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.

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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.

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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.

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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.

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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.

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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.

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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.

The Holiday Pounce or the Cat is on Steroids

Sometimes the holiday season is just upon me, unannounced points of light pristine as newly fallen snow. It is joy uncontained, this magic of my holiday heart, a music all its own.

This year, I am very like the boy in “Walking in the Air.” The music is new to me but in England it is a beloved Howard Blake song written for the 1982 television adaptation of Raymond Briggs’ The Snowman.  It is a traditional holiday favorite.

Perhaps that is how holiday traditions are made. New only one time and for all the holidays yet to come, remembered, sometimes as magic.

In ways unforeseen, feline EmmaRose and I are exploring our own version of walking in the air. In keeping with the title of this post, she is on steroids. For that matter, so am I.

It has not been what I would have anticipated for either one of us.

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As you can see, most flights of fancy are in EmmaRose’s dreams. That said, there are moments the catnip mouse flies through the air, ever prey to EmmaRose’s declawed but deft paws. Usually, a serious nap follows. This has always been her way.

EmmaRose has reached a certain age where chronic inflammation in her gastrointestinal tract is now permanent. Prednisone gives EmmaRose a chance to keep her life as she has known it. In all things, same old, same old is EmmaRose’s idea of walking in the air.  The even keel is her joy.

As a woman of a certain age with an increasing number of chronic health conditions, I, too, aim for the joy of even. Every morning I check our respective steroid doses on the daily calendar. EmmaRose’s is in liquid form, which she prefers dribbled on flakes of tuna.

I take my tablets with warm, lemon water and set the timer for an hour. I meditate; EmmaRose naps.

Meditating on steroids is not a busy blur. Just the opposite, actually.  In the opalescent hours, dark and not far from morning–dawn’s assurance lurks–my body stills into one breath after another.

Inflammation signals, initially insistent as pain, ebb. More like soft points of light than not. Tramadol fans the flames of burning joints into embers as Gabapentin wends its way through the maze of misfiring nerves.

Within the hour, my body finds its balance to begin the day.  There will be constant shifts as medicine and body seek mutual agreement. Cooperation is fluid.

I am “floating in the midnight sky,” glimpsing the possibilities a life with traditional medicine may offer. The points of light are innumerable. Such is the dawn of change.

But even change will not stay. One cannot hold onto the midnight blue for it is only a moment’s ride. Always, the magic lasts just long enough for us to remember to believe.

Whether or not we go walking in the air is our choice. We can enrich our experience as much or as little as we choose. We are not confined by what our bodies can or cannot do.

Our most powerful tool—our curiosity, our ability to imagine—is what wraps and re-wraps the world so that it once again is new and shiny.

To go walking in the air is to “take the world by surprise,” to open our arms to joy, believing nothing is impossible. It only takes a moment to believe. And then our feet touch the ground.

To accept that walking in the air is as necessary as keeping our feet on the ground is to know joy, ours to live or not.

It is a game of catnip mouse with declawed paws.

It is the awe of experiencing each moment for none can ever stay.

Sometimes we walk in the air. Sometimes our footsteps are one in front of the other, grounded. It is an ever shifting balance.

Happy holidays. You are all points of light.

Here Are My Shoes

I did not know to send my shoes to Paris but here they are, virtually. Even the Pope sent a pair of plain black dress shoes; UN Secretary General Ban Ky Moon sent a jogging pair.shoes 120915

Type, condition, or owner is not the criteria. Solidarity of the human spirit is.

20,000 pairs of shoes arrived in the Place de la République in support of the activists who were not able to march at the UN climate summit. French authorities banned large outdoor marches in light of the recent terrorist attacks.

Activists turned to the compassionate response for terrorism is never a match for compassion, a truly revolutionary act. Compassion connects. The world sent shoes and then, hundreds of thousands in cities across the globe marched for those who could not.

In solidarity, there is awareness, a sliver of light where there once was darkness. That is change.

Black Bears of Florida, here are my shoes.

Black out for the bearsActivism did not stop the black bear hunt. It was a mismanaged slaughter as predicted. The Florida Wildlife Commission (FWC) sold over 3,700 hunting permits for the “harvesting” of 320 bears. In less than 48 hours, 298 bears were dead. As of this writing, the final bear death total is 304.

There had been no black bear hunting in Florida for 21 years. The population was considered endangered but in recovery. No one knows the total number of black bears in Florida. Most agree it is around 3,000, including the FWC who sold more hunting permits than the estimated number of bears.

The continued presence of activists did shut down the hunt five days early. They gathered at kill reporting checkpoints to monitor the hunt as well as to photograph and record bear data. And yes, they posted the data on social media. It is still getting attention.

Black bears found a way back from being an endangered species only to discover they are refugees in their own land.

In Tallahassee, there was a Requiem for Bear ceremony. When there is reverence for life, there is a spark, a way to begin anew. Increasingly, pairs of occupied shoes are coming to Florida courthouses and county commission meetings for the rights of black bears.

Seminole County is enacting an ordinance outlining specific requirements for humans to do their part in living with bears. Sponsored state legislation for 2016 will help municipalities cover the costs.

Virtual connections as well as person-to-person contact allow the issue the light of day. Solutions appear and disappear. Not all are feasible. Increased awareness results in increased opportunities for connection. That does work. It is how change occurs.

Syrian refugees, here are my shoes. Winter Solstice Skies 1214

Hundreds of thousands of refugees have died in Syria, and millions are fleeing. Numbers are fluid but an inter-agency group reports over 4.2 million “are persons of concern.”

I am reminded of a Flannery O’Connor short story, “The Displaced Person.” The title reflects a well-known and often-used term for WWII refugees. Themes of this story—bigotry, racism, xenophobia—are evident in every day events across the globe. We connect to them virtually.

Of late, America has given fear center stage. All of it is spew, the stuff of authoritarian regimes, so similar to what the refugees are fleeing. They must wonder what to do, knowing death is certain if they stay and life is uncertain if they go.

When it comes to refugees or any “displaced persons,” we wrap ourselves in labels—hold up our signs–so there is no doubt as to our identity, provided we are able to spell it correctly.

Hiding behind a label keeps us from making the compassionate response. We forget labels reveal not only who we are but who we are not. Our fear and paranoia crackle and pop like the short-live flames they are, ever in need of an outside wind.

The compassionate response arises from the stillness within. It thrives on our connection to one another. That we are human is label enough. The compassionate response is the thoughtful tear on an ember of fear. One is all it takes before there are two. Solidarity of the human spirit is that basic.

Humanity, here are my shoes.

Reflections: A Stitch in Time

Every moment we experience is a stitch in time sewn into a series of scenes. This is the tapestry of a lifetime, a collage of experiences on what it is to be human.

Meraki MomentIf used wisely, this rich and precious fabric is a remarkable reference. The tapestry reveals the scenes that made us who we are. In reflection, we discover who we might become.

Each single stitch in time was once as fresh and new as the one we are experiencing right now. Our lives pass in the permanence of impermanence.

Look at the rich tapestry that is you. You are not one moment, a single stitch, but a series of experiences, stitched as scenes.

To reflect upon scenes now sewn is to view one’s life in progress: scenes lived, scenes being lived, scenes not yet a single stitch. To reflect is not to relive but to reveal perspective, perhaps possibility.

It is the life changing scenes—the ones that nearly break us–that send us to the tapestry for reflection. It is quite human to want to re-stitch, to undo what cannot be undone. However, the stitches are taut, sewn with a seemingly unendurable sorrow, permanently part of the tapestry.

In reflection, we are reminded each stitch is unique to its time–it cannot be undone or relived—whenever we are ready, acceptance awaits.

In the meantime, we live through one stitch in time after another. It is with the first stitch of forgiveness that we begin to mend the rich and precious fabric of our tapestry.

What you are is what you have been.

What you’ll be is what you do now.

Buddha

 

The Last Roller Coaster Ride

KM Huber image

There are roller coaster lives–the downward rush, the upward crawl–as energy and inertia swirl present into past. Life-changing events slow the roller coaster, sometimes to a stop. These are the moments of sifting through the life experience.

Of late, I have been in such a pause, taking a long sit in my past. I decided I do not want to repeat the familiar upward crawl or the rush to a bottom I know too well. I want off the roller coaster. To do so, I return to the moment I decided to ride.

It is a warm, August night in Colorado at Red Rocks, 1976. The naturally occurring amphitheatre provides perfect acoustics. At over 6,400 feet, the stars seem close enough to touch.

On stage, Judy Collins is singing the Ian Tyson ballad, “Someday Soon.” It is a song of a doomed relationship: a young girl loves a cowboy who loves the rodeo more. She is “going with him,” anyway.

I am 24, and what I hear in “Someday Soon” has nothing to do with loving cowboys or rodeos. Someday soon means the risk is worth it, no matter the odds.

I was euphoric, confident in the new life I was about to begin. I am not sure just when I reached for the stars. I only know they were in my eyes.

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What felt like endless possibility, however, was only one moment at the top of the roller coaster. It is not always easy to recognize the ride is downward. Not in the early years of chronic illness. It is easier to believe in someday soon.

I ride the roller coaster for nearly 40 years, until 2015. In July, I weary of chasing someday soon. I develop myelopathy—quadriplegia is a possibility–in addition to autoimmune disease.

Successful surgery sweeps me up in the energy and inertia of the ride. So much seems possible as the cervical fusion actually begins to take. As unexpected as that is, there is more good news. The inflammation from autoimmune disease is helping my vertebrae heal.

Inflammation is vital to healing bones. It is the body’s way of dealing with intrusions although my immune system is so exuberant it attacks itself.

Framed within a healing mindset, autoimmune disease does not seem a downward ride. But pain reminds me it is. The stars in my eyes stay until October. It is my last roller coaster ride. Risk has lost its appeal as has the idealism of that night in 1976 and “Someday Soon.”

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I hold the memory close for it is a night when a lifetime began. After nearly four decades of roller coaster days, each high and low is invaluable. They are the experiences that make me who I am now.

And that is where I begin, not starry-eyed but focused on the middle ground, accepting what is: framing the pain of autoimmune disease within a healing mindset that includes medication.

There are no good choices but some are less toxic than others. Immune suppressing drugs will affect—maybe even stop—the healing in my neck. Same is true for steroids. In fact, my healing is possible because I am not—nor ever have been—on immune suppressants. Rarely, have I taken a course of steroids.

So, I decide on the drug, Gabapentin. No odds given or promises made but there were none with my spinal cord surgery, either. There is the comfort of impermanence–nothing and no one stays the same.

Oh, I still look to the stars with wonder but I have no desire to reach for them. I am content to explore impermanence. I aim for even.

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On this blog, I have written more about chronic illness than I ever intended. Perhaps publishing weekly posts increased my awareness of its presence. :)

I will post as regularly as I am able. Everything is taking a bit longer these days but then, I am making a lot of changes. Some I will share here. And the medication seems to cloud my thought process. Writing just takes a lot longer.

As always, I read your comments—I enjoy our exchange—I will respond.  And I have missed reading blogs. That, too, will resume. Thank you for reading this blog.

 

Revolutionary Acts

Awareness.

Compassion.

Equanimity.

Loving-kindness.

These are revolutionary acts. Their endgame is peace. Their leitmotif, trust that we will do what is required.

Just as peace is available to us in the experience of every moment so is the ability to commit revolutionary acts. They change us, usually forever. In trust, we experience the flow of change.

Change cycles through our lives like seasons. Acknowledgement or no, we will experience it, often as a storm, for change is energy. As we know, energy, even on its best behavior, is chaotic.Lake Ella Fountain 0115

Trust reminds us there will be another morning, another opportunity for revolutionary acts.

It is one thing to know the sun will rise but it is another to trust in what the rising of the sun brings. Regardless, each day dawns in total vulnerability, the wellspring of trust.

It is an extraordinary example of tenderness, this daily dawn reminder of what we are capable.

This revolutionary act of treating ourselves tenderly can begin to undo the aversive messages of a lifetime.

Tara Brach

It is no effort to store a lifetime of aversive messages, for each experience can be so labeled, if we choose. The energy of boxing up a life is minimal for it requires no updating just the initial experience and then re-runs. It becomes its own newsreel, skewed in comfort.

Ah, aversive, the coming undone of an attitude or feeling. Ours is a slow dawn, this throwing off of aversion, yet we do rise as we face what we once would not.

We stand in revolutionary awareness, ready to commit acts of compassion, loving-kindness, and equanimity.ocean pine 0215

Rage has its own set of acts—not revolutionary–its endgame fear, pain, and death. We are averse to its message, its messengers, and its weapons–guns, knives, poison, bombs—we are diminished by each death, all of the life landscape forever changed.

Revolutionary acts may or may not make us stronger—I do not know—I am not sure that is their purpose. I suspect it is awareness. What I do know is the open heart is a revolutionary beat ready to rush rage.

To undo rage is to undo the averse messages of a lifetime. It takes tender conviction, a commitment to a lifetime of revolutionary acts. That is my call to action, my arms open to all.

These are not days for sunshine patriots for the dawn is grey.

Revolutionary acts do not require the radiance of a sunrise, just a dawning, a promise the sun will rise. Trust is enough to keep the open heart beating. Revolutionary acts rise not to war but to the absence of battle. Theirs is the tender touch of awareness.

Note Regarding This Post: Once again, there has been a mass shooting in the United States. As a Zen Buddhist, my position is obvious. This post is about revolutionary acts that involve a call to the heart. I am not the first to do so or, unfortunately, the last. Would that I were.

My position is often called naïve. That it may be but this is what I know: a change of heart produces results every time. It is our hearts that ultimately get our minds to re-thinking.

To open our hearts is a revolutionary act, requiring constant vigilance, and a belief that the sun still rises.

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