February 10, 2020
I’ve lathered you up, Bar 3 pending for 10 months since Bar 1 was first published. Days, weeks, and these months have dripped, spilled, and gushed, so much has happened, but yet I can’t put my finger on a point to plug the spigot long enough to look deeply in this murky pool to closely reflect at how things have bubbled-over, and to dive in to so much that has gone down the drain.
Grief is the clog, the part that won’t ever get completely washed away, and “dirty water” doesn’t even get close to describe the type of wet or mystery-soup it can be. Like my little sewing decision to close a heart-shaped tear in my cycling pants, today is now the day I’ve chosen to step back in the shower to finish writing A Soap Story – Bar 3 of 3. As always, thank you for reading. “Don’t judge, don’t fix, just read.” ~P.
The soaps that were not my soap.
The only time of day I look in the mirror is before and after bathing. As I do so now, leaning forward against the cold sink’s edge, I scan my reflection from head to waist, and more than any other judgement I receive, the very most, I give to myself at this moment.
I question everything because every day I wake up and doubt this is all real. Out of order death has blown-up my rational thinking, caused me to not listen to others’ advice and hear only my point of view. And the irony of that, is that I’m struggling most with reassuring myself that “I matter” and it’s okay that “I am here” even though he is not, and listening to others means to me that my needs and wants are put aside for their sakes, not mine. It’s an identity crisis, a leadership contradiction of who’s in charge of my life. If I’m not in charge, who the hell is, or should be? Whatever happened to learning from mistakes and getting on, instead of not getting up from repeated failures?
I look at tired eyes, sadness behind irises which fluctuate from pine-green to storm-cloud-blue, and inside my pupils, I enter the library of my mind. I can go there whether my eyes are opened or closed, and I always know the way to a small, reading space, plainly situated in a corner. My body finds the same seated position, partly curled in a “Z-like” formation, and I effortlessly nestle myself in between large, soft pillows of stoney greys, soft-hued blues, and pale-greens. It’s there where I so often go, away from rows of word-jammed books crammed on shelf after shelf, to read the most difficult volumes about my life.
What is read here in my little corner are my invisible books, those which visible writing cannot contain, those that are the “unwritable” subjects and stories. I merely need to hold my hands palms-up in front of me on my lap: it’s a reading of my hands. It’s how I can safely look at the most difficult realities: my eyes scanning cracked, lined skin, sobbing quietly, tears wetting what is so dry, as I read my private stories that no one else is allowed to see.
That’s how it is most of the time, and it’s so hard to sort what is truly “shareable” and “writable.” My darkest thoughts and sad feelings are too-much and too-awful for public view, but it is important for me to bare my reality of loss and grief. If I were completely unfiltered, however, I could look no one in their eyes again. Call it a necessary keeping of some of my clothes on, reasoning that I don’t need to be completely naked and fully exposed. “Some skin” showing still gets my point across without needing an R-rating, it’s just “better” with a solid PG.
For all that I’ve lived in my 50 years and counting, as I think and review life’s pictures and happenings in my mind, I’m now asking from what point of view do I see? In telling and recalling, there is great fear that I may subconsciously rewrite my history, whether on purpose or by accident. Can I, or should I, put things in “a better light” or alter happenings as they occurred? Am I the protagonist in every story? Is it important that I am? Did you ever once think you could be seen as the “bad guy” in your own life or viewed as being on the “wrong side” of history? Feeling so right and certain and full of justifications for opinions and actions, but later discover it was frenzied, willful belief that only gave you confidence you were “right”?
I’m at that point of no matter how I got to here, this is where I’m at. I’m right here, so let’s take it from this point and go forward. Past has to be past. I’ve fallen on the trail, I’m in my worst nightmare of falling off of a precipice. I’ve tumbled, bumped, snagged, rolled downward, all the while earth and debris are sticking to me like tar and feathers. After hitting bottom (I question if I have), I’m wearing a suit of ice, mud, leaves, and hoping as I attempt to stand and begin to trudge on, carrying heavy weight that I can barely manage, the tiniest of pieces will fall and crumble with even the smallest effort.
I want to be lighter so I can walk faster, I want to be running and able to ride a bike and follow the a-line, not just the b-line. Somehow, it just may be the PZ-line, a route of my own, no matter how hard I try to follow along with the group.
Last Saturday had been about putting my best optimism out there to have a good day, and resulted in repeatedly being shut down, corrected, to it not being what I’d hoped for, after all. I found myself screaming in my car, a burst of piecing fire, those siren-spewed seconds consuming and eating all available oxygen, meanwhile my foot did not flinch from the gas pedal, and I did not blink. There is no escaping days where I feel utterly ambushed and snapped out of positivity and sincere efforts to not be “griefy.”
If you think I’m going to turn this in to some kind of empowerment speech, I need to pause your reading further and point out: each and every day, there are speed wobbles, grief bombs, and pounding waves in my living this life without Jon, my husband-partner and the father of our children. The grief really does not end, and to get up and out of bed to “see what today brings” is most likely to be shit out of my control, or what is in my control, is just absolutely uncertain and undependable of how it will turn out. Failure. Anxiety. Redirection. Headaches. Screaming alone inside a moving car. Pointlessness.
This past week was exceptional, like a sucker-punch squarely to my nose, and afterwards as days progressed, I kept feeling the remaining swelling, and constant sensation of a drip coming on, and the need of a tissue to dab my nostrils for the return of blood. All week, my heart twisted and raced, unable find a steady beat. This can occur every day to some degree, but this past week I was highly aware of it because I hadn’t exercised the anxiety out of my system four days of it in a row. No release in my “healthy” habits of exercise, it bottled-up and the pressure built without real relief.
It was a week stuck in paperwork and appointments as part of the reason why, and I also had a follow-up radiation oncology appointment mid-week. August 2020 will put me at 5 years out from my breast cancer. As I told my all-too-peppy doctor, remission is a bad word to me, and cancer is like a gang: once you’re “in,” you’re never truly “out” until you die. He met my pessimism with continued optimism, mostly in the form of reminding me to be kind to myself because I took all the steps to zero-out my dealings with DCIS.
Appointment day, it was a tough morning of sitting in the waiting room with strangers, my fellow gang members, meanwhile hopeful pictures on the walls of compassionate medical staff at the side of patients getting care and everyone smiling about it in these images stressed me out. Each were reminders of Jon, the bad times, not the good ones. I’m not smiling back to those pictures, and I do not feel your compassionate care to this shit disease, thank you, though, for this positive PR effort. I chose instead to concentrate on the large prairie painting canvas, hung slightly at a tilt, and wondered if it was an actual place in Michigan.
Backing up just a bit, in 2015, after my lumpectomy, radiation was next for a total of 20 days. Each treatment session was short bursts of invisible rays, targeted to a large rectangular area over my left breast. My heart needed to be out of the way, so for each zap, I was told to hold my breath. I really don’t know if it worked, or if it was only a psychological game to make me think I was doing something besides laying in my molded-foam cradle, tits-out, listening to an awful music selection to distract me from pulsing machine hydraulics while shoes squeaked and hustled across the linoleum floor.
My heart may, or may not, have been spared from radiation, put out of harm’s way, but it has been in direct line of fire to loss. I can’t get loss out of the way, it’s unavoidable, and my heart can’t take much more from the zaps of grief-filled sadness, these new waves of loss, ongoing aloneness, and the madness of continued uncertainty. How long can I endure this pain? I feel it for myself and my kids. If only I could hold my breath, and all the hurt would bypass my heart and all of us, even for a short burst of time.
40 months. Last week also marked another month since he died. Let’s not rush, and say it’s 3-1/2 years, until it actually is. My mind has been trying to focus on what is to come, a forward-thinking idea of getting closer to something new and different, rather than getting further away from when my heart stopped beating when Jon died. His illness clouded his mind, trying any-and-everything to move toward getting well and stepping off the cancer-train, his best thoughts and efforts were like water through a sieve, despite more water-pressure added, it resulted in just more water gushing through a patterned-holed, polished-steel-handled bowl.
This is how I feel right now: just like Jon, I’m trying with all my will to get to some happier place in my life beyond pain and confusion, but everything I’ve tried and have done, doesn’t work or has made matters even worse. The rabbit-hole is a real place, and I’m deep below ground, and I desperately need air to breathe.
My soap connected me to a time when my life was at a much different pace, and when I was hopeful and optimistic about and feeling that certain “knowing” that Jon and I would be together and our two children were our greatest joys. We could see so much of a positive future for them, each of their ages under 10 in 2011. We looked forward to the promise of a happy future.
Then, suddenly and quite blindly, in January 2013, were we hit with his emergency bowel surgery, and cancer took over our lives. I asked for God to sustain me, to protect me from this path that lay ahead of us, into an abyss of unknown and darkness without end, especially because I can’t see in the dark, my night blindness flattens and obscures everything.
Our lives became shrouded by cancer, in this darkness my mind shifted focus, I saw life and people, and my family differently. Painful, because I believed and trusted without question Jon’s “plan” and watched helpless as his once-talkative self, morphed to quiet-determination, and in between his blips of frustration leaking out, it was nose-to-the-grindstone working and unspeakable thoughts of “what-ifs.” What if: he were to die? What if: I had to work again? What if: I was left alone, solo, with the kids? None of those questions was uttered, even thoughts were hidden, except in our nightmares.
All of the Before washed over me this past week, remembering as his illness silently progressed, I depended more on the simplicity of showering with my soap as that one reliable and comforting thing for my body. He was shrinking before my eyes, his mind focused either in full engagement, or on finite or minuscule things that only he could see. We were both losing sight of everything else around us.
My only other focus was on keeping our kids in a normal routine of school, how absurd that now seems: school was a false reality that once they came home, dissolved into finding their dad cozy in his certain comfortable places, his valiant attempts to be actively engaged so precious, then afterwards, pausing for a nap, gently closing his eyes.
I did anything he asked me to do, his every request and choice was met. I lost myself in his care. My reality was as he saw it, with his getting only better, returning to work, eating a full plate of food. Each day, I would go through the motions, but my emotions were put aside, hidden, all strength put to fueling his view of himself and his surroundings. As I was supporting him, what I needed most was support for me. All my expert-hiding and secret-keeping prevented anyone from seeing how deeply this was affecting me.
And I ask myself now, if someone had reached out to me from seeing just a glimpse of the real pain I was going through, and really understood, would I have let them in? What could someone have done to help, anyway? Would I be any different today, if I had just let my wounds be seen by others back then in real-time?
The thing about hiding all those emotions by constantly wearing my many brave faces from that time, is that I used them all up then, I had few to none left after he died, and especially now. The face I wear is the one I let you see, yes, the smiling one, the one neither happy or sad, and the occasional awkwardly laughing way-too-loud one. It’s true, the years-honed-hiding continues on a certain level, but mostly Its an honest effort to persevere and be positive with grief at my side.
Grief and loss did not happen all at once. Like the cancer he fought, it was progressive, slowly debilitating, and both shattered and chipped away all-sense of self and mind. Absolutely nothing about my life as I knew it was spared, loss in Before and After took away everything I knew to be once real.
For so long, I have been in deep grief, often called complicated grief. What’s that like? I can’t say how many times I’ve awoken to feeling like it was “day one” of Jon’s death. A repeating loop of the worst fears realized right in front of me. My grief is like a compost heap that doesn’t get enough air, it’s stagnant and remains heavy, soaked, and clumped. More leaves and kitchen scraps are added anyway, the pile seems to only grow, no sign of all that “organic material” diminishing anytime soon.
There will be a point to come when I am not in so much pain, a time when it will be somehow less harsh, whether softened by listening friends, a bike ride, or a simple hug. I do not write about grief to espouse enjoyment of pain and suffering, and I certainly do not want to cause others pain. I believe there are people who relish in the suffering of others, and I’m all about not suffering.
Talking about difficult subjects in a candid and open way is important to being human, especially acknowledging and “seeing” others in all of life’s ups and downs. Plainly stated, sadness is just as important to talk about as happiness, both are parts included in a life that’s lived. To live a life as my true self, in an unashamed, unfiltered way, is to have a full-life.
This past December was a very low time. I had just re-homed my dog companions, and was reeling from other fresh loss realizations. How I wished I had my soap, to stand in the shower and let the steam soothe and surround me with my soap bar in hand. On a whim, December 10, I checked one more time online to see if it was back, and there it was: my soap! I was shocked, in disbelief, but production problems were apparently resolved and before it could be out of stock, I place an order that day for a pack of 3 bars: Kiss My Face, Fragrance-Free Pure Olive Oil Soap.
My soap has become a talisman, a protector, and a preserver. It’s being found again at this particular time was a critical lifeline. I was so grateful. Yes, finding my soap again did that for me: it gave me that one thing to look forward to each day, when otherwise I could not see the point. These past couple of months have been very challenging, a series of endings and beginnings, the holidays and year’s-end magnified everything.
Every loss and resulting grief is unique to that relationship and each heart is like a fingerprint. There are no road maps, no definitive ways to do or go, there is no wrong or right way to grieve and most who carry it, agree it’s not so much a getting over it, but a getting on with it. For me, Jon was my husband, and I get to decide now how I deal. It’s my choice, because I had no choice in Jon dying and his being gone away from me. Am I being ridiculous for trying to have some control in my life and this situation? Self-doubt, unfortunately, is ever-present without Jon here.
My heart aches constantly about all of it. My heart is so tired, it never seems to get enough rest, or enough peace. From the inside-out, it’s racing cannot be managed, but I found myself choosing one more angle: I’ve shifted my focus and energies instead to the outside-in. I’m talking about concentrating on the space outside of my heart, because, in fact, my heart is not the only thing in the way. It’s my house and everything in it, the very things surrounding me that are to support me, but most often make me sad, like those cancer treatment pictures at the oncologists, reminders of past, and not the good times.
I don’t have to completely forget or turn away from my past, but now is the time for some much-needed reconciling and in doing so, separating what’s good and gives Joy to me from what, clearly, does not, and instead, makes me stuck in place and sad. Moving forward, I now know what feels good and what I need, without apology. Additional losses realized have added new perspectives, a readiness to now do difficult things I previously could not attempt doing.
And without apology I say, not having Jon now, means I get to “make” a present and future without him, and “decide” which things of the past to hold on to, those things that still make me “Happy.” Happy is such a shit-word, I’m still uncomfortable with it, it’s so full of false-hope, assumed semantic-equality in universal understanding, and it’s a state of being that cannot be ever maintained in my world. I’ve had some time to really wrap my head around Happy now, and it is just one more thing I fall short of most days. So goodbye Happy, and welcome home, Joy.
Compared to uppity, highest-achieving “Happy”, “Joy” is like its quirky-hipster, tree-hugging, free-love cousin. Not yet wildly overused, Joy is a three-letter, single-syllable word, it is a more relaxed option: it’s personal, unique for each person, and kinda has that-certain-something that says, “Joy is what you make it to be.” It’s not an obligatory word put in front of every good wish. It’s not implying that it’s my way or the highway. There is intention when one hears the word “joy” and like grief, when I feel it, I can be laughing and crying at the same time. I want to hug this word.
My daughter also uses it in text to me, a simple response to my telling her that we are having beef stew for dinner. Joy is sweet, simple, with just a touch of humor. When I hear the word Joy, there is an abundance of gentleness to this soft, yet powerful word and its meaning.
Even a willful decision to have a good day, can be met with random-stupid-shit that throws me off the trail, literally. So I acknowledge I’m actually in control of nothing, even with my purposeful efforts, there are things that come to blindside me. My only defense seems to be looking to and finding, Joy. To selectively lighten the physical load of what’s around me, bringing close those things that make life more bearable, so that the load of emotional weight can be carried. Geez. Maybe the emotional weight could be lightened, too, without all the stuff around me weighing me down further.
I struggle with what the point is of finding Joy in my space and things, because I’ve learned even if I may find things, then what? Will it really lead me to easing pain? There are no guarantees of really getting somewhere or being at a someplace, even with all the efforts of the past 40 months and “progress” made, and I’ve discovered that if I stop at any one point, it’s not a destination, just another crossroads or path to take: the never-ending journey. Can I, will I find strength and courage to do it? Will it makes the difference I am needing?
Goals and people slip away from me, I have no hold on anyone or any one thing, my life has become fluidity at a master class level, without consistency or expectation. It’s like a never-ending loop on a pump track, but a sudden pedal strike takes my bike out from under me and next thing I realize, I’m digging grit out of my elbow. Clouds of dust and grit are all around me. Am I really Pigpen with braids in a cloud of constant grief? “Good grief, Charlie Brown!” Peanuts by Schulz has just blown apart inside my mind.
I wake up, I go, I ride the wave of today’s ocean, and weather is never a factor in this decision. I’m suddenly out on the water, paddling out, every day. Seen from high above, I’m a mottled speck of movement. I could be a dolphin, a rock jutted out of water in low tide, or just a piece of garbage doomed to float forever never making it back to land for recycling.
What you need to know, is last Saturday I said to myself at least a hundred times, “I’m not gonna make it.” And I will not, if the culmination from one bad week leading in to disappointments of one day gets me so low, and my response is to become lower still. There is great worry in baring those thoughts, because it is not an option to lose all hope, and I fear at times I do. Now you know.
It starts as a whisper of something being not quite right and thoughts of something I once had now slipped from my grasp. Living loss, loss by death, loss after death: this is exponential loss. I’m just now catching up to realizing it was, and is, in my Present. My mind can see what was once hidden before, the Past has come full-circle to the Present, and like matter crashing in a particle accelerator, there is now evidence of new dimensions and quarks to now be understood.
Grief is like an unfinished business, the business being love: the sudden and unexpected permanent-departure if it’s CEO and a deep missing of what is was, all that can be done is look at was accomplished, but now, forever unable to continue on, to complete its mission statement, and because the CEO has left this world and there is no other who can stand in the same place. All the employees are left to be adrift, perhaps finding separate ways to join another team, but that successful start-up business will never be found again. It was, in fact, a “one and done.”
It’s time to take a plunge into the depths of my full-grief conundrum and make some necessary course adjustments. How to do just that, when I know a “course correction” is not really possible when all directions include loss? I seem to be asking more questions than finding answers, lately. I will lead with the question of “does this bring me Joy?” If the things around me are not giving me Joy, then what are they giving me? Pain, disappointment, unfulfilled dreams?
Things and people. All swirled together in a pitiful stone soup, I will never be convinced it will taste good. As a result of cancer, eating is the most unsatisfying act to me. Perhaps the type of nourishment needed can be found from other things besides food. What those things are for me will be determined based on my search to finding and recognizing Joy, and what a relief to know at least one of those things included is my soap. ~Paula