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Blue eyed fear

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I am sitting in a doctor’s office. That is far from new for me. But I am not the patient. I am the cheerleader. I am the supporter. The patient, my support system, the love of my life is wary. His eyes are dull. He is fearless every day, today he is afraid. I cannot fix it. This is new to him, the prep, the wait, the repeated forms and questions. The IM antibiotics and more waiting. The procedure still to come. The stoicism. I ask him if he wants me to be there. A cock of the head and a meek OK. His look confused as why would I want to do that? I smile the biggest smile I have. I love him. This is so easy for me. I am a caregiver. It is natural, all mushy hugs. I stifle my fears, my illness and my pain to be here. Narcotics help. But truly, Love makes that easy. Why is it so hard for him to understand? We laugh at the medical assistant, her warm, effervescent personality a scene from All in the Family. We wait some more. And We wait some more. I am so used to this. He becomes more uneasy. I notice it takes forever to read the same page in the magazine. I place a reassuring hand on his knee. I make no promises that all will be OK. We both know that remains an unknown at this point.

I realize that years of emotional wariness and upbringing has taken its toll. He does not do hearts and flowers. He does brass tacks. Hard and sharp. We wait some more.

Death an dying, Fear, Life, Pain, Soul, Uncategorized, Yearning

Pondering

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I sit in the peaceful quiet. A cricket rubs it legs together making a late August appearance. My emotions begin to flicker free from the darkness. An uneasy nervous clench ripples through my gut. I think about my next therapy session. I have entered into a contract with myself to live a life worth living. An exploration to live a more pleasurable life. A more peaceful life. A life to smooth my roughened edges. A life for me. I realize every time I see one of my physicians I begin to feel like I am walking on a tightrope. My emotions rise to the surface like a bubble in a boiling cauldron. I focus my thoughts on my next session. It is painful to take the risks to sooth one’s soul. I will talk about those fears. For to be open to pleasure you need to be open to pain.

Magic words at every doctor’s appointments. “How do you feel?” I used to make piles. Each system I could identify in robotic fashion. Every exam, I could shed myself into a gown comfortably numb. Today I can’t answer with any clarity. The set of safe, rote words are no longer existent. The answer in truth is a muddy I don’t know.

Why is this happening? Where are my answers? Why do my fears take my attention? I sort through. My health is frankly lousy. My blood vessels are like old city water mains dry and crusty. The pain requires work to be controlled. Instead of stop, drop, roll it has become stop, writhe, meditate. The prognosis grows ever more lousy. My ever on brain has now networked to balance 5 other lives other than my own. Torn in multiple directions my thoughts run. They are a violent frenzy. How do I feel? And there it becomes clear. What do I want? What my mind and body crave? What do I need? How do I feel? How life is one thing and in a heartbeat becomes something else. How my desire for peaceful relief brings all of me out of the shadows. Where this story will go I do not know.

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QUOTE OF THE DAY: Tea

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dshewey's avatarfood for the joybody

TEA

“At the Tea Garden”

My friend and I mull over the teas
displayed in square jars
with beveled glass labeled by type.
Each name seems part of a haiku:
“After the Snow Sprouting.” “Moon Palace.”
“Mist Over the Gorges.”
I’m drawn to green teas
with unoxidized leaves that don’t wither,
hold their grassy fragrance
like willow under snow in winter.

The proprietor offers real china for the Chinese tea.
Animal bones, fine ground, give whiteness,
translucency and strength
to the porcelain that appears delicate,
resists chipping.
The rim of the cup is warm and thin.

My friend’s lips are plush: her lovely
mouth opens to give advice I ask for.
We talk about memory of threshold events,
like a first kiss or a poem published.
She can’t remember…

I tell her about my brother-in-law’s
chemotherapy—his third bout of cancer.
He wants his family to put a pinch
of his…

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Pain

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The little white pill is so appealing. My bones burn and ache today. My face itches with a rash. My Lupus is rearing its head. It is vicious. It takes no prisoners. I swallow the pill and follow it with a cold drink. The water stings as it drips down my throat. I laugh to myself as my blood work is the best it has been in 5 years. My recent cat scan is a different story. It is so pretty. My blood vessels sparkle on the film. Calcification. My blood vessels are hard and brittle. A time bomb waiting to explode. One piece breaks free and my time on earth ends. One more reminder that the clock is ticking. It hurts. The wave of nausea now comes from fear. Fear of the pain?

The pain is also a pain deep in my heart. I sat beside my child. Mom I read that all that it takes to keep the Lupus away is activity. Keep active. I smile, my child is trying. My heart burns as I wish it was so simple. I thank my child for the advice. I resist the temptation to educate as my child needs to believe in an easy solution. I sigh and suppress the tear with a wipe of my hand. This is pain. A pain no drug will fix. My children are suffering. Why does it have to be so difficult for them? They are watching mom ebb away. They need me and I need to live. It is harder. I am tired and weary. I hold on to the beauty and pleasure that life brings. I try to stem the annoyances generated by my children’s inability to lift a finger or pick up after themselves. They need mom to appear normal. These tasks once effortless are now monumental. I continue to play the hand that is dealt. My deck appears to be short a card. The game seems rigged. The pain is searing,

My eyes are so heavy. My head aches. The ligaments and muscles and tendons cannot bear the touch. I force myself to my feet. I must keep moving. I run from the pain.
I

 

Arousal, Death an dying, Feminity, Life, Uncategorized

Running on Empty

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I am tired. Not just the tired from working hard. Not the tired of sleeping to little. Just tired. The shell I reside in is no longer maintaining its luster. I hurt. The pain pills barely touch the edge. Monday I will ask for more and stronger. It’s not fair. I am angry. My tools are dulled. My meditation is weakening. My body desperately craves relief. I fight with the stupid. The endorphin rush buys some time. I feel like a fencer. Thrust and pare. My blade powerful enough to eviscerate my wounds. Empty my soul.

What do I want? Will I get that before my last breath? Is it selfish to want? I say no. How do I get it? I grab for it. Trying to do it by living and not sounding like I am on a farewell tour. I want to live. My head is exploding and I dictate this as the waves of nausea crash over me. I want the waves of the sea. Frothy salty waves caressing my body like firm fingers. My flesh needs to warm to the touch from a caress instead of an internal firefight. My bones ache beneath weakened muscles. I want to be carried away onto soft, fluffy pillows supporting me. I turn my head and the world spins. I feel dazed and confused. I want to feel the spin of ecstasy from pure desire and fulfillment.

I close my eyes and let my meditation begin. My mind drifts to me….

 

 

Arousal, Death an dying, Feminity, Life, Lupus, Uncategorized

It is just a piece of paper. Three simple letters.

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Derailed. My heart pounded loudly in my head. More loudly than it usually did. I felt a wave of nausea and suddenly faint. He watched my face I took a deep breath of my inhaler. My reaction was deep and visceral. I stared at the white 8 1/2X11 inch paper in my now shaking hand. I wanted to scream but my daughter was outside in the waiting room. It was not a surprise. We had just looked at my latest blood work. We just discussed how hard it was to for me to breathe, how my blood pressure was 102/58. How my kidney’s were dumping more fluid than I could keep down. How I was lymphocytopenic and with a high neutrophil count from the chemotherapy and steroids. How the Lupus symptoms refused to abate, the inflammatory markers were high, my vision was blurry, my joints ached, my head pounded…But I looked great. He smiled at me as that is the running joke in Lupus. You look great the sicker you are. I thought I was at peace. Yet now I felt destroyed. In my hand I held an official New York State Do No Resuscitate Order. I had held this piece of paper countless times in my career, this time it was mine. Basically it is in my best interest if my heart stops to not intervene. The disease Lupus was trying to kick my ass. My warrior body was kicking back and Robin in the middle felt caught on the battle field. And somehow this white piece of paper and three letters was flipping me upside down.

I rode home staring out the window locked in thought. I began the internal mental battle. What the fuck was I doing. A piece of paper was not going to sink me. Getting out of the car and the heat and humidity waived its miserable flag and my lungs seized. It certainly was not six hours from the last two puffs. I sucked in two more hits from my inhaler, shaking my head at myself and how many times I silently criticized patients for not following their doctor’s directions. I crawled up the two flights of stairs to my room maintaining my game face until I was alone. The floodgates opened. Sleep finally took over.

Three hours later, I awoke to the shake of a hand. “Are you ok?” I looked at my husband with tear stained eyes and muttered a perfunctory fine. He knew I wasn’t. He waited me out. An hour later he held me. I wept.

Why? Why did this stupid piece of paper unnerve me so? My throat was tight with pure raw fear. Not one solid ounce of bravery. Nothing had really changed. I was just as sick or as I was working to reframe my thoughts well five minutes before I looked at that paper as I was now. I was vital and alive. I closed my eyes and dug into my tight lungs and took a deep breath. I reached from my pilot light, to my cauldron to my heart looking for the sense of calm. The warmth that was so openly accessed Sunday night with wonderful women was fighting me. A curled into a ball and rocked and breathed a little harder and deeper. I reached for a memory and the warmth burned. My body reacted to my femininity instead of illness. I still ached. The tears still fell easily. But I started the inner plan to dismiss the power of a piece of paper. It was not my finality.

Death an dying, Life, Sex, Uncategorized

Let’s love your body into staying.

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Fourteen days ago I began a further exploration of me. A form of my own palliative care. A way to stem both the physical pain in my body and the emotional pain. Modern medicine is reaching its limits. I am learning to reframe my disease as a disease and not as my body. I am working with Pamela Madsen (PamelaMadsen.org). A sexuality and fertility educator. A woman I instantly felt a connection with.

I complained to her that my sexuality, my sense of arousal, my ability to orgasm was dimming with my mind. The fog that consumed everyday things like did I take my medication, where did I put my phone, the name of friends and family was also fogging me. The disease has stolen so much, I was not willing to let this be stolen too.

And so it began. Meditation, Explaining to me the link between my pilot light, those delicious warm feelings of arousal, the tingle between my legs and my heart. My pussy connected to my uterus, my cauldron and through the golden thread to my heart. A started to look for what I thought was lost.

Cupping my genitalia through my clothing I began a slow rock. The heal of my hand against me, pressure firm but not hard. My breathing slowed to the point I had to be reminded to inhale. Slowly I felt that familiar warmth and engorgement that was so elusive.

And then the emotional floodgates got pried quietly open. “Who am I?” Over and again. Thoughts I never ever thought about. “Who am I?” Mother, Wife, Patient, Giving, Wicked, Words came out and the tears began. I continued to rock and breathe

“What do I want?” Now I felt raw..I realize that now, at the moment the emotion poured. Hand on heart. My rate slowed and I rocked. The words poured. Breathing again and rocking and more tears.

With Pam’s help I slowly came back. My eyes opened and some of the pain was dulled. I felt “whelmed”. My circuits do work. I need to reframe some of my thoughts and love my body into staying.

I will work on maintaining the circuit. Learning to soothe myself by maintaining my level of arousal. I must learn I deserve this. I was surprised at the level of emotion that poured from me. The work is just beginning.

 

 

I wrote this piece after my first meditation for me. Why did I keep it a secret. Was I ashamed to admit I am that sexual vital creature? Was I embarrassed to be that woman with yearning sexuality? The answers were yes and yes. Last night I attended a seminar with other women. We dipped our feet into what I had done in session and over the week. This was not new to me. I could do this with other women. And even knowing every time at home the door to me opened and revealed more of my I was ok. I watched the tears fall from the other women, I watched one woman encounter profound physical pain, another felt relatively stilled and still another felt distant and watched from within. I on the other hand felt on fire. My skin literally burned to the touch. My friend and Pamela asked if I was ok as I was transformed from the woman who entered the room. I flushed with a life force I had not felt in years. The warrior is fighting. She carried a torch. A life force exists.

Today I open this piece. I share it for me. The embarrassment and fear gone. My warrior slept today. Exhausted but comfortable. Soothed by my sense of arousal. I am peaceful and alive.Amanda Tilton Sea Cliff1

Death an dying, Funeral, Life, Sex, Uncategorized

The Plan

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flrSurreal. The sun shone brightly. The birds pulled the grubs up from my front lawn. The mailman delivered the mail. The school bus dropped kids off at the corner. The lady who never picks up the poop after her dog walked her dog on our neighbors flowers. Life moved forward.

My husband and I walked into the funeral home. I’ve known the funeral director for years through our town and other connections related to saving lives. Now I was there to talk about my end of life. I sat across the table from my husband and he was frozen and numb. He was burying me already. I am alive. The funeral director and I exchanged war stories as easily as I exchanged the demographics of my life and my death. He was frozen and numb. I am alive. My mind scattered. I walked through the casket room. I am alive. He has me buried. I want more in my life. Anger welled within me. I picked the simple Oak casket. I am a Jew. I want a Chinese menu funeral. I watched him. We discuss a viewing that is not a viewing. We work a way to not be embalmed but to have the no view viewing. He tells the Director this matters to me. He knows what matters to me dead. But I am alive.

The shroud. My mother was very funny about it. She was not going to be buried in a farkakt shroud. She left a Ziploc bag including her panty girdle. She was buried in a simple black dress. My dad was buried in a shroud. I am looking for a white linen dress. He knew that too. I am alive.

I want some flowers, yes I know it’s not Jewish but I want them. I want stories. I have an appointment with a Unitarian minister. My sister wants a Shiva. So we will do that too. He knew that too. But I am alive. I want things now.

So as we wait to total things up. I scan through the floral book. No carnations, no gladiolas, no stands, no funeral vases, natural baskets and vases. He asks me to write it down. I am alive. I want to scream.

Prices in hand. We shake and agree to return with a deposit. This is surreal. I am alive.

We get home and he retreats again. He has me buried. I am alive. I want so much. I ache for our partnership. The human intimacy between married souls. I want life sweet and sensitive. I want life down and dirty. I still feel. I am alive.

I will not retreat. I want to scream. I am alive.

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Tick Tock

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I hear the clock ticking. My eyes are like lead weights. Red rimmed with exhaustion they blend into my red cheeks. The rash itches. I stare in the mirror and see the wolf. He is here today. My body is battling so hard. My head swims. The pain pounds behind my right eye. My vision is distorted. Thinking hurts. I hear the clock ticking.

The news is playing. A report about male fertility…a clock ticks.  A report about the Stanley Cup…a clock ticks. The last day of classes…a clock ticks. But not my clock. I hear a clock ticking.

My neck and back burns. I feel the invisible blade as it weaves its way between my ribs. It hurts to move air. My heart pounds. My legs are weak. Emptying the dishwasher results in a fine patina of sweat on my brow. I am angry. I hear a clock ticking.

I crawl back to bed. My warrior body exhausted from taking a shower. Sleep easily overtakes me. I awaken my cat curled against me. Her warmth soothes my pelvis. I stare into the dim afternoon night. I hear my clock ticking. My body fights, its spears are drawn. I want to smash the clock into smithereens. I am angry.

Nausea greets me. I can taste my morning pills. I swallow three more pills. Two for nausea and one for pain. The inhaler takes away some of the fear. My husband checks on me wanting to “DO” something. There is nothing to be done. I smile a fake reassuring smile. He hears a clock ticking.

I curl into a ball. Gently I rock to soothe myself. Confronting mortality is too much now. Just like the small child. Today I am her. The lost little girl. I cry and rock. My head pounds. My thoughts jumble. I fall asleep yet again. I hear the clock ticking.

I wake and run to the bathroom. Well crawl. The lupus is kicking hard. My warrior body is alive and fighting. My nerves are electricity. My emotions are  raw. I am angry. I am sad. I breathe the thick air and it is unfriendly. I fall into another sleep. I hear the clock ticking.

Evening comes and I force in some food. “You have to eat” my two oldest children cajole. A warm grilled cheese and a vanilla milkshake soothes the burn in my gut. I wish it would salve the ache. I am brittle. I need. I need to be selfish. I want so much more. The clock that is ticking is mine.