only this being

I don’t know when it happened but somewhere along the ragged path of managing the symptoms of Fibromyalgia, I realized something subtle.  FMS, as a disease, is a collection of sensations that signals my body’s physical reactivity; my dis-ease was a collection of mental reactivities to the signals sent as sensations from my body.  As much as I could, I understood the physiology and psychology of the former but I struggled with the implications of the latter.  Combined with the reality that there is no cure, I had to re-configure my practice.  It was no longer beneficial to use the panoply of wellness strategy to take away the symptoms.  Instead, I had to consider the possibility of transforming my dis-ease to something that allowed me to be in my life as it was (is?).  I had to let go of the disease/recovery model and take up one that spoke to living well, one that allowed me to embody dignity and gratitude.

All this may sound terribly rational and logical but it wasn’t.  The actual progress was in fits and starts with many side trips and time spent staring at dead ends.  Being a Bear of Limited Imagination I decided to use the Five Mindfulness Trainings as my map.  Respect for Life, Generosity, Respect for Sexual Boundaries, Mindful Speech and Mindful Consumption are Thich Nhat Hanh’s re-framing of the five precepts (do not kill, do not steal, do not engage in sexual misconduct, do not lie, and do not use intoxicants).  Practising with each Mindfulness Training (I like calling them MT’s for obvious reasons: all are contained in each), I began to develop a road map to negotiate through the difficult days.

When the dark thoughts visited, I confronted the reality of my mortality.  This life is limited in its time span and unpredictable in its endpoint.  It is only an illusion that we know how long we have.  This effectively rendered as nonsensical any thoughts of being cheated out of something.

When I was caught in my acquisitive and entitled mind, the practice of generosity was a powerful antidote.  When I wanted something different from what I had, I offered it to myself in a creative way.  It wasn’t always satisfying but it allowed me to develop a more realistic appraisal of what was possible.  Catching myself wanting more good days, I would try to notice the range in the quality of my days.  Finding myself in the thrall of my past, I tried to see what part of that past I still had in my reach.  Truthfully, the concrete shifts didn’t always work but something subtle began to happen.  Ironically, by allowing the wish for more, being generous with the humanness of wanting shifted my perspective in ways I didn’t expect.  It is OK to want something different from what I have; what is neither useful nor beneficial is going blindly after it.

Generosity played an equally powerful role when I was caught in the painful physical symptoms.  Giving myself permission to just be in pain without making demands to do something settled the reactive mind.  It clarified the decision-making about rest and the possible use of medications.  (Thankfully, I’ve not needed the heavy-duty meds to manage this .)  Allowing myself to take days off, re-arrange my schedule, even to sleep all day if necessary was a challenge.  It took a double dose of both generosity and mindful speech (No, you’re not a lazy, wimp) to peel off layers of self-criticism.

Speaking compassionately to myself when I couldn’t meet goals, cancelled gatherings with friends and family, or had to adapt to doing less at work was as much a challenge as being generous to myself.  It all seemed self-indulgent and unfair to Frank who bore the burden of the see-sawing finances.  But the harsh self-recriminations were not working.  I had to re-think my fierce independence and what it meant that I could no longer fly solo.  Along with compassionate speech, the practice of generosity meant allowing others to give to me.

The impact on our finances of my ability to work made Mindful Consumption a crucial practice.  I tend to take the deprivation route which only leads to impulsive spending.  Being skillfully generous became a central practice.  But it wasn’t just about money.  I had to be attentive to the way I consumed media images of what Life is Can Be Like, what can be had just for a small down payment, and all the slights of hand we encounter in our commercialized world.

It’s better these days.  I practice and play smarter.  The fact that I play is in itself remarkable.  The fact that I practice is non-negotiable.  When I talk to people about managing FMS “using mindfulness,” I go to great lengths to point out that mindfulness is neither magic nor a Theory of Everything.  It will not take away what is inherently part of being human.  It cannot explain why anything has happened; nor will it predict what will happen (even if you sit, stand, walk mindfully until the cows come home).

Practice, on the other hand, is different.  It is the essence of generosity.  It is allowing myself to be just who I am.  In this day, this moment, this breath, this being.

Thank you for practising,


Photo: The doll is a Compassion Katsina by Brent Brokeshoulder of the Tobacco Clan from Hotevilla Village.  Its crossed eyes, twisted legs and arms represent what is wounded or misshapen in us that needs compassion.

only this breath

This is an oxalis, a plant I bought for my father when he returned home from the hospital after his first round with cancer.  Mum planted it in the pot which she placed in the garden.  It flourished under her care and when we had to move her things out of the house, I took it home.  Here, it disappeared into the earth despite all my ministrations.  Once in a while it would send out a leaf or two.  Sometimes even a flower would bloom tentatively.  Then, as if the environment was too strange or too demanding, it would go to earth like a wounded animal.  I tried everything: water, no water; inside, outside; fertilizer, no fertilizer.  Finally I gave up and, unable to toss the earth from my parent’s home, simply left it alone in the pot.  Sometimes, it sends out a leaf and there is no rationale to explain its cycles.

I learned quickly that living well with Fibromyalgia meant living with a deep not knowing.  There were days when my body functioned well and days when it didn’t.  At first, I tried to find the transitions and derive the Theory of Getting Better from it.  I was convinced that there had to be a cipher which would unlock the secret to the random patterns of disease and recovery.  But like the oxalis, nothing seemed to fall into a recognizable pattern.  Except one.

Each time I felt well (relative as that was), I did more.  The piles of laundry, cleaning, reports got attacked.  The hours not spent at the gym got logged in.  And the next day I collapsed for longer than I had been diseased before the wellness struck.  Now, I pride myself on not being a Bear of Too Little Brain but it seems I might be at least a Bear of Some Lacking Brain.  It took me some time to figure out that my acquisitive approach to recovery was causing the crashes.  In parallel to this roller coaster of disease and recovery, I was becoming more attuned to the real lessons of meditation practice.  As I sat with each moment, I noticed that when I stopped struggling with the Grand Question of Why Did “This” Happen, I was able to feel the drivenness in my gut.  Breath after breath, it surfaced in my awareness that I was creating the conditions of an unpredictable, unreliable life.

In and of itself, the capacity to push past and through things is not necessarily bad or wrong.  It’s what gets us from point A to B, from cave to city, from microbe to medical miracles.  This drivenness, however, was a skill gone wild in my life.  Like an attribute cancer, it was creating more dis-ease than ease.  Conceptually, I was cultivating a sense of entitlement to things, activities and ways of being in my life.  That entitlement fueled the greed for something other than what I had and sustained my craving for I used to have.  Believing it was my right to feel better than I did, I pushed constantly and hard every chance I got.  On the functional days, two things happened: I took it as a sign that I was on the mend and wanted the next day and every day thereafter to be, not the same, but a steady climb to full recovery.  Or, it became a promissory note that I could buy back what I used to own.  What was really happening was different.  In my drivenness, I was moving so fast to some fantasy endpoint that I was blasting past the moments of wellness that visited me.

Greed to re-acquire what I thought was lost and to have more of what I tasted too occasionally played a powerful role in sustaining my dis-ease and what I had to learn was that it had no impact on my disease.  In other words, whatever lifestyle I managed to acquire – rich, poor, illustrious, ignoble – I would still contain the misfiring neurons, the wonky pain receptors, the uncertainty from moment to moment, breath to breath.  This was the life I now owned.  This was the life I embodied in the very truest sense of the word.  I was up to me to decide how to meet it on its own terms.

Tomorrow: Living the wellness ethic