Always Be With You: On Chronicity and Shared Predicaments

"You can help the poor anytime, for they will always be with you…"

~ Matthew 26:11 First Nations Version

So, I've been thinking about the collective aspects of chronicity - and the liminal processes that exist between health and illness and the implications for how we operate as communities and nations.

I have my own personal experiences of chronic states. I was raised in a household with a father in chronic pain, and a mother who disabled by severe rheumatoid arthritis in mid-life. I myself suffered from chronic migraine, ten to fifteen migraines a month, from age sixteen until my early fifties: when I was then diagnosed with what was expected to be a chronic (slow and incurable) cancer.  I lived in that reality for just over three years, and several more years of recovery before that chronic reality reorganized itself into a surprise remission – and which also somehow happened to almost entirely eliminate my chronic migraines – leaving me less disabled than ever before, which is pretty mind-blowing in its own way.

I have many patients, colleagues, compatriots and friends who live with chronic pain,  limitations and disabilities from diagnoses such as MS, ME-CFS, chronic headache, Fibromyalgia, Ehlers-Danlos, chronic Lyme and a variety of other autoimmune and inflammatory disorders, as well as the chronic depressions and anxieties and post-trauma response which can accompany chronic illness or exist independently.

I have also watched the number of people I know and love who are dealing with chronic illness balloon over the past five years as the pandemic initiates more and more people to life with chronicity in the form of Long Covid, a condition which is troubling and life altering by itself, and which compounds the suffering and limitations of those already living with chronic or incurable conditions.

And this is what I keep thinking about: What does everyone need to integrate from all of this? What does the dominant culture at large need to understand from this mass disabling? What does the collective psyche need to integrate about the realities of chronicity? Of course, confronting ableism generally is essential here – but I suspect there is also important information embedded in not-yet-curable states that could transform how we live on the earth, with our neighbors, and in our own skins if we could withstand the deeper call that chronic realities demand.

I don’t have any definitive notions, here, but I don’t want to stop thinking out loud. I suspect of all the humbling wisdom and necessary perspectives that so many people I love with chronic conditions have developed could be valuable for so many if only we would listen and engage with the content instead of pushing it away.

I think about how best educational practices for those with learning disabilities and neurodivergence create healthier and improved learning environments for neurotypical kids, and how exhausting and entrenched the resistance is to providing accommodations which would make learning a more joyful experience for everyone.

I think of the transformation my own chronic states forced upon me - and the new, immutable rules, restriction and parameters I had to learn to obey.  I have so often tried to teach others about the power and  necessity of honoring our human limitations and how often our culture and economic systems demand that our limitations be over-ridden, blown-past, split off and  ignored.

It was chronicity that taught me about the sacredness of my finiteness, how damaging it is to treat my own body,  the bodies of others and the earth itself as a site of extraction. It is also how I began to value the efficacy and monitor the costs of consciously made small, precise actions and gestures.

We have not only ignored devalued those individuals in our communities who live with chronic challenges and disabilities,  "we" - the dominant cultural narrative consistently ignore our collective chronic dilemmas. We are entangled in binary notions of hope or hopelessness, sickness or health, battling or succumbing, fixing or failure.

We too often regard on-going dilemmas, oppressions, and imbalances as if they are acute problems with single, simple solutions. Our chronic collective challenges are dismissed as merely unfixable,  hopeless,  pointless, frustrating,  exhausting and defeating. Or worse, as whining, or personal, individualized failure.

It is fixed or it is broken. It is solved, cured, or we have failed. We have succeeded or succumbed to our limitations.

Don’t bother with them, they will always be with you.

This chronic, pernicious aversion to uncertainty,  to fluidity, to liminality disables our communities and may actually destroy us all.

There is little regard for the actual majority of our lived experience where we are neither up or down, hopeful or hopeless, where we are actually engaged in an ongoing process of recurring flares, cycles of suffering and waves of temporary relief from cultural sufferings that have been with us, if not eternally, at least continuously and for a long, long time: violence, genocide, misogyny racism, abuses of fellow species, the land air and water, injustice and oppression in all its forms.

they will always be with you…

Whole communities,  cultures and nations refused to look at such chronic realities at all. We too often imagine injustice as a problem to fix, but what if it isn’t at all?

It may be useful to evoke a distinction between problems (things that can actually or potentially be fixed) and predicaments (things that must constantly be dealt with, won't be solved, and won't go away).  ~ Hospicing Modernity, Vanessa Machado de Oliviera

Chronicity doesn't mean that it is hopeless or pointless to tend to suffering, or that engaging our long- standing predicaments is an endeavor doomed to fail. It means that chronic predicaments, require that we engage in on-going life-long, unfolding processes.

Predicaments are unfolding processes that ask us move and compensate through oscillating cycles and seasons, adjusting our stance and calibrating our response to a living, shifting, transforming landscape on a daily basis. A process like flying a kite or growing a garden  - in collective social environments that can move in and out of balance in a flash- in response to thousands of variables and conditions. Predicaments ask us to change our lives, and keep changing them, continuously calibrating and re-calibrating our relationship to the predicament itself as it assumes new forms. What if the “poor being with us always” is not a failure to fix the problem of injustice, but a call to a  lifelong commitment to examining and re-examining our relationship to justice?

Perhaps liberation is a daily, responsive practice because our capacity for imbalance, cruelty, indifference and injustice is a chronic predicament. What if we are a finite and limited species, living on a planet that moves in waves of balance and imbalance and compensation and fluid phases of over/under correction? What if justice, liberation, balance, well-being have never ever been fixed states, or entitlements but are stages in eternal processes that we must learn to live in alignment with, and to engage with them continuously  - like chronic pain, or limitation which sometimes abates, but must always be considered, and is rarely fully under our conscious control? What if we remember that overriding our limitations, our range of motion and exertion, blowing past our boundaries always has a cost which is destructive to others as well as to ourselves?  What if the task is to “help the poor” - the unavoidable deficits and depletion in and around us - that are with us always - anytime and also at all times?

And listen – this to me, isn’t about hopelessness. I'm not suggesting that it is impossible for true remedy to emerge: It’s about active compassion for active inescapable suffering - and accepting that we need tenderness and care through what seems to be incurable while we wait,  hope, imagine, keen and move slowly toward the possibility of relief, however remote. My chronic conditions miraculously abated, but certainly not because I ignored their daily chronic presence in my life for years and for decades. I succumbed and lived. And people who I love succumbed and died, and some fought and died, and some fought and lived. There is no telling.

Just because something has operated as a chronic reality doesn’t mean that it can't still surprise us and transform itself, suddenly getting much harder or easier to bear. But treating a complex predicament like a simple problem or ignoring it entirely are wholly non-viable options. I fought chronicity as most people do, I resisted it, I sought categorical cure, but I also had to accept the reality of its persistence and presence. Without that acceptance I would not have reached for palliation, for harm reduction, or sought solutions to try to incrementally improve my quality of life or manage my suffering in the meantime.

I foolishly, idealistically, (perhaps chronically) persist in dreaming of a community at large embracing the complexity of the processes we are embedded in, riding waves alongside chronic realities respectfully, celebrating the good days, acknowledging our wounds and our limits, bearing witness to what is not easily cured, moving tenderly and carefully through the sufferings that we do not yet know how ameliorate or avoid, and honoring our shared predicaments.