Tag Archives: autoimmune disease

Sometimes, There Is No Translation

Some time ago, I wrote that the #DailyDose—of energy–does not necessarily mean a daily post. It is the vibration of chronic illness that determines whether writing happens or not. I aim to meet the daily rhythm of the energy; that is the heart of Aim for Even.

For nearly two weeks, there has been no writing but there has been meditation and yoga. As well, a limited social media presence. The fluidity of chronic illness floats on the gift of time—always—yet this recent flare-up of autoimmune and spinal cord disease was unlike the others.

The severity of it surprised me but at the same time intrigued. Some days it was as if time seemed stilled. On other days, it was as if there was no time at all. The days passed that fast.

Alan Watts tells an anecdote about translating Zen stories into English. The Zen master sees no need for it because Zen can be found in any book be it “the Bible, Alice in Wonderland, or even the dictionary.”

In other words, “the sound of rain needs no translation” (Alan Watts).

In my recent flare-up, I found an energy I never knew existed. I discovered it when my fatigue kept me all but bedridden for a few days. All I could do was focus on the moment I had, and what else is the meditative state?

It was as if I became an observer–a witness–rather than a participant in my chronic illness. It was not some kind of out of body experience but just the opposite. I have never been more aware of being in my body because I was not participating in the drama of my mind.

I am not cured but I am changed. I have heard the sound of rain. In fact, one morning as I began meditating, it did rain.

I practice mindfulness meditation with my eyes open and focused on the breath. In that moment, I was the rain, sitting “in the seat of self” witnessing what it is to be alive. It is more than enough, so much more.

In the book, The Untethered Soul, Michael A. Singer showed me how to deal with the drama of my mind as my body works so hard to win the war within. Here, winning is adapting, accepting change. It is not a competition.

As an observer, rather than a participant in my ego’s drama, my body has an easier time of doing what it does best—adapting. My symptoms continue but I remain distant from the drama.

I am the witness watching. And that is making all the difference.

Be serene in the oneness of things and

erroneous views will

disappear by themselves.

(Seng-Ts’an).

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.

Forever But Not Forever

Monica de la Torre says, “The sky’s changeups are reminders that this will not drag on forever.” I never thought of the sky as an ongoing image of impermanence but, of course, it is. All I need to do is look up.

It’s rather like binge watching The Man in the High Castle or The Handmaid’s Tale. It takes me out of me to other times similar but not the same. Each story is its own ending.

So, forever but not forever.

In this moment, I am awash in autoimmune disease. Why not look to the sky? An in-the-moment reminder that no thing and no moment ever stays keeps me focused not on what swirls inside me but on what whirls above.

It is worth the walk outside just to watch the world in the sky go by.

Forever but not forever.

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.

Its Own Kind of Joy

Often, I write of looking through the life lens of chronic illness. It is the experience I have, the reality I know. Sometimes, it breaks me open, and that is not a bad thing.

Letting go of what is already slipping away

is how we actually enjoy our life

Lewis Richmond 

“Enjoying life” may not seem an apt phrase when writing of chronic illness but in release there is relief. And that is its own kind of joy.

Zen teaches me that peace is available in every moment. It is up to me to settle into the series of signals I know as pain. Through meditation and yoga, curiosity edges out fear.compassion-102016

These low-energy days of a single spark are more productive than not. There is rest in this reflection. In stillness, the body softens, rather than struggling to satisfy.

There is no loss in what slips away on days such as these. It was never mine to keep, just to experience. I am given a new life lens. It, too, is its own kind of joy.

I no longer sip from a half-full glass or even become a lake. Mine is to become the oceans, to be ever at sea, stopping only by land when I have the legs for it.

And someday to be free of land and sea.

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.

Kinds of Love

It is a crisp, North Florida morning, a sunshine bright 33°, although the day may warm to the high 60s.

What warms the heart will eventually warm the body is my energy mantra.

I dress in layers for this is not a day that favors autoimmune disease, anemia, or arthritis. It is a day for reading–and surfing the Internet–which often brings to mind works once read.

the-blossom-0814This morning, it is a Tolstoy quote that takes me to other days:  

If it is true that there are as many minds as there are heads,

then there are as many kinds of love as there are hearts.

It is the phrase “kinds of love” that reminds me of a 1989 May Sarton novel of the same title. The novel details a year of life in Willard, a small New England town; it centers around four, aging characters who offer the love they have. Of course, it is not always the kind of love wanted.

It is difficult that one, accepting the love given. As Mignon McLaughlin reminds, “It is the hardest-learned lesson.” But when we do accept love as it is given, there is no higher. It is pure in its offering and in its acceptance.

It is a kind of love that remains rare. Perhaps the why and how of that is among those questions Mary Oliver asks of her roses.  

What are the kinds of love? Or is there only one kind? If we could just reach into reality and touch it, hold it in our heart, like the rose being a rose.

Surely, there is no higher love.

Aim for Even posts offer equanimity in daily doses. 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.

Perfect Storm: My Energy for the Day

Physically, this is a perfect storm day for me. My spinal cord and autoimmune disease are merging into my version of a category one hurricane. I predict it will not become a category five.

After 40 years, my forecasts are fairly reliable.

How I engage this powerful energy determines the life of the storm. There is no destroying chronic illness but there are ways to extract its energy.

My immune system is stuck in on–fight mode–so infections are rare but joint pain, fatigue, and anemia are chronic. Spinal cord disease affects my limbs.

Together, they have taught me to appreciate the daily doses of energy available.

As they are teachers, they require attendance and attention. Always, there are daily lessons. No day begins without meditation, the mind-body’s way of becoming completely present both within and outside the body.

perfect-storm-091916

I practice mindfulness meditation–“sitting” with sensations—immersing myself in their rising and detaching as they subside. I do not meditate to escape.

A gentle yoga practice works with the signals my body sends, in particular pain. Meditation strips away the fear and anxiety surrounding pain, leaving pure energy; in yoga, the breath softens the signals into a solitary, vibrant flow.

Both meditation and yoga open me to the experience that is this day and this day alone. Tomorrow is, well…tomorrow. What they have in common is love, the energy that animates our being.

The only meaningful thing we can offer one another is love.

Not advice, not questions about our choices,

not suggestions for the future, just love.

 Glennon Doyle Melton

I know that life is impermanent; I suspect love is invincible.

Aim for Even posts offer equanimity in daily doses. 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.