Just shortly after recovering from my transplant I was given many blessings one in particular filled me with the desire and prompting to "Write My Story". The spirit I felt confirmed to me the importance of doing so. The work began. I got on my laptop and I spent hours which turned into days then into weeks. ..months. . .and close to 2 years. I wrote my story. I titled it "28 Breaths A Minute" which symbolized the amount of breaths I took when the ventilator was breathing for me when my own lungs could not breath on their own. I have shared a few passages and bits and peices of chapters. I didn't every feel like it really spoke to anyone but myself. . .When I finished it and sent it out to a publisher I was stung by rejection. I felt like a failure, like I had been asked by God to do something and didn't do it well enough. However, I DON'T believe that anymore. There are powerful thought provoking and insightful words in my "book" and someday I might re-write it to be more appealing to an audience outside of myself.
I saved it on a disk and on my computer and I prayed about how I was feeling about it. I felt as though I was given a task without the tools to do it right. I felt inadequate and unpoetical. As I prayed to find the answers to how I felt and why I was asked to write my story knowing it would become nothing more than words on a disk, my prayer was answered. The answer came to me clearly and the power of the spirit brought me to tears. I was asked to "write my story" but I was never asked to "write a book" or a "bestseller". . .I was simply asked to "write my story". The answer was the words just as I am typing them now. My heart, my soul, my experience, my opinions, my goals, my joys, my sorrows. . .my blog. My story is written in the form of a blog. I know that my blog and my story have reached people on the web who were like me, searching for hope. Searching for answers to the unknown and scary endeavor of Organ transplants.
I was alone and I felt like no one really, truly knew what I was going through. I didn't find anyone online that had Cepacia and lived post transplant long enough to really write about it. I had only my own hope, and dedication to drive me forward into darkness and not knowing whether I would see the life that I so desperately wanted. A life free of CF Lungs. I was told no more than anyone ever wants to hear, but I kept pushing forward. I searched more online, I googled Cepacia and Transplants in every different combination I could find only to be left with statistics & information from sites like CFF.ORG that stated things like Cepacia is usually not a candidate for lung transplant.
I know I am not the only person with CF that cultures Cepacia. . .but for so many months and years I felt completely alone and misunderstood. I didn't want anyone else to have to feel that way. So I began "writing my story" several times a week on my blog in 2007 which I called "JAMIEBUG CF/CEPACIA LUNG TRANSPLANT" I wanted to make sure if anyone searched the words CF, Cepacia, or lung transplant they would find my story and I might be the hope for them that I so longed to find before my transplant. I write about what transplant life is like, I write about the good and the bad.. .I write about my everyday things because that is what I searched for, hoping to come across a blog or story about Cepacia post transplant living each day and doing "normal, healthy things".
I'm not an award winnig writer, I'm not even that good of a writer, but I am an honest writer and I am 'me' and this is my story in all it's glory. . .it's free to whomever comes across my blog and I just pray every day that it finds it's way to those who need it.
That is why I blog. . .that is how I write my story, and I know that is all God asked me to do.
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