Advocacy: Screaming Out With Half a Breath

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Brian Callanan
FL Capitol Lighting

When I was six years old I remember my first TV news interview about cystic fibrosis (CF). I remember being shy, timid, and hiding in my mothers arms only able to answer yes or no questions. I was afraid of judgement, attention, and worst of all, pity. I did not realize that this was my first platform to have a voice. I guess I did not realize how important it is to have a voice when very few people truly understand what it means to have a rare disease.

When I was eight years old, I learned that a 12 year old girl in our town with CF died. That was when it first struck me how significant having CF was. Until that time, cystic fibrosis just meant having to take pills when I eat, intense stomach aches sometimes, and having to do chest therapy with my parents clapping my sides and back (which I kind of enjoyed). But all of a sudden it meant that I might die in the next 2 to 4 years. This was when I realized the importance of asking for help on a public scale.

When I was 12 years old, in sixth grade, I spoke at the first "Great Strides" fundraising walk that my parents had organized in New Jersey where I grew up. I thanked people for coming to be a part of an effort that could save my life, and over the years that walk became foundational to the growth of a goliath organization focused on research and a cure for CF. However, I still didn’t really know then that my voice was making a difference.

32 years later, I have shared my story with governors, federal and state legislators, mayors, authors, movie producers, radio shows, and a small booklet of newspaper articles. I have successfully pushed for state resolutions and proclamations, and with help even turned the old Florida capitol building purple. 

At the very least, I hoped my voice and my story would mean that at least one more person knew that this disease with two letters was not the same as any other disease with two letters. CF was not to be mixed up with MS, or CP, or JD. And at the very most, I continue to hope that society and its leaders hearing the words “cystic fibrosis” as much as possible might impact a greater awareness of a minuscule population.

As cystic fibrosis treatments have always sharpened the cutting edge of medical technology, I found it also pushed the ceiling of medical costs, which was difficult to wrestle with. Was my little life really worth this much money?

Later in life I began to realize the value of the tenacity, discipline, and drive that was required to become older with CF. I realized that those who had the ability to not only survive, but thrive with such a lifelong uphill challenge we’re also very likely diamonds in the rough. I eventually realized that such spending on medical reseach and development of new life saving treatments was maybe more of an investment in the curating of these diamonds.

While leaders and legislators often see numbers on a page, I wanted my advocacy to help them even just realize that those diamonds were even present in such rough terrain. These unpolished and uncut diamonds are the people who do not know how to give up. They might be the people who expand our existence beyond earth. They might be the people who cure cancer. They might be the people who accomplish the impossible. And their preciousness is made profoundly greater with every life that has been sadly lost too early because of this disease.

While the state of Florida where I now live, and most other states are not currently recognizing cystic fibrosis as a high-risk group, amongst others, that should be receiving the COVID-19 vaccine, it is frustrating to realize how few decision makers still truly understand life with cystic fibrosis. But it is all the more reason to keep screaming out to be heard.

This past spring, during quarantine, my understanding and appeal for advocacy took on a new meaning. My 16-year-old stepdaughter participated in the first ever virtual teen advocacy day with the CFF. As I worked with her to understand cystic fibrosis, my medication, treatments and the psychosocial impacts of cystic fibrosis, I saw advocacy take on a new life. As I witnessed the stories and videos of teenage people with CF, children or family members and even friends of people living or passed with CF, I was astounded by how articulate, knowledgeable, and insightful these younger voices were.

I believe that a cure for CF is in my lifetime, and I want to be a part of the push that makes that happen in any way possible. While those of us living with CF, or other rare diseases, in some way might not necessarily have the loudest voice with limited breath, screaming at the top of our lungs, whether we have a full breath of air or not, is what it will take to make change happen.

What the CF community has achieved in the past 70 years, and continues to pioneer in the coming years also paves the way for innovative technology that will also make the impossible come to life. So whatever your lung capacity is, and no matter how big or little you might perceive your voice, share it as loudly and as proudly as you can, because only you have your voice and it needs to be let out.

 

Help Others Live STRONGER and LONGER- 

Brian cycling

 

 

Brian Callanan is now 43-years-old, and was diagnosed with cystic fibrosis at birth. He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.

 

 

 

 

                            

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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