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.

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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. 

My Own Bit of Buddha Nature

Pre-spinal fusion surgery, I described my gait as ”a drunken Frankenstein.” My neurosurgeon thought it apt.

Subsequent surgery and yoga have improved my walk considerably but my gait is still ”spastic” so there remains a bit of Frankenstein about me and always will. My body is not in synch.

Both hip replacements are great but my spinal cord is damaged from prolonged pinching. I’m among the 70% who show improvement. Still, I stagger sometimes, clumsy comes easily.

My neurologist explains it as residual from the cervical fusion, nothing monstrous, merely minimal–that which could not be restored–so less is better.

Body hardware strengthens sensation–works with the residual–what remains after the damage has been repaired. With less I learn to do more with foreign body parts. That’s as good as it gets.

And that’s the way I live, in an apartment of two rooms–living area/kitchen and bedroom–with a shower/bathroom. Even a full Frankenstein can maneuver here.

And isn’t that what being alive is all about?  Learning to live in the skin we are in and then go exploring. For a time, walking my apartment with a slight stagger is sufficient.

Always, there is writing but with limitations.

There is not enough sensation in my fingers for actual typing. This has been true for the last two and a half years. In this regard, surgery provided no improvement, no change.

What remains is tingling/numbness in my arms and hands, all fingers and both thumbs affected. Yet, what does not change can be good news and in my case, it is.  No healing is possible so maintaining what I have is the goal, and that I am doing.

I’ve been using speech recognition regularly but speaking the written word is not the same as typing it. Sounds silly but the thought process is different, completely different.

For me, editing speech recognition is slow going. My brain commands my fingers–hunt and peck–but the keys they stroke seem to be their decisions alone.

Even so, I am book-building now, which limits the number of my blog posts but blogging is an integral part of my life, especially as I found myself becoming a bit of a Frankenstein.

How that happened is all here on this blog so I continue to post, from time to time. It’s comfortable here. I hope for you, too.

I am excited about this book because it is not like anything I have attempted before. There is a freshness in it. Like the residual that is me, much remains to be explored. And so, I am.

My one bedroom apartment is not the world, no matter how much the Internet introduces. Ironically, it is the online world that opens me to what is outside my door.

Quickly, I go nowhere without a walker but not the orthopedic wonders forced upon me after each surgery.  Companions they may be– to take me from one seat to another–but they are not friends, not wheels to the world.

I find my walker on the Internet, after much research, and I admit to hubris when it comes to the uniqueness of my wheels. So far, I have seen no other like it.

It feels more a motorcycle than a legged triangle on wheels with grocery basket and backpack. Silver handlebars bars with black, bike-like grips, it offers no seat but three gravel-gray wheels thick enough for trails, if I am careful, and I am.

I can zoom around people, snake though grocery store aisles. My mobility startles shoppers; free-wheeling I call it. Not my best moments, admittedly, but disability does not mean I walk with saints.

My walker may be my own bit of Buddha nature, my constant in the chaos. It is wheels for life–mine–as good as it gets.

Survey Says…

Living on a fixed income can confine–no doubt about that–my budget is the same bottom-line every month but cost overflows require a constant balancing act.

So, I have been looking for ways to supplement my income. While costs will ever be fluid, I need to work within my current frame of life, which includes aging and chronic illness.

It is not that my current frame is without flexibility for it is not. Neither chronic illness nor aging confine but both, too, have a budget. To overrun either is to exact a cost on myself that is rarely made up next month or in this lifetime.

When life expands, so does its frame but it has to be life doing the expanding rather than egomania or placing myself within a frame that does not fit.

So, I started taking online surveys for payment–in cents, usually. The best surveys pay a dollar or two and some up to five but these are not the usual fare.

I’m conscientious in my work–surveys interest me–I’m curious what others measure. The surveys also mirror my own living within the frame that is my life.

Specifically, my experience as an aging, disabled woman living in Florida. Any one of those labels will disqualify me and frequently does. This is also true if I choose the label retired.

Often, my own blend of chronic illness is too rare (or too common) to warrant a survey but diabetes, hypertension, and cholesterol seem to be current hot topics for surveys.

But my label bias is showing. For me, labels are difficult, a lifelong issue, but I do recognize their importance in providing context.

And although I have not been in contact with anyone else who participates in these surveys, I suspect they, too, find themselves disqualified for their own group of labels.

I don’t want to get worked up about labels, which I am wont to do.

The surveys that I am offered most frequently have to do with gaming videos, although I do not own an Xbox or virtual reality equipment. I’m not into role-playing games, either.

I am, however, fascinated with strategy/puzzle games, mysteries mostly, forcing me to focus on the story’s task at hand. Similar to reading, I am immersed in a story that is not mine. Freely, I admit to this escape.

These games help me find the way through my fog, when my brain is more mush than matter. Now, I have surveys, too–similar but not the same–it is the absence of story that sets the two apart, I think.

Surveys end–happily or no–while at game’s end, these “mysteries” reveal a successful strategy. On some days, that is a better use of my time.

Of course, there are surveys I reject outright but I admit I am most careful with the qualifying questions, if the promised payment is larger. I, too, have my mouse and cheese moments.

Always, the mouse runs the maze for cheese, seeking at least the regular fare but a larger reward is even better. Any extra effort is only a problem when the reward is denied without explanation or is less than promised.

If I value my time in terms of dollars and cents–within this context–I am well on the way to passing our national debt, maybe as soon as the end of next week.

It’s not that I don’t value my time–I do–but in my current frame, these surveys add more than the time they take. Again, it’s context.

No matter how bad a day is for me, physically or emotionally, I find enough brain cells for surveys, not because they are witless but because they help me find the way to mine.

I am not caught up in the ego of discomfort or frustration. Rather, I am in life as it is–with my pain. It sits with me. I sit with it. I learn something.

Every day is not a jackpot, and every day what I want will not fit within my frame but every day, I have my space. It is enough.

Why chase cheese if it is not on the day’s menu?

Aiming for Even…With Wheels

Musing CatEvery post that appears on this blog bears little resemblance to its initial version. In life, there are best laid plans and then there is what happens.

However, this post is different than any previous, not in substance but in laying out a plan, making a commitment. That’s a bit risky for one who lives life from the eye of a storm more often than not.

My roundabout way is beginning to resemble clickbait so here’s my plan: I created another blog, aimforeven.com, featuring short posts–daily doses I call them–on living life with equanimity. It is a sister blog to this one.

I have given this much thought over the past two years but explaining this commitment remains difficult. And Zen Buddhism isn’t much on explaining. But this I know. Aim for Even rests so comfortably in my heart and so anxiously in my head.

There is nothing for it except to begin, as if there were another way.

Aimforeven.com is a number of moments–365–strung together as a series of blog posts in a cumulative year of days, if not consecutive. I’m working with the reality I have and aiming for even.

My view is from within the eye of a health storm that has waxed and waned for the last 384 days, more or less. Waves of impermanence do not count the days coming or going.

For that matter, days are not what they used to be for me, either, but I have not lost track. If anything, I’m more aware of each day’s presence, even if I don’t always get the order correct.

With each wave comes an awareness not yet imagined. It is mine for the viewing, if I will only look.

To sit within the eye of the storm is to witness the surge sweeping away life options while leaving possibilities never considered or usually rejected.

The current storm is swirling around advanced, late-stage osteoarthritis in both my hips. It is early days in this storm but so far autoimmune disease seems subdued, spinal cord weakness waxes and wanes.

It is the storm clouds of degenerative disc disease that thunder, threatening then throwing lightning surges up and down my legs. Within, rage ultimately gives way to stillness.

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It is such an effort to begin again. And I’m tired, really tired.

Within every storm is a sliver of light, and this storm is no different, if I will only look through the life lens. Perhaps it is my fatigue that reveals the world anew this time. I’m never sure what does; I just know it always happens.

Regardless, it takes a while to get used to viewing the forever changed. And there is always some sort of surprise awaiting me.

This time, it is “wheels” to access more of the world around me. Regular errands and daily tasks are easier. I may not have more energy but I am not so tired, either.

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This storm is far from over but I take in the view of what other options await me.

In the past, my mind set sail for Aim for Even only to travel off course or simply shipwreck in one convergence after another of my personal, perfect storm.

What is in one’s mind is not always within the life lens of experience. It has taken me a while to explore the view I have rather than search for the one I want.

Now, aimforeven.com is within my scope, equanimity in daily doses, a steady course through any storm. After all, no storm is without an eye with a view.

No day or dose is ever the same, even if the aim is. An evenness of mind opens not to expectation but to experience. Equanimity knows no enemies.

That is the course for a year of days on aimforeven.com.

Certainly, the posts are a way for me to reconnect with my online life. Just as my “wheels” allow me access to the world surrounding me, blogging connects me to the immediacy of the virtual world. I have missed both.

Join me on aimforeven.com for a year of equanimity. Stop by KM Huber’s blog for longer observations, the usual fare perhaps a bit more regularly. Each blog site features a sidebar link. After all, they sail within sight of one another.
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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.

 

Making Lemonade, the Patient Pause

“What else might this mean?”

Recently, I came across the question in this context: how different the world might be if we asked that question when facing a tense moment, when feeling anger or aggression, whenever there is pain.

To ask the question is to pause, creating a distance from the situation, preventing an immediate and perhaps pointed reaction.

We have given ourselves the opportunity to make the compassionate response.

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Rather than clinging to the pain of the moment, we release it. We are not boxed up in a mindset or limited in our choices. In the compassionate response, we are open to the unimaginable.

We are not relinquishing our beliefs or changing our goals. We are not giving up or accepting less. We are standing in the reality we have, taking a moment to step back and make the choice that suits the moment.

We find ourselves less concerned with identity, the beliefs of “I,” and more concerned, maybe even intrigued, with how we might offer more to many.

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Asking what else might this mean reminds me of a well-worn meme—when life gives you lemons make lemonade— there was a time that I would roll my eyes whenever I was told this, which was rather often.

At some point, and I have no memory of any “aha” moment, I considered what it might mean to experiment with life’s lemons. It is an exercise in patience. In making lemonade, I found curiosity and grew to trust it.

Was I lowering my standards?

These days, I live a routine of no routine, relieved of the stress of tasks assigned to specific times. There is enough freedom so that on the days when life is one lemon after another, lemonade seems more than sufficient. I never know how tart or naturally sweet the lemonade might be.

I sip and stay curious.

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In the last two months, I produced more solid writing than I have in the last year and a half.

Physically, I am markedly different. I am not referring to walking with a cane or wearing a soft neck collar. These are temporary conditions of myelopathy.  Once again, the question of lowering my standards drifted through my ego. That required more than one glass of lemonade.

In short, myelopathy relieved my suffering for I had no choice except to slow down. Myelopathy accomplished what nearly 40 years of autoimmune disease could not. That is the difference.

In slowing down, I gained life anew. I have just begun to consider what this might mean for me.

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Although my pace of life is slow, more measured, it is now possible for me to comfortably complete two or three errands in one outing, something I have not been able to do.

In rest, I find awareness, options never imagined. No longer am I pushing through to the end of a task, exhausting all of my resources.

In exhaustion, I find energy. To me, they are opposite ends of the same spectrum. I aim for even. The day does not dawn to certain tasks, it lights up with curiosity.

Still, there are the daily lemons.

My biceps feel as if there are weights on them; little has changed since the spinal cord surgery. The same is true for the numbness/tingling in my hands, particularly my index fingers and thumbs. They are unpredictable.

I use voice recognition software so that the frustration of typing does not impede the writing. My thumbs and index fingers have difficulty pinching or picking up small objects such as pens or pills, a mushroom slice, coins for the laundry.

Daily, I do dexterity exercises for my fingers and thumbs, a bit of yoga for my arms as well. There is no pushing just gentle flexibility. There is a lot of lemonade as well.

For all those moments when the world rages, as it does for all of us, if I ask, “what else might this mean,” I choose the compassionate response. It is not about having an answer. It is about asking the question.