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.” 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.

Survey Says…

Living on a fixed income can confine–no doubt about that–my budget is the same bottom-line every month but cost overflows require a constant balancing act.

So, I have been looking for ways to supplement my income. While costs will ever be fluid, I need to work within my current frame of life, which includes aging and chronic illness.

It is not that my current frame is without flexibility for it is not. Neither chronic illness nor aging confine but both, too, have a budget. To overrun either is to exact a cost on myself that is rarely made up next month or in this lifetime.

When life expands, so does its frame but it has to be life doing the expanding rather than egomania or placing myself within a frame that does not fit.

So, I started taking online surveys for payment–in cents, usually. The best surveys pay a dollar or two and some up to five but these are not the usual fare.

I’m conscientious in my work–surveys interest me–I’m curious what others measure. The surveys also mirror my own living within the frame that is my life.

Specifically, my experience as an aging, disabled woman living in Florida. Any one of those labels will disqualify me and frequently does. This is also true if I choose the label retired.

Often, my own blend of chronic illness is too rare (or too common) to warrant a survey but diabetes, hypertension, and cholesterol seem to be current hot topics for surveys.

But my label bias is showing. For me, labels are difficult, a lifelong issue, but I do recognize their importance in providing context.

And although I have not been in contact with anyone else who participates in these surveys, I suspect they, too, find themselves disqualified for their own group of labels.

I don’t want to get worked up about labels, which I am wont to do.

The surveys that I am offered most frequently have to do with gaming videos, although I do not own an Xbox or virtual reality equipment. I’m not into role-playing games, either.

I am, however, fascinated with strategy/puzzle games, mysteries mostly, forcing me to focus on the story’s task at hand. Similar to reading, I am immersed in a story that is not mine. Freely, I admit to this escape.

These games help me find the way through my fog, when my brain is more mush than matter. Now, I have surveys, too–similar but not the same–it is the absence of story that sets the two apart, I think.

Surveys end–happily or no–while at game’s end, these “mysteries” reveal a successful strategy. On some days, that is a better use of my time.

Of course, there are surveys I reject outright but I admit I am most careful with the qualifying questions, if the promised payment is larger. I, too, have my mouse and cheese moments.

Always, the mouse runs the maze for cheese, seeking at least the regular fare but a larger reward is even better. Any extra effort is only a problem when the reward is denied without explanation or is less than promised.

If I value my time in terms of dollars and cents–within this context–I am well on the way to passing our national debt, maybe as soon as the end of next week.

It’s not that I don’t value my time–I do–but in my current frame, these surveys add more than the time they take. Again, it’s context.

No matter how bad a day is for me, physically or emotionally, I find enough brain cells for surveys, not because they are witless but because they help me find the way to mine.

I am not caught up in the ego of discomfort or frustration. Rather, I am in life as it is–with my pain. It sits with me. I sit with it. I learn something.

Every day is not a jackpot, and every day what I want will not fit within my frame but every day, I have my space. It is enough.

Why chase cheese if it is not on the day’s menu?

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.

 

The Zen of Sexuality

It’s been months since I have posted but I have not been inactive online, especially on Aim for Even.

My absence from this blog has been a time of change, of empowerment. And yes, that has meant a number of challenges.

Some of them seem to have an extended moment of existence. 😉

I continue to recover from two hip-joint replacement surgeries (one includes a fracture). Increasingly, I am active in #TheResistance; I’ve even had an essay published in an anthology.

The pain America is experiencing has parallels with chronic illness. After all, this country has ignored so much for so long. But that is a post for another day, in a week or two. 🙂

Today’s post celebrates August McLaughlin’s Beauty of a Woman Blog Fest, one of my favorite annual events. I believe this is my third year of participating.boaw-17

Always, there are two categories, both requiring thoughtful discussion of beauty. There is the “original” beauty category and its array of possibilities. The second is Girl Boner®—my choice this year–specifically the Zen of sexuality, à la Girl Boner® radio podcasts.

I am a regular listener of these podcasts and have been since 2014. GB radio is “where good girls go for sexual empowerment,” and that is just the voyage in, “a movement in the making” as August has described it.

Imagine a world that does not look askance at sexuality or even asexuality but accepts that sexuality is not only part of being human, it is an essential part of the human experience. That is the world of Girl Boner® podcasts.

In Zen, we are here to experience what it is to be alive in the physical dimension–all that may encompass, including our sexuality.

Embracing our sexuality is essential

for embracing our full selves.

August McLaughlin

I hear that awareness and compassion in every GB radio podcast. Our innate sexuality is how we identify. For me that means lesbian and cis-gender female. There are others who identify similarly and many who do not.

I think it is as Joyce Carol Oates wrote, “We are linked by blood, and blood is memory without language.” Sexuality is such memory, without language but never without inner knowledge.

In Zen, we open ourselves to all we meet— we open our doors with equanimity— so that we experience all that life reveals to us. Girl Boner® is a way to fully appreciate the sexuality of our own human experience. As well, it teaches us to embrace the experience we do not know.

There are few true resources for the transgendered population as well as those who are not cis-gender. The same is true for those who are asexual.

Girl Boner® broadens the scope of our understanding of the sexuality of being human. Truly, the work of August McLaughlin and Girl Boner® is a celebration of the Sam Levenson poem for which the BOAW Blog Fest is named:

People, even more than things,

have to be restored, renewed, revived,

reclaimed, and redeemed; Never throw out anybody.

Sam Levenson

No one. Not ever. Namaste.

This post is part of the Beauty of a Woman BlogFest VI! To read more entries, and potentially win a fun prize, visit the fest page on August McLaughlin’s site between today and 11pm PST March 11th.

Sitting Silence

In times of loss, I have always gone silent. To me, silence has always been a response but it is only in these later years that I learned to sit silence as a response to loss.  watching 0314

Certainly, silence has been my only response on this blog for well over three months. Almost daily, I posted on Aim for Even. There was the interruption from hurricane Hermine, and there was the first of two hip replacement surgeries.

The surgery went extraordinarily well but the patient lost a way of life, totally unexpected. Loss is often evident to everyone around us before we meet it face-to-face.

And so it was for me with feline EmmaRose. She appeared frequently on this blog, and while she lives still, she lives elsewhere.

My hospital stay revealed that I was no longer able to care for EmmaRose even beyond my recovery from hip replacement surgery. More and more, autoimmune disease dictates what is possible for me. In this case, accompanying anemia keeps my energy level quite low.

This partnership of autoimmune disease and anemia has been affecting my life for some time—quite seriously—yet I chose not to hear what my rheumatologist was telling me. Neither did I sit silence for counsel. Rather, I ignored or reinterpreted every medical pronouncement, an old behavior of mine. Emma meditating 0313

Only in losing EmmaRose did I sit silence. I knew the right thing to do and did it but the right thing is always so hard to do.

Is that because I ignored my intuition, my “gut,” until I could no longer deny it? Or is it because doing the right thing always asks something of me that I don’t want to do.

Good questions, and I will ask them all my life. The answers are time sensitive but the questions are eternal. They allow me to see me as I am; always, it is revealing.  

I sit silence, all eyes and ears.

And if I am fortunate, a bit of magic shows itself. I have never doubted the presence of magic. It stays hidden in plain sight, its last protection. As fast as this world whirrs, magic is missed.

So often, we chase what we will never catch. Where is the magic in that? As a believer, I tell you that once you have walked through a magic portal, you will never forget the experience.

Some years ago, I discovered an animal sanctuary, deep in the Florida forest. It is not a rescue or a Humane Society but a farm for medically needy animals to live out their lives in a family setting.

If it sounds idyllic, it isn’t, and to me, that’s what makes it perfect. Not too long ago, I was an administrative volunteer for this sanctuary because its mission is like no other. There are no paid staff and there are two veterinarians on site. And yes, it exists entirely on donations.

In her sun 0413

Magic always wends its way.

So, EmmaRose, now medically needy herself, returned to where she once lived. Daily, a little girl sings to “her best kitty ever,” as a family helps EmmaRose adjust, again, to life on the farm. At the very least, the scent is familiar as is the love.

And I cry but my tears are more for the joy of the years we knew than for the years we will not know. Love always overflows loss.

No matter how dark the moment, there is always a sliver of light. If I sit silence, the world cracks open just a bit.

I no longer focus on the future, what I may or may not experience. The only life I know is the current moment. It has my complete attention. Even without death, some lives leave us. We never know when we must let go, when we must change.

Sitting silence is immersing myself in the experience of being alive, raw and unfiltered, whether it’s the loss of health or doing the right thing for EmmaRose.

I know that each loss reveals its worth in its own time. And then there is the magic. If I sit silence, I will not miss it. I will not go whirring by.