A blog about my beautiful life living with Cystic Fibrosis: to educate and help promote awareness and understanding associated with CF.
Dedicated to sharing my experiences of the good, the bad, the ugly, and the funny, so that all who so eagerly support the fight against CF, will know how much their love and support truly means.
Thursday, August 7, 2014
Alive - Part III
How can you be sure that life does not pass you by? How can you make sure you are really living in each moment you are given?
It's so very easy to get caught up in the chaos of life and become engulfed in a mind numbing routine that we forget what it feels like to be truly alive. It takes real work to stop and make a conscious effort to be alive and present in every moment. While I completely understand that at times we must just merely exist and take in the world around us, we must never allow ourselves to become a bystander to life. Before we know it, we have lived our entire lives without really ever living.
Picnic in the park with friends.
CF has caused me to frequently ponder life and what it means to be alive. When CF confronts me and my journey becomes uncertain, I feel the need to live more than ever: I want to know I experienced and lived my life to its fullest potential. When CF comes at me with every vengeance, it causes me evaluate how I am living my life. It forces me to think about looking back upon my life, and what I may see when it's at its end. What do I want to see? What do I want my life's story to tell? What regrets will I have? Did I truly live?
I begin thinking about all the things I want to do and experience: how I want to drink in every ounce of life. Where do I want to go? What do I want to see, to experience? I want to be alive and present in every moment, experiencing it all. I am desperate to live, not just exist. I forbid to be a bystander in my own life: there is far too much life to live.
- 55 -
For the last week I have been so overcome with disbelief, amazement, gratitude, and hope. After being off of IV's for a few weeks and because I have been feeling great, my Team wanted me to come in for a quick lung function check. What I am about to say still brings tears of disbelief and gratitude to my eyes: I blew a 55%. I still cannot believe it. It's the highest it has been in many many years. I shouldn't say "I blew 55%," I need to say "we blew 55%." I could not have done it alone. It is a moment I will never ever forget. I will never forget that feeling, hearing those words, seeing the smiles and excitement of my Team, and telling my dear friends and family the news. From 37% to 55% in two months: nothing short of amazing. I have been feeling the best I have in years, and for good reason.
With this new excitement I find myself trying to fully live every minute of every day: weekend adventures, picnics, visiting friends and family, lunch dates, reading, spontaneous day trips to the big city, and continuous dreaming of what may come: knowing that it can all change in an instant. I live in fear, always looking over my shoulder, waiting for CF to take it all away again. That's how CF works. It can steal your independence and momentum for living so very quickly, breaking you down and stripping you of dreams and most of all, hope. It leaves you to wonder if this is the beginning of the end, and fills you with fear of what the future holds.
What am I doing right now? I am in the pursuit of living. I am enjoying every beautiful breath, living in each moment, and making a list. A list? Yes, a list, actually several. Instead of thinking backwards, I am thinking forwards. I am being proactive about what my life will look like when I am at the end of the road looking back: I am living now. I am making Bucket Lists.
Sure, we all have things we'd like to do. We make a mental list hoping someday to accomplish certain things within our life, but very rarely do we set them to paper for the world to see. Why is a bucket list a good idea? It forces us to live, to really truly live in every moment, continuing to look forward, not back. I have written several bucket lists: one for the next 6 months, one for the year, and one for the next 1O years. It's a work in progress, but events, adventures, and accomplishments range from simply picking the perfect pumpkin at the local orchard, having a picnic, graduating with my masters degree, visiting the Ballou family castle in Ireland, to seeing each of my goddaughters graduate from college. The beautiful thing about each list is they are alive: always growing, changing, and becoming something better, helping us to remember to live.
Just a very few things from my lists.
I challenge you to make a bucket list with 5 things you'd like to accomplish by January 1. Remember, they can be the simplest of things to the grandest of adventures. I then challenge you to do the same thing for 1 year, and then 15 years. It doesn't matter what your lists consist of, just so that you are really living in each moment and feeling truly alive. Love to you all.