The Forest

It has been a year since I ventured into the overgrown forest. I was drawn to the darkness and simple silence that allowed me to clear my head. I was looking for a place to gather myself and stay until I could emerge whole again. I wandered in one October night and hit the ground so hard. I crumpled into the fetal position and found myself face to face with the moss that found a way to grow out of the harsh, dark and hostile forest ground. It was so soft to the touch and in the distance I could hear my voice reassuring myself that if this tiny bit of life can grow here then surely I can also grow back to myself. I positioned myself silently still and watered the ground below my face with a flood of tears and sorrow. I moaned as the pain took me away with it and yelled out words of hatred in heart breaking agony. 

Hours passed into days and those days merged into weeks that eventually rolled into months. I was tortured emotionally as I was coaxed out of the woods and into a clearing on stolen promises that would break with each step I took. The only truth that gave me comfort was knowing that I had found my special dark place that would shelter me from sight allowing me to ignore the ever present voice on the other side of the clearing. Finally after all the fight had been drained from my soul I found my way back to the place where my moss continued to grow and I curled up to it one last time in the dark forest that would now become my home. 

A year has come and gone. I am emerging with small steps a bit better but not whole just yet; however, I make progress everyday. I am healing a little at a time and positive thoughts seem to come at me from every corner of my life. Where there was darkness I have found small rays of sunshine that break through the canopy above. I have been in this position for a year and have felt the winter chill through my bones, found wild flowers strewn on the floor of the forest during spring time and embraced the summer rains. Now as the trees shed their leaves and prepare for another winter I have shed my own fears and leave my sorrow and pain in the forest. The darkness no longer protects me but hides me and I am not one to be hid. 

It is time to take a step into the clearing and walk the long and winding path back to the home within my heart. I now prepare for new beginnings as I have left the past behind. I welcome the winter months with new love that warms my heart and soul. It is a moment I never thought would find me and now that it has I feel ready to dance into tomorrow.  Sadness will find ways to creep into my mind but the utter wonder of what is still to come pushes it to the side and the sting is a little less harsh this time around. 

Canyon Below

I approached the edge carefully. All that separated me from the abyss below was a few ledges but after that, after that I would be lost to the world and swallowed by they canyon. As the sun set I propped myself on the edge and dangled my feet over the side. I was the closest I could have ever been to nature at this one point and strangely the closest to death but you can not think that when you are swallowed up by the natural awe of one of the seven wonders of the world. Most explore the canyon behind steel posts that keep tourist alike from getting to close to danger. Of course that would never be acceptable to me. My adventurous soul drew me to the North Rim where time stood still as well as my feet. There were no tourist. You could hear the bird that is catching the updraft begging for a break from all its travels. No snapping of cameras on this side just the gentle lullaby of the wind sweeping through crevices and cracks that have developed over thousands of years. Here I am at peace. My tracks are fresh and it has been at least three months since another human being had approached this very same ledge. I find joy it that small tedious fact. Tonight this canyon, this ledge is all mine and I only share it with the birds dancing above and the whisper of the wind below.

The first time I approached the edge of the canyon I remember looking out. I never knew where to look because from the top to the bottom the view was ever changing. I could not wrap my thoughts or my senses around what was laid out in front of me. It was an experience that would only be truly recognized once we were miles away. The thin veil that seemed to create a haze over everything you saw is now removed and the enormity of what you experienced hits and in one moment the scale of your existence is felt and tiny footprint you will leave is even smaller than you imagined. It is a feeling that I hope everyone will at least feel once in their lives.

Today I find myself at the edge of my own canyon. A canyon that has been shaped with the forcefulness of tears and nurtured by the light of a smile. The layers are measured in days and the ever changing landscape has seen many seasons of breakdown and growth. The constant piece that has not changed is a tiny ledge I have stood forcefully on as I braced for every storm that has rolled through my canyon. As I waited and wondered I watched life go on around me stuck on this ledge of never seen change. That is until now.

I slowly step off of my ledge and find solid ground where once it never existed. I slowly step back, one foot behind the other. As the distance grows between the edge and myself I can start to see the thin veil that has separated us. As I find myself farther and farther away I can slowly feel in my heart the movement that has been frozen in time. I feel my heart beat and can close my eyes and hear it ring through my ears. My breath has been stolen and I can feel the impact of my knees on the dirt and I look up in a soft plea. Finally the echo of myself no longer exists and the voice that echoed for years has grown silent in the prison of the canyon walls and is now being heard by many.

I see it all and understand now what the purpose of everything has been. The time that slowly tiptoed by was all for gathering and processing. Information exchanged between everyone while my life stopped and time moved on without me is now complete. Denial after denial was met at the door with hearts heard breaking around the world. I kindly say no more in a whisper only this moment in time can hear.

Now is the season of healing as the wait comes to an end. Life plans can be made, decisions can be discussed and finally the life seen moving so quick around me stops suddenly. I look out the door I opened suddenly in front of me. One look back takes me to the sight of the thinning veil and as I gaze out the door I see the world I have had to remove myself from for years. Without a moment of hesitation I step onto the sidewalk, close the door behind me and as it disappears into a memory the world bustles around me. It explodes in sounds, smells and everything my little eye can see. Finally once more I find that I am one with the world around me. I am one face among millions with nothing calling attention to me and it has never felt so good. It is time to now give back and truly start making my tiny but significant mark on this vast, ever changing world.

Old Friend

The cool water is inviting as I gaze at my reflection in the mirrored surface. I lean over slightly and as I gaze into my own eyes I reach out ever so gently and skim the water with my fingertip. The figure eight made ripples outward. My gaze never leaves my face and I see the ripples slowly distort the image looking back at me. I am unrecognizable. I can not make out my own mouth, nose or the eyes I was so intently staring into. In one soft, swift and gentle motion I no longer no who I am and look into the rippled surface for a clue as to who was now looking back at me. 

I squint hoping the narrowed vision would lead me to answers but only left the distorted image smaller and even harder to focus on. Slowly I step away from the waters edge but never loosing the rippled image. Step after step I slowly see clearly that in fact the image looking back at me was my own and that it may be different but it is in fact the same blue eyes, the same mouth that smiles so much it hurts and even more important , now that I have stepped back a bit I can see more of who I am looking at and I discover once again I can see my heart  right back where it belongs, permanently sewn onto my my sleeve. 

Old friend I thought for some time that I had lost you to the coldness of the world around me. I looked for you on the dark endless nights, the days spent being poked and prodded and lastly in the dreams I fought through chasing you from one memory to another. I am sorry to have doubted you. You never left. I just was unable to open myself up to see that you in fact were always with me. You are larger than I remember, beautiful and accepting. You are not scratched but in fact whole. I can feel you longing to find the endless love that lasts a lifetime. You are ready to be given once more to someone for safe keeping. With every beat you open us up to the world surrounding us. Finally we are again able to take in everything with endless love. Feeling you once more leaves me with wonder and hope. 

Looking around you will notice that things have changed. A new world is awaiting our arrival and someone longs to hold us tight. Alone is no longer a feeling that fills up our days and nights. Time no longer slowly creeps but is swept away with new memories to lock away for safe keeping. We are on a new adventure. One that holds so much promise and so much love. I am not afraid and you should not be afraid either. Let us embark on new milestones and plan for a world full of possibilities. I promise I will never loose sight of you again, for you make me whole and complete. Hold on tight because you and I...........you and I are just getting started. 

Hold On

I watch the ocean of my life pass before me. I see wave after wave crest the shore. I brace myself for the familiar pain that I can not seem to escape. Everyday I am reminded of loss and a feeling of being broken and held together with only the faintest amount of glue. Every day that crack opens again and the emotion that has been damned up runs free and no amount of protest will hold back the flood that breaks through the patch formed over my heart. I reach for the closest object and hold on tight and brace for the moment of impact. A moment that will remind me that healing is a continued process that can not be rushed, denied or ignored. So I stand tall and firm and roll with wave after wave just waiting to resurface and catch my breath once more knowing that it is only a matter of time until the next set hits. 

I am not a stranger to pain and suffering. I deal with physical pain every moment of my life and emotional pain has come and gone only to return when I least expect it. The physical pain is something I have accepted and wear it as a badge of strength and courage everyday of my life. I struggle but I persevere at the exact same moment I am in the depths of agony. For this I am proud of. Medicine makes it ever so bearable and allows me to continue to look forward to the next day in hopes that tomorrow will be so much easier than today. However, the emotional pain takes my breath away and feelings of loss and fear can not be treated with medicine, only with the patience of passing time. It is in the darkest hours of life I find myself smothered in emotional defeat reminded of what has come and what has gone. It is here that I am at a loss for words and long for the darkness to subside and for my  heart to fill with hope and love once more.

Everyday I am reminded of where I was this time last year and what this passing year has dealt me. I have had heartbreak that I never thought existed. I have longed for sleep to take me into the next month just so I could wake up at the end of this chapter in my life, scratched and bruised but on the mend. The more I longed for that moment the more I was reminded that recovery takes patience and time when you are physically and emotionally healing. Everyday I remind myself that I have plenty of time.

Today for a brief moment I felt what I have been longing for over the last year, a moment that made me sit up and take notice. Today the hurt was a little less than yesterday. Songs are no longer taking me back in time to a moment in the past. New adventures no longer remind me of the old. Memories of the here and now are becoming more prevalent in my life. For once in a long time I long for the future, not to escape the pain but to enjoy the pleasures of everyday life and those who share it with me. The sadness of yesterday is fading and thoughts of the past no longer leave me powerless but instead give me strength to carry on just as I am. I know the waves will continue to roll in and I must be prepared for the pain but it will lessen more and more everyday until the past no longer haunts me but occasionally reminds me of someone I used to know. So, until the waves have calmed I may as well make the best of a situation and learn to surf through life's waves with two feet steady on a solid foundation of self acceptance and love.

Gravity

Again we must meet. In the darkness of the night you emerge from the shadows of the corner where I had hoped to keep you for some time........maybe even forever. Yes, I know that is a rather lofty goal but what is life without the greatest hopes and wishes to lift us up when everything starts to drag you down. You are an addiction that never will be shook and in my lowest of low moments in my life I will rely on you and the strength you give me through medicinal purposes. I run from you, cry and swear to the heavens for making you come back into my world that was so silent and calm before you reentered. You allow me the moments of internal peace where my body struggles less against itself but with this wonderful gift given I am reminded it is no gift at all but a burden to be carried when the slightest breeze brings you to your knees in pain. Why must I need you , love you and despise you all in one swift moment of the heart?

The breath has been hard to take in. I can only imagine it feels as if you were drowning from the inside out. The lungs fill with fluid and slowly weigh you down. The breaths become swifter and harder and leave a lingering fullness and burning that radiates through your entire body. Moving from the bed to the bathroom has been a task that I have struggled with over the last week. I have to stop at a beautiful spot in the hall and admire the many shot glasses that Greg collects and displays. I focus on one specific colorful stein and breathe in and out until I finally can feel my toes grasp the carpet again, I now know I am ready and will make it to my final destination and with a small pause on the return trudge I stop once more admiring yet again his collection as if studying great paintings from centuries ago. All because my lungs are not functioning the way they need to in order to support the rest of my body and the oxygen it needs and is being deprived of as we speak. 

As I try to focus more on breathing over the days the cough is harder and harder to loosen and I finally see the one thing all Lupus patients suffering from lung infections dread.........the unmistakable blood that has traveled from the depths of your airways and surfaces in the whitest tissue. I double take because this can not be happening. Something is wrong and for the first time it is not the red bright blood of irritation but blood that has settled in the lungs itself and have been waiting for me to physical bring it up. I stare in shock, silence and then a cry. A cry I never wanted to ever have to hear myself make.........something is wrong internally because I am now coughing up blood. Blood that should not be there and does not belong in a healthy viable lung. The all embarrassing question rings in my head and breaks my heart........it is a question some of us will have to ask while battling a disease that wreaks havoc on our simple systems. Am I dying?

Two hospital visits, x-rays, ct scans and what is determined is that the tiny blood vessels in my lungs rupturing and causing the blood to sit comfortably in the lung, well, not so comfy for the lungs housed in my body. I am left frail, loss of breath and terrified to close my eyes due to the inability to breathe once the lights go down and my head reclines back. That is where we meet again.

Prednisone.........you terrify the life out of me but charm me in a way that nothing else on this planet could possible do. You allow me to feel burst of energy with clear lungs and help me focus on the brightness outside and actually being able to participate in the simple everyday tasks of life. You temporarily cure my sickness even if it is for just a short period of time. I am yours and you are mine. If that is not a sheep pulling the wool over someones eyes I do not know what is, Along with your wonderful helpfulness the  side effects do eventually outweigh the productiveness you allow me to have. 

You swoon me and court me and lead me to believe everything is wonderful and heavenly but over night things are different. Night sweats begin and you are forced to sleep with clothes on and off all through the night. The appetite is something that can never be satisfied and all the water I need to filter through my system, well, it just sits there and builds up and the ever recognizable moon face begins. Lets not forget that while you are starving every moment of the day you also feel as if you are going to be sick around every bump in the road. The affects it has on who I am emotionally is devastating for me. I feel at a loss for words and look into the mirror and know that those aggravated driven thoughts and feelings are related to the chemical dependency of the steroids. Yes, it too shall pass once the dose is complete but until then I live in a Yin and Yang world that even leaves me wondering who I am.

Passing of the Storm

As the clouds wrap their arms around the sun they tighten their grip. The radiant shine from the sun will no longer be able to escape their heavy grasp. Soon the clouds shed their tears and cover the ground below. The cool drops of rain leave their mark as they nourish what lies beneath them on a scorched and broken desert. The clouds can only hold on so tight, for so long before the sun fights through and slowly emerges shining for all the world to see. As the sun warms the ground below steam is seen escaping from every crack seen by the naked eye as if the earth is silently exhaling. The sun pushes the clouds to the side and as they travel to their next destination a little trail of rain follows behind reminding us of what came before. What you see is the unmistakable beauty of a rainbow that only results when the warm rays of the sun are kissed by the cool drops of rain. It reminds each and every one of us that there truly is a calm and beauty after each and every storm.

Every heart that beats will feel the pain and darkness of a passing storm. Life will stop for a moment and our hearts will break. You will close your eyes and inhale as the tears pour down and wet the sun drenched cheeks of yesterday. But just as the sun needs the clouds to let go we also must let go. We must allow ourselves to fall into the unknown abyss of the dark storm passing. Hold on tight as the wind whips our minds and scatters our feelings like the leaves being shed in the fall. Feel the cold trickle and realize the storm is here but that it too shall pass. You must cry and feel coldness to feel the tenderness of the sun rays hitting you once more as the storm passes and your heart is renewed with a sense of healing and wonder. The darkness and tears will only allow you to hurt for a moment in time. It is in the shine afterwards that radiates from your heart that will allow you to grow.

Do not run from the storm. It is there to nourish our minds, hearts and bodies. The pain allows us to feel happiness and bask in the wonder of joy. Fear will move on to its next destination and love will plant its seed that has been left to grow in the wake of the passing storm. Hope is never lost and love can always be found.

Not today......

The ping pong of machines echo in my ears. I dare not open my eyes. If I flutter for even a moment I will see that even if I wanted to I could not raise my head in question. I am bolted down by a mask that I swear I could reach out and touch with the tip of my tongue. I try to focus on moments filled with joy and laughter so that I can not feel the gentle tug of fear trying to overwhelm my soul. I search amidst the sadness and pain and joys and triumphs for hope. I long for life to pick up in a normal pace and steadily direct me through the next major turn ahead. I want my heart to lead me in the direction my head knows is best for me and my simple life filled with complexity.

Outside of this sterile room where I am locked into a tunnel the world carries on. I find myself wanting to break down in this most vulnerable moment. How is it that the horns honk and the drivers behind those wheels don't realize I am here? I am in here so that spots that have been embedded on my brain can be monitored for specific change in size, amount and complexity. My heart has now been examined for failure and disease. Test after test. We test the reaction of muscle tissue and blood flow. Is the numbness in the hands and feet a result of Lupus attacks or is there something more sinister lying amongst the nerve endings through out my body and that finger through my brain? How is it that I am here, in this moment while others lives move along so quickly to the beat of their normal heart and adventurous minds? 

As someone who is looked up to as an individual with unwavering strength and heart I have to say it out loud........I am afraid. The answers I long for are coming no matter how much I wish them away. I will never be able to close my eyes so tightly and drift in and out of memories that will remove me from the every day reality of my disease infested body. I am grateful everyday I am breathing and that I am able to smile but it does not take away the natural fear we all have the ability to carry. I may not show it to you.......or you.......or yes, even you. However, it is an ever present thought in the depths of my soul and I am saying it aloud for all of you to hear and all of you to remember that I too have the ability and ever present fear of what is going to happen next.

When I checked in to my scans the fun filled spunky technician lead me to my locker and changing rooms. She glanced at my testing pattern over the years and said that she was so sorry that she could look at me without hesitation and tell me.......honey, you know the drill. Once seated in front of her a look of sorrow spread over her face and it was as if the desk became a shield to protect herself from feeling the pain that was recognized in her wavering sentence........we are monitoring for MS.........again with the honey, I am so sorry. It amazed me how a moment ago we were joking about being a pro at these silly tests until she saw the reasoning behind them. The tone changed in the room immediately and there was the look I can never prepare myself for or even warn those of you starting this process.......the simple look of pitty from a complete stranger. I was never seated with the rest of the waiting patients and as she removed my IV after the testing was complete she looked at me with that "look" again and told me as she patted my leg sympathetically that I should take the rest of the day for myself. Rest, watch movies and read silly books. She had no idea that later that day would be the ultrasound of my heart. Another life altering test as the final encore of my day.

As I sit here now emotionally and mentally preparing myself for the next round of testing with electric pulses I start building up my heart and soul a little more everyday. I start by reminding myself that there is reason behind all unanswered questions concerning the simple but powerful word.........why. I prepare myself for the upcoming weeks of appointments after the testing is complete to deliver the news that could result in high fives all around and see you in another year to the simplicity of words delivered to me that will drastically change the rest of my life. 

I am proud to stand up right now in this exact moment and yell out to the world through my words that I am afraid. I feel alone in my locked up thoughts and feelings. Sometimes the strong exterior you see walking towards you hides the shaken heart and soul of someone who is exhausted from fighting so hard for not only her life but for happiness and security. I will smile for you but remember, for every smile there are tears shed in silence  that you will never see. Those of you who have ever asked yourself how you can help me, the answer is simple.........just be there in the silence that can be cut through only with the comforting words of love, acceptance and laughter.