One step forward.......

Life can be cruel at times. Life tends to lead you on by allowing you to feel safe and secure and just when you take a deep breath in and slowly release convincing yourself that, hey, you have this, it decides to pull a fast one on you. The false sense of security is ripped out of your hands as you reluctantly let go. The bearings you had on what you felt was headway made was actually an illusion and life now shows you that you are still left grasping to the ledge you are barely hanging on to. For a moment you have taken two steps forward and twenty steps back. 

Over the last year I have struggled to hold onto that ledge that I built for myself. I slip and cling as tight as I can and I wait for the numbness to overtake me so that I feel as if I have a new grasp on the world. The numbness allows me to forget that I am barley hanging on and for a period of time I can feel the sweet acceptance of a new chapter in my life. Out of the blue something unexpectedly always comes along and throws me back into my reality and the grip loosens and the panic feeling overwhelms me as I again struggle to find the numbness that will allow me to carry on. 

I have recently experienced one of those moments where life laughs cruelly in my face knowing that at any moment I may choose to let go. I have been very sick over the last few months. I have been in and out of the doctors office, emergency room and urgent cares. Each time I shuffle through the sliding doors and I put so much trust in strangers because I am at a point of desperation. I want to feel better........I want to feel better all the time. I will do anything, try anything and will allow them to poke and prod as much as they need to in order to finally deliver the golden ticket of health and security. I exit the doors I walked through moments ago without a golden ticket but with five prescriptions that we hope may help and I am still left searching for my Willy Wonka in the medical field. 

Tonight I seclude myself in a bedroom and stack up pillows behind my back so that I can work on reducing the fluid that has now built up in my lungs. I try not to cough for the fear of the pain that follows the rough convulsions caused by my lungs seizing when I breathe in to deep. I shake to the drum of Albuterol and sing to the tune of strong antibiotics. I pray to every God known to man and ask for an ounce of relief from the infection that has now taken over and seems to be able to beat the odds of death by medicine. I miss the ability to swallow firm foods and I am exhausted from the constant run to the bathroom resulting from an all liquid diet. A fight is raging inside and I must be the strong leader no matter the sacrifices or the cost.

I am clinging to the ledge once more. My legs are dangling as I try to crawl up the side of the wall while my feet slip at every attempt. I can feel the pain in my fingertips as they cry out for mercy and for me to just let go. I reminder myself that this to shall pass and the pain will again turn to numbness. I collect myself and stop fighting the pull of gravity and settle in for another long struggle but as I settle in I look up and see the beauty of the blue in the sky and feel the sun warm my face and in that moment I am reminded why I hold on so tight and never let go.......even in pain there is always beauty to be found.

Passing

Strength is measured in ones ability to withstand. Normally when we think of an individual as being strong when they can literally carry so much weight that ones is left gasping and inwardly yelling at them to please drop it before they hurt themselves. In those moments we are in utter awe of the strength this one individual can exude physically. Knowing we could never carry that, we walk away stunned by the sight of what we just witnessed. What about the silent strength that we each encounter everyday without even knowing what we are looking at? It is in this silent strength you will find the burdens of ones world. Silently carried throughout ones day. They slip through the crowd and you would not even know of their internal struggles. However, in one chance encounter you accidentally lock eyes and you are transported into their world in that moment it takes to blink an eye. 

You are carried through the beating of their heart and pushed through the worries only they know. You feel the worry of tomorrows busy day before today has even begun. The weight of their world is now on your shoulders. You loose your breath when you feel the heartache of loss. Taken back by the idea of loving unconditionally and letting go so that peace can be found, you stumble hitting the walls of their life. At once you are crippled by a pain experienced all day every day and you breathlessly ask why. Longing creeps into your bones as you realize the inability to move fluidly through one simple motion. 

You feel the negativity that tries to creep into the mind and is pushed back and shaken from the forethought of this individuals reality. You are transported from the dark end of the psyche to the brightness of longing, love and possibility. Smiles and the simple words of a children's book resonates over and over through the heart.....I think I can, I think I can, I think I can and they do. Through the pain they see the beauty of what is still possible. You find a drive like no other and internal acceptance only known by those turned away time after time. There is a fevered push to move forward and leave the negativity of yesterday behind. It as if the clouds have parted for the very first time in existence and the sun is felt. This radiant glow is felt through every inch of exposed skin. The tiny hairs raise and bow to the warmth of hope. 

Somehow in that one blink of an eye your life has changed. The simple contact of a locked gaze has transformed how you see your world and those around you. Something has resonated inside of you and nothing will be the same. A simple glance, that chance to understand and the one moment that allowed you to see life through someone else's life will forever alter you. How you lived without this insight for so long you will never understand. 

With the blink of an eye it is gone and you walk past her in the crowd. You glance back knowing life will never be the same. Search you may but you will never be moved in one single moment as you were in that random passing on the street.

Disposed Of

At the onset of my disease I was in my carefree early twenties. I had been legally "blessed" by the alcohol Gods and was not turned away at any door that vibrated with loud music and an atmosphere of fun. I lived on my own, had a wonderful job and like anyone in their early twenties, felt invincible to the world around me. Nothing bad could or would touch me! I was embarking on the best times of my life. The world was open to me and anything was possible. Every moment felt as if I was riding with my windows down and I could feel the breeze slip through my fingers as I forced them against the oncoming air. Life was a whimsical tail told by others as the most imaginative and enjoyable time of their lives. Unknown to me everything was about to change and life would never be the same. 

I was twenty two and the doctors tried to explain to me that it was sleeping so soundly in my DNA and the sudden shock of moving from Ohio, a cooler climate, to Arizona.....let's be honest , Hell on Earth in the heat department, had shaken my internal DNA and suddenly a disease had been released into my body. This disease would now take control over everything. It would decide on what it felt was needed and not needed. It would fight anything in its sights even if it was a vital part to the functioning of my body itself. Blood would forever be tainted with stained and specked spots floating around and reproducing at a rapid rate. Karma was asking to be paid in full. No amount of good in the past would change the fate of my future. 

Time would pass by and refused to slow when I needed it to the most. My body had betrayed me and would never reconcile with me no matter how many days and nights I spent pleading for the pain to stop and bargaining with a disease that had no face that if by some miracle I could be healthy I would never take anything in this world for granted. I would emanate love and kindness and grant forgiveness every time I looked upon regret. I would be true to myself and understand with great capacity within the world I lived in. However, the Devil continued to knock at my door and when finally answered it Lupus was staring back into my soul every time I looked into the mirror.

The daily fight to survive was redefined for me. I would fight for my life for the rest of my life and in the end may even have to pay with my life. Processing that simple idea that most will never face in their life became a goal, almost a challenge. I decided all of the bargaining I had done with my body truly showed me who I wanted to be and the mark I would leave. I would live with my disease with grace and dignity and never impose my pain on others. I made it my mission that no one would suffer due to the fact that I was sick and everyone in my life would see normalcy when they looked at me and nothing would radiate from my soul that shouted, "Look at me!!!!!! I am sick!" I would show love and kindness and would forgive where regret remained. I would take the simple concept of an organization I hold dear to my heart and leave the world a better place than I found it. That was the person I would come to know as myself.

Today I am proud that when I look in the mirror and see Lupus staring right back at me that all it is is a vision of who I am. I have been disposed of like a piece of unwanted property many times because of the draining affect my disease carries with it. The resentment towards me because of something I can not control has melted into my life. A changing of the guard has occurred and like those from the past I have been locked out by a gate that I no longer posses a key for. Friends have rotated and all of their lives have carried on seamlessly. The sick person has left the building and a new and healthy one has walked in the back door. I have not disappeared and while time moves on I am still fighting for my life. I will never live a life free of Lupus. While everyone embraces change one thing will always be consistent, no matter how many times people leave my life and "dispose" of me because of my life I will always be left fighting for my life. One day you will hear a mention of Lupus and you will think to yourself or maybe even boldly say that you used to know someone with Lupus but I will be the real fighter because for the rest of my life I am Lupus. 

Letting Go

You came in and and took my hand. It did not matter that you had worked through the night. You lead me out to the truck and loaded me in. You did not question my needs at that moment because you knew it was beyond what you could do for me. The pain exceeded what we could handle together and something was terribly wrong. Something was terribly wrong but you were strong and lead me through the Emergency Room doors with a hand on my back. I was terrified and it was not because I was feeling so sick.......I was terrified that you would leave just as they had all left before you.

You see, in the past I was made to feel broken and ashamed of what was going on inside of me. The unconditional support and love I needed in the darkest of moments was never there and I was forced to navigate the choppy waters of my disease alone. I grew to believe I was in this alone and accepted it and did not demand the love, compassion and care I truly needed and deserved. No matter how sick I was I still deserved the simple respect a human being should not have to fight for. My needs were second and this was felt in the long days and weeks of living my daily life alone. There was not enough time left in the day for the bothersome burden my disease blanketed us with. Questions were answered in a gruff manner that left me feeling as if I was a bother.......a burden. This has left me questioning my true ability and strength I need to fight for my life everyday. I have been left with fear and a sense of loss........a loss of myself because I surrendered my needs for the sake of another. Not anymore.

As they poked and prodded and gave me shot after shot you never left my side. You closed your eyes when you thought I had fallen asleep. One noise out of my mouth and you were right next to me. Making me laugh and holding me through the moments of breathtaking pain. You showed me love in a way I have not experienced. You never let me apologize without scolding me. The love felt through your touch made me feel safe and for the first time I could let go of the past and the fears that had been sketched onto my heart. For the first time I was not alone and all I had to do was whisper your name and everything was right in the world. In my life, in that moment you became a true man in my eyes and my heart. I had finally found what I had longed for even before I knew it was missing. 

I am struggling right now. I am very sick and very afraid of every fever and every headache. Septic shock is what we are monitoring for and hoping the bacterial infection in my lymphatic system stays there and does not dance throughout my blood. Bed rest has stolen my long weekend and has taken my time out in nature away. However, at the end of the day my body may be done and the sickness may take over but one thing I can count on is that I am not going through any of this alone. 

For the first time in my life I have someone who puts me first and monitors me and learns from me and accepts me just as I am. He understands that he is not only inviting me into his life but also Lupus. It does not phase him. He looks past my disease and sees me, the real me. The me that loves to laugh and watch fun shows on tv. The me that adores family and can not wait to start my own. The me that tried to do everything on her own without asking for help. He truly sees who I am and on those days it is to much and I have to rest and watch a movie.......he is right there on the couch with me making me laugh and for a moment I can forget that I am sick. 

He is my strength, my rock and my friend. He is my love, my today and my tomorrow. Because of him I am no longer afraid of the future and what Lupus has in store for me because I know I am not alone and he will be right there next to me every step of the way. He is amazing and he is my Greg.

Super Powers

My friends see me in an angelic way. A way that allows them to process me and everything that comes along with me in a positive manner. I am someone who has it together regardless of what life has handed me, accepts the pain and walks with my head up looking for the sun no matter how hard the rain may fall that day. Over time and after years of surrounding myself with these thoughts and looks of power sent directly to my soul through others you begin to think the same way. You are no longer human.......you have super powers and you may not be invincible but you are untouchable when it comes to negative discourse bumping into you on the path of life. 

As a child you are asked more times than not what super power would you like to have if you were blessed with one? Almost all of my friends wanted to fly, shoot lightening from their fingertips or even have the power to see into the future. Not me. I wanted the power to heal and to bring happiness into everyone's life that I danced in to. With child like wonder I imagined touching the ill and watching them dance into the sunset all better. I saw a see of smiles that emanated so much light that the sun would be ashamed to rise in the shadows of all of that joy. What they failed to mention is that super powers do not exist and life is still going to make you cry and kick you when you are down and there is not a touch in the world that can take away that pain.

I long for the touch to take the pain away. I wish the breeze felt by a passing hand was enough to heal time, my heart and my body. I look into the eyes surrounding me and see the hope they have for me but all I reflect is the questions of why. Tonight I gaze into the distance and try to recall the days when I did not feel pain every in every motion of the day. I look at strangers and I am envious of the freedom and fluidity their body gives them. Boy, what I would give for a pain free day to  do everything I took for granted over the course of my life before my disease. 

As I close my eyes tonight I am not the person my friends and family see. Tonight I am not the strong one everyone tells me I am. I feel beat down by the invisible disease that only I know I have and others can glance at me and forget. This is what will overtake me as the sun goes down but tomorrow will be different. Even with the pain I will wake up with my super powers again and what others see when they look at me will be reflected in the mirror as I see myself. Lupus you may have won this battle tonight but with your one win I will have 364 days to try again.