Living with Cystic Fibrosis: The Future

Hi friends! So sorry my last CF Awareness post for this week is coming out today. I tried to finish it last night, but this week has kicked my butt and I was literally nodding off trying to massage my words. So a little Starbucks and bright Saturday morning and I have finished. I still worry the message here is a little jumbled – but I am going for it! This community has learned to be loud, proud, hardworking, open, and dedicated to living life among some of the hardest conditions, when the future is not guaranteed. I am so proud and honored to be part of it – even when this reality is extremely frustrating. So this is my post that is a cheers of sorts: we are in the middle of the hard often, but we find a way to thrive… and for that I am proud of us all!
COTA’s Miracle Maker Event June 2018
I started out my Cystic Fibrosis Awareness week with a post that marveled at the realization there are more adults living with CF in this world than children. That fact alone is exciting  – but I think most impressive about the CF community right now is its not just about surviving and beating the odds: it is about thriving.
Five Feet Apart Early Premier Event – CF Hits the Big Screen
March 2019
Over the past few years there has been an interesting trend to not worry about the quantity of time, but rather the quality. This is a choice and with each CFer you see their personal version of what that looks like in their lives. I don’t know one Cystic Fibrosis patent or CF family who has chosen the same path. That sort of embracing of the uniqueness, striving for the best, and choosing to live it proudly gives others who follow behind the motiviation to also thrive in their own way. And maybe most beautiful – for all the different stories you hear, I have also yet to meet a patient who isn’t willing to share with another. They are choosing to thrive in their own world and in how they show up for the lives of others.
Danny Speaking at Richmond CF Center October 2010
The truth is future is not guaranteed to any of us…. but when you know there could be an actual expiration date it can change the way you do life. We all would love to think it’s the sort of take risk, try everything once, go for your dreams type of approach – and sometimes it is, but often it’s how much energy you have to fight fear. Will all your energy get eaten up when facing the medical side? Or do you want to spend some of that fear fighting for a job or a relationship? Often the answer varies based on the situation – but the question is the same: how to move forward despite, how to thrive when it is hard?
Cystic Fibrosis Foundation (CFF), 2016 Celebrate Every Breath Gala, November 13, 2016 Washington, D.C .(Rodney Choice/Choice Photography/www.choicephotography.com)
Danny doesn’t complain about CF. Sure there are things he wishes he did better  – but acceptance of this burden is one he has managed pretty well. However if you were to ask him the hardest part of the illness he will tell you it’s the in ability to plan for a future. Staying motivated to work on your life, when your not sure you will stay in it is hard. So choosing to find ways to thrive are acts of courage – but Danny will also tell you those acts give you the ability to keep going.  So in our world it has been identifying what we want and doing or best to take the steps – big and small- towards it. For others it’s the choice to live the most present now and not get caught up in a plan to move forward. Thriving isn’t the same as success, it is trying to make the mot of where you find yourself in this moment. We have chosen to keep fighting for future – jobs, family, financial freedom. This can mean a lot of frustration, struggle and a chance none of it will ever happen. That is why we have to constantly focus on the idea that being able to strive for this life is just as much of blessing as getting there.

 

Cystic Fibrosis Foundation (CFF), 2016 Celebrate Every Breath Gala, November 13, 2016 Washington, D.C .(Rodney Choice/Choice Photography/www.choicephotography.com)
Others have chosen to approach CF adulthood differently. Not complicating it with distractions, but embracing their limitations. These folks I find to be some of the most at peace – they aren’t chasing anything. Often  their confidence in being present right where they are has helped to make them a source of motivation and wisdom – because really that is what we are all chasing, even if we don’t want to admit it. The human spirit being able to find peace, comfort and acceptance is rare and as people we admire those that achieve it Many of these individuals have become the most influential CFers in the community and that gift is truly thriving at its best.
Breath of Life Gala & Feature of Dan’s Magazine Cover at 4 November 2017
So as we wrap Cystic Fibrosis Awareness month 2019, that is what I wanted to acknowledge: the thriving that is going on in this CF world and how it looks different for everyone. Social media has provided platforms for sharing the many different ways folks live this life. That window into these lives has been transformative for both CFers and their families to not feel so alone, but also for the outside world to learn about this community. The definition of thriving has also had the power to go beyond living ones best life, but also helping others through their experience. This reminds us of the power of possibility for how far this community has come and the unlimited options for the future. The world of science is looking bright with new treatments and therapies….. but it is the spirit behind the patients, their loved ones, and the professionals who have made their life’s work to better this group that gives me the most hope and pride. The future is unknown and that is one of the hardest parts – but we have learned to thrive in those conditions, and so it can truly only get better.
Speaking at Richmond CF Chapter
March 2019
Thank you so much for following along on my week of Cystic Fibrosis awareness and if you are interested in learning more or supporting the CF community here are few ways to do so:

 

https://cota.org/give/cystic-fibrosis-patient-fund/ (you might even recognize a few on this page 🙂 )

 

And remember to make it a great day!
Jackie

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