I have realized how as life changes around us. . . .we tend to forget what life was like in the past. I have been able to view CF from an 'outsiders' looking glass. My life post transplant has it's 'maintenance' but while I was home I was able to visit with a few of my cysters who are around my age but are still living CF lungs. So easily I forget the daily crap that CF forces us to live with. I don't know very many CFers who complain or who don't see CF as a blessing just as I did and still do. But it's really an incredible view of Cystic Fibrosis when I watch them suck deep for a breath, hold back a cough, have the sound of CF in their voices, laugh followed by a coughing fit and barely keep weight on their bodies. I see myself. . .my old self when I look at them. I remember the life CF gave me, and the life it tried to take away from me. Having the opportunity to see CF through another perspective is quite difficult. Now I understand the concern everyone had for me. I want to make CF go away for all my friends that are suffering. Don't get me wrong, they find happiness in life. I was full of happiness despite the weakness and pain my body endured, but seeing it as others saw me, breaks my heart. Because I 'KNOW' what they are going through and what lies ahead. It is difficult to see them. I lOVE the relationships I have with my close CF friends, but everything comes at a cost. Seeing them get sicker, seeing them through 'healthy' eyes. I want them to have the life and health I have and I hope that someday they too can see CF through healthy eyes.
I am not being patronizing, I don't think being post transplant makes me 'better'. . .it just has given me the ability to take off my rose colored glasses, to step outside of my bubble of denial. I see the monster for what it is and I also see so many of us who are fighting, living, loving and enjoying happiness despite what our bodies are put through! I see amazing Heroes in this world who are overcoming more than most people will ever endure in 3 lifetimes. Stay strong and together we can bring CF to an end.
I always believed living in a 'healthy level of denial'. . .I know I got through life by not letting the reality overwhelm me. Why can't we be anything we want to be? We can.. . . We can believe we can!
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1 comment:
Hey Jamie,
I'm new to your blog. Thanks for sharing. Starting on the transplant journey in a week with an eval @ Duke. CF is definately a blessing in some ways. But I'll also admit I can't wait to breathe through new lungs.
Peace,
Steph
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