Living Too Close to the Sun

I am too close to the sun, simply by being alive, and I am feeling the burn. It’s a deep heat, a red so bright my eyes are the blue of the sky. At 67, I no longer have bright eye color not that I ever did. Mostly, I remember my eyes being either blue or green on any given day but in living too close to the sun, they have gone blue.

These blue eyes are the best of the burn, although color in my face is a welcome change from the pale, drawn look I have known for years, for all kinds of reasons. Yet in the days of the pandemic that encompasses the globe, I find color. The life lens, no matter its view, never fails to surprise.

Medical personnel are none too sure why I am changing color but they do not lack for theories. As if to impress, I’m told I would’ve been welcome at any emergency room as my face was the size of a pumpkin, albeit a red one. Still, a single corticosteroid injection reduced the swelling and lightened the red from raspberry to watermelon but still I feel the burn and the itching, always the itching.

After 40+ years of autoimmune disease, this is my first burn, which is rare. It’s not hives or urticaria but a burn from everyday sun. It’s not as if I was trying to fly, like Icarus, spreading my wings or as if I found the sun every day. Nope. More than likely, methotrexate triggered photosensitivity but there are other symptoms like difficulty swallowing and muscle weakness so imagine both muscle and spinal cord disease or myopathy and myelopathy. Or don’t.

My mind does not go there and for right now, neither do the blood tests. And after some weeks, my burn has grown pale but I like to think my eyes are still sky blue. Probably they’re not but I’m trying to salvage something from this.

I may never know what triggered the blue sky of my eyes but it’s good to know a face of fire can be a good light. No fever, just fire, which seems counterintuitive but then, this is the time of viruses jumping species and a president talking about disinfectant injections.

It’s a time of contradictions, when what we have known no longer works. We are beyond thinking outside the box because…no box. Burned, probably. And where does that leave us or with what for that matter.

I’m thinking of Pema Chodron’s belief that most of us will not give up on one another, no matter the crisis and no matter how bad the behavior. And it has been bad by many but not by all. There is a common core of good, a love of life larger than the oxymoron of carrying a gun for civil rights–an element of life that knows not the burning of the sun but the light of courage, which is in larger supply than you might think.

Courage does not rouse the rabble but works its way through the rubble of the unprecedented, neither for the faint of heart nor for guns. Civil rights do not move forward behind a gun but with each heartbeat of belief in a better world for all. We can learn to live differently or swagger with guns waving.

We have a rare opportunity to begin anew, maybe the last chance for our species. Change does not mean burning all we have been and rising from the ashes like the phoenix. It just means not living too close to the sun but with eyes the color of the sky.

So Much Life, So Many Lenses

Extrapolate. It’s what’s possible when truth is present, which it is not in these days of COVID-19, not completely.

As always, there are exceptions such as New York Governor Cuomo’s daily press conferences. New York is a state and a city whose Adirondack mountains and Met opera I know only virtually, now the predominate means of viewing all life. So, I extrapolate to get a view of the state of my Florida, which I once traveled up and down and back-and-forth, as I did my own city of Tallahassee. No more.

No doubt my view of the news is skewed but I have a sense of comfort, an overall understanding, and that’s enough. What happens in New York City is not the scene in Tallahassee, we don’t have the numbers, but Miami creeps closer every day, and they must extrapolate, too, because they don’t have enough tests for their own numbers. Unlike the rest of the country, New York does have tests.

It is a virus unlike any other, one that literally takes the breath away as it gobbles up the way we once lived. Now we know the meaning of what can happen when a virus jumps from another species to ours. The only way to sustain life is to stay away from each other.

Even the word quarantine has a hard sound to it, as if social distancing were a punishment, which it is not. It’s a different life lens. It’s the view we have when life changes from what it was.

I really do know something about this as I’ve been social distancing for 10 years. It happened gradually, for one health reason or another, distancing myself from large gatherings, shopping the early morning weekday hours, giving up long distance travel. My immune system is compromised as is my spinal cord. It is best for me to keep my distance, less chance of falling or getting the flu.

Acceptance arrived but it took its time, as it is wont to do. Ask anyone you know who lives a differently abled life and they will tell you that binging anything–movies, TV shows, podcasts, gaming, reading, audiobooks–is not a way of life. Each is a welcome distraction from the discomfort of being disabled but not a one is life itself.

In Randall Jarrell’s poem, “The Sick Child,” a young boy confined to bed and beyond boredom cries out, “all that I’ve never thought of, think of me!” I first came across the poem when I was teaching college English in Wyoming, a lifetime away from the moment that all I never thought of, think of me would become my mantra. Then, I was in my mid 30s believing remission was forever, as if anything ever is. Yet, there was so little I didn’t know. Mostly, I had an answer for everything because magical thinking works like that.

Now I know nothing but opening myself to the reality of each day, whatever it maybe. I cannot possibly know what I need until the day dawns, as if it were that easy. My mind will not still the scenes of who I was or where I once walked. It insists on showing.

Sometimes, it’s the crushingly cold mountain streams of Wyoming where wind will steal the breath away. None of its bouldered paths will I walk again, gasping for breath above timberline, cursing at the caught tip of my flyrod in the ponderosa pine on my way to a lake that was once snow. No less in my mind are the woodlands of live oak and longleaf pine, sandy soft roads of shell and sandstone, sabal palm, and the shores of Saint George Island.

Florida and Wyoming, so physically distant and forever together virtually, sometimes so much so it hurts and then angers. With a ferocity of focus I cry out, “all I never thought of think of me!” It’s the words on the air that make the fury fade, as the energy of emotion reorganizes, evens itself out.

Something I never thought of does comes to me, not so much life changing but a broader perspective like  Pema Chodron’s we are always in relationship, even with the insect in the room. So, a change in perspective. Tunnel vision does tend to skew. None of life is perfect. There are cracks everywhere–they’re how we cope–these streaks of hope in a time of novel coronavirus.

It’s closing the window of what cannot be and opening the door of what is, meeting reality with equanimity, no longer blind by wishing and wanting. That is viewing life through a new lens. It is the past that takes us to the door of the present but it knows its place. Here, we live. There, we remember.

So much life, so many lenses.

KMHuberImage; St. Mark's Wildlife Refuge; Florida; Gulf of Mexico

The Sour Joy of Being Alive

Not all lemons are for lemonade.

Some are made of sterner stuff–tart flesh and rind for grind–a bit of zest. Acquired taste? Maybe or a mere matter of equanimity, appreciating the lemon as is, without making it into something else.

I find the lemon fine, a new lens, a wake-up call.

Recently, I purchased a digital camera (with 42X optical zoom) and received binoculars (12×50) as a birthday gift. Why would I want either? My index fingers and thumbs are compromised as are my legs. Any outing is quite the risk so lemons abound, and no amount of lemonade will change that. And I am tired of making lemonade.

The thing is, when a lemon is around there is a chance for zest, a singular moment unlike any other; as well, there is the sour that can sap any day, maybe even change life’s course. The lens of the lemon has much to offer.

In the last few months I’ve increased my visits to local parks and to St. Marks Wildlife Refuge, where the wild ones still run but are wary of me and mine, as they should be.

Binoculars and a zoom lens bring me to them from afar. Each look is framed in forever–in my mind’s eye or a single snapshot.

There is a bite to these moments, and I don’t ignore it or make it something it is not. I don’t want to miss what the outing offers, the sour joy of being alive.

Will this be my last trip? 

I bite deeper into the lemon to capture the moment for all the days of no trips.

My first binocular view was from my bedroom window, the top of a dying but still substantial trunk of a Loblolly Pine and a pileated woodpecker so very present in its work and completely unaware of me. There is joy in not being seen, not interrupting.

That memory of the woodpecker enlarges itself every time I call it round. What was initially a day of being confined is now a memory of being in the world bitter but the lemon rind surprised with a not so sour zest.

There is a freshness to the flesh of the lemon, and I am never more present than in its presence.

The bite of the moment is just one sensation in watching a tricolor heron sitting a branch of a now dead oak in the saltwater marsh at low tide, all the while a Cooper’s hawk sits atop. As I write, the moment grows in its magnificence. Memory does that.

It was a fine lemon moment. My insect spray did little to nothing in keeping the flies from biting my legs; my arms were weak so the camera swayed as did my legs. Keeping my balance was a constant shift as shot after shot blurred or the zoom lens was inappropriate for the distance but still the snowy Egret fished the sun-drenched marsh grass.

I have come to the lemon lens late in life, grateful I did not miss it. Like the dying trunk of the Loblolly pine, there are years of life left but being is ever changing. No excuses, no explanations, no adding of sweet to bitter, just freshness with a bite, zesty. Indeed, equanimity.

One with the Wood

Morning mantra…I don’t remember the day it started, years ago certainly, but its why is another matter. I wanted a way to define being in the moment for if I could confine it, then I could experience it. Ha!

I lost the control and kept the mantra, which doesn’t hold back: mine is to meet each moment with compassion, lovingkindness, joy, and equanimity, which is not to say I do. I’m not setting goals just reminding myself to open the door of each day and begin there.

Just waking to some days is easier than others. To meet what happens after that and look to the heart and not only the face is never easy. Feelings may not be facts but they are powerful for at their core is pure energy.

Mindfulness–awareness like no other–helps me open that daily door, which is sometimes to a forest, rare and rich. Every day is a stroll, indoors or out, but a forest floor with sun shadows is stuff for my memory banks.

It is summertime in the Florida panhandle (although the calendar considers it spring), the humidity almost as high as the 90°+ temperatures, some of my best days for my body.

My walking stick is wood, a live branch now fallen, stripped of bark and varnished clear, its knots remembered. I have added black rubber tips to its top and bottom, one to ground and one to grip, for ease of grasp.

My left side is weaker, so much so my left hand cannot hold the stick with any certainty but my right hand, used to leading, finds the walking stick a useful prop. Sometimes, balance looks lopsided.

I waddle and wobble, a slow stagger sometimes, but an evenness of mind and body down a forest path on a late spring morning just after sunrise is–to me–all that and lots of birdsong.

This greenway is 50 acres of forest and meadow with 12 miles of dusty sand trail but to me it is boundless, yet forests have their limits these days and are now carefully tended not to exceed. What is done is done.

I walk until I tire, reaching a picnic table made of concrete, its bench table tops painted brown for natural reasons I suppose. Still, I am grateful for such tables, as well benches, for there are days I stop briefly at each one but today, it is the second picnic table where I will stay.

Not far along, I know, but in the forest, distance ceases to matter, like time. It’s forgotten. To neither, the forest bends. Rather, it gives its all.

Regular readers of this blog may recognize the above picture of a magnificent live oak split down the middle by lightning some six or seven years ago, not even nanoseconds in its life. See how its heart has sprouted so many new lives.

In the distance, in stark contrast, stands another oak, a sentinel stripped of its bark, possibly by lightning but by life, nonetheless. At the tip of one of its limbs, I notice movement, the shape of a turkey vulture when its head switches to profile, but mostly it is one with the wood.

In awe, I watch as all else disappears.

Not even the heart of the magnificent tree, with all its new lives distracts from being one with the wood. No sound nor single thought or emotion, only nothing consumes mind and body. I am neither on the ground or in the air, only nowhere.

In some moment I return to being a human alive with the energy that animates everything rather than being one with it. Such moments never repeat, not in the same way or same place, and in some moment I became comfortable with that, just meeting the moment I am in, grateful for a day as a human being.

Silence is not the absence of something but the presence of everything” (Gordon Hempton, Ecologist).

All Right Will Never Be the Same

My primary care physician and I are having our usual conversation when she says, “If you didn’t do what you are doing, you would not be living on your own. Others would be caring for you.”

“Thank you” is all I manage to reply. There are so many facets to what she said. Later, I tell a friend who responds, “that’s so powerful.” It is indeed.

My mind’s memory reels spin, searching for July 2015, days before the surgery to decompress my spinal cord and prevent quadriplegia–this time. I’m told to stay at home and “whatever I do, don’t fall.” So, I don’t.

My stagger resembles a drunken Frankenstein’s monster and more than once, my scrambled eggs end up on the floor, as signals short-circuit. My limbs are less and less.

I meditate a lot and dream, vividly.

I am in a surgery where all the instruments, table, and equipment are white light in a brown paneled room. Dressed in a hospital gown I sit on the surgery table, legs dangling over the side. I’m not alone.

 Maurya sits next to me, also dressed in a hospital gown, legs dangling over the side. We talk about the surgery, as if she were still alive but she is not so our conversation is the sense of speech.

 “But I will make it through, right?” I remember repeating the question as she leaves, taking some of the answer with her but not all. I will go through stuff, maybe a lot, and I will be all right, but all right will never be the same.

And it hasn’t been, knowing there is no recovering only progressing, and no one, even in dreams, knows what that may mean for spinal cord and autoimmune disease.

I “do” not waste days wondering or analyzing dreams. I immerse myself in the life I have, and the more present I am the larger my world. My days are never long enough for all I want to do.

Mindfulness is not a placebo; it is awareness, raw and unfiltered. Finding the worthwhile in the seemingly worthless, like Leonard Cohen’s cracks that let in the light, imperfect in an impermanent life, one experience after another. It’s in the unexpected that I find out who I am.

This latest round of medical visits began with my driving to Georgia with a tampon up my nose. Who knew that was a thing? This is my kind of unexpected–almost expected, now.

Every three months, I see my rheumatologist and this last Tuesday, just as I was getting ready to leave, my nose began to bleed. These nosebleeds are now chronic, a side effect of Sjogren’s syndrome.

Immediately, I pinch the bridge of my nose, deciding whether I need a light(L), regular(R), or super(S). I don’t want to change tampons while I am on the road so I settle for an R. I close the red door of my apartment, turn the key in its lock, and walk to my car.

My drive takes me through Buffy St. Marie’s “Tall Trees in Georgia,” long leaf pines, sprawling live oaks, and in spring, wildflowers in the median. In winter, a steel green blanket.

By the time I reach the Macintosh Clinic, my nosebleed has stopped. The two-story, red brick building with white pillars once had another life and usually I stop to admire its architecture but on this day I’m grateful not to walk into the clinic with a tampon up my nose, although I was perfectly fine driving through 8:00 a.m. traffic.

When I tell the nurse about the nosebleed she asks, “When you were at the light, did you turn and look at people like this?” And her brown ponytail swirls from side to side as she gives me her best tampon-up-the-nose look. “I would! I’d find a cop and look straight at him!”

It is only recently I have come to know that tampons up the nose are an actual thing, medically. And on this day, I discover that my rheumatologist (and later) my primary care physician believe staring is the preferred behavior when wearing.

I tell my 90-year-old neighbor, Grace, and she, too, wants to know if I turned and looked at people. I get it, I really get it. I’m almost looking forward to the next time, for there will be one when I least expect it.

And all will be all right and all right will never be the same.

The Best Feeling Ever

I always wander home, eventually, ever surprised, once again, that no matter where I roam, I am always home. “Wherever you go, there you are.” (Jon Kabat-Zinn). The hearth of home. Joy.

Yes, joy. No, really. Joy, in all of its rejoicing, delight, exultation. The best feeling ever. It’s always there. I just don’t realize it. I get lost. Why is that?

When does home become a foreign place? It doesn’t, of course. It is I who become a stranger in a new land, when ideal replaces real. When joy becomes only a brilliant light, unsustainable. Unreal.

Joy is not a momentary flash, all show. Joy is pure prana, the energy of existing. It is home. The trappings and trimmings change but joy seeps through any moment, no matter how dark.

Joy fills the cracks of experience, pulls the pieces together and seals them with grace. That is the hearth of home, no matter how the house might appear. Within are the rooms of a lifetime. The exploration never ends.

Still, I wander from time to time, and it is in impermanence that I wander– when change arrives–I go in search of what is gone but don’t yet accept. It is a fool’s errand but I go anyway.

Once I realize I have been running, I stop. That’s the easy part. It is at home that I am face-to-face with the change that sent me running. At a glance, it is minimal. New disc herniation at the base of my neck, a gnawing stomach in protest of ongoing chemical intake. Low sodium and fluid retention issues, maybe heart involvement.

The leitmotif of autoimmune-spinal cord disease, ever involving all of the body. Any newness wears off as soon as it is discovered. Where is the joy? Nothingness, groundlessness, may warm the cockles of my Zen heart but my humanness cannot help but hold cold.

No, I do not feel joy in this moment. I have to trust it is there, nothing more and nothing less, as I pick up the pieces, restructure my home, shake up one routine after another. Rearrangement, new structure.

It is very like a jigsaw puzzle. I know what the picture looks like. That doesn’t change. It’s the rearrangement of the pieces, the energy of grace, that gives me shape. I sink into my surroundings, the room that I occupy more than any other.

It’s comfortable here, my hearth of home, and every time I return I wonder why I ever left. My electric, adjustable queen-size bed, room enough for notes, naps, food, and stand for my desktop keyboard. The comfort eases the ache of arthritic joints, supports my spine and damaged spinal cord. Sturdy and soft, I am ever grateful for home.

From here, I reach out to the world and it calls back. Connection, the experiences of a lifetime. Easy to shut down but in absence, connection changes. Impermanence is inevitable; it does not pause because I do. Easier to stay connected, experience after experience, no matter what.

All of us have only our kind of love to give but I wonder if we know it’s invaluable, pure joy, light no matter what. Life is not limited to one lens, one look, one way. Maybe that’s what I find most difficult.

I don’t want to sit in the eye of any storm anymore because I know to come through is to be changed. That is the way of life in this dimension. It’s not so much what I lose or who I no longer am. Not anymore. It is change itself. That’s new.

A voice from within welcomes me to aging, which I cannot escape, either. There is a lilt to the voice that I recognize as joy and the grace of experience. They whisper trust, and I do. After all, they are always with me.

The caverns of my mind go dark but not completely. There are cracks in every experience. It is the light that wins, as a friend told me, which is not to say living in the light is ever easy. It’s not, nor is it meant to be.

For most of the last six weeks, friends have kept me busy, some on Words with Friends. Slivers of light, both friends and words. It was not writing but it was words. And a blog post here and there. No thing and no one ever stays but each is an experience, all mine.

KMHuberImage; writing

Each time in my wandering, I wonder if I will continue to write. There will come such a day when I won’t, and it is closer. It surprises me that I accept that so readily but I do. With each illness flare-up, I am less, physically. Winter is hard, even a Florida winter without a “snow event.”

A corneal abrasion in my left eye shut down my sight for a while. Corneal abrasions are common but this one occurred in a mishap at a vision clinic and nothing about this incident stayed in the realm of the usual.

Never one to stray far from the written word, I listened to audiobooks, fiction and non. In reading Fire and Fury, I was reminded of what it is to sit through yet another storm of our collective chaos but unless we immerse ourselves in this experience, we will never move through it. The longer we look away, the harder it will be to face who we are.

And in that, I find my way home, again, replete with new life lens, healed corneal abrasion, and if not new vision at least light enough to string together sentences, keep connections, and find ones anew. Still others yet to discover.

Everywhere I go, there I am.

Thanks to Leonard Huber for the Seattle area traffic images, both light and dark.

 

 

 

Inside Hopelessness Is a Bit of Badass

What I return to, time and again, is the sliver of hope slipped inside hopelessness. It’s so easy to miss–it’s like a well-kept secret–for without hope, hopelessness does not exist. That is so badass.

I, as a sexagenarian, have this conversation regularly with my neighbors. Some are my age but most are septuagenarian and octogenarian. I don’t gain much ground until I remind them about “badass.”

That always brings a smile. It’s a generational thing as to why they grin. I have to cite the Urban Dictionary to remind them badass is a good thing, a powerful, authentic, compassionate way of life. But I know it’s the word “badass” that takes hold as hopelessness finds itself at the curb, albeit momentarily.

A sliver of light lives in unlikely places, no matter how long the darkness lingers or how immense its presence. It is not like hope belongs to only one generation at a time. With historic eyes, hope transcends.

Badass is not an easy sell at any time. Some days, being badass means the right thing to do is way too hard. Being aware is not easy in an existence that is ever-changing. It’s not easy living from the inside out.

Being badass means meeting the storm, knowing that loss looms, accepting all escape routes lead back to the beginning. The only way through is forward. Life gives us hopelessness and within it, hope.

I have learned to lose myself in the rage of hopelessness’ storm. That takes a few badass turns of thought, believe me, but being in its storm is the only way to center myself, to sit in its eye, the hope in hopelessness.

To watch a warbler arrive. My barren landscape brighten with yellow and black, breaking through my black-gray fog. I get a glimpse of the world going on around me, as it should, for no storm is everywhere.

Nor does the winter warbler stay. It is mine to find my way to the self that is still. That journey is never the same nor should it be. It would be pointless to go through a storm and not be changed.

I don’t think it’s a matter of the storm’s rage, although I cannot say I am not affected by its ferocity. I’m just not there to do battle. I let the storm exhaust itself. Rage will do that, when left alone.

And the body adjusts to the ravage that is any disease but it does have a special appreciation for rest in any storm’s aftermath. Being has been through yet another storm and will never be quite the same.

On any day, the body delivers all it has to offer. That may be the best definition of badass yet.

*Badass note:  I’m being quite selective in my definition of badass here, confining it to ethical, authentic, and compassionate behavior. The Urban Dictionary provides alternatives here.