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?

The Energy of Being in the Moment

I found a way of walking on air with prednisone this past week. It has been more mindful than you might think. And groundlessness was the key.

I would not have suspected that prednisone would provide yet another perspective on Pema Chödrön’s teaching of groundlessness.

In other words, work with the reality I have–be and stay present. Not something I had ever tried with a prednisone increase to reset rather than rejuvenate my body.

Initially, being present seemed counterintuitive. Why not go with the energy and have a few days of doing things like everyone else? Was that not being in the moment?

Not a one of us gets life full-blown forever. No one light shines without going dark. And even if it did, our appreciation would go blind.

Life is never about going back. It turns on a dime. Whether it stays on edge or lands on heads/tails, it is a new tale to tell every turn.

I remembered why I finally turned to meditation as a serious practice. I had no place else to go, nothing else to try. I wanted meditation to be a panacea but nothing is in isolation.

Some days, there is a clarity in meditation for which I have only the experience–no words. Other days, the thought chatter reduces me to tears.

I no longer show up with expectations.

It is the only way to wake up in a dark night of the soul and find a sliver of light. What else is the present moment other than a single sliver, just enough to light the night.

Some days stay all but dark. In this world, to get up in the morning is an act of courage for anyone. Life is not a Pollyanna prance.

What is more frightening than being in the moment? In other words, what I feared most about being in the moment was being in the moment.

But each day is all I ever have. Yesterday is gone, tomorrow a mere maybe. Both are mucky lands of “what if.”

It is only in the present that I settle into groundlessness. No thing and no one stays. The fabric of life–of what we take hold–is its impermanent experience. Maybe that is magic. I don’t know.

I once believed there to be a bit of magic in prednisone. After all, its possibilities seemed endless because energy is just that—endless. But I am finite.

This past week’s increase in prednisone has been unlike any other for me. It did not start out that way.

Old behaviors kicked in immediately. Within hours, I was anywhere but the present, my thoughts spinning with the possibilities of a six-day energy spree.

That kind of energy is so seductive, rather like chocolate. And too much of a good thing is just that. If meditation has taught me anything, it has taught me the power of pause.

I could exhaust myself with energy and at the end of six days, be in worse shape than when I started. Just a mere sliver of light that moment but it seemed a beacon.

That is how mindfulness rolls, a singular sweep of the scene, weaving one moment into another. An undulating tapestry. A web without a weaver.

Working with Myself Rather Than Against

There is no returning to a blog. There is only the next post. I like that about blogging. I’ve always taken it seriously knowing every post requires a degree of vulnerability.

I’ve explored whether to continue this blog, after beginning AimForEven.com (AFE). It seemed there was a connection between this blog and AFE–at least in my mind–so, I let AFE grow into itself and discovered where and how the two blogs intersect.

As for this blog, it was a weekly blog until I had three major surgeries in less than two years, in addition to being chronically ill. I’m still chronically ill but having two “new hips” has dropped my pain level significantly. In response, my energy level has risen, although it remains limited.

Once again, weekly posts seem possible. They may turn out to be bimonthly posts but I’m aiming for weekly, initially. I am calling them the #LongerView, another look at an issue or concept published in an AFE post.

Originally, I hoped to post daily on AFE, and I worked hard at it but soon, I found I was working against myself. The purpose of aim for even is to do just that. It is not a daily grind but working with the energy I have to meet my responsibilities and obligations. It is far more practical to post on weekdays only.

Since July, 2016, I have published 175 posts on AFE. There is a pattern emerging; I believe there is a book in it. I won’t know unless I try, and I’d like your help, if you’re willing. You don’t have to do anything other than what you’ve always done.

Just let me know if there is something you like or would like explored more. I read every comment very carefully. Many times, comments have resulted in blog posts.

The idea of AFE may sound mediocre in a world driven by divisiveness and competitiveness but AFE is far from settling for average or a bit above. There is no settling involved, just the opposite. AFE is living with integrity by learning to live with the reality I have, not the reality I want. It’s eminently practical.

It brought me through these last two years of surgery, illness, and loss. Zen, of course, plays a huge role. Every time I frame my day for the experience that it offers, I accomplish more than I thought possible. Every. Single. Time. That’s what AFE—the book–will explore.

This blog has a steady readership, and I am grateful. For years, you have overwhelmed me with your loyalty and your compassion. Some of you have asked me about writing a book. I tried more than once but I was trying to return to a life I knew both as a writer and as a human being.

But there was no returning, no getting my life back.

Now, I work with the reality I have, often surprised by what I am offered. It requires an evenness of mind–equanimity–curiosity helps me stay open.  A sense of humor allows me compassion. It reminds me joy is available in every moment, if I will just “be” in that moment.

As Toni Morrison said, “I always start out with an idea that becomes a question that I don’t have the answer to.”  Exactly. I aim for even.

 

As My Laundry Lay Drying and Other Tools of the Trade

ER Toy Shirt
Note ER Catnip Toy

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

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

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

I was.

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

Note the Wyoming Flag filling out the State of Florida
Note the Wyoming Flag filling out the State of Florida

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

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

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

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

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

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

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

As I lay drying 0116

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

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

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

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

Rock and Hard place 1014

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

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

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

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

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

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

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

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

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

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

Clean Slate at an Angle
Clean Slate at an Angle

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

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

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

The Holiday Pounce or the Cat is on Steroids

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

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

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

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

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

At Rest 0215

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

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

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

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

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

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

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

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

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

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

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

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

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

It is a game of catnip mouse with declawed paws.

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

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

Happy holidays. You are all points of light.

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.

Sparkling Waverly 1013

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.”

Wyoming rock face 0413

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.

High Tide St Marks 0214

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.