The Last Roller Coaster Ride

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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.

 

On Expedition….

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It is time for me to explore the latest results of impermanence–physically and emotionally–so there will be a pause in posts. It really is an expedition, of sorts, this exploration of my mind and body as one.

The two are a single continent now, although once I saw them as separate countries, accessible only at certain times and tides.

What you are is what you have been.

What you’ll be is what you do now.

Buddha

So, my expedition begins.

(Regular posts will resume May 31)

(Delays and obstacles abound so June is now my anticipated return)

(And in July came the greatest challenge of all. I met it with all I had, and it proved to be enough)

(Blog post is on the July horizon)

The Highest Good: No Fight, No Blame

Without a fight, there is no blame. This basic truth can be found in the Tao te Ching—no fight: no blame—as well as in the major texts of many spiritual traditions. Blame seems that integral to the human experience.

In last week’s post I chose the phrase aflame with blame as a reference to its incendiary nature. It is quick to flame, this blame, although it is not a trait with any substance.

Whatever person or event we blame is not what causes us to suffer (Byron Katie). Blame is a distraction, and it is easy to get caught up in its mindset.

We suffer when we hold onto a mindset; in a blind stance, we dig in for a last stand. Mindset is a misguided attempt to avoid the inevitable.

Nothing ever goes away until it teaches us

what we need to know

Pema Chödrön

 Turtle Row in fall 1013

It would be hard, maybe impossible, to provide an example of a life experience that does not teach us for in every moment there is something to be learned. At a certain point in life, each of us becomes aware that what breaks us open is what we need to make us whole again.

It is how we learn. It is hard to accept, at least for me.

But time and again, I have realized this one lesson: when I open myself to learning rather than blaming and struggling against, I find the highest good in any situation. The flames of blame and the smoke of striving fade away.

Often, I turn to the teachings of the Tao (in translation) for I treasure its basic truths. Such reflections soothe and instruct every time I return. I am refreshed.

Water gives life to the ten thousand things and does not strive

(Tao, Verse 8)

And like water, the highest good is life-giving, “flowing in places men reject and so is like the Tao”  (Verse 8). All we need to remember is that water will flow—even through rock–rather than reject the route.

The highest good never rejects us, either, even when we do our best to shape what will not be shaped. There is no blame, no fight, no mindset.

Chronic illness is my greatest teacher, as I have mentioned many times. Even in my more difficult moments, I am more aligned with learning than striving, which is not to say I do not have some fiery moments of blame throwing. They are not as frequent.

I find it easier to recognize and to dismantle a mindset, and to do it with self-care and love. After all, a mindset deflates quickly for it is only made of air. And once I breathe it in, I can breathe it out.

Mindset is only a thought no matter how often it may appear. In my experience, mindsets return for they have unimaginable power IF they are allowed to attach and become unassailable belief.

We can learn from observing a mindset if we let it go for what it is. That is the way to keep learning rather than to continue struggling. I find hope in impermanence no matter how many times I meet similar situations. It makes the highest good in any situation seem not only possible but realistic.

We are more like water, wanting life for all and strife for no one. It is ours to flow, like water through rock if we must, open to the ten thousand things and like the Tao rejecting none.

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Unplugged to Get Rewired

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This image is of EmmaRose in her favorite place—in her plush and if necessary, heated bed–practicing her favorite pastime. If you live with a feline, you are constantly reminded how integral sleep is to life.

It is the way sentient beings unplug and get rewired, which is what EmmaRose and I have been doing for almost a fortnight. It is her daily way to unplug regularly.

I am, however, a slow learner yet I have another constant teacher, just as dedicated—autoimmune disease, lupus in particular and in a lesser role, Sjogren’s syndrome.  This is my sea to sail.

Not too long ago, I wrote a post about not unplugging, not ever coming to shore. I believed I could bully my way through any tempest—I was that kind of sailor–but that is not the law of the sea nor is it true self care. It is dangerous sailing, selfish and thoughtless.

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Self care is never a selfish act—it is simply good stewardship

of the only gift I have,

the gift I was put on earth to offer others.

Parker Palmer

Good stewardship requires a daily course adjustment of how to offer my gift without the dualistic thinking of there is only one way. Dualism exacts quite a price for in choosing one way, another way is excluded. Better to steer between the two for balance. They are within the same sea, co-existing with one another.

I was reminded of the inherent imbalance in dualistic thinking as I came across a lively Facebook group discussion on healthcare, specifically alternative versus traditional medicine. Here healthcare is a civil war with both groups firmly entrenched in their respective camps.

There is no one and only one way to health for all but for each of us there is a way to our best health. It may be a balance of both camps or it may lie more within traditional rather than alternative medicine or vice versa.

But without the benefit of learning what each camp offers, there is no balanced approach to one’s best health. In balance is wholeness and without it, we are aflame with blame. Our essence is diminished.

I do not haunt these discussion healthcare boards as I once did but I am reminded of my own imbalance in my approach to my best health. I am fortunate in having experienced the benefits of both camps but I do not know that I have expressed that in a broader perspective.

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And while my preference for traditional Chinese medicine (TCM) remains the course I steer, it is not without the benefits of traditional medicine. For traditional medicine continues to teach me about the western perspective on autoimmune disease. In turn, that perspective broadens my TCM options.

Wholehearted living is not a onetime choice.

It is a process. In fact, I believe it

is the journey of a lifetime.

Brene Brown

Good stewardship just may the journey of a lifetime, easy to drift off course or become becalmed. And then, there are the storms of life, much like the one I am in now, tossed about, swamped from time to time, but not run aground or sunk.

Some who read this blog also know chronic illness. We sail a similar sea as we chart our course anew for storm or to catch the wind for full sail. When we dock for a rest, we learn from our days at sea. We share our catch.

We know what we offer is the best we have to give, and that it only lasts a short time. We also know the impermanence of the sea requires we open our sails to the wind when and as it is given, and when it is denied to rest with a steady hand on the tiller.

Here are some of my favorite resources: Toni Bernhard’s How to Be Sick seems a guide for any storm as is Jan Chozen Bays, M.D.’s Mindful Eating. And through every storm I practice meditation and a gentle yoga flow.

Till we meet again.

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Upon Closer Reflection, Comfort in Chaos

Last week, I wrote of finding balance and the ongoing shifting of left and right until balance arrives of its own accord. Osho refers to this as a “graceful” shifting, which for me it has never been.

Rather, it has been a struggle, one worth taking on but very like sitting in a cave of chaos. I have not found grace there—not yet—but I discovered comfort, thanks to reader comments on last week’s post.

Comfort comes from accepting that balance is in constant motion. It is impermanent. When I start to squirm, I know I have shifted too far one way. It is time to let go and begin to swing back.

Balance is not identifying with left or right because in balance, I am both. Standing in the middle of a moment is mindful, and I have all the time I need.

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I experience moments I wish would stay forever. There are others I am convinced will never leave but being alive is being in motion as no moment ever stays. Life touches us—painfully, indescribably, unbelievably–myriad experiences ever in motion.

It’s chaotic. And it seems I have found comfort in that.

The reason everything looks beautiful is
because it is out of balance,
but its background is always in perfect harmony.

This is how everything exists
in the realm of Buddha nature, losing its balance
against a background of perfect balance.

~Shunryu Suzuki~

In looking at past posts, variations of the Suzuki quote appear in one form or another at least annually, sometimes more. Yet, this year is different. Why? I have a physical sense of balance.

Regular readers know I recently explored northern Florida with a dear friend. We covered over 500 miles in four days, which for a person with lupus is too much sustained activity. I am grateful for every moment, and yes, I was exhausted.

I am used to the routine of resting that usually follows such an outing. I  break from life, including blogging and writing. I shift from full days of activity to days of complete inactivity. Always, that has been the way.

Not. This. Time.

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I do not remember consciously thinking of Suzuki’s “perfect balance of existence” but it seems my subconscious decided to trust it. I shifted my resources, not gracefully but gradually, with a certain awareness of the ever-changing balance in each moment.

Oh, there were moments of despair but they were brief, not worthy of support. I could not rouse myself to give in, give up, and wait. There was no life in that.

Rather, I immersed myself in each day, looking to the balance available to me. I communicated with my pain—sensing its signals—without struggling but with shifting.

When I went to my acupuncture appointment, my meridians overflowed with energy. An acupuncture point full of Qi (energy) signals stagnation; the needle is the stimulation to release it.

Point after point, Dr. Gold’s needles provided relief. I did not want that treatment to end–the release was that deep and that immediate. When I arrived, my overall pain level was a solid 8, my knees a 10. The treatment reduced my overall pain to a 3; in some locations, the pain was gone.

Resting came easier as did my sleep. My level of body energy, no longer trapped, shifted to the daily balance available. The body is graceful when allowed to do its work in its own way.

Acupuncture opened me to trusting the chaotic nature of balance. It is not the nature of balance or mine to stagnate. Ours is to be in the constant chaos.

My readers’ comments opened me to just how exceptional that is. Thank you, dear readers.

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Releasing the Fragrance of Forgiveness

Lately, I have been writing about transformation, in particular the changes I am experiencing with my health. And this week, there is even better news. For the first time, my acupuncture physician felt all of my pulse points. For me, that is huge—to say it is remarkable is not an exaggeration.

It indicates more movement than stagnation. It is as if a way of life, a mindset, is dissolving, breaking up. There is still some stagnation but the decline is being reversed as my cell structure changes in my body’s attempt to balance itself.

Transformation offers what has never been. If not a new body, literally, then a body and a being “falling in love with life, again” as reader Val Boyko so generously offered in the comments on last week’s post.

That more life is pulsing through me accounts for my increased energy level; also, it seems accurate to say—now–that my pain level is also in decline, albeit a slow one.

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Transformation occurs in its own time—patience is essential–but the benefits are life-changing, literally. I find I am more present in each moment. I do not want to miss any of the unfolding of any day so I am less likely to pay attention to mindset. There is so much new to explore.

Still, the mind prefers calling up the tried and true of old, a series of steps followed again and again until they are, well, set, as if in concrete. Mindsets are the known, limited in effect and thus, predictable, perhaps even stagnant.

Yet, I do not believe that a mindset is without its worth. Not at all. Rather, it is our own bank of experience. Mindset makes us who we are.

Mindset is what we bring to the moment we meet transformation. Then, we have a choice: same-old, same-old secure or the unknown of transformation.

“Patience, grasshopper” is a line I have met many times these last months yet sit I did and do still. My impatience is less for I found that in being patient, one finds forgiveness, the ability to let go of the debt that accrues from all regret. It is the way to open one’s heart to all.

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Not a Violet but a Petal

Not surprisingly, I returned to a favorite quote. Forgiveness is the “fragrance that the violet sheds on the heel that has crushed it.” Though often attributed to Mark Twain (since the 1970s), it seems its present form is a compilation of phrases from centuries past.

No doubt the thought stays with us for forgiveness is such a struggle for humans.

There is a firm delicacy in a violet petal forgiving the heel that crushes the life out of it. Soon, the fragrance dissipates but it lingers just longer than life. That is forgiving the debt.

The fragrance reminds that in forgiveness we are transformed–a mindset shattered for what is yet to come with no regret of what has been.

Transformation requires we accept every step we have ever taken; it requires we acknowledge every action or decision, given or received. None can be undone. All steps are ours to own, to accept, and to release.

As always, forgiveness—a journey deep and often dark—begins within us. We cannot offer to others what we do not give to ourselves. In the moment we accept all that we have been, we release the fragrance of forgiveness.

We focus not on what crushes us but on what releases us.

Losing a Mind-Set and Gaining a Life

My first post for 2014 considered aim for even as a way to live. I saw it something like this: in every experience I give what I am able to give, mindful that no two occurrences are the same no matter how similar they seem.

Remembering that uniqueness is not easy but is key to maintaining my balance. If I offer more than I am able to give or if I give less than is possible, I miss my mark.

In 2014, I aimed high and low aplenty but by year’s end I found myself more and more in the middle—in balance, even—as I let go of a  mind-set that skewed my aim.

Letting go meant giving up tried and true ways that comforted—at times even protected me—from the chronic pain inherent in my life. The subconscious is not easily dissuaded for it has had a lifetime to fine tune what comforts in order to cope. It’s its own infinite loop.

It would take me most of 2014 to break out of this mind-set. I wrote about it—a lot—on this blog.

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In “The Winds of Change,” I believed I was slowly but surely losing my ability to walk. My response was I would adapt, like always. After all, I have an active online life and a great picture window with a view of the woods.

By September, “Some Awareness My Way Came”  in the form of spinal and cognitive issues. Yet, I would need another warning from my body that old ways would no longer serve. My kidneys sent a short but clear message.

“Only in Expanding My Cone of Habit” did I begin to dismantle the mind-set that had comforted me for decades. I turned to traditional Chinese medicine believing I had nothing left to lose. As I would discover, I had a lot to lose.

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Transformation leaves behind habits of a life lived. There is no “getting my life back.” Life anew is an accumulation of every misstep, every revelation I experience. The stuff of transformation is recognizing that the great teachers in one’s life have always been there.

One of mine is chronic pain. Our relationship has changed completely. I no longer need to cope because I no longer fear pain, emotional or physical. I no longer fear pain spiraling out of control. Rather, I sit with my emotions as my body sends sensations.

I aim for even.

My transformation is far from complete but the changes I am experiencing I cannot explain other than through my new relationship with pain. I walk–slowly–without any limp and am just beginning to take short—really short—walks.

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Every day, and I mean EVERY day, I have a level of energy, something I lost decades ago. On the same day, I can complete errands, do some housework, and write–if necessary. Nine months ago, I thought I would live from my adjustable bed.

The pain is not gone but the mind-set is. There is no seeking comfort to mask the pain. Rather, there is the slow movement of yoga and the stillness of meditation, the balance of acupuncture. And there is food that fuels the biological changes taking place in my body rather than inflaming it.

Every day, I aim for even.

As I was writing this post, I kept trying to find ways to impart what aim for even might look like separate from chronic illness. August McLaughlin seemed to read my mind when she posted this graphic in her wonderful blog post.

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She captures aim for even beautifully. In giving what we are able to give, no more and no less, we resolve to live life as the ebb and flow that it is. We keep ourselves afloat.