Wednesday, August 4, 2010

"Everything Rides on Hope Now"

It seems like when I find my comfort, my little spot in the world, that everything turns upside down. It is like the earth shifts beneath my feet and before I know it I am lying on my back starring at the clouds passing me by. It feels like everyone around me is moving in slow motion. It feels like I am in some horrible nightmare and I can't wake up. I am beyond confused and the decisions are coming quickly....too quickly. It is not what I am comfortable with. Trying to clear my head in a hospital room while the rest of the world sleeps  in their warm beds breathing with their sweet lungs that hide safely under their ribs. The things that are so precious to me, that are life giving, others are walking around and not even realizing what it is they truly have. My mind races away with me and before I know it I am on top of a mountain surrounded by beautiful blankets of snow. The air fogs in front of my face as my warm breath escapes my lips. A mountain I climbed with my own two legs, my body, my healthy body and my strong lungs. My beautiful precious lungs. A gift. A true gift. Then a knock at the door and I am quickly ripped back into my reality, sitting in my hospital room with my oxygen tied to my face, because it is that time again. That time to sleep, the time I dread the most because it is then I surrender to this device and allow fake air to be pumped into my body. I hate the oxygen. I despise it. I see it as a weakness. I wish I didn't. I wish I could embrace it, however I just can't. It ties me to this disease and I hate that. I am such a free spirit. I need room to run and to stretch. I have one question yet I am getting what seems like a dozen different answers. All from respectable and intelligent people. Some days I feel like I am holding off a pack of wolves. I feel as if I am an experiment and they are just ready to ravage what is left of me at any second. Yet other days, the good days, I look at my doctor and my team and my heart literally swells because I feel so loved, so cared about, so safe. My doctor is human. He can make mistakes, but in my eyes, he is absolute genius. I know that may sound over the top but isn't that how we need to feel about our doctors. If not then we need to find a new one. I want to trust him with my life, with my future, knowing every decision is made just as if he is making them for his own daughters. It is a feeling of peace to have that. To know that he and many others are in my corner pulling for me. To see me live the best life I can. I don't know what is going to happen. These days I just take one at a time. I don't know if I am going to be faced with decisions that will send me to the brink of insanity and back again. I can't control everything, even if I would like to. But what I do know is CF may have my body, but it will never take my spirit. Not today, not tomorrow, not ever. My spirit is mine and it is precious. It may feel like I am walking through hell, but I refuse to not keep a smile on my face and my head held up. Even through the pain and sorrow of it all. It may be a tragedy to some, but for me it is beautiful. It is life. It is my life and I intend on living it.


  1. Amen cyster. That is one of my favorite songs of all time...

  2. Once again, well written. I love hearing your feelings put into words. We do take so many things for granted and you have shown me so much of that in the few short years I have known you! Thanks for sharing!
    Love you,