The one thing that many don't realize about Cystic Fibrosis is how isolating it can be. We are discouraged to spend any quality time together unless we abide by strict infection control protocols. With that being said, many CF'ers and their families have sort of decided to stay away for one another in a best practices effort to not cross contaminate.
This for many years left me feeling like I was all alone in this battle. While I have my family and friends, I didn't have another CF'er who was walking in my shoes in ways that my support folks were not.
This was all before we could simply click one button and be on the Internet connected to millions of people around the world. Even as the Internet has become more widely available to just about anyone, developing a sense of community is tricky and hard to do even today, with all our glorious technology. There is still something magical about face-to-face relationships.
A few years back (before my blogging life) I had the opportunity to hear another CF'er speak in person. She spoke about the difficulties of her "early" years with CF and how those have transformed her. How she wished she could have been more interactive with other CF'ers. Her story of internal turmoil was very similar to what I had experienced.
I decided to blog. I decided that until something changed that would allow us CF'ers to be more closely connected I could put my experience out here for others to read and hopefully see that they aren't alone. This is what inspires me. Putting my words about my journey with this illness out for others to be inspired by. The journey is not always easy or clear cut but there are moments of jubilation and success.
My goal is to inspire those with CF to know that we are making progress, sometimes two steps forward with one step back, but nonetheless the momentum is forwarding moving. I also hope to inspire those without CF to see us as people with dreams, goals, futures and great strength. We are paving the future for those behind us. We are living full lives. We are going to college, getting married, starting families and so much more.
CF may be a disease that our bodies harbor but we are not CF. This is what inspires me. The ability to not let this disease consume us or dictate our lives paths.
Each day I find something that inspires me and I want to share that with you. So, that in those moments of loneliness or despair you have a glimmer of hope. A flicker of inspiration to push thru to the other side.
~Doodlin'
This for many years left me feeling like I was all alone in this battle. While I have my family and friends, I didn't have another CF'er who was walking in my shoes in ways that my support folks were not.
This was all before we could simply click one button and be on the Internet connected to millions of people around the world. Even as the Internet has become more widely available to just about anyone, developing a sense of community is tricky and hard to do even today, with all our glorious technology. There is still something magical about face-to-face relationships.
A few years back (before my blogging life) I had the opportunity to hear another CF'er speak in person. She spoke about the difficulties of her "early" years with CF and how those have transformed her. How she wished she could have been more interactive with other CF'ers. Her story of internal turmoil was very similar to what I had experienced.
I decided to blog. I decided that until something changed that would allow us CF'ers to be more closely connected I could put my experience out here for others to read and hopefully see that they aren't alone. This is what inspires me. Putting my words about my journey with this illness out for others to be inspired by. The journey is not always easy or clear cut but there are moments of jubilation and success.
My goal is to inspire those with CF to know that we are making progress, sometimes two steps forward with one step back, but nonetheless the momentum is forwarding moving. I also hope to inspire those without CF to see us as people with dreams, goals, futures and great strength. We are paving the future for those behind us. We are living full lives. We are going to college, getting married, starting families and so much more.
CF may be a disease that our bodies harbor but we are not CF. This is what inspires me. The ability to not let this disease consume us or dictate our lives paths.
Each day I find something that inspires me and I want to share that with you. So, that in those moments of loneliness or despair you have a glimmer of hope. A flicker of inspiration to push thru to the other side.
~Doodlin'
Hi Illness Inspired Words Team,
ReplyDeleteMy name is Anuj Agarwal. I'm Founder of Feedspot.
I would like to personally congratulate you as your blog Illness Inspired Words has been selected by our panelist as one of the Top 75 Cystic Fibrosis Blogs on the web.
https://blog.feedspot.com/cystic_fibrosis_blogs/
I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 75 Cystic Fibrosis Blogs on the internet and I’m honored to have you as part of this!
Also, you have the honor of displaying the badge on your blog.
Best,
Anuj