Category Archives: Life

Emptiness, Family, Fear, Life, Lupus, Medicine, Pain, Police, Rape, Soul, War

Restlessness

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I sit quietly alone. My eyes close and I begin a meditation for my day. I cannot quell the mental interruptions. An air of restlessness fills me. I breathe. Focus on my breathing, but I cannot. What is filling me with this uneasiness? Again I breathe. My lungs ache. My soul aches. My head pounds. My heart aches. What is it? The seat of my soul screams in pain.

I open my eyes and stare into space. I feel the world. I cannot shake these feelings. Ferguson, Staten Island, Texas, all deaths at the hands of police. 28 years a cop’s wife flies into perspective. I am afraid for him. It has become open season on police. He works as a leader of a group of men who respond when the police call for help. He deals with the craziest, angriest, and most dangerous. He has stood on the remains of the world trade center, has crawled into crushed cars to calm and rescue the injured and trapped, he has forced his way into homes of the deranged threatening to take their own lives and those of others. The list goes on and now I am afraid because it is again politically correct to hate cops. I am afraid.

Two little girls are kidnaped in a small town in NY. They live a simple life. And in a heartbeat it will never be the same. Two monsters take them into a world of darkness by sexually assaulting them. I have two daughters. I am afraid. College campuses catch the news media as sexual assault complaints rise. The debate about morning after remorse vs criminal act continues. I am afraid. Nothing has changed since I was in school. My thesis about the dirty little secret of date rape is as pertinent today as it was then. I close my eyes and feel the evil touch of a man who I considered a friend. I still cannot hear “When doves cry” without wanting to vomit. I have two daughters and I am afraid.

The world is such as small place. I am trained as a research biologist. Ebola and an entire group of other diseases are just a plane ride or gene mutation away from becoming a problem here. I am afraid. I have four children. The keepers of the science have made deadly mistakes in the care of the diseases they study. By the grace of god we have stayed safe. Carelessness will be our undoing as hours are long and the caretakers are reduced in budget fights. I am afraid.

Evil continues to fight in this world. Israel vs. Hamas, Tribal wars in Africa.  Groups so passionate in their beliefs that the murder of children is tolerated. I have four children. I am afraid.

Watch any news show and you see ignorance. People who believe only what they hear. Studies show the more humans hear something, they take it on as their truths. Media obstructs truths. War is ugly, people die. It is not a sanitary process. People fail to follow lawful orders of police. Life is not a law and order episode. There are consequences. Children are disrespectful of teachers and teachers are unable to discipline. Parents rule the schools. Learning disappears. I am afraid.

The fall season is soon upon us. School begins. Life continues its circle. The feeling in my gut begins to swallow me. I feel hollow. My heart beats fast in my chest. My mind races. Breathe. Slow down, Concentrate. Breathe. Fear. Breathe. Why . Hush. My body aches so. I close my eyes. I breathe. I am afraid. 

 

Death an dying, Life, Lupus, Pain, Soul

Constant Reminders

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I woke up shaking and cold. Opening my eyes was a difficult task. The first deep breath of the burns my lungs. Turning over I felt a searing ache across my hips and down my legs. I knew before I saw my face. There I staring in the mirror, the ugly red bumpy butterfly is visible. I rub my face in with the steroid cream and notice my chest too has erupted. It gets a share of cream. So damn sexy.

I return from the bathroom and sit on my bead again. I close my eyes and forced another deep breath. I need to put this in its place. I must send it into the corner. A corner where physical pain sits on a stool getting its grove on. A corner far away from me. I stretch my neck and my head spins. Feels like I’m drunk with no benefit of booze. Shit. This sucks. Force it away. An invasive thought crosses into my mind. “Go back in the corner.” I summon up my inner voice and yell. I pay attention to my breathing. In and out the air moves. My mind begins to clear. Like the red sea it parts into two sides. The pain is screaming, the lupus is active. I cannot soothe that without the little white pill.

The emotional. That is where I can ignite my pilot light. I breathe in and out again. I need to remember to breathe. I focus on me and gently rock. I begin to feel warmer. My mind just focuses on the sound of my breathing. I focus on me, my body and mind. I ignore the sounds around me. I listen to the sound of my breath and placing a hand on my chest feel the beat of my heart. I let myself feel my arms around me, an embrace from within. A tear drops from my eye. Wet and salty it trails down my cheek. I slow the rock and open my eyes. My pain is still there but I feel lighter and emotionally less burdened.

Death an dying, Life, Soul, Yearning

Boundaries

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How we answer life’s questions defines us all. What are your boundaries? What makes you uncomfortable? How did you get there? What choices do you make?

I sat with two of my children tonight. What is a boundary for one is free and easy for another. Interesting since they grew up in the same home. I find this true in adults too. A group of people all from the same place have such divergent plains. As we age do your boundaries change. Where do you go.

As my time clock begins to tick more loudly my boundaries are growing by leaps. Is it the fear of nothing to lose or is it a desire to feel new? What do I want has begun to drive me. It is not monetary. It is emotional. It is shocking even to me. As i peel back my layers it is amazing and to some daring. To me it is as vital as the air I breathe. Who am I? Now that appears to have easy answers especially to a woman who as some would say was always blunt and clear. That is true for me to answer for others. It is not so easy when I have to answer for me.

I am beginning work with two incredible souls. One is helping me find my words for me. The permissions to explore my boundaries. The other is there to help me push those boundaries and let all the pain go. Fears are supported and acknowledged and eventually placed on a bench beside me. They are part of me. Each session leaves me physically spent as there are not reserves in my tank. But each session also leaves me lighter and more at peace. It leaves me more alert and creative despite my physical brain failing. And they leave me more alive in my failing body. The tears that often coat my face wash away the heaviness I have carried for years. They soften the hard edges. They help me learn to live with all my pieces.

I write this to share my lessons. I am learning to face my fears and hear my inner voice. I appreciate the pleasures the world has for me. I am no longer afraid of my boundaries. Are you?

Death an dying, Emptiness, Feminity, Life, Lupus, Pain, Soul, Yearning

Phase

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IMG_0741

The moon is in its glorious fullness. Bright and radiant beginning a new quest in the cosmos. What phase am I in. I am oscillating. I am in a fearful place. I do not expose this to many because it is a cold and lonely place. But I have learned when I share these fears it lifts a bit of my veil of darkness.

I am now wracked by a constant deep dull ache in my side. It is complicated by rhythmic excruciating pain that comes in waves. Add nausea and diarrhea plus chills and sweats. A stone in my kidney and another in the IVJ probably will beckon a more invasive surgical procedure on the horizon/ A day in the life of my physical being. Sadly this leaves me un-phased. The further physical nightmare continues with the incidental pictures on the scans that shows the effect of the lupus and the steroids causing osteoporosis, and the frightening calcification of the vessels in my pelvis and aorta that bodes a miserable ordeal in my future. A time bomb ready to explode, Technicolor on a scan. I wonder why something deadly is so pretty. It is starting to phase me.

But the emotional journey I am on. This so phases me. I am working very hard to find a place of peace to live the rest of my life however long I have. This is more painful than any physical pain I have endured and continue to endure. In the depths of a session working with my therapist to discover life in my body three words turned my world upside down. “I have you” murmured by him as I let go of some emotional ache ripped open a huge gaping emotional wound and started a stream of tears that as of today flow like a sparkling steam down my cheeks. Is that what I want? A resounding yes in the seat of my soul. An intimacy that defies all other pleasures. A need so deep that it explodes through my head. Add a conversation with my mate as I go through yet one more ordeal. .”This does not phase me anymore.” An indifference that breeds such a feeling of disgust and hatred yet I generate forgiveness for that is the only right thing. I want “I have you.”  A phase of my life so yearning that it is unbearable. The emotional need generated by the physical failure of my body? No the emotional need of being a woman alive.

A phase I enter as a woman who deserves the “I want more.” A hand to hold, a touch to my cheek, a hand moving a loose strand of hair behind my ear, a gentle wipe of a tear, a set of arms around me, a gentle pain relieving touch, an intimate touch is what I need, what I want to make it to tomorrow. That phases me. The missing link I feel as my body tries to sort out the misery.

As the Lupus gets mean, and she is. I can fight the physical. That constant voice in my head running my case thanks to a wonderful man’s help is being sent to the bar for a couple of cocktails. But the emotional, that is the tough phase to deal with. To let go is the equivalent of nirvana. The joy of the intimacy of release for my peace is the phase I try to live in. To aspire for to be alive as my body slowly dies.

Death an dying, Emptiness, Family, Life, Pain, Soul, Yearning

Living well while dying or just plain dying well sucks.

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I graduated today. Not in the sense that most people do. I graduated to narcotics. I looked at the CVS bottle, now in the geriatric bottle because my hands cannot handle the twist top filled with the little white pills that fill the news. I sit here and cry another bucket of tears as I pop one into my hand and swallow. I pray it works to take away the pain, I am ready for some relief in my life.

Relief, Ha what a concept. I am tired. The armor I have carried and displayed so long is pock marked with the hell of the war. The disease, I will not even give it the notoriety of its name is wining. Not only is it debilitating me further, today I realized it claimed the life of those I keep dear. In fact they do not read what I write, nor ask or bother with how I feel. Oh yes a proforma are you ok. The fucking answer is no. I hate this and I want to scream and cry and no one in my fucking family especially the man I am married to for 25 years, the man who I have loved forever, has the balls to let me cry. Somehow the intensity that falls out of me is flowing as the clocks seems to be ticking louder scares him to death.It scares me too. I am ready. But the reservoir I need at home is dry and empty. Their fear precludes my needs. I yearn for so much. I can no longer do or fix. Someone else must sign up.

Today, I arranged a lunch date with a friend. I know it was probably a goodbye. We ate a meal and talked silly stuff. We talked about our families. We talked about my Chinese menu,  Jewish funeral planning. My friend is a man. I consider him a dear friend. FRIEND.  Well lock me away in fort Knox. And all it was, was somehow in my heart a so long. A childish temper tantrum by an offspring totally ripped wide the gaping hole of emptiness In my heart. The cavern of emptiness is larger than the grand canyon which sadly will not be discovered by any of those that cause the most pain because they show no interest in my writings. My secrets that somehow the world shares but them..

Two visits to doctors reinforced the time bomb ticking below the surface. The painfully low blood pressure, the pain exploding in my head, my vision blurred, the increased right sided loss of balance demonstrating more brain destruction and potentially another stroke. They won’t subject me to another MRI. No point. The Cryptococcus titers showing positive still..where is it lurking. The 16 hour sleep cycle, the fluid in my lungs . And the list went on. And he promised that I would be given the pain meds that I need. That the worry about addiction is moot. Its only going to get worse.  All I wanted to be held and to cry. So I sit here alone in tears, empty and broken. Reality is hard today.

So this desire to live a life worth living is my wish. It is getting oh so harder. It is especially alone at home. The love and support I receive from those outside my microcosm is so wonderful. My friends in my life are my wellspring eternal. Gifts from my world. That helps me stand. I pray for them daily as without them I would fall. So as I hope for some relief. I pray for some peace..

 

 

 

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.

Death an dying, Family, Life, Rape, Sex, Uncategorized

Sanctuary

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Amanda Tilton Sea Cliff1

Sanctuary: a place where someone or something is protected or given shelter. I thought about this tonight as I looked at the exquisite picture of home taken by Miss Amanda Tilton.

Sanctuary: a place where someone or something is protected or given shelter. What is sanctuary?

The idea of sanctuary has been elusive to me in my lifetime. The first memory of no sanctuary was a horrid birthday party at age 5. Creepy in a mansion in Bayville, my skin crawled as the puppet man played the piano and the children played musical chairs. My memories are in black and white. Flashes come but I still shake at the incomplete memory.

Another loss of sanctuary was being a 13 yo girl at the Orthopedist with my mom. Sitting on the exam table to get my cast changed. My mom leaves the room. She had her first heart attack. Mom’s can die. She lived to have 5 more heart attacks. But limbo world I lived.

The assault on my psyche continued into college. Not only was it an assault on my psyche but my person and my space. I can still see his face, smell his cheap cologne and feel his cruelty. My apartment was no longer that sunny place. A pretext to study, became an assault. No alcohol. No drugs. Violence and Power. I called a friend who dragged me to the hospital. I returned to class as if nothing at happened. The police strongly advised me it was not worth the pain to report. My senior thesis about “Date Rape” written in 1986 received a commendation from the President’s Office at Stony Brook University. I advocate for Sexual Assault Victims. Sadly today, not much has changed on college campuses. No Sanctuary.

April 2, 2006 my feeling of safety and security flipped as completely upside down as it could. A trip to the ER to confirm a mono diagnosis due to a bad blood drawer turned into a parent’s worst nightmare. “Mrs. Dunn, Can you come speak to me across the hall. Is there someone we can call?” The line remains vivid in my head. T-Cell Leukemia. But he’s just 6 years old.To watch a child endure the vicious testing, treatment, side effects of chemotherapy. To feel ineffective as a parent to your three healthy children who needed a mom, but was too occupied in keeping my youngest alive. To watch a marriage become one of convenience…two ships that pass in the night. Sex was hall sex where we both yelled fuck you at each other. No Sanctuary

And finally the invasion of my body by a cruel and miserable hateful disease Lupus. It attacks the Sanctuary I have all along. Me. For as this disease attacks my brain and body. As it steals pieces of my life, my job, my ability to drive, my memory, my strength, the ability to breathe, alters my relationships with my friends, my family and my husband, I will not let it steal my Sanctuary. Sanctuary is not a place but it is within each and every one of us. My Sanctuary is me.