I am perched in my ivory tower overlooking downtown Mineola from my cozy hospital bed. Yes my body failed to absorb the clues and infection has dropped me flat on my back. But the infection takes no prisoners. It evokes a systemic response causing my frenemy Lupus to pevert itself. This time my joints and brain are exploding with a burning agony and a pressure that a chainsaw and a drill come to mind as a cure. Primitive but effective. I write this at a lucid moment as the most effective treatment for the brain pain is to sedate me from the world. Now I sit in an early stage of a dilaudid hug. The sedation has worn off and it returns. The doctors are again
concerned
but happy as i am looking better as who would not when the sadists grip of pain is broken albeit for a brief time. I feel wrecked as I feel torn between the bravery wall I maintain to keep the light in my family’s eyes and the utter exhaustion of the battle. But that evaluation is for another day. I feel the tug of sleep from the drug happily injected into my belly.
The sun has gone down hours before. The house is quiet and still. Darkness has enfold our home. An expression appears in the eyes of my love. A softness, one of need and heartbreak. A child of a friend has passed from that dreaded disease: Cancer. She was beautiful and brave. And the fears come roaring out. In 2006, On a sunshine filled day we entered the world of fear that word brings. Our sweet boy was stricken with the deadly disease, A particularly vicious form. And he lives today, handsome and healthy. His first football game on a similar cool sunshiny day. He is strong. He wears his big brother’s uniform in homage to the love they share as only brothers do. In the morning they will walk together with their father to celebrate the life of another beautiful young man who succumbed to the disease of drug addiction. His death rocked their souls. Their anguish still palpable.
We sit together, I take his hand and press my lips to his palm and the tears fall. Emotions long subdued break free. Free after a week of nightmares and sleep walking. A desperate hug in the night like I am a life raft. I say nothing. I listen. Fear, wretched horrible fear in a whisper. I cry, my tears hidden in the darkness. I rub his back. A gentle touch and wait. Wait for words long suspected but never spoken and they come unbidden. He sleeps finally, peacefully. I say a silent prayer. Sleep finally comes for me. Peace.
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.
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.
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.
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..
Robin's Journey 