The Knife - Finding Spirituality in a World of Pain
I'm currently reading the book Midnights With The Mystic. The author is successful woman who self-professed failure at spiritual fulfillment. Her lifelong goal has been to achieve enlightenment. She tried everything - yoga retreats, trips to India, seminars with yogis and gurus - but the affects were short lived. After decades of disappointment, she gave up. Kind of. It wasn't that she didn't still ache for fulfillment, she was simply exhausted from disappointment. Ironically, it was when she gave up searching that her spiritual destiny fell in her lap.
While waiting for a plane, she noticed a young man meditating. Compelled to engage him in conversation, she learned that he studied under a mystic named Sadhguru. This book is about life lessons learned during her conversations with Sadhguru.
During my treatments at UCLA, I have learned a Multi-disciplinary approach to pain management. Medication alone is inadequate. One of the most important tools for pain management is pain psychology - using the power of the mind to combat pain signals to the brain. This can be accomplished many ways, through therapy, meditation, reading, learning, engaging in activities that help break the cycle. This can also include spiritual studies and disciplines.
I always liked to think of myself as a spiritual person. My childhood was littered with experiences that would be considered supernatural I suppose. Some quite frightening. Then at the age of twenty-four my mother and I both experienced a visit from my grandfather after he passed away. So, I have absolutely no doubt whatsoever that another realm exists and that life goes on even when our bodies don't. This is one of the greatest blessings of my life. But accessing this spirituality during my challenge has not been that easy.
In the beginning of my challenge all I could do was call out to God and beg for relief. I prayed. My parents prayed. My friends sent prayers. But little changed. In fact, my condition only seemed to get worse. Ultimately, the result of prayers was not what anyone expected, but in essence had set up the foundation for what has become the greatest spiritual awakening of my life.
My mother would hang her head in dismay as to why her prayers were not working. She was sure that she prayed so hard, she believed in God so deeply, why was I still suffering? How could her God allow her daughter's agony to endure?
In Midnights With The Mystic, the author describes an interaction she had with Sadhguru the first time they met. She asked him why - after so many years of trying - she still had not found lasting enlightenment? His answer cut to my core. He said to imagine your mind as a knife that is coated with cake. Then try to use it without creating a mess. Until the knife is clean and without clutter, it will be impossible. The metaphor for spirituality is that we all come to this journey with so many pre-conceived notions planted by society, that it seems impossible to discover true enlightenment, which can only occur when you realize who you truly are as an individual apart from ego and personality and everything your family and friends have imprinted upon you from birth. You need to clean off the knife.
Well, no wonder this is so hard!
During my challenge, when the world prayers seemed unanswered, was when everything I was seemed to be stripped away from my bones. Everything I believed in was shattering. My identity dissolved into pools of tears on my sheets. Yet, because of this , my knife is finally clean.
Before all of 'this', seeking true spirituality was akin to banging my head against a bible. As much as I tried to follow the discipline of my Catholic upbringing, I just could not accept too many of its doctrines. So I opened my mind to endless avenues, trying to stuff my brain with new methods of practice and theologies but nothing felt genuine enough to 'stick'. So I stopped trying, gave up, and figured leading a life with good intention and loving those around me just might be enough. Little did I know, I wasn't too far off.
Maybe being stripped of everything we think we are could be the beginning of everything we are meant to be?
I don't know what this spiritual journey will bring, but so far it is proving different than before. What I learn is absorbed. My body and mind respond when I listen to music and sounds that accompany teachings. Meditation is no longer just a closing of the eyes accompanied by monkey-brain - it is an opening of a gate to a world that was always there. Call it Buddhism, but I dare not give it yet a name. One thing I do know is I have finally found a path that is my own. It does not belong to anyone or any place outside of who I am. Who I really am. This process may take a very long time. But at least I know I'm on my way, protected by a knife that i have worked so very hard, to clean.
Broken Words
I now have spinal cord stimulator leads along my entire spine. Well, almost my entire spine. My tailbone feels a little left out, as does the base of my skull. I consider them virgin territory. As for the rest of it, this has been the most painful recovery from any surgery I've had to date. During this time, my therapy dog, Reggie has undergone surgeries to remove malignant tumors along his back and side. Our backs mimic one another with trailed staples - taking the dog looks like its owner thing a little bit too far.
Blogging has been therapeutic. Each procedure or surgery has left me needing to explain the process for others, or purge the experience in words - somehow diluting the impression it left on my soul. But this last time, something shifted inside. After surgery the pain level was so high I had little left to say. Words evaded me, lurking behind thoughts too far away for me to grasp. I had the feeling you get when you have studied a topic for so long that you wonder how much could possibly be left to learn, or to share with others. How much more can one human being go through before words are so fragile they break into letters and randomly fall from the sky. I tried to pull them together - to write about the addition of more leads into my spine and drilling of my vertebrae. I wanted to describe what it's like to lay face down on an operating table while surgeons insert metal wires through your skin without anesthesia. My fingers grasping into the sheet and tears flowing into a puddle beneath my nose. How the anesthesiologist could not find tissues, explaining they had to keep me awake so I could tell them where I felt the electric currents in my spine before I went to sleep.
I wanted to write about sleep.
I wanted to write about something different. About how every night in every dream I walked and ran and could only vaguely recall a time when the only coats I saw - were white.
This morning I scrolled through my Facebook feed - the first thing I do each day - and stopped on images posted of an event with many of my friends. In that moment, I felt sad. In that moment I resorted to my childhood when jealousy made me quiet. When I turned a shade of green. Perhaps this might be a good sign, that a feistiness still lurks beneath; a longing to still belong. But I don't like this feeling, because it is much like the feeling of being left behind. And in that moment I did not like myself. I wondered who I am. Of course I can't control the fact I'm unable to go anywhere. I should be happy for loved ones enjoying life!
When dealing with a chronic condition, life sheds many skins. Dinner and a show is a picnic on pillows with our children parading a fashion show in A Capella song. Drinks come with bendy-straws and lunch with the girls is to-go.
Don't get me wrong. Treasured friends visit and have gone above and beyond all measures to make sure I feel loved. I could not be more fortunate than to have the support system I do. So, in moments when my I feel the self-pitty sneak in, I need to remind myself that this is not the end. I am so close to understanding what my future will be. This last surgery should be the final straw in this camel's broken back. Healing from this one will take about six months, and therapy begins again. I can now take gentle steps for a couple of minutes at a time. If I bend forward and face the floor as I stand I can actually bare a stride. It may look funny, but to me it is a sign. That perhaps one day soon I will be posting images from the outside world with friends. Until then, there is a very exclusive, invitation-only party with my dog I must attend.
Soft Tissue Sarcoma 101
"Mommy, where are the posters of dog breeds, and all the pictures on the walls like at our vet's?" My daughter's eyes scanned the walls. I explained this is not a fun vet to see. It's a specialist that people only go to when their animals are too sick for posters of breeds. She continued to play a game on my phone, squealing gleefully at the dive bombing of alien invaders. I imagined each explosion the disintegration of cancer cells beneath Reggie's uneven skin.
The last two surgeries have left concave bowls of excavated tissue beneath his fur. The girls pet his back and pucker his skin as they get to the surgical site - a putting green of velvet baby fur left behind from a razor's edge. They pushed gently into the bubble of flesh at the end of the scar where sutures lurked beneath, then watched the skin regroup. A game of sorts that Reggie did not mind. The pain is gone for now. I tried to explain the layers of muscle and fat, and how the doctor had to stitch below the skin and staple it on top. Staples are out now, but the puncture wounds left over from the prongs make him look like he could spring a leak at any time.
The oncologist walked in. A gentle but confident presence. She offered her hand with the expression you only find in places you don't want to be - An apologetic raising of her eyebrows before any words could be exchanged at all. I wondered how many times she said hello this way. I imagined what it must take out of you to specialize in veterinary oncology and greet each new patient with regret. Regretting they had to meet you at all.
She took him back for weight and X-rays. The good news was he lost two pounds. Those who know Reggie, he is what we call my little tater tot. A husky long haired dachshund who was supposed to be a miniature. Until he grew to nineteen pounds. So this was good news. Then, better news. It looks as though the cancer has not yet spread to his lungs. Soft tissue sarcomas most often enter the blood stream and then go directly to the lungs. X-rays are not 100%, as microscopic cells could be present, but I chose to look at it as a positive in what has been a pretty trying month. However, upon a call to my vet back home, this doctor learned the surgeon who performed his second surgery never tested the tissue removed from the site. He said he thought he saved it, but upon inquiry discovered it had been thrown away. Thrown away. I just had to say it again to make sure I heard myself correctly. My jaw hit the floor. My eyes filled with haze. She allowed me to stir. Then continued.
The prognosis is that Reggie needs a third surgery plus CT scan, performed just prior to surgery and after anesthesia, that will tell exactly how deep to go into the tissue this time and how far it has advanced since his last surgery. During surgery they will assess the health of the tissue by monitoring it under a microscope. Certain tissues with cancer are visually recognized, but others cannot be determined unless viewed microscopically. IF this surgery goes well, the doctor feels there is a 95% chance he will not need radiation. Surgery will include a necessary two day post-op stay.
If Reggie does need additional treatment, this kind of cancer does not react as well to chemo as radiation. With chemo, he would take a pill every day for a year.
Radiation would be the likeliest avenue for this kind of cancer. It is an aggressive cancer as it develops a root system. So it can go deep and once it goes into the blood stream it goes directly into the lungs. It is a slower moving cancer, but that still just means it's a matter of months rather than days or weeks.
They will know once they do this surgery if radiation will be needed.
Radiation would be performed at another facility. Reggie would stay there during the week and receive daily treatments for a month. We would be able to pick him up on weekends.
I sit here tonight with Reggie's chest rising and falling into my arms. His trusting eyes closed for now, a retreat from visions of vacant walls. For now, some peace.
The Breath
Reggie had his staples removed today. A slight indentation has left puckered skin draped in an awkward ridge from his back down his side. Before we left, I felt the urge to ask, for the third time, and the third vet in that office, what his surgery results really mean? I understood he had two tumors removed. They told me the name of the soft tissue sarcoma and I've tried to stay off the internet, but it's really hard when that name has more syllables than a Mary Poppins song.
The vet looked at the surgery results and took a breath. I hate it when doctors breathe.
"They did not get all the cancer."
What? The first doctor said they did. Then I found out he didn't actually do the surgery. So then I saw the actual vet who did his surgery, and asked him to 'explain it to me like Dezi to Lucy. Talk to me like I'm five. I want it simple and clear. But without the accent.' He said, "There are good cancers and bad cancers. This is a bad cancer."
It was then I wished he'd told me in Spanish.
He explained that although it is a slow moving cancer, it is aggressive. He explained we are lucky because it is low grade. But I definitely should take him into an oncologist as soon as possible.
My head spun. When this vet took her breath, she made me lose mine.
It looks like they did not get all of the cancer. The margins were not clean. This means he will most likely need not only another surgery, but radiation as well. This also means there were cells left behind. The one thing she said for sure, was if we do nothing, the tumors absolutely will return.
With my own surgery pending for Monday, I find myself in a quandary. Tomorrow will tell much more when he is actually
assessed by the oncologist. So tonight I will curl up with Reggie wrapped in my arms, stroking his back over the ridges in his scarring flank. I will know that no matter what tomorrow's next breath will bring, I will be there for him - as he has always been - for me.
The Invisible - A Reflection on Faith
A friend asked me today how I go on when life seems so difficult sometimes.
It has been because of my faith that I didn't lose my mind. It is because of faith that there is meaning in all that goes so wrong, even if we don't understand it at that moment in time. It is my belief there is an afterlife, that our loved ones truly never leave us but are instead waiting behind a wall of air for us to join them again.
In very little time, I have lost the ability to walk, and learned how to mobilize again. Although I am still using a chair, I am able to connect with others on a level I could never before understand. In this short time, I lost my best friend of twenty years to cancer. A limb was torn from my body and blood spilled from the core of my heart. Yet since then I have never felt closer to God in my life. But why? How can I feel so close to what I cannot see? Because He is so close, His breath is buried deep within my heart, waiting for me to join my friend when my time has come.
Within two months, as I wait for my next (and hopefully final) surgery, my other limb, my dog Reggie, who has hardly ever left my side barring the operating room, was diagnosed with cancer. His surgery was swift and he begins oncology appointments this week.
Of course my husband is my rock, my children are my shade, and my parents feed me with evidence that love is pure. So when I have a day when the skies grow dark and my feet are clogged in mud, when I wonder if I can at all go on, it is the invisible that holds me strong. It is a knowing that life goes on, until I shed my earthly skin. So while I'm here, I try to exchange the darkness for the invisible light that faith lets in.
Is it denial to get me through? I don't think so, because denial just gets one lost in a storm of unanswered thoughts. Why would I sail at sea in a storm without a sale, or stand in an awe beneath the stars that offer a hint of where I am?
So I choose faith to get me there, to a place of peace where I can breathe when the burdens of life seem too heavy to bare, it's the invisible that offers me wings.
The Pump
I pull up to the pump with my scooter on its lift and my handicap placard on the rear view mirror. My heart started to beat a little faster. I was about to call for the gas attendant to fill my tank - as a handicapped person - for the very first time. I pull up, honk my horn and wait.
Handicapped patrons of gas stations are allowed to pull up to a pump and honk to let the attendant know service is needed. The little blue man sat patiently on the checkout window next to the hours of disability operation and service. At this particular station, their hours of disability service are 8am to 2pm on weekdays.
I honked, holding the placard in front of my face as I faced the window. I waited. But no one came. I could see hands talking from behind the register without a face. Do I honk again? I looked around to see if anyone was giving me the evil eye - wondering if my affliction was not a mobility problem so much as honkaholism.
Then I wondered how often this gas station actually has people come along who utilize the handicap service? Maybe I'll just honk again. Honk. Ok. Now I'm probably really annoying somebody. I am slowly becoming an abscess on the face of the rush hour pit stop. A young girl walked out of the cashier. I quickly rolled down my window and asked if she could let someoneknow a gimp was at pump four. She did.
Like a lemur peering around a tree, an older gentleman in a dark blue jumper assessed my abscess. Upon determining my gimpness was supported by sufficient evidence, he swung his frame along the asphalt approaching my window with reserve.
In one fleeting moment when much was being deciphered by both parties: Does he think I was being rude or lazy by summoning his presence? Will he be nice?
It's funny how such a small gesture can be so loud.
As he pumped my gas, images flashed of a time when everyone had their gas pumped in the service lane. It was a more innocent day when my brother and I would sit unbuckled in the back seat, the sweet smell of salt water stuck to our skin. Dad would sign the receipt against the steering wheel and replace the pen on top of the clipboard to hand it back.
It's not very often we experience service nowadays. But then again, how often does the server receive gratitude?
As I handed the clipboard back to him, I couldn't help but smile. Because I was grateful. His eyes stuttered as they began to look away but came back to mine for more. More gratitude, I suppose. He smiled back. The weathered skin around his eyes creased into a softened gleam. In one moment, in one simple choice, a human connection was made and I was reminded how very human we all truly are. How all of us run (or roll) around all day searching for meaning in our lives - when a taste of it it is closer than we ever imagined - somewhere between service and gratitude with the passing of a pen.
Signature Here
His voice muffled beneath his mask as he sat in the lobby's couch. Grey strands of a life long-lived peeked out from beneath his Dodgers cap. A youthful lid for a frame too frail to swing a bat. He was talking on his phone to someone asking for his personal information.
Medical buildings look and sound the same after a while. Only the people change. And even then, we all start to look and sound alike. Limbs bent into chairs that travel down the hall. Heads slumped between shoulders filling out paperwork pens on a leash that say 'signature here'. Elevators filled with uncomfortable stares. Bathrooms with keys attached to artificial bones. Waiting rooms without patience and coats so white they burn the skin.
But with every history that passes through these walls, is a story never told. A person the doctor will never know. This is what I thought as I passed the man in the lobby talking on his phone.
It was his date of birth that caught my ear. 1938. My parents were born around that time, but somehow it sounded different from a man I did not know. Images of pending war crept across my mind. I wondered what his parents thought when he was born - what kind of world were they bringing this child to? At two years of age, World War II brought change. Did his father go off to war? Did he return?
Have you ever stopped to think about how much that can matter between a building entrance and an elevator door? I had not, until yesterday, when this man made me want to know more.
We pass by so many lives each day. Worlds built and shattered, hearts filled and broken. Bridges crossed and bridges burned behind eyes that have seen too much.
Yet in that fleeting moment was just a girl in a chair passing by a man on his phone with a form he must sign with an X next to 'signature here'.
The Ten Percent
The metronomic pelting of water against my skull summons a random thought. That that is what I must blog. A blogger should post every day. My mouth goes like a duck's arse, so it is usually not too difficult to find things to say. But the issue is, is what I write about worth saying at all? The truth is, I have absolutely no idea what I'm going to blog about each day until it hits me, in the shower, and I have the razor cuts to prove it. But the thoughts this past month have been so daunting, it has almost been too difficult to write. My best friend lost her battle with cancer. Then, yesterday, my other best friend, my dog Reggie, who has pulled me through two solid years of collecting the shards of my own shattered life, was diagnosed with Myxofibrosarcoma. Evidently I missed the memo that this was Cancer Awareness Month.
The vet said he feels we caught it in time. The surgery to remove the beaded tumors I had played with beneath the padding of his fur are gone. For two months, I felt them growing larger. They started out as one tiny cyst-like ball I ran into with my palm as I stroked his back. It quickly began to grow larger. Within a couple of months there were two side by side and we knew then this should be looked at. My vet said 90% of these things are benign and perfectly harmless, but we could remove them and biopsy. So we did. Only a 10% chance of something is usually a comforting thought. But not this time. This time cancer was too close to my skin.
I have never held a phone to my ear and had a doctor say a long and complicated word with sarcoma at the end. It didn't matter what the first part of the word was, or if I could spell it correctly. It was the sarcoma at the end.
The odds are pretty good that Reggie will pull through just fine. They say there's only a 10% chance it will come back. But we have already been the 10%, so somehow the odds are not as comforting now, but they will do.
Life is what it is. There is so much love to live and fur to stroke, balls to chase and wet sloppy kisses to feel across the cheek.These are my focus now. As I watch his stitches dry into an air of uncertainty, his eyes search mine for comfort, and I search his for hope. We are bonded by something that nothing could ever take away. And that is enough comfort for now.
Life 101 - Indie/Folk
My CD is finally bringing in some income. I can't believe it. Each of these songs I recorded as a single mom in a small studio. I couldn't afford musicians or a lot of studio time, so I had to play and sing at the same time to cut down on the hours loll 15 years later it is coming to life. Whodathunkit. Songs are on iTunes as well ๐ www.cdbaby.com/artist/micaelabensko
All items are written and copyrighted by Micaela Bensko unless otherwise noted. All images are property of Micaela Bensko. Unauthorized use is prohibited without permission.