Tag Archives: Spoonie

No Expectations, Just Experience

Maybe I always believed in “bursting the boundaries.” After 40 years of chronic illness, it seems so. This kind of “resistance” to medical expectations takes a certain amount of naïveté, and I don’t mind admitting that.

It also means staying in the moment, regardless of the experience it offers–no expectations, just experience. And sometimes, I burst a boundary, like today.

I have been released from the care of my orthopedic surgeon who could not be more pleased with my progress. The fracture of my right femur is healing “beautifully” and growing new bone. The hip-joint replacement was pronounced “perfect.”

Medical expectations had been low.

I knew today’s x-ray results would be fine because of how my right hip and femur feel. And the x-rays supported my body’s signals. X-ray is such a wonderful way to look within the body to its structure.

I was reminded of the fusion of bone that is taking place in my neck, even more bone growth. That was not the expectation, either.

As someone with chronic autoimmune disease, I’m not the best candidate for healing, especially with medications like prednisone and methotrexate. Medical skepticism is not unwarranted.

I don’t ignore expectation but it does not occupy my time.

My focus is on what I eat and how I live, in particular my daily practice of meditation and yoga. I stay open to my body’s signals; they are my purpose. Healing will or will not occur.

It is a matter of feeding my body nutrient dense food no matter how I am feeling. In fact, the worse I feel, the more critical nutrition is. A single moment might be one of physical pain, frustration, hopelessness, fear, and fatigue—and it might last days—eating is fuel, food is energy.

Hope drifts in and out of moments. I let it go. I remain present for my pain, intertwining medication with yoga, working with the meditative state in my day-to-day. I meet my energy and even out its fluctuations.

What is the point in yearning for what my body cannot offer? Why not work with what it can? After all, “life always bursts the boundaries of formulas” (Antoine de Saint-Exupéry).

So it seems, so it seems.

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

A Slow Fusion Is Better Than None

No matter the purpose of my appointment with the neurosurgeon, the conversation always comes down to autoimmune disease. Today’s visit was no different.

This is the same neurosurgeon’s office that–a few weeks ago–rescheduled my appointment without telling me. Beyond that, there was an additional conversation about another scheduling error.

However, we all showed up today at the same time, same place.

As I strolled through the door with my walker, I was greeted as if I were an old friend. Doors were opened for me; lots of chatting ensued.

By the time I saw the neurosurgeon, my volume was on voluble. This was my annual appointment regarding my C2-C4 neck fusion. Only screws and a metal plate are holding the donor bone in place. There has been no fusion.

Until today. What looks like a bit of a blur on an x-ray turned out to be the beginning of healing. It’s slow but it is happening.

“Is my body just slow?” I asked her. The surgery was two years ago.

“Yes. It’s the autoimmune disease, the biologic, and the steroids. They slow down the healing.”

This is always her response. She’s not wrong. The chronic disease process and the medication that limits its effects also limit the fusion process.

I’ve struggled with this since the initial surgery that released my pinched spinal cord. It kept me from becoming a quadriplegic. Methotrexate and prednisone make it possible for me to write every day AND perform my activities of daily living. They give me a life.

The neurosurgeon and I have had long, usually thoughtful–sometimes lively–conversations concerning this obstacle that is my path. We both know that stopping the medication does not guarantee the fusion process will continue, much less speed up.

The war within my body—autoimmune disease—will go on whether I stop the medication or not. I will just know its effects more readily if I reduce my troops.

This is the rock and hard spot that is my path but it is not without a sliver of light. That I am healing means more than a blur on an x-ray. Full fusion is not guaranteed but now, it is a possibility.

Consistency in diet, yoga, and meditation have had an effect. None is a quick fix; all are a lifetime practice. For now, the practice includes methotrexate and prednisone.

I work with the reality I have, and in this moment, it is a sliver of light.

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

“Poem” Pause: Being By a Cat

Nothing grounds me like a poem. Nothing. It brings me to life right where I am. Crossing the gulf of today’s #DailyDose is not a task too tall. It is paw by paw focus.

as the cat
climbed over
the top of

the jamcloset
first the right

then the hind
stepped down 

into the pit of
the empty

(William Carlos Williams, “Poem”)

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

A Congress of Old–and Getting Older–White Men

This morning, I “celebrate” the latest GOP idea about healthcare with gluten-free, chocolate chip cookies dipped in unsweetened almond milk. Yes, I know. It is this kind of decision-making and behavior that leads to pre-existing conditions.

Gluten-free or no, what is involved here is sugar, even in unsweetened almond milk, which also contains very few almonds. I just like how it tastes. It is this lack of judgment that has characterized my life. And that is an unforgivable pre-existing condition.

So be it. As a Facebook friend pointed out, being a woman is considered a pre-existing condition by most of the old–and getting older–white men in our current Congress.

Mysteriously, male members have no pre-existing conditions or if they do, those conditions are covered. Just to be safe, Congress has excluded its healthcare system from its citizens.

How can one group of pre-existing conditions be acceptable and another not? That is such dangerous thinking. Human beings evolve. That is the life experience; it is why we are here.

We make disastrous choices–witness our current Congress–then, we learn, often soaring above original intention but not always, witness our current Congress.

If I had consumed less sugar and fewer grains, including gluten-free, would I not have a pre-existing condition? How could that ever be known? There are too many variables. It can be surmised, suggested but it cannot be known absolutely.

Medicine is a science and it evolves. As it learns, it changes. What was once an accepted practice is sometimes discarded altogether. “When we know better, we do better” (Maya Angelou).

It concerns me to come across conversations about pre-existing conditions that carry fault versus those that do not. It is buying into the mindset of exclusion, witness our current Congress. It is a scramble to safety not designed for everyone.

We do not come from the same mold nor should we. We are not here to be clones of one another. We are one for all and all for one.

Human beings need loyalty. It does not necessarily

produce happiness, and can even be painful, but we all require

devotion to something more than

ourselves for our lives to be endurable.

Atul Gawande

Be careful what you wish, old–and getting older–white men.

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

As Long As There Is Light

For me, mindfulness is the source of infinite possibilities. In mining the details of the present, I set up my options for the future. Yet, nothing stays, even in stone.

I like the fluidity of the present but the past is immutable. Once, I spent a lot of time there but rarely do I visit now, which does not keep my mind from offering.

Memory after memory rolls by; action captured as still life. Mindfulness through a philosophical perspective.

However, my reality on this day is anything but abstract. My physical pain is beyond the distraction level, and it shows no sign of abating.

Recent lab report results support the presence of increased inflammation and the ever-present chronic anemia.

I don’t usually post on such a day but working with the reality I have–every day–is the purpose of Aim For Even (AFE).

For decades, I lost days and jobs trying to rest so that the days to come would be better. Sometimes, that took months or even years. In chronic illness, rest is elusive. The body is at war. Mine is fighting itself and has been for four decades.

Some seven years ago I began working with my day-to-day reality rather than discarding a day because I could not meet expectations. I immersed myself in the experience of being chronically ill–“sat with it” through hours of mindful meditation.

It is a practice I never left.

I try to bring an evenness of mind into the experience of my day. It requires an ongoing adjustment of my energy. It means I must stay present, no matter what. That’s AFE.

I am old and have not aged well. And yes, that once swallowed hard. I no longer look at my face in terms of how it may be filtered but as is. There is still light in my eyes.

I want to live the rest of my life a #DailyDose at a time, preferably with equanimity. I fail on so many days. Still, I immerse myself completely into any activity–even the most mundane—it is how I learn another way, find a new option, or my perspective broadens.

In equanimity, there is space for signals from both body and mind. I am not transcending either one but sitting with both. I know my pain level will change— life is impermanent— I choose not to attach to that pain nor do I avoid its presence.

I make room for it. Rather than rising and falling with the peaks and valleys of pain, I meet it at its base. Impermanence will do the rest.

In some ways, change has lost its edge for me, not that I don’t give it respect. I do. I don’t fear it. Indeed, in my more philosophical moments, I wonder why I ever did.

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

Escape: a Hefty Boomerang

When in the slough of despond, I know a miracle is possible any moment. I am not ascribing “divine agency” to miracle but rather the act of being completely present. For me, it is the only way through dark moments.

Miracle is not a warm, fuzzy moment and voila! All is right with the world. That is escape, and a hefty boomerang it is, ever returning me to the place I am. Every. Single. Time.

Gabrielle Bernstein says just acknowledging a “gentler, more peaceful way” is “the moment we welcome a miracle.” We find the universal in the specific, such as a sea oat bending to the breeze, every breeze.

Does the sea oat ever hesitate, consider not bending?

Openness is like the wind.

If you open your doors and windows,

it is bound to come in.

(Chogyam Trunpa)

It is true the air in my life has grown stale, and like the sea oat, I must nod to a new wind. It is in all’s best interest. This, the sea oat never questions.

Like water flowing through rock, patience must be my practice if I am to experience the miracle.

Water gives life to the 10,000 things and does not strive…

(Tao Te Ching, Verse Eight)

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.

Either Way, It’s Rain

Now is a dark night of the soul for me. It has been for a while but I have not sat with the darkness as I do now. It is all around me, mine to explore. Darkness always holds a sliver of light, elusive as it may seem to be.

Experience tells me that, and I trust it.

At best, the days are foggy, my mind muddled. Desperately, I grab at this phrase or that word, although none seem right. It is only when I stop grasping that words appear.

I have no idea if they are what I first wanted but in this moment, want takes a backseat to need. Unsurprisingly, that is comfortable, even comforting.

Meditation allows me to sit with despair; yoga keeps my body from stiffening into it. Like having one mindset, the body comes to prefer the position that is comfortable.

To invite stasis is to stay in darkness without ever exploring it. That is a hard, hard rain. Stasis is not the experience I seek.

As I have written many times, chronic illness is a great teacher. It offers a variety of lesson plans, not the least of which is learning to “crumble,” to surrender myself for one that is yet to be.

Such a shedding takes time, if I am to learn from life changing. At 65, or nearly so, I prefer learning, no matter what it requires ultimately. It is a far, far gentler rain.

Aim for Even posts offer equanimity a dose at a time. No day or dose is ever the same, even if the aim is. You may read about the origins of Aim for Even here or on this site’s About page.