autoimmune disease – KM Huber's Blog

Living Too Close to the Sun

Posted on May 17, 2020 by KM Huber in Current Events, Lupus, Zen

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

Posted on March 29, 2020 by KM Huber in Aging, Current Events, Florida, Inspiration, Oneness

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.

All Right Will Never Be the Same

Posted on January 14, 2019 by KM Huber in #LongerView, Inspiration, Lupus, Spirituality

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

Posted on January 15, 2018 by KM Huber in #LongerView, Consciousness, Inspiration, Zen

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.

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

Posted on December 17, 2017 by KM Huber in #LongerView, Consciousness, Reflections

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.

Sitting Silence

Posted on November 14, 2016 by KM Huber in Cooper and EmmaRose, Inspiration, Lupus, Reflections, Spirituality

In times of loss, I have always gone silent. To me, silence has always been a response but it is only in these later years that I learned to sit silence as a response to loss.

Certainly, silence has been my only response on this blog for well over three months. Almost daily, I posted on Aim for Even. There was the interruption from hurricane Hermine, and there was the first of two hip replacement surgeries.

The surgery went extraordinarily well but the patient lost a way of life, totally unexpected. Loss is often evident to everyone around us before we meet it face-to-face.

And so it was for me with feline EmmaRose. She appeared frequently on this blog, and while she lives still, she lives elsewhere.

My hospital stay revealed that I was no longer able to care for EmmaRose even beyond my recovery from hip replacement surgery. More and more, autoimmune disease dictates what is possible for me. In this case, accompanying anemia keeps my energy level quite low.

This partnership of autoimmune disease and anemia has been affecting my life for some time—quite seriously—yet I chose not to hear what my rheumatologist was telling me. Neither did I sit silence for counsel. Rather, I ignored or reinterpreted every medical pronouncement, an old behavior of mine.

Only in losing EmmaRose did I sit silence. I knew the right thing to do and did it but the right thing is always so hard to do.

Is that because I ignored my intuition, my “gut,” until I could no longer deny it? Or is it because doing the right thing always asks something of me that I don’t want to do.

Good questions, and I will ask them all my life. The answers are time sensitive but the questions are eternal. They allow me to see me as I am; always, it is revealing.

I sit silence, all eyes and ears.

And if I am fortunate, a bit of magic shows itself. I have never doubted the presence of magic. It stays hidden in plain sight, its last protection. As fast as this world whirrs, magic is missed.

So often, we chase what we will never catch. Where is the magic in that? As a believer, I tell you that once you have walked through a magic portal, you will never forget the experience.

Some years ago, I discovered an animal sanctuary, deep in the Florida forest. It is not a rescue or a Humane Society but a farm for medically needy animals to live out their lives in a family setting.

If it sounds idyllic, it isn’t, and to me, that’s what makes it perfect. Not too long ago, I was an administrative volunteer for this sanctuary because its mission is like no other. There are no paid staff and there are two veterinarians on site. And yes, it exists entirely on donations.

Magic always wends its way.

So, EmmaRose, now medically needy herself, returned to where she once lived. Daily, a little girl sings to “her best kitty ever,” as a family helps EmmaRose adjust, again, to life on the farm. At the very least, the scent is familiar as is the love.

And I cry but my tears are more for the joy of the years we knew than for the years we will not know. Love always overflows loss.

No matter how dark the moment, there is always a sliver of light. If I sit silence, the world cracks open just a bit.

I no longer focus on the future, what I may or may not experience. The only life I know is the current moment. It has my complete attention. Even without death, some lives leave us. We never know when we must let go, when we must change.

Sitting silence is immersing myself in the experience of being alive, raw and unfiltered, whether it’s the loss of health or doing the right thing for EmmaRose.

I know that each loss reveals its worth in its own time. And then there is the magic. If I sit silence, I will not miss it. I will not go whirring by.

Looking Through the Lens of Limitation

Posted on April 25, 2016May 2, 2016 by KM Huber in Consciousness, Inspiration, Lupus, Reflections, Spirituality

For 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.

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.

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.

When the Bottom Falls Through

Posted on February 1, 2016 by KM Huber in Consciousness, Inspiration, Lupus, Spirituality

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.

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.

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.

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.

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.

The Last Roller Coaster Ride

Posted on November 9, 2015 by KM Huber in Inspiration, Lupus, Spirituality

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.

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.”

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.

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.

Bits and Pieces: The Reality We Have

Posted on August 16, 2015August 15, 2015 by KM Huber in Consciousness, Inspiration, Spirituality

If we live in the moment, we work with the reality we have. Sounds good, if a bit obvious or perhaps platitudinous. Yet, it seems the way to experience the best of what is being offered.

And if we are not thrilled with the reality we have, we need only remember that like the weather, life is impermanent. It will change; reality will offer other options.

Working with the reality we have is a bit of a slippery slope as joy never seems to stay long enough while pain never seems to leave soon enough.

Reality—the moment–is all we ever have. For however long it lasts, it is for us to do the best we can. Impermanence will do the rest.

Currently, my reality seems as if it is in a holding pattern. Doing the best I can to experience the moment I have, I admit I am often on the lookout for change.

Recently, I came through cervical myelopathy surgery with remarkable success–truly, there were some unforgettable and stellar moments–but success has shown its shadow.

Success and shadow—as one—make up memory. Always there are moments of both but perhaps only in memory are the two as one.

Memory does not re-create reality. It allows us reflection, a way to wait upon reality, to work with the moment we have.

In shadow, my reality seems a growing force of chronic illness comprised of autoimmune disease, degenerative disc disease, and myelopathy. There is no complete defeat possible, not physically. That is not my reality in any moment.

Accepting that reduces my suffering and strengthens my resolve to explore the experience I have. By not attaching to the pain as the only reality I will ever know, pain passes like a shadow. Acceptance incites change.

Of course, I am not always as aware or as accepting. Sometimes, I have such an aversion to my reality that I am determined to change it, as if I could. After all, I am not accepting the actual experience. I am only trying to avoid it.

Sometimes, my aversion is quite elaborate, methodical even. Other times, I rush reality for all I am worth with everything within my grasp. I suffer for my indifference to reality. It is as if I am fighting my own biology.

After all, each of my body’s cells works with the state of its reality. Each cell works for balance–aging as well as disease affect this process– yet each cell works with its own unique makeup. It accepts its options.

In working with the reality we have, we accept that moments do not restore each other. They offer us other options, new perspectives on reality that just a moment ago seemed so difficult, even impossible.

Reality is messy that way. It overlaps who we are with who we were just a moment ago, leaving a trail of consequences.

Neither good nor bad, they are reality lived, bits and pieces of experience. Some are stored as success; others slip in as shadow.

The wise adapt themselves to circumstances,

as water molds itself to the pitcher.

Chinese Proverb