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.
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 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….
Robin's Journey 