The Face of CF

In my previous post, I shared a favorite saying: “The difference between involvement and commitment is like an eggs-and-ham breakfast: the chicken was involved; the pig was committed.” I don’t know who the quote should be attributed to, but I think the individual deserves credit for such a clever and powerful analogy.

I first heard the saying many years ago at a fundraising event for the Cystic Fibrosis Foundation (CFF). A speaker used the analogy to describe his connection to the CFF and its mission to assure the development of the means to cure and control cystic fibrosis (CF). The saying resonated with me because, like the speaker, I was–I am–deeply connected to the CF cause.

I have been a volunteer with and advocate for the CFF for nearly ten years. From chairing my city’s Great Strides walk, to serving as my CFF chapter’s board president, to joining fellow advocates in our nation’s capitol for the annual advocacy effort, I have demonstrated my commitment to the cause in many ways. Each of those experiences has allowed me to promote CF education, provide information about lifesaving research, and offer snippets of why the cause is so important to me.

Last week, for the first time in all of my years with the CFF, I was asked to share my personal story at an event. Not just snippets, but the reason I am the face of CF. Although I immediately felt panic, I knew I would do it. I would do it for the same reason I always do things for the cause; I would do it for my brother Andy.

The speech I gave this past Friday night was a pared down version of the following:

My name is Blake. I am the face of CF.

My younger brother and only sibling, Andy, was diagnosed with cystic fibrosis at the age of three. I was eight years old.

For our parents, finding out that Andy had this disease was devastating. There are no words to describe what it was like for them to also learn that the average life expectancy of an individual with CF was 18 years of age.

With CF being a genetic disease, shortly after Andy’s diagnosis, I was also tested. I was submitted to the sweat test which was, and still is, the gold standard for detecting CF. Thankfully, the results came back negative.

I was too young to understand the gravity of the situation. I don’t know how our parents did it, but they forged ahead and set the foundation for Andy to have as normal a life as possible.

Andy’s normal included waking up at the crack of dawn for physical therapy and breathing treatments, taking a fist full of enzymes before each meal and snack, and regular trips to the hospital for check-ups and tune-ups.

But his normal was also being a tag-along on all of my Girl Scout outings–our mom was the troop leader. His normal was joining me and the neighborhood kids on biking escapades and creek stomping adventures. To others, if there was anything different about Andy, it was just that he seemed to cough a lot.

True to a typical sibling relationship, Andy and I grew up being the best of friends and the worst of enemies. I wholeheartedly claim him as my pesky little brother. But I believe that siblings of individuals with life-threatening health issues walk a unique path. On one hand, we have that typical love/hate relationship; on the other, we learn early how fragile life can be and, perhaps, appreciate our brother or sister more than we might otherwise.

It was impossible to be upset with my brother when our beach trip was cut short one summer due to CF. He was sick to the extent that physicians in Florida instructed our parents to get him back to his CF doctor in our hometown immediately. We drove directly to the hospital and Andy was promptly admitted.

There was also a time that Andy spent half of Christmas break, including Christmas Eve and Christmas Day, in the hospital.

In the grand scheme of things, missing a beach vacation or a family holiday celebration was no big deal. I just wanted my pesky little brother to get better.

When the gene that causes CF was identified in 1989, I was tested once again. I was a college freshman. My brother’s CF Care Center mailed me a kit to take to my campus clinic so they could draw my blood and send it back for testing. Going in, I knew I had a 50/50 chance of being a carrier of the disease. This time the results came back positive. And in that moment of reading the results, I realized that someday I would have to ask someone else to be tested; both parents have to carry the gene in order to pass on the disease to a child.

With the discovery of the gene and with other developments, I’m pleased to say that many things have gotten better over the years.  We have witnessed an amazing evolution in CF care. For example: When Andy was little, his physical therapy consisted of our mom giving him percussion therapy by patting his chest, sides, and back.  We called it “pats”.  As he got older, pats were replaced with a hand-held device we called a pats machine.  Several years later, the pats machine was replaced with an incredibly efficient pulmonary vest.

These and other improvements enabled Andy to live a better life. He sailed past those initial odds of living to age 18. He attended the University of Tennessee and played saxophone in the Pride of The Southland Band. He followed his passions; after working as a zoo keeper at the Nashville Zoo, he moved on to work with the Tennessee Wildlife Resources Agency.

As Andy’s big sister, I witnessed the full spectrum of his life and his experience with CF. Even on the worst days, when his will was tested to the limits of which I cannot imagine, he still had a mustard seed of hope for a cure and faith he would live to see it.

On April 24, 2002, ten days before his 26th birthday, Andy broke free from the chains of CF.

In his passing, Andy left a legacy of hope for and belief in a cure. That legacy lives in me, Andy’s big sister.

This is my story and I am the face of CF.

If you would like to know more about cystic fibrosis, please contact the Cystic Fibrosis Foundation.  Also, please feel free to contact me via the comments section.

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21 Comments

  1. Thanks for sharing your amazing story Blake.
    It sounds like your ‘normal’ included some pretty good times in almost 26 years.
    I bet Andy is very proud of you.

    – Shelley

    Reply
    • Thanks so much Shelley! 😉 I always appreciate your comments. Thanks for taking the time to follow, read and comment.

      Our “normal” was overflowing with good times! Anyone who knew my brother has an Andy story. He was a true character. Although I can’t see him, I know he is with me. 🙂

      Reply
  2. First, this made my cry. I’m now clutching tissues and sniffling.

    Second, you and your brother? And your parents? Amazing people. It sounds like your brother Andy was an amazing person. You do him proud, by remembering him so, and for continuing the fight.

    Great post, Blake. I’m really glad that you shared this.

    Reply
    • Ali, I can’t tell you how much I appreicate your words. For as much as Andy could get on my ever-lovin’ nerves, he truly was fantabulous. 😉 Anyone who knew him will tell you that he lit up a room. He was hilarious and I can see shades of his character in my children. His legacy of peskiness lives on in his niece and nephews. 😉

      Reply
  3. I am so thankful for all our memories we share with Andy. Dang-it could you give us a tissue warning or something?! I am so proud of you for all you and I know Andy beams with pride telling others, “that’s my sister!”

    Reply
  4. Piper Burch

     /  November 7, 2011

    I am so glad you posted this on facebook – otherwise I wouldn’t have known about it! You dd an amazing job on friday night – and obviously you were and ARE an amazing sister! Andy is so proud of you looking down from heaven!!!

    Reply
    • Piper, your words of encouragement and support mean so much! I’m so glad we got to speak for a few moments before the presentation. It helped calm my nerves. Thank you so much for reading and commenting!! 🙂

      Reply
  5. Marissa

     /  November 7, 2011

    brilliant! You were brilliant on Friday. No words to express my gratitude for everything you do for Andy. You are an amazing sister and your speech touched my heart in the most profound way. love you

    Reply
    • Marissa, I literally started shaking when you said you had a favor to ask of me. But, as I noted in the post, there was never a doubt that I would honor your request. I did it for Andy, and you, and Cyndi, and all of our CF family. If telling the story makes a difference for just one person, it is worth sharing. I am glad you asked me. I am so very thankful to you for giving me the opportunity to honor Andy in that way. Love you too!

      Reply
  6. Wow. That’s quite an emotional load for anyone to carry, let alone young children. To confront your darkest fears even once or twice is a life-changing experience for most people. To do so every day must have taken incredible strength, courage and love. Thanks for sharing.

    Reply
    • Jim – Thanks for your comment. You’re right. It does take an incredible amount of strength and courage to live – really LIVE – with a chronic illness. The strength and courage demonstrated by my brother and so many others I know with CF is what keeps me motivated to continue the fight for the cure. 🙂

      Reply
  7. This is beautiful and sad. And you are a great sister to a great brother. Chronic illness is so ridiculously awful in children and young adults, especially, and I am glad you are giving witness to it and carrying on the hard work of getting the message out. XOX

    Reply
    • simplyblake

       /  April 4, 2013

      Thank you so much, Barbara! Your thoughtful words are just what I need for days when it would hurt less to walk away. Keep up the good fight, we must! xoxo 🙂

      Reply
  8. Dana

     /  April 6, 2014

    This is just beautiful. I’m so thankful you continue to fight for all of us with CF!

    Reply
  9. Your words bring back such sweet memories of Andy in senior English. He never allowed himself to be down or self pitying and I never expected less of him than any other student (though I worried that I should be easier on him). He is one of two students I taught who had CF. They both were smarter, funnier–more outgoing and vibrant than other students. Wonder if that was a coincidence, or a characteristic of people who have the disease?

    Reply
    • Thanks so much for reading and commenting, Mrs. Boyte. You’re exactly right–Andy did not let CF define him. However, in regard to your question about his and the other student’s characteristics, yes, per my experience, CFers do share those special traits–with CF comes extra spunk. 😉

      Reply
  10. Susan Rider

     /  January 30, 2015

    You are the face of an angel! Very moving words. Andy was amazing as are you and your parents.

    Reply
  1. No One Truly Knows How Hard You Try « simplyblake

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