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?

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.

 

The Zen of Sexuality

It’s been months since I have posted but I have not been inactive online, especially on Aim for Even.

My absence from this blog has been a time of change, of empowerment. And yes, that has meant a number of challenges.

Some of them seem to have an extended moment of existence. 😉

I continue to recover from two hip-joint replacement surgeries (one includes a fracture). Increasingly, I am active in #TheResistance; I’ve even had an essay published in an anthology.

The pain America is experiencing has parallels with chronic illness. After all, this country has ignored so much for so long. But that is a post for another day, in a week or two. 🙂

Today’s post celebrates August McLaughlin’s Beauty of a Woman Blog Fest, one of my favorite annual events. I believe this is my third year of participating.boaw-17

Always, there are two categories, both requiring thoughtful discussion of beauty. There is the “original” beauty category and its array of possibilities. The second is Girl Boner®—my choice this year–specifically the Zen of sexuality, à la Girl Boner® radio podcasts.

I am a regular listener of these podcasts and have been since 2014. GB radio is “where good girls go for sexual empowerment,” and that is just the voyage in, “a movement in the making” as August has described it.

Imagine a world that does not look askance at sexuality or even asexuality but accepts that sexuality is not only part of being human, it is an essential part of the human experience. That is the world of Girl Boner® podcasts.

In Zen, we are here to experience what it is to be alive in the physical dimension–all that may encompass, including our sexuality.

Embracing our sexuality is essential

for embracing our full selves.

August McLaughlin

I hear that awareness and compassion in every GB radio podcast. Our innate sexuality is how we identify. For me that means lesbian and cis-gender female. There are others who identify similarly and many who do not.

I think it is as Joyce Carol Oates wrote, “We are linked by blood, and blood is memory without language.” Sexuality is such memory, without language but never without inner knowledge.

In Zen, we open ourselves to all we meet— we open our doors with equanimity— so that we experience all that life reveals to us. Girl Boner® is a way to fully appreciate the sexuality of our own human experience. As well, it teaches us to embrace the experience we do not know.

There are few true resources for the transgendered population as well as those who are not cis-gender. The same is true for those who are asexual.

Girl Boner® broadens the scope of our understanding of the sexuality of being human. Truly, the work of August McLaughlin and Girl Boner® is a celebration of the Sam Levenson poem for which the BOAW Blog Fest is named:

People, even more than things,

have to be restored, renewed, revived,

reclaimed, and redeemed; Never throw out anybody.

Sam Levenson

No one. Not ever. Namaste.

This post is part of the Beauty of a Woman BlogFest VI! To read more entries, and potentially win a fun prize, visit the fest page on August McLaughlin’s site between today and 11pm PST March 11th.

Sitting Silence

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.  watching 0314

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. Emma meditating 0313

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.

In her sun 0413

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.  

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.

Meditative Morning 1114

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.

Wheels 0716

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.
Sun and Sand 1013

 

Looking Through the Lens of Limitation

Looking within 0213For 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.

The Pause of Life 101313

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.

Sparkling Waverly 1013

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.

High Tide St Marks 0214