How far I have come....

Today I received an email that caught me off guard. It made me realize how far I have come in my journey with CF, illness, self acceptance, and transplant.

This year I was obviously at the CF retreat with an oxygen cannula wrapped around my face, and pulling my cart with the steaming O2 tank. Everywhere I go, O2 goes too! CF camp and retreat have always been a place where I learn a lot about the human condition, and at CF camp a long time ago, I discovered a quote on the back of a Tshirt. The quote was, "never let your fears stand in the way of your dreams". I have always had this quote running through my mind over and over, with each challenge that I face in my life. Whenever something difficult comes along I find strength in this quote. If a challenge stood in the way of my dream coming true, i would continue to push through.

Where am i going with this? How does this relate to an email? I will get there.. keep with me.

Well, when I got sick and had to start wearing oxygen, it terrified me. It symbolized a new stage in this disease, end stage. WTF? how did I get here? I do everything right! I do all my treatments, I take all my pills, I always eat well, I give back to my community, I stay active and involved in my life. Why did this happen? Well, it just is. CF is a rotten disease and it just is this disease. Some people are "lucky" or win the genetic lottery with CF and just don't progress in the same way. I honestly was lucky a LOT in my life. It always could have been worse. There are things that my friends have gone through that I didn't have to suffer through. But now, I am facing the realities of this disease, by no fault of my own. NO FAULT. But i saw this Oxygen tank and cannula as a symbol of utter FAILURE. Failure that I had let this disease win. But you know what? It didn't win. I didn't give up, i didn't surrender. I have continued to live my life strong, and to the best of my ability. I am not going to say some bull shit inspirational shit like "it made me try harder and made me push more and more, and presented me with another challenge to overcome." No, I just came to acceptance of where I am.
After many years of this disease creeping up on me and once i realized transplant was near, I went through my grief of the loss of my abilities, and my health, and my independence, I made the choice to embrace this new life. You heard me right, EMBRACE this new life!

Instead of resisting it, I would take on the the help, i would change my lifestyle, i would let people help me. I always wanted to fight it before, but this change didn't mean i surrendered. I didn't put up a white flag and let CF win, NO NO NO. I accepted where i am and just let it be. You want to know what happened when i did this? My health finally stabilized. I stopped declining at such a fast pace. I became whole again as a person. My body is sick, but my soul is whole and strong. I have so much left to do on this earth, and that is why I must take this time to be needy and allow myself the space to "be sick" and wait for new lungs.

I used to be embarrassed to be sick, but it is not an embarrassing thing, it is a wise thing. I realized this today. I have embodied all that I was terrified of before, as a young person with CF, holding on to 50% lung function. This was the most terrifying place for me to end up, but you know what? I am still the same person, and I am going to get the most amazing opportunity to live a life I always dreamed of. It makes me tear up writing this because I know how far I have come. But also how far I have to go.. I will have to continue this acceptance as this disease progresses if lungs don't come soon enough. And also through the changing process that I have no control of when the call does come and i do get new lungs. So right now I must be with I have today, and live it up the best I can. I can't worry about what anyone else thinks about me, I must live the best life i can live, O2 cannula or not.

This is where the email comes in...
Because I have been involved with the CF community for a long time many people know me personally. I received an email today from CFRI asking if it was alright for them to use pictures of me with my O2 in the newsletter. My instant response was "OF COURSE!" Then i stopped and realized this was very considerate, because the old me would have said,"no way jose". I do remember thinking at one point "no pictures of me will be taken when I am sick". But i have decided that would be just denying a part of my life. What is wrong with me now that isn't worth looking at? I am still the same person. I still love my friends, family, kitties, fishing, psychology, watching TV, swimming, the beach, the sun, the water, good food, tropical islands, learning, and living... my answer is YES! I want to remember this, because this is me!