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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2 comments:
I'm glad that you wrote your story. It's amazing and I can tell you that you really motivated Jesse to be compliant with treatments and never take a day for granted.
You've been a blessing to me as well. Thanks for writing and sharing your story.
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