All Right Will Never Be the Same

My primary care physician and I are having our usual conversation when she says, “If you didn’t do what you are doing, you would not be living on your own. Others would be caring for you.”

“Thank you” is all I manage to reply. There are so many facets to what she said. Later, I tell a friend who responds, “that’s so powerful.” It is indeed.

My mind’s memory reels spin, searching for July 2015, days before the surgery to decompress my spinal cord and prevent quadriplegia–this time. I’m told to stay at home and “whatever I do, don’t fall.” So, I don’t.

My stagger resembles a drunken Frankenstein’s monster and more than once, my scrambled eggs end up on the floor, as signals short-circuit. My limbs are less and less.

I meditate a lot and dream, vividly.

I am in a surgery where all the instruments, table, and equipment are white light in a brown paneled room. Dressed in a hospital gown I sit on the surgery table, legs dangling over the side. I’m not alone.

 Maurya sits next to me, also dressed in a hospital gown, legs dangling over the side. We talk about the surgery, as if she were still alive but she is not so our conversation is the sense of speech.

 “But I will make it through, right?” I remember repeating the question as she leaves, taking some of the answer with her but not all. I will go through stuff, maybe a lot, and I will be all right, but all right will never be the same.

And it hasn’t been, knowing there is no recovering only progressing, and no one, even in dreams, knows what that may mean for spinal cord and autoimmune disease.

I “do” not waste days wondering or analyzing dreams. I immerse myself in the life I have, and the more present I am the larger my world. My days are never long enough for all I want to do.

Mindfulness is not a placebo; it is awareness, raw and unfiltered. Finding the worthwhile in the seemingly worthless, like Leonard Cohen’s cracks that let in the light, imperfect in an impermanent life, one experience after another. It’s in the unexpected that I find out who I am.

This latest round of medical visits began with my driving to Georgia with a tampon up my nose. Who knew that was a thing? This is my kind of unexpected–almost expected, now.

Every three months, I see my rheumatologist and this last Tuesday, just as I was getting ready to leave, my nose began to bleed. These nosebleeds are now chronic, a side effect of Sjogren’s syndrome.

Immediately, I pinch the bridge of my nose, deciding whether I need a light(L), regular(R), or super(S). I don’t want to change tampons while I am on the road so I settle for an R. I close the red door of my apartment, turn the key in its lock, and walk to my car.

My drive takes me through Buffy St. Marie’s “Tall Trees in Georgia,” long leaf pines, sprawling live oaks, and in spring, wildflowers in the median. In winter, a steel green blanket.

By the time I reach the Macintosh Clinic, my nosebleed has stopped. The two-story, red brick building with white pillars once had another life and usually I stop to admire its architecture but on this day I’m grateful not to walk into the clinic with a tampon up my nose, although I was perfectly fine driving through 8:00 a.m. traffic.

When I tell the nurse about the nosebleed she asks, “When you were at the light, did you turn and look at people like this?” And her brown ponytail swirls from side to side as she gives me her best tampon-up-the-nose look. “I would! I’d find a cop and look straight at him!”

It is only recently I have come to know that tampons up the nose are an actual thing, medically. And on this day, I discover that my rheumatologist (and later) my primary care physician believe staring is the preferred behavior when wearing.

I tell my 90-year-old neighbor, Grace, and she, too, wants to know if I turned and looked at people. I get it, I really get it. I’m almost looking forward to the next time, for there will be one when I least expect it.

And all will be all right and all right will never be the same.

The Undertow of Thought

When I started meditating, nothingness was my goal. I wanted to sit in the peace of living, determined to eliminate my every thought for at least one hour every morning. Upside down and inside out thinking, of course, and utterly impossible.

Big thoughts announce themselves by snatching up space as if it only exists for them. They don’t stay long, for they require too much attention. It’s the undertow of thought, subtle and inviting, that is a constant thief. *

And what it steals in meditation, it steals in life. I miss my life when I wander with the thief, creating scenarios for existence elsewhere. In other words, nowhere.

Meditation does not jail the thief for like the undertow, it will not be defeated by brute stubbornness. Awareness is sufficient. It does not take more than that, which is not to say that mindfulness is not without effort. It’s just that it’s worth it. It’s the real deal, not a scenario.

Authenticity does not abide thieves selling snake oil, the positive thinking of nary a cloud in the sky no matter the storm raging. Mindfulness delivers life as it is and stays the would-be thieves of rose-colored glasses.

There is nothing quite like that first clear-eyed view of acceptance. Nothing. Equanimity seems not the stretch it once was. Regard for the undertow reveals more of life not less.

And nowhere in my life has that been truer than in adjusting to the various levels of chronic illness. Disease is a robber only if viewed through a lens of loss. There is no shortage of lenses in life; there is one for every moment.

It’s a matter of looking at what I have rather than what I don’t. It is how I stand in my truth, my power.

This does not happen without a bit of mental wandering with the undertow but there is a magnet to mindfulness, a groove of practice. The less that I am physically, the more I am mentally. Less function equals mindfulness magnified, more prowess with the would-be thief.

Mine is the life that many fear is inevitable in aging. Nothing is inevitable. It’s about choices. I haven’t always lived mindfully. It only matters that I do now, swimming with rather than against the undertow.

An hour’s meditation alerts me to my body’s strongest signals, setting the agenda for the day. A body in stillness is my way of stripping the drama from pain and listening to its signal, going to its core. So often, I would rather steal away but going nowhere is always a disappointment.

Both physically and mentally, I have places to be–the kitchen, the shopping, and the writing, which is increasingly tedious. My fingers cannot seem to select the correct key the first time but readily (and constantly) my hand palm finds the space bar or even caps lock.

No matter the type of voice recognition software, my word structure exasperates, especially if I consider the poetic or commit the greater sin of passive voice. There is constant correction on my screen of words trying to become sentences.

Some days, I persist just because I can but my mind tires of the stop-and-go writing and finally forgets what it was trying to say. My hands stay asleep, tingling.

I’ve had to recognize and actually appreciate that it takes me two to three times longer to write an initial draft, some days more than that. It’s a lot of additional hours.

Clear-eyed acceptance is not an easy lens but it offers options. Real ones. Should I struggle with the undertow, I am only out to sea, aimless. Best to be in the life I have, as it is, exhausted and frustrated, but not so far from equanimity.

My Own Bit of Buddha Nature

Pre-spinal fusion surgery, I described my gait as ”a drunken Frankenstein’s monster.” My neurosurgeon thought it apt.

Subsequent surgery and yoga have improved my walk considerably but my gait is still ”spastic” so there remains a bit of Frankenstein about me and always will. My body is not in synch.

Both hip replacements are great but my spinal cord is damaged from prolonged pinching. I’m among the 70% who show improvement. Still, I stagger sometimes, clumsy comes easily.

My neurologist explains it as residual from the cervical fusion, nothing monstrous, merely minimal–that which could not be restored–so less is better.

Body hardware strengthens sensation–works with the residual–what remains after the damage has been repaired. With less I learn to do more with foreign body parts. That’s as good as it gets.

And that’s the way I live, in an apartment of two rooms–living area/kitchen and bedroom–with a shower/bathroom. Even a full Frankenstein can maneuver here.

And isn’t that what being alive is all about?  Learning to live in the skin we are in and then go exploring. For a time, walking my apartment with a slight stagger is sufficient.

Always, there is writing but with limitations.

There is not enough sensation in my fingers for actual typing. This has been true for the last two and a half years. In this regard, surgery provided no improvement, no change.

What remains is tingling/numbness in my arms and hands, all fingers and both thumbs affected. Yet, what does not change can be good news and in my case, it is.  No healing is possible so maintaining what I have is the goal, and that I am doing.

I’ve been using speech recognition regularly but speaking the written word is not the same as typing it. Sounds silly but the thought process is different, completely different.

For me, editing speech recognition is slow going. My brain commands my fingers–hunt and peck–but the keys they stroke seem to be their decisions alone.

Even so, I am book-building now, which limits the number of my blog posts but blogging is an integral part of my life, especially as I found myself becoming a bit of a Frankenstein.

How that happened is all here on this blog so I continue to post, from time to time. It’s comfortable here. I hope for you, too.

I am excited about this book because it is not like anything I have attempted before. There is a freshness in it. Like the residual that is me, much remains to be explored. And so, I am.

My one bedroom apartment is not the world, no matter how much the Internet introduces. Ironically, it is the online world that opens me to what is outside my door.

Quickly, I go nowhere without a walker but not the orthopedic wonders forced upon me after each surgery.  Companions they may be– to take me from one seat to another–but they are not friends, not wheels to the world.

I find my walker on the Internet, after much research, and I admit to hubris when it comes to the uniqueness of my wheels. So far, I have seen no other like it.

It feels more a motorcycle than a legged triangle on wheels with grocery basket and backpack. Silver handlebars bars with black, bike-like grips, it offers no seat but three gravel-gray wheels thick enough for trails, if I am careful, and I am.

I can zoom around people, snake though grocery store aisles. My mobility startles shoppers; free-wheeling I call it. Not my best moments, admittedly, but disability does not mean I walk with saints.

My walker may be my own bit of Buddha nature, my constant in the chaos. It is wheels for life–mine–as good as it gets.

The Energy of Being in the Moment

I found a way of walking on air with prednisone this past week. It has been more mindful than you might think. And groundlessness was the key.

I would not have suspected that prednisone would provide yet another perspective on Pema Chödrön’s teaching of groundlessness.

In other words, work with the reality I have–be and stay present. Not something I had ever tried with a prednisone increase to reset rather than rejuvenate my body.

Initially, being present seemed counterintuitive. Why not go with the energy and have a few days of doing things like everyone else? Was that not being in the moment?

Not a one of us gets life full-blown forever. No one light shines without going dark. And even if it did, our appreciation would go blind.

Life is never about going back. It turns on a dime. Whether it stays on edge or lands on heads/tails, it is a new tale to tell every turn.

I remembered why I finally turned to meditation as a serious practice. I had no place else to go, nothing else to try. I wanted meditation to be a panacea but nothing is in isolation.

Some days, there is a clarity in meditation for which I have only the experience–no words. Other days, the thought chatter reduces me to tears.

I no longer show up with expectations.

It is the only way to wake up in a dark night of the soul and find a sliver of light. What else is the present moment other than a single sliver, just enough to light the night.

Some days stay all but dark. In this world, to get up in the morning is an act of courage for anyone. Life is not a Pollyanna prance.

What is more frightening than being in the moment? In other words, what I feared most about being in the moment was being in the moment.

But each day is all I ever have. Yesterday is gone, tomorrow a mere maybe. Both are mucky lands of “what if.”

It is only in the present that I settle into groundlessness. No thing and no one stays. The fabric of life–of what we take hold–is its impermanent experience. Maybe that is magic. I don’t know.

I once believed there to be a bit of magic in prednisone. After all, its possibilities seemed endless because energy is just that—endless. But I am finite.

This past week’s increase in prednisone has been unlike any other for me. It did not start out that way.

Old behaviors kicked in immediately. Within hours, I was anywhere but the present, my thoughts spinning with the possibilities of a six-day energy spree.

That kind of energy is so seductive, rather like chocolate. And too much of a good thing is just that. If meditation has taught me anything, it has taught me the power of pause.

I could exhaust myself with energy and at the end of six days, be in worse shape than when I started. Just a mere sliver of light that moment but it seemed a beacon.

That is how mindfulness rolls, a singular sweep of the scene, weaving one moment into another. An undulating tapestry. A web without a weaver.

Working with Myself Rather Than Against

There is no returning to a blog. There is only the next post. I like that about blogging. I’ve always taken it seriously knowing every post requires a degree of vulnerability.

I’ve explored whether to continue this blog, after beginning AimForEven.com (AFE). It seemed there was a connection between this blog and AFE–at least in my mind–so, I let AFE grow into itself and discovered where and how the two blogs intersect.

As for this blog, it was a weekly blog until I had three major surgeries in less than two years, in addition to being chronically ill. I’m still chronically ill but having two “new hips” has dropped my pain level significantly. In response, my energy level has risen, although it remains limited.

Once again, weekly posts seem possible. They may turn out to be bimonthly posts but I’m aiming for weekly, initially. I am calling them the #LongerView, another look at an issue or concept published in an AFE post.

Originally, I hoped to post daily on AFE, and I worked hard at it but soon, I found I was working against myself. The purpose of aim for even is to do just that. It is not a daily grind but working with the energy I have to meet my responsibilities and obligations. It is far more practical to post on weekdays only.

Since July, 2016, I have published 175 posts on AFE. There is a pattern emerging; I believe there is a book in it. I won’t know unless I try, and I’d like your help, if you’re willing. You don’t have to do anything other than what you’ve always done.

Just let me know if there is something you like or would like explored more. I read every comment very carefully. Many times, comments have resulted in blog posts.

The idea of AFE may sound mediocre in a world driven by divisiveness and competitiveness but AFE is far from settling for average or a bit above. There is no settling involved, just the opposite. AFE is living with integrity by learning to live with the reality I have, not the reality I want. It’s eminently practical.

It brought me through these last two years of surgery, illness, and loss. Zen, of course, plays a huge role. Every time I frame my day for the experience that it offers, I accomplish more than I thought possible. Every. Single. Time. That’s what AFE—the book–will explore.

This blog has a steady readership, and I am grateful. For years, you have overwhelmed me with your loyalty and your compassion. Some of you have asked me about writing a book. I tried more than once but I was trying to return to a life I knew both as a writer and as a human being.

But there was no returning, no getting my life back.

Now, I work with the reality I have, often surprised by what I am offered. It requires an evenness of mind–equanimity–curiosity helps me stay open.  A sense of humor allows me compassion. It reminds me joy is available in every moment, if I will just “be” in that moment.

As Toni Morrison said, “I always start out with an idea that becomes a question that I don’t have the answer to.”  Exactly. I aim for even.