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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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.

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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.

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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.

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When the Bottom Falls Through

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.

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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.

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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.

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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.

KMHuberImage; St. Mark's Wildlife Refuge; Florida; USA

 

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.

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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.

KMHuberImage

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.

Bits and Pieces: The Reality We Have

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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.

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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

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The Expedition of No Return

“You are one injury away from becoming a quadriplegic.”

“Now, you are not pregnant, right?”

Both of these sentences are great openers for blog posts. Certainly, each could be its own blog post. Yet, these two statements reveal the range of emotion as well as the kinds of obstacles that marked my recent health expedition.

In my last post, I referred to my mind-body expedition as the exploration of the two as one, a single continent. I knew I did not have a map, not that I am one for maps. They are so…directional.

This was not that kind of expedition. That, I also knew. And it turned out I was correct. The number of detours/new routes still stun me. I am not returned from the expedition–not really–for I am no longer the person who left.

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With detours, direction constantly changes. Consider the issue of my being pregnant, at the age of almost 63. “Almost” is the operative word. Neither the fact that I have a uterus and have not had a tubal ligation would have been questioned if I had been 63, as I will be a month from today.

The pregnancy test was a pre-op procedure requirement. The morning of my spinal cord surgery I was informed the test showed lightly pregnant, whatever that may mean. Another test was required, which showed negative.

I could not have waited any longer for the surgery. The statement regarding quadriplegia was no exaggeration. My spinal cord was pinched at the C3-4, C4-5 vertebrae in my neck. Each day, the deterioration in all of my limbs increased.

This was no detour but an entirely new route, and a life-changing one at that. There are no maps for life-changing events for the route chosen is, ultimately, the new life to be lived.

Yet, there is order in chaos, always has been. I think it is Buddha nature, the permanence in impermanence. Life plays out against this backdrop of constancy where all is ever in balance. It allows us to meet the chaos of our present and then, to let it go.

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Returning to the land of traditional medicine was full of detours/potholes/obstacles too numerous to mention but too many ever to forget. But this is not a post about traditional medicine. That is for another day.

This is a post about meeting life anew. I am not what I was, which was its own kind of strength. Now, I am the mind-body I create. That is the test of strength I face.

Strength, as Brenda Shaughnessy writes, is to “acknowledge each…feeling, question, and idea in faith and terror, a meeting that comes with the full force of your heart.”

I do my best to keep my heart over my head as I make decisions. I suspect that may be why I woke up from my surgery “happy.” Truly. A friend said I was beaming. It felt then and now like new life.

It is early days yet as the cervical myelopathy surgery was July 6. Essentially, I had surgery to decompress my spinal cord. The surgery involved removing two discs, replacing the discs with bone and then fusing the two with a plate and screws. The cause was not lupus but degenerative disc disease, first diagnosed in 2000.

The surgery is to keep more damage from happening. It is not a surgery to recover sensation. That said, 70% report some improvement. I am glad to be among those who see consistent improvement.

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Before the surgery, my gait was like a Frankenstein, drunken stagger. I had to have a surface to touch to be able to walk at all. Now, my gait is almost normal, if I use a walker.

A cane will steady me, and in my apartment, I practice putting one foot in front of the other, literally. There is progress every day.  My gait is the best it has been in months.

I have returned to using voice recognition software for typing is still too frustrating. The numbness/tingling/grittiness in my hands and thumbs remains but is decreasing. I am able to grasp and hold onto objects with more than reasonable assurance.Every Day 0215

This is a new life, an unknown, part of the chaos of being alive. And in the background is the permanence of impermanence.

The generosity and support of online and off-line friends has been like winning the lottery. I do not purchase lottery tickets and now, there is no need. I already won.

My refrigerator was always full, rides were available wherever I needed to go, and friends waited with me for hours and hours as we made our way through the medical maze. Online messages of support appeared daily.

I have read and reread the comments of the two preceding posts. Just know each word is its own bit of light, day or night, and I carried your words with me then and now.

I am not who I was when I began this expedition. It could be as long as a year before I know how full my recovery will be. There is no returning to what was nor should there be. I have a better idea of my mind-body continent. I will begin there.

Early on in the expedition, I was given these words for my journey. I have kept them with me in all moments, and before every morning’s meditation, I look at the Chinese characters:

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“Be patient and endure while

The wind will calm, the waves subside

Draw back a step and realize

The boundless ocean, the vastness of heaven”

And so I do.