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.
This is a tough week my lupus is like an angry witch turning flesh into stone. My body is stiff and sore. My head aches and with each turn the room spins. My joints burn with an insatiable pain and form stiff barriers to motion. My ribs are stiff and inflexible preventing the movement of air. My vision blurry and my face a picture of the red butterfly. Lupus, the wolf is howling at the moon. Despite all this I am peaceful. A peace that comes from deep within and not courtesy of a pill.
Yesterday was my day for me. A therapy session with an incredible man. A dinner with an incredible friend. My soul salved by both. Western medicine has reached a set of limitations. My body ill and frankly I feel just keeping from sinking. My mind active and pleading. Calling constant orders like a marine drill sergeant. I am a victim of my own thoughts. I have entered into a therapeutic relationship that combines dynamic interactive therapy, breath and relaxation techniques, and tactile stimulation. That description defies reality. To me it is like the opening of a flower, unfurling a flag, unwrapping Christmas presents. It is pure peaceful splendid joy. My mind and body is being taught to surrender. Surrender the angry voices, surrender the pain, surrender. In this case it is not giving up. It is surrendering to a war not winnable and raising a gauntlet to find a battle I can win. It is like standing at a door, banging on it to get the attention of someone behind it, my knuckles bloody from the immovable attempt. And then lifting my eyes to see a door wide open beside it and walking through. It is learning asking for what I want and accepting that not only can I attain it but that I deserve it and I am not selfish for asking. Tears fall like rain because I am safe, secure and allowed. This is an amazing gift, being in a space free to be…no worries on what I say or how it sounds. Free to experience because it is a place for me in the presence of someone present for only me. Eyes focused on me, the sound of my name like a beautiful clarinet. Peace and warmth. Sanctuary. Bliss. It is unique to feel honored and special…A princess as she is someone who receives all the spoils of love and adoration without having to constantly be the one in command. I relinquish command. No more sacrifice, no more paying the price. No more feeling as cold as ice to make it through the day. No more detachment from the body that is so trying to fail. My body’s failure is not my failure. The walls are breaking down. I am walking through a new door. God only knows why it has taken myself so long to figure out to take this trip to Bountiful. To this incredible therapist who allows me to be and makes me glow from it all. Bless you.
And to my glorious friend the Red Hare where conversation can go from apple pie to sex toys. I close my eyes and laugh. I can feel it . Open to her presents of presence. Love and friendship shared through time and adversity and amusement. I can smile abandoned as well as cry tears of sadness and joy. Safe to share this trip to bountiful unafraid or embarrassed. To her bless you.
I am learning to be unafraid to walk that mile until there is no more road. And thanks to this love and support I expect it to be a very long trip.
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.
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.
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.
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?
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 