Tag Archives: chronic illness

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.

Let Me Be Gracious

I must buy more T-shirts that give people pause. It’s good for them, I think, and I know it’s good for me. It shakes us up.

This morning, I wore my “Nasty Women Project” shirt, more for a color coordinated look than as a statement. I always enjoy wearing it but as often happens, I forget I am until someone notices.

This morning, it was the pharmacy tech who reminded me. She regularly waits on me and usually calls me by name but not this morning. She just kept staring at my shirt.

“Name?”

“Huber.”

She paused before asking, “Karen?” Her tone was one of disbelief.

I could not help but smile but it was just a small one. “Yes,” was my answer. Admittedly, my tone was a bit sing-song.

The tech may not have been crestfallen but she was puzzled. How dare I not be the ailing old woman that she was so sure I was.

To be fair, she has seen me on some pretty rough days but the only conversation we ever had was my giving her the information required to purchase my prescription.

I presented as a new person to her. Maybe I will replace the one she was so sure she knew. Who knows, maybe someday she will surprise me, too.

Let me be gracious when she does.

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.

Yours For the Taking

This morning, I walked away from my walker without realizing it. I did not return to it immediately. It was a bit of freedom. Why not take it?

Mine is a two-room apartment so this was not a walk for distance or duration but it was a walk with an actual gait. I focused on each step, sensing a rhythm.

Is that what a blur on an x-ray might bring? Rhythm? Is that what “teeny” fusing of donor bone with my vertebrae feels like? I’ve been here before, too aware that such a blur may be in the eye of the beholder.

A year and a half ago it seemed my neck was healing after C2-C4 fusion surgery, only to be later told later no healing was taking place. The neck is the “piece of real estate” that controls my limbs; daily, basic yoga helps me work with the signals they send me.

In all ways, this feels a matter of nerve. Do I have what it takes to believe again? Is that what hope is?  I don’t think any one thing–like an x-ray–can give me hope any more than one person can take it from me.

It is mine to give or not to take. Hope is always available. In every moment, I’m given yet another perspective on the obstacle that is my path. In this moment, it is a blur on an x-ray.

It is not a matter of “getting my life back” for this is my life, this moment right here. I don’t want to miss a moment of it. So, in the early light of this morning, I walked.

As Emily Dickinson wrote, “if your nerve deny you— go above your nerve.” It is yours for the taking.

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
forefoot 

carefully
then the hind
stepped down 

into the pit of
the empty
flowerpot.

(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.

Taking My Daily Dose as Delivered

My annual appointment with my neurosurgeon was scheduled for last Friday. My autoimmune disease was in high gear, skeletal issues less so but pain high and energy low.

In retrospect, I should have listened to my body rather than heeding someone else’s schedule. I arrived to a locked office door. Truthfully, I was rather relieved as I really was not feeling well.

As turned to make my way to my vehicle, I saw the receptionist and office manager returning from what appeared to be a morning stroll. They did not seem surprised to see me.

I stepped back from the office door as the receptionist opened it; the manager quickly disappeared into the dark office. The receptionist asked my name, as she invited me inside.

She told me she had rescheduled my appointment for next week at “around the same time.” I wondered what time that would be as I had not mentioned when my appointment was. Sighing, she said the neurosurgeon was “on a marathon.”

I felt my emotions start to spike. The wasted trip was a huge drain on my energy but if I got upset, I would only further drain my resources. I stayed silent. 

The receptionist put a wall between us and opened its sliding glass window revealing an area rife with paper, including a frayed and worn appointment book.

She asked me if I like Fridays. I said I liked them fine. Pressing the question, she asked me if I prefer Fridays. I told her I do not have a weekday preference. And I don’t.

“So, did you call me about the appointment being rescheduled?”

“I did make some calls,” she admits. “If I did call you, it was late at night.”

I recognize this is supposed to be meaningful to me but it is not. I feel my anger, again. “There was no call.”

As my response is no surprise to her, she asks, “Next Friday, around the same time?”

I have no intention of agreeing to the first date offered. “No,” I say. “Any day after May 4th.” Of course, we settle on a Friday and I am given a card.

I don’t know that there is a Zen moment in this experience but if there is, I discovered it in today’s #DailyDose. It has been another rough day in terms of pain and energy but I recognized early they were today’s dose. And it made all the difference.

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.