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.