Life as a Perennial Question

As a word, surrender still swallows hard.

Instead, I “crumble”; my “stony” self breaks into pieces–I “try something different” (Rumi). That I will more readily crumble than surrender may be a matter of semantics or more probably, Rumi.

Be crumbled.
So wildflowers will come up where you are.
You have been stony for too many years.
Try something different.
Surrender.
—Rumi

That wildflowers are possible is worth the risk of bursting forth as a bloom, going to seed, and sprouting again. My life is perennial until the year that it is not.

Until then, the crumbling into a wildflower is worth the experience, its seed an idea that will grow into some form of question.

I find myself fascinated with questions, considering them eternal. Answers are more ephemeral. Once accepted, they begin to crumble, not always noticeably, yet break-up they do. They are the feed for the seed—the idea–that will grow into another question.

They have so many facets and yet a familiarity about them, a leitmotif. Familiarity means I must be patient and allow the question to grow into itself. Far too many times, I anticipate—so sure I know what is being asked.

But I do not. It is mine to listen for there are so many variations on any theme. There is nothing new under the sun until life bursts through yet again, and then everything is new in that life.

What will it be like?

There is that question again–a unique seed–an idea expressed like no other. Its flower will blossom as have similar blooms before crumbling, surrendering.

Perhaps that is the promise of impermanence, life playing out against the constancy of Buddha nature, God, the Universe, the web without a weaver, the Tao….

I am the perennial until the year I do not sprout. I have gone on to something completely different

 

 

The Long View On the Small Stuff

Increasingly, curiosity gets me through difficult moments, especially when equanimity seems impossible or at least incredibly difficult.

I start with the small stuff. Like when I begin my day. That may be at 4 AM or 10 AM. The issue is not the clock but that my day begins. There was a time that if I had not meditated or completed my yoga practice by a certain time, my day was doomed.

Who knows what I missed on all those “doomed” days.

Some time ago, I began practicing “a routine of no routine.” I had no idea what that might mean but I decided to let curiosity lead–no matter what.

Working with the day I have and not the day I planned is as much a discipline as is meditation and yoga. More often than not, I accomplish more. Rescheduling is less necessary. I open myself to different ways of accomplishing a task.

Curiosity gives me that creativity. And it requires my complete presence. It is more than not pouring coffee in my oatmeal. It is appreciating that preparing coffee and oatmeal is each its task.

Staying within the frame of my day—each moment its own scene–keeps me from being daunted by the obstacle that is that day’s path. Mine is not to ignore but to immerse myself in the experience.

It is the small stuff that enlarges my awareness.

I think less and complete more. Even when revelation drops in, I do not attach to it. I notice but I do not engage. Revelation, like every other thought, returns.

There was a time—not long ago–I would have rushed to capture revelation on screen or with a recorder. Who knows what would’ve become of my coffee or the oatmeal.

I was so afraid of losing the brilliance of one thought who knows how many others passed. Each in its time.

So, yes, it’s the small stuff even in days of cold sunshine. For me, these are days when the temperature is low and there is a stiff breeze. There is so much light but it is a cold one.

Physically, it is difficult. I am immediately aware that the roller coaster is mine to ride or not. I can rage or sink into the slough of despond. I aim for somewhere between the two.

Sometimes, I skate on the slough, my mind frozen in attachment. A solitary thought plays over and over as the ego skates freely on the mind that is fatigued. Still, time thaws all thought, no matter how dark.

It is the way of life on this planet, in this physical dimension, that we know darkness. I’m not sure that’s without its purpose. Each day ends in darkness only to dawn again. It is not all light all at once.

For me, a sliver is sufficient. There is just enough joy in it. Like light, not much is needed. As Brene Brown says, “Joy, collected over time, fuels resilience.”

Joy is a peaceful resistance to any action that adds pain and suffering anywhere to anyone including me. When I learn through joy, I cease to struggle (Sarah Ban Breathnach ).

Pema Chödrön says trusting in our “fresh, unbiased nature” is all we need to do.

At the beginning joy is just a feeling

that our own situation is workable.

We stop looking for a

more suitable place to be.

(The Places That Scare You, Chödrön, 2009)

When we work with the reality we have, we find the extraordinary in the ordinary. It takes practice. Start with the small stuff. Trust your gut.

The Case for Chaos

Increasingly, I choose chaos over suffering. It’s a conscious act, one I have come to know as sitting in the seat of Zen.

The Buddha taught suffering and ending suffering. There’s no avoiding pain. It is integral to the life experience. How I deal with pain determines whether I suffer.

This is usually where chaos ensues. 🙂

Pain arrives like any other experience, a visit from the unknown. If I sit in the seat of Zen, I am without expectation, open to what is being offered. Welcome or unwelcome, the experience changes me.

It is not the nature of life to suffer. Pain is only one experience and like all every other one, it is merely passing through. No one experience frames a life unless we do not let go.

Being chronically ill offers me various levels of pain but sitting in the seat of Zen offers me a life lens to adjust to whatever light is present in varying perspective.

I have demanded much of my body. It has responded beyond my wildest expectations, often adjusting in ways I am late to discover but become aware of nonetheless.

As Anne Lamont said, grace finds us in one state and leaves us in another. It strips us to our core—revealing us as we are, transforming us from what we were. It is the heart that must make the mind bold to life anew, and somehow, it always does.

This past week, I visited my neurologist who advised that while there is no improvement in my cervical spondylotic myelopathy, there is no change, either.

The tingling in my fingers will not subside nor will sensation replace numbness in my hands.

I’ve known this since the cervical fusion failed in 2015 but to know and to bear are often different worlds.

I may be able to push my fist through a wave of impermanence but I will still be knocked to the ground. And there is no out running the wave—ever. Mine is to be, to experience.

Hollow comfort that when fear is in abundance but I don’t have to be fearless, just a little bit curious, that is sliver of light enough.

What now for my hands and arms? The answer is what it has always been, world-building “around the tiniest of touches” (Carol Rifka Brunt).

I have a reverence for the capabilities of the “opposable thumb,” probably because my thumbs feel more in opposition than opposable. Yet, there remain possibilities.

If I ignore the “tiniest touches,” I will drop the plate or the egg. I must be completely present to my task. Less focus is required in lifting my collapsible walker in and out of my car. In gripping the walker, tingling streams through my hands, the “tiniest of touches.”

I no longer wrap my mind around that one moment when all life will seem in balance. I once worked toward such a freeze-frame but it left me lacking. In all the imperfection of impermanence, I would rather its wave.

How easy it is to forget that we are world builders–our one life experience so chaotic, so full of grace.

Reflections on a Seesaw

“Maybe, maybe not” is a phrase I’ve carried with me since first reading Robert Fulghum’s Maybe Maybe Not: (Second Thoughts from a Secret Life). If memory serves, Fulghum focuses on the certainty that anything can happen. In maybe (and maybe not as well), lies the wonder of certainty.

Some 20 years later, I still do not disagree. After all, existence is ever-evolving, never given to any absolute except change. For me, certainty lies in change.

Maybe this is hair-splitting, maybe not.

It is only recently I realized that “maybe, maybe not” is my catchphrase for equanimity. I do not know when that happened but it did. There is an evenness of mind in the seesaw quality of “maybe, maybe not”—at least for me–an ongoing balancing act in meeting life’s experiences.Winds of Change 0214

As Pema Chodron says, “cultivating equanimity is a work in progress.” Indeed, it is. Yet, I find a kind of certainty in creating an environment of equanimity. If anything is certain, it is change; perhaps that is the permanence in impermanence.

Maybe impermanence is the heart of Fulghum’s belief in wonder for no thing ever stays and anything can happen. Maybe, maybe not.

Cultivating equanimity means we respond rather than react to the emotional and physical storms that make up the drama of our lives. If we meet the storms with an evenness of mind, we learn the nature of our pain.Storm Clouds 081913

To open one’s self to the fury of any storm—to sit in its eye–is to accept the promise of impermanence, the certainty of change. In acceptance comes the realization that one’s life changes forever. No storm is without its pain yet every storm has its eye.

I am reminded of the Buddha’s words, “I teach nothing but suffering and the end of suffering.” For me, equanimity provides the evenness of mind to accept that pain will always be part of the life experience. But I do not have to suffer. The choice is mine.

We suffer when we are becalmed, wrapped up in our pain, wearing it as our identity. In aversion, we also suffer, trying to outrun or outmaneuver the storm— we may actually do more than once — regardless, we will meet it again, may be different circumstances and perhaps when least expected.

In equanimity, we brave the storm, accepting it will forever change us. We sit in its eye, safe in knowing the storm state always passes, and in its aftermath, we rise once again, buoyed by the energy of existence.

With every storm, there are lands lost to us, yes, but if we sail with the current—an evenness of mind— there are so many new shores to explore, so many experiences yet to come. There is always another sea to sail.

And all the while there is the wonder of maybe, maybe not, a seesaw balancing act, certain to change.

Upside down 0414

Looking Through the Lens of Limitation

Looking within 0213For nearly four decades, I viewed disability through a lens of limitation. For me, that shutter had only two settings, open or closed, a.k.a. able or disabled.

Some years, I fully embraced the label of disability, assuming it as my identity. And then better health would return. Always, I believed the return permanent, and it never was.

My ego had this to say: “You are better and can do more so do it.” No matter the state of my health, I believed my ego. Sheer stubbornness prevailed more often than not. Yet, disease processes can only be suppressed for so long.

My ego was not without an opinion on poor health, either. “You can get better. You have before. So do it.” Sometimes, remission lasted for years but always, disability returned.

All the while I was struggling with the disability label, I kept accumulating medical diagnoses. I gave them little notice other than to put them in a neat stack for later consideration, which I never did.

Rather, I rode the roller coaster of disability as if it were the only experience of my life. Until one day, not too long ago, I got off. No more struggling to rise only to rush back down. No matter how long it took to climb up, the trip to the bottom never lasted long enough.

The Pause of Life 101313

Undoubtedly, my ego had an opinion but I did not listen. Rather, I followed my instincts: why not float upon impermanence? Stay open to experience. Meet it with curiosity. Impermanence will take you on the ride of your life.

And then the bottom fell out, as I wrote in my last post almost three months ago. I’m still afloat, which is not easier than riding on a roller coaster just different. I sail with the current rather than setting a course for lands lost or for shores beyond my reach.

I discover myriad angles in the ever widening lens of impermanence, even if the dawning day is dark. Always, there is a sliver of light, and if I’m mindful, I will discover it.

Familiar disease labels are never far off but I do not seek them out or try to steer away. They will find me, and I will meet what they have to offer. Just recently I added a new label, rheumatoid arthritis. It offers yet another perspective on the Zen koan, “The obstacle is the path.”

I stay the course, scanning dark skies for the inevitable sliver of light.

Autoimmune disease— lupus, Sjogren’s, and rheumatoid arthritis— are quite active currently as is spinal cord disease (myelopathy). Working with degenerative disc disease, myelopathy has permanently affected my gait (ataxia) as well as the reflexes in my limbs (hyperreflexia).

Each label is its own lens of limitation. To attach to a label or to avoid it will not change the experience it brings. Labels float in and out of life. I aim to let them do just that.

The C2-C4 donor bone fusion is still “not taking” but “my films look good” my neurosurgeon tells me. The fusion hardware holding the donor bone in place can last as long as 10 years. Even autoimmune disease is doing its part as it provides more than enough inflammation to assist the fusion process. My neurosurgeon remains optimistic and so do I.

Sliver of light in a sea of labels.

Sparkling Waverly 1013

All of my medical practitioners support my daily, gentle yoga practice, no matter the disease experience of the moment. Not every day am I able to perform each yoga pose completely but every day I practice yoga.

In yoga and meditation, there is only the lens of impermanence, a mindset of acceptance that no thing ever stays or is ever the same, no matter how many times met. I agree to medications that I once rejected: a weekly dose of methotrexate and a small, daily dose of prednisone. The methotrexate requires monthly blood test monitoring.

Inflammation may be assisting the donor bone fusion but it is damaging my joints and tissues. Accepting the medication is as essential to maintaining my independence as are yoga and meditation. In an open-ended mindset, labels pass freely.

In every moment there is movement, a breathing in only to let go.

As in meditation, the breath in yoga is critical to sensing the body’s signals.  With my breath I soften the pain of movement, all the while experiencing its energy. Every day is a new communication with the body, no matter how many yoga poses I complete or how long I meditate.

Even on those days when there is only a sliver of light, the impermanence of each experience is worth the ride. After all, I am looking through an ever widening lens with myriad angles.

High Tide St Marks 0214

 

When the Bottom Falls Through

Recently, I received some unexpected health news, which is why there has been a longer break than usual between posts. Just as I was getting ready to resume regular posting, everything changed.

Impermanence is like that.

large waves 0215

The bone graft in my cervical fusion—C2–C4— is not fusing. There is no healing; the graft is not “taking.” Initial x-rays seemed to reveal healing but x-rays taken six months later do not.

You might think that after nearly 40 years of dealing with chronic illness and disability, I would take this news in stride. I did not. I was devastated. Myriad scenarios, all of which began with “what if,” descended.

I buckled under the weight. The bottom of my world fell through. I found myself in the depths of my vulnerability. I cried. A lot. Rarely have I felt so hopeless. As I wrote to a friend, “I really wanted to beat this.”

Ah, but I am not in a race.

Footprints 1013

 

I am experiencing life as a human being. My life is not a race against chronic illness or disability—it is not a competition on any level — it is a moment of life, one stitch in the tapestry of existence.

To live, to be a stitch in time, is to be vulnerable. Let me not build “castles in the air”; let me “inhabit” my vulnerability.

The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance….

David Whyte, Consolations: the Solace, Nourishment, and Underlying Meaning.

I had to become comfortable with my vulnerability. Although it runs deep, so do the wells of compassion and courage. And from them, all I had to do was drink. Vulnerability connects us with one another but it is courage and compassion that reveal us. They keep us fear-less.

I am not seeking the pot of gold at the end of the rainbow. It may or may not be there. I am experiencing my life as it unfolds, putting a foundation beneath my castle and inhabiting it.

Art 0514

The bone graft fusion in my neck—C2–C4–is not fusing is a thought never far from my mind, a frequent visitor during my morning meditation, accompanied by fear in all its forms. Words weave in and out, some wounding and others opening old scars.

It is a circle of wolves. I feed each one.

I sit in my vulnerability as I observe all the reasons the bone graft is not taking. There is the donor bone, possibly not a good match, always an unknown.

I was not the best surgical candidate. This was the fourth surgery on a spine with degenerative disc disease. And after nearly 40+ years of autoimmune issues, my bones may just not be good enough for that donor bone. After all, my cervical vertebrae did pinch my spinal cord.

My breath brings me back to what is.

In this moment, a metal plate and four screws are holding the vertebrae and donor bone in place. This is my reality, not what was or what might be.

A silent wolf patiently awaits the stillness. There is a possibility—a long shot–that the graft may take two years to fuse. No one gives this wolf much attention but I feed it as much as I feed the others.

The wolf demanding the most attention concerns the low dose of prednisone I am taking as well as the limited, over-the-counter anti-inflammatory medications. Neither of these is a surprise nor a secret– each reduces my pain level and keeps me mobile–together, they are now viewed in a new light.

It is possible the autoimmune disease medications reduced the level of inflammation so the fusion cannot take place. Without the medications, my mobility would be so limited it would slow if not stop the fusion from taking place.

KMHuberImage; St. Mark's Wildlife Refuge; Florida; USA

 

It is my neurosurgeon, the reader of x-rays, who says so succinctly, “you are between a rock and a hard place.” Indeed. Autoimmune disease versus spinal fusion. Which one do you feed?

New blood tests reveal neither prednisone nor the over-the-counter medications have dramatically reduced my body’s inflammation. Still, “between a rock and a hard place” remains the medical phrase.

Mine, however, is not to look for the fringe of the future. Rather, I inhabit my vulnerability, exploring the reality I have. The balance in the circle of wolves remains fluid.

Daily, a new experience awaits me. I sip from my wells of courage and compassion, content to reside in my castle of vulnerability. And like everyone else, with each experience I become more intimate with disappearance, the exit each one of us will take someday.

Strolling along 112113

As My Laundry Lay Drying and Other Tools of the Trade

ER Toy Shirt

Note ER Catnip Toy

I did not immediately recognize the connection between the way I dry laundry and the way I write. There is a bit of  forever about the time it takes damp laundry to dry in a subtropical climate. As well, for some time I have been content to let my sentences grow at will. For both, time seemed not of the essence.

Repeatedly, I assured myself that sentences would be trimmed, ordered. Some words would not survive the page, as always. Laundry would find a fold or a hanger in a drawer or closet. Well, of course.

Impermanence does wend its way through laundry as easily as it does through words. Yet, I suspected I was trying to catch it on a shirt or in a sentence, trying to hold a moment longer than it lasts.

I was.

Laundry does dry, and if it is a high plains desert climate— a mile high and more— it dries quickly, reflecting the scratchy, arid climate. The soft, pliable cloth of a subtropical climate leaves just a hint of moisture.

Note the Wyoming Flag filling out the State of Florida

Note the Wyoming Flag filling out the State of Florida

Regardless, a moment lasts only a moment– a routine of no routine–endless and timeless. It is for me to work with the reality I experience as it presents itself. It is the stuff of choices.

I decide the laundry will finish drying on my love seat, recliner, and every available piece of furniture/doorknob. I save $1.25 in quarters but it seems I always receive more than I give.

Feline EmmaRose revels in “laundry days.” At less than 5 pounds, she can sneak in, under, over and around almost any piece of laundry. It gives her such joy to explore her landscape in a new way.

Her joy is not lost on me. I am aware of words left here and there in moments already passed.

As ill as I have been this past year, most of my writing has been recording details and research. Deliberately, I was not attaching any feelings to those events. That would come later.

Yet, the laundry did dry as later passed. Both laundry and words were taking up space that EmmaRose and I do not have. We share two rooms and a bath. We’re full up.

As I folded laundry, I reached for a pair of socks, a Christmas gift. One sock is a list of banned books; the other is the world with those words, peaceful and rebellious.

As I lay drying 0116

A moment lasts only a moment, long enough for the world to change, and there is nothing comfortable in that. The comfort comes in recognizing we, too, are capable of change.

The laundry can only lie around so long. And so it is with writing.

Physically, the way I am able to write is both new and old. I’m no longer sure what tool will be required on any given day. It is its own routine of no routine, as it always has been.

If the “obstacle is the path,” and I suspect it is, a broader perspective can only mean another way to view the obstacle. A new angle, requiring new tools as well as new ways to use old tools.

Rock and Hard place 1014

I no longer type to write–mostly–I use voice recognition software. I decided it is more important to use my hands for chopping vegetables, picking up a capsule/tablet, and measuring a half milliliter of liquid prednisone in a syringe for EmmaRose.

There are no medications for my motor control, hyper-reflex, and nerve damage issues. My mind-body works with each signal or lack of signal. It is a lesson in letting go.

Some kind of sensation is evident in my fingers and thumbs, different and worth exploring. It is as if through the gnarled roots of tingling/grittiness/numbness, there is life.

palm legs 0116Once again, I receive more than is asked of me.

In using voice recognition software, my thoughts— air abstractions—become concrete representations through speech, a tool once reserved for conversation. It is a new role. This, too, feels like life.

The physical sensation of fingers on a keyboard is a different creative process than speaking those same thoughts. One is halting, dependent upon a stroke or even a missed key; the other is expansive, born free of grammar, ever ready to roam.

And then there are completely new tools. When I updated my voice recognition software, I received a Digital Voice Tracer. It transcribes my thoughts/research notes into a text document. It is remarkably accurate.

The Tracer will fit in any outstretched hand or most any pocket. It takes up just a little space on the nightstand, ready to capture ideas as they occur. Well, almost. There is always that moment in between.

It is more than I was able to do before, once again.

And I have returned to using a chalkboard, 35 x 23. I suspect I still cling to a physical way of writing; the chalkboard provides connection. Ultimately, what is written in chalk dust finds its way to my laptop through my digital voice tools.

Clean Slate at an Angle

Clean Slate at an Angle

Like EmmaRose, I, too, enjoy a change in the landscape of our apartment. I sit on the floor with chalk and my board, drawing connections between pieces of writing. I get another visual of words working together.

I had given up this practice of sitting on the floor with my chalkboard. But in viewing my obstacle from a new angle, solutions once unlikely, reappear. Like walking in the air, it just a matter of taking the first step.

Of course, the chalkboard is great for hanging laundry. As one set of thoughts turns to dust, another lies in wait. It is never-ending.