Yesterday was an event. I woke up miserable after a very restless night. Headache skyrocketed. Sedated that only worked for 3 hours. First threshold. Let’s try new med. Injected and within 30 seconds my heart seized. Not the seize of a set of lips on your throat seize but a life threatening one. Heart rate dropped to 60. My normal is 80. Respirations 8. My normal is 12-20. Bliod pressure 201/107. Not a typo. My head quelled. My heart felt like it was dying. Treatment oxygen, can’t have morphine, can’t have nitrates. Lower BP.was all I heard. Rapid response called. Unable to speak or move. Soaked with sweat. Threshold met.
Today with my oxygen, I watched the sunrise from my perch in my ivory tower. The blessings and peace for another day. The reminder to appreciate life. No threshold met. .
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 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.
The sun shines in the glorious state of summer moving to fall. The brightness stings my eyes. My head resonates with pain from every sound and flash of light. My face reflects a perfect red butterfly. My body aches. And I gasp for a gulp of crisp delicious air. My hand reaches for the red inhaler. Apropos red, emergency, life. I suck in a puff. My lungs are not open enough to take in enough. I close my eyes and concentrate hard to get in that second puff. I wait.
Today I am fragile. I feel uneasy. I feel exhausted. Air. That sweet breaths that support life. The wafts that make leaves skip in the sky. Support birds and airplanes. Invisible yet so unbelievably necessary. Air that cannot get into my lungs. I feel the quiver in my chest. Air beginning to move through the arid desert that is my lungs.
I live the odyssey. My blood work looked pristine. The doctor says I am working hard. A first in five years. But, there is always a but. The damage is ongoing. The moderate airway damage to my airways is there. The weight that sits on my chest. The pounding in my head. The warning beacons. The constant reminders that life is so important. That the air we expel should be chosen wisely.
I laugh at the weeks reminders and it is only Thursday. The man wasting his air about the possible misdeeds of another. The priest warbling about a life in paradise. I’m sure her parents want her here and could care less about paradise. Politicians preaching about their fixes to a country hopelessly divided and gone astray. Animals in foreign lands preaching deadly philosophies. Animals on home turf equally disturbing. All using and wasting precious air.
I shut the intrusive thoughts away. I close my eyes. I try to breathe that beautiful, crisp, life sustaining air. Air sweet air.
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.
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 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?
Robin's Journey 