Tag Archives: death and dying

Family, Fear, Life

The best

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The sound of the barking dog brought me to consciousness. The morning was spent watching my youngest’s football game in the company of my oldest daughter, son and husband. The alarm that morning made me jump. The very first breath unsteady and painful. My nostrils flared at the exertion. I sat up and reached for my inhaler. I sucked in barely able to get the two pulses in. “You must move.” I willed myself.

The walk to the field hurt. The oxycodone was hitting nothing. I held my husbands arm hoping for his strength. I was light headed. I smiled at my fellow parents as I took the stand. The fake smile I was used to giving. I was exhausted. I closed my eyes and made a silent plea. I calmly reached for my mental respite. The sun beat down despite it being early morning and a late September day. There was no escape. We baked. I was cold despite the heat but the ultra violet light was so toxic. I will not give in. I prayed my long sleeves would protect me along with the sunscreen. The game was so terrific and the shy look from my sun on the sidelines made it so worth it. A memory for my sweet angel. The best.

The walk up the path to my front door was unbearable. I felt myself weaken every step. I carried on the silent conversation with myself wishing each step. A made it to the couch and immediately fell into a deep sleep. Flustered six hours later I was conscious. Pain seared me and again I repeated the same routine I have repeated over and over. The inhaler and the pain pill. Just carry me through a dinner with my husband and oldest. Again the best.

I have been sharper and more vital. A thought of maybe things are better. An emotion getting out of my head. I feel the tick of the clock loudly again. My body feels like it is again messing with me. I hope it is different but I flinch. I am no longer interested in the worst. I force my body, like a challenge to hope for the best.

Death an dying, Emptiness, Fear, Life, Pain, Soul

Two sides to the story

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When we were children, we used to think that when we were grown-up we would no longer be vulnerable. But to grow up is to accept vulnerability… To be alive is to be vulnerable.   Madeleine L’Engle

Two sides to me. In April I was confronted with facts that tore a hole into my soul. I was told in very unambiguous terms that my body was failing. Death came to my dinner table. In fact it came to my breakfast, lunch and every table in between. Confronted with this reality, I faced real hard choices. I would now have to put it in perspective. To think what it meant to me. I needed to make decisions: What was a hard line, what was a soft line and what would I no longer give any thought to. Railing against the machine though easy to wield like a knight’s shield was an energy consuming task. A task that it was clear, I have no strength to perform.

 
I needed to relate to my distress like a medieval damsel. To live my life I needed to meet my vulnerability head on. Who am I? I have spent my life practicing what I am good at. Wielding a shield, Pointing a sword, Pushing to the top. Anger was easy to access. Emotion was suppressed. Pain was acceptable and a necessary evil.
 
I am used to pain. Both my parents are gone, I have faced illness in my family, I survived a sexual assault, I lived 9-11 up close and personal. My hazel eyes have seen more pain and evil. Now my body is wracked with pain. Physical, miserable, unrelenting pain. My head pounds, my vision blurs, my lungs are seared, my bones burn, my muscles are weak. There are pills for that. I suck that up, some days better than others. I do not fear that pain.
 
The other pain, the pain no one can quantify. The pain that is invisible. The pain that fills the well deep within. The pain of abandonment, hate, loss, loneliness, betrayal, inadequacy, unworthiness and fear. Those no pill can fix. This is what eats at me. My soul has a full appetite for this. This is no way to live well while dying. This is like a sealed envelope never to be opened. So like the song from A Chorus Line….I reached deep down to the bottom of my soul and cried. A gentle caring physician who realized there was no cure for my body, but in my utter desolation, pointed out there was a cure for my aching soul.
 
The dichotomy of my life. The choice was to live a life worth living. When you are ill, your life is surrounded by the aura of the disease. It forms a ring around you. This is now a hard line. My life is not a disease nor a sum total of my symptoms. I consciously choose to lower the force field in pursuit of finding life’s joy. Vulnerable. Painful. Open.
 
I choose to seek. I choose to open the window and let the breeze in and let out the acrid stifling air. I choose to hurt to feel. How do I know what will help? I know that to feel joy you need to feel.. My mind needs clarity. I am so exhausted. I desperately want things to be different. Make the choices I can. Again another hard line.
 
Seek and you shall find. I am in pursuit. The walls are coming down, I am seeing the sun for the first time in a long time. I bare my soul. I shed the shell covering my body into the hands of a gifted therapist. I dig deep to places long frozen and as the chasm releases so do I. This is the two sides of my life. My body remains on the trajectory away from life. but I smile again and my soul though raw is beginning to be soothed. Two sides. Abundance.
 
 
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.

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, 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.

Uncategorized

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.

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.

Death an dying, Life, Uncategorized

I don’t want you to go

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The quietude of the breaking dawn seems to drive me to wakefulness and contemplation. The gentle sound of rain falling filled the air in its own symphony. I lay there alone just lost in thought and sound. A tear silently falls from my eye. “I don’t want you to go.”  Six words that changed everything. Words more intimate than any ever spoken between us. Words spoken on another quiet rainy morning. Words so painful for him to say.  If the wall comes down, the flood will encompass the world, His world, our world. There are no reassurances to utter. No false promises to make. “I will do my best to stay.” I reach a hand out, he holds it tight and then recoils as if my touch is acid. This is all too painful. Living in limbo. Love weighted down by fear.

I think of the two Canadian mounted police officers and the two Las Vegas Police Officers and the New Jersey Firefighter who went to work and never came home. Their loved ones did not want them to go.

I think of the man in the bus coming home from a comedy show, a man driving in a car, a family in a van. Their loved ones did not want them to go.

I think of twenty eight years listening to the sound of the gun safe opening and yet another shift to begin. I say the silent prayer that I have said every time. “I do not want you to go.”

I lay thinking of the luxury I am given. A time to express those feelings and words unsaid. A luxury of choices to live the life worth living. To let go of the minutia. Yes daily tasks still occur; bills, laundry, groceries, doctor appointments. But the riches are mine for the seeking. Take advantage of gifts where you find them I remind myself.  And more tears fall.