divine, I am trying to simply let myself dissolve into the Divine. In meetings for worship, with and without attention to business, I am letting go of my expectation to receive spiritual insights in my thoughts or to sense unity in the room, instead simply imagining myself dissolving into a puddle of God under the chairs.

Hidden attachments to release

Recently, when a change in my medications precipitated a drastic change in my attention and concentration, I was graced with the insight that I had been attached to the high degree of focus I used to have. I had assumed that the attentive watchfulness others had noticed in me since infancy was fundamental to my identity, and I derived pride from my hard work to cultivate it over the years. Seeing this attachment allowed me to let it go and to realize that I could simply experience focus as a gift—one possible gift among many—when I receive it.

New relationship to time

With my past routines upended and my memory jumbled, I find myself experiencing time differently. Past, present, and future feel swirled together. Paradoxically, I feel more aware of both my mortality and the expansiveness of my potential lifespan. It reminds me of the han sha ze sho nen symbol in reiki, a symbol of the connectivity and totality of time and space. This experience of time has led me to realize that not everything I discern as mine to do needs to be done right now and that not all of my spiritual gifts need to be developed and exercised immediately. As I discern questions like whether to serve on a given committee or pursue a particular route in my vocation, which I previously would have approached as yes-or-no questions, I am discovering that sometimes the answer is “yes but not yet.”

Desires

Visible and connected community

I have been fortunate that at a few large Quaker gatherings, I have met other Friends with similar conditions, and we have felt comfortable disclosing them to each other. I wish that these connections were easier to make. Statistically speaking, there must be a large contingent of us Friends who have long COVID, chronic fatigue syndrome, dementia, or other forms of fatigue and altered cognition, but we seem to be invisible. I hope that with increasing modes of communication and destigmatization of neurodivergence, we can find each other and build community more easily in the future. 

Support from the wider Quaker community

I am grateful that when I was first navigating the transition from acute COVID to long COVID, I had a support committee of four spiritually weighty and medically knowledgeable Friends from my monthly meeting. But I wish that I had been offered a support committee rather than having to request it, and I wish that the Friends serving on it had been better prepared to figure out how to support me. Reflecting on the training I had in divinity school in providing pastoral care to people with dementia, I wonder if something similar could equip pastoral care committees with a better sense of when to offer help and what kind of help might be needed. Looking beyond monthly meetings, I wish that larger gatherings of Friends included more space to rest and retreat. I wish that it were always acceptable to lie down in business meetings like it is in my yearly meeting’s annual sessions, that all Quaker gatherings had a period of sabbath like the Friends General Conference (FGC) Gathering, and that we always encouraged each other to pace ourselves like we do in disability breakout groups.

More forms of worship

Too much of Quaker worship and business revolves around comprehending language and contemplating abstract ideas, with a lot of importance placed on things like vocal ministry and responding to queries. For many of us, myself prior to long COVID included, this is a comfortable place to be and even a reason for becoming Quaker. But as my current cognitive difficulties have made me acutely aware, thinking is only one door to worship, and not everyone can go through it easily. I hope for more meetings for worship that invite movement, chant, energy work, and other modes of connecting with and expressing Spirit that go beyond the thinking mind. I think this is possible even in meetings for worship with attention to business; for example, one of the Quaker committees I serve on has a long-standing tradition of presenting its reports in the form of a skit or song.

Reckoning with ableism

When I became a Quaker, I absorbed two pieces of theology about words. One was that if a piece of vocal ministry or spiritual writing fails to move us or make sense to us, it must be meant for others and not us. The other was that—as we like to quote Papunhank’s words to John Woolman—“where the words come from” is more important than the actual words. It was only a couple years ago that I realized (with help from a fellow neurodivergent divinity school student) how ableist this theology can be. As much as we may profess otherwise, our Quaker community does currently depend on complex language, and theologizing away our responsibility to ensure that everyone can share in what is being said ends up excluding a whole lot of people. I have been happy to see more attention to disability among Friends in the past couple years, and I hope we can take a step further by reckoning with instances of ableism.

Sometimes when I discuss these difficulties, delights, discoveries, and desires among Friends I am met with questions of theodicy—questions of how to reconcile the existence of suffering with our powerful experiences of a loving God, a healing Light, a meaningful cosmos. Are the difficulties of long COVID a spiritual test from the ultimate Teacher? Was long COVID the way for the universe to have me make these discoveries and experience these delights? Did Spirit want me to go through long COVID in order to awaken these desires for transformation in the Religious Society of Friends and spur me to action? 

My experience is closer to a metaphor a Friend once shared with me of the Divine as a found-object artist. Like human found-object artists using clothing irons and urinals to create works of art, the Divine can use whatever events happen to occur in our lives, including the most banal and unpleasant ones, to sculpt our spiritual development and weave our future ministries. In my case, getting long COVID was not part of a divine plan, it just happened, but Spirit has been able to use my foggy brain and fatigued body to help me make some spiritual discoveries and generate desires that may eventually grow into leadings. 

Yet even this metaphor can at times feel like a misguided effort to tie up a messy human experience with a spiritual bow. So if you see me and ask how I am, prepare for a long answer: collaborating with the divine Artist, disconnected from Spirit, fired up about change, in need of a nap, enlightened, confused, well-supported, lonely, grateful, frustrated, joyful, sad…this is my messy reality of faith and practice in the long COVID fog.