The farther out from my transplant I get the harder it is to 'remember' what life was like when I had "CF LUNGS". The memories are still there. . . but the pain and frustration and sadness are almost gone. It seems as though I have memories in my head that somehow don't seem like mine. They feel more like a dream or a movie I watched at a young age and now I can only remember the good parts & the scary parts but not all the in between stuff. I feel emotionally numb to what life was like. The hospital stays. . .every 4-6 months since I was 10 years old, they seem like they just weren't real. My life is just not like that anymore. My PFT's are something I no longer dread, although now I'm scared to do them for a different reason.
I feel like I don't relate to Cystic Fibrosis patients much anymore. I have compassion and understanding but I have also lived with the CF outlook on life. . .and I see it for what it really is. Not saying that I am pessimistic about it at all, but it's similar to watching a movie that has a plot twist at the end after you have already seen it before. The twist is just so obvious the second time you watch it. It can be so hard to not give the plot twist away to others who haven't seen the movie yet. Does that analagy make sense? I just know how CF ends. I know the harsh, raw, horrifying truth of what is inevitable. . . facing reality comes with some consequence, the truth hurts and believe me when the wall of denial I had built around myself and CF crumbled it left me feeling alone and scared for the first time in my life. I had to learn how to pick up the pieces and face the truth that Cystic Fibrosis is an unstoppable terminal disease. My lungs were "diseased". I had to accept that and brush myself off, get up and say "okay, then what do I need to do next". No looking back for excuses or to feel guilt for missing a few treatments or to blame myself for what was happening to my body because at that point I knew I no longer had to feel like I could control CF, it was what it was and the only way to go was forward.
I am blessed with the strong, powerful, upbeat, optimistic personality that most CF patients seem to also be blessed with and that will never change. I must say that I believed with my heart and soul that if I did my treatments, and exercised and did everything possible I could BEAT CF, and I did for 28 years. . .but when my body had finally became too weakened by the disease, it was at that moment before I was put on a ventilator that I surrendered to the torture that CF caused my frail body. It slowly stole my physical strength but it will never take my will to keep fighting. I knew that when I could not bear my burden any longer it would be taken from me. I carried it with strength and willingness for as long as I physically could and in the last few hours of my consciousnesses I had to surrender, I surrendered my will and put my life in Gods hands. That is when my burden was lifted and it was made light.
Every single person in this world is carrying their burden and we are made stronger as we do so and we are capable of doing amazing things and grow into amazing people. We can inspire, help, teach and be a beacon of hope in life when others have none. . .we have enough hope to share it with them.
My life with CF was my prelude to my new life. Without my prelude I wouldn't be creating the symphony of life I am now. I wouldn't appreciate every tiny miracle that is a gift to me. Without remembering what life was like I wouldn't believe that all the things I have now in my life are so wonderful. It's good to remember, it's good to be able to see the twist in the story and it's good to be able to learn from them & combine all those components in my lifetime to overcome the pain so I can create more chapters of my life story.
Believe there is hope. . .believe you can beat CF. . .and when your honorable fight starts coming to an end, find it in yourself to keep believing that life with CF can and will get better. . .and perhaps like me it will mean you'll have a new fight towards getting new lungs. But NEVER lose HOPE, that was my armor through it all.
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