1. HOPE - Over a bowl of cereal in 1989; it must have been Lucky Charms. I was 13 years old and in my usual fuzzy state before school listening to the Today Show ramble on about stuff that was just garbled morning mumble to me. "Cystic Fibrosis" was a headline. I perked up. I know that name. Wait, this is relevant. The CF gene had been discovered, mapped, and the Cystic Fibrosis Transmembrane conductance Regulator (CFTR) had been identified - whatever that meant.  This was huge. This spurred a belief that a cure for the disease that was threatening my life, my brothers life, and the lives of tens of thousands of others could potentially be on the five-year horizon.  It was at that moment that I decided and vowed to myself, that I would need to be healthy long enough to see that cure in my lifetime.  That moment was, and continues to be my HOPE with CF.

 

2. EMPOWERMENT - December 1996, I had just returned home from six weeks of backpacking across Australia from Darwin in the Northern Territory, through the Tanami Desert to Alice Springs to go to the spiritual mecca of Uluru (Ayers Rock), to Adelaide, hike the mountains of Tasmania, to Melbourne and to Sydney before my departure.  The hardest and scariest part was that I could not bring my medical equipment with me on these six weeks.  No Vest.  No nebs.  Just what pills I could carry and swallow.  I was terrified, and motivated to exercise EVERY possible moment through hiking, swimming, biking, climbing... whatever. I did not want to get sick, and have to end this incredible journey early.  I came home exhilarated, pumped on life after all I had just experienced, and upon an immediate check in at my CF Center in New York City I was astounded to find my lung function was up 10% from before I had left.  This was the biggest jump my FEV-1 had ever seen! While I knew I could not sustain that level of all-day, every-day exercise in my daily life of reality, it was as that moment that exercise gave me EMPOWERMENT physically, mentally, emotionally, psychologically and spiritually over my CF. My quality of life had jumped 10,000%. I now wanted to be as healthy as possible and do every possible treatment and take every possible supplement and exercise every possible bit so I could be healthy enough for my next adventure.

 

3. ACTIVITY - April 2006, I bought a used bike. Buying a bike was mostly to get around town, not to have to deal with parking, and to save my wallet and the environment from any unnecessary use of gasoline. I also realized I could go lots of cool places with my bike that I could not by car, or would not by foot.  I began to explore the bike paths, uphills and downhills, and beautiful scenery of Vermont at a slightly slower pace. The dots started to connect: exercise could be something that just fit in to my everyday life, and was just part of my day. It was at this moment, that I realized my lifestyle is what could determine my level of ACTIVITY, which would impact my CF. It usually takes time and motivation to make exercise happen when doing it as a compartmentalized routine.  I found 'building it in' made it much more realistic and effective in that I was doing it multiple times each day, instead of one session for an hour. Yes, this was the same bike that lead me to ride over 2,000 from the Canadian border of Maine to Key West in 2006.

 

4. LOVE - 1993 was my Junior year of high school, and I was seriously depressed, and was suicidal for a bit. I was searching for, and did not understand the importance of LOVE. I believe that surviving cystic fibrosis requires the acceptance of love. We are brought up with being cared for by parents, doctors, nurses, families, and communities. Having a disease like CF, that inevitably becomes increasingly challenging, does not have remission, and does not yet have a cure requires incredible emotional, psychological and spiritual strength, which can be unsustainable without the help and love of others encouragement and care. But, one can not only be the recipient of love without becoming bitter, resentful and feeling pitied. One must give love, and care for others. It creates a sense of being needed, of purpose, and of meaning for me. Without that, I might feel like it would not matter if I existed or not. But the most challenging is to be both the giver and receiver at the same time - to love yourself.  Cystic fibrosis is designated by our culture as a disease, an imperfection, a flaw. It is easy to find difficulty in accepting yourself as you are, perfect the way you were made. Everyone has challenges, and this one you have is because you are strong enough to handle it.  It was at that moment of hitting rock bottom, very early, that I learned loving myself was not an option, it was a necessity. If I did not love myself truly and wholly, I would continue to neglect myself and CF would kill me rather quickly. Also, if I did not love me, how could I ever expect anyone to find me attractive, or to love me the way I strongly desired?

 

5. TIME - Also in 1993, my first two weeks in the hospital for a "CF Tune Up" as an adult dragged on for what seem like forever. Last year, another year slipped by faster than I can comprehend. The busier I am, the faster the days and years click by. I feel like the only way to slow things down is to do less. OR to be more present in the moment.  TIME is the most inflexible resource. 60 seconds does not change from one minute to the next, one day to the next or one year to the next whether you are in Alaska, South America, Egypt, India, France or Australia. However, I believe time is the one resource we have the most control over. We can choose how our time is used, but it requires the use of both words "Yes" and "No" to opportunities. We can choose if our time is spent at work, with friends, family, or alone, doing therapies and medications, exercising, reading, sleeping, being lazy on the couch, eating, recovering, praying, or a million other options. But those choices we make, especially with CF effect not only how long we will survive, but also the quality of life that we have, whether that longevity is 12, 23, 39 or 79 years.  The choices for the use of time is what makes our life what it is.

 

6. HAPPINESS - May 2006, I turned 30.  Some of the most significant expectations I had of myself and of life, like being married and building a family by this point in life, was not happening, and instead of stressing about them, could let them go.  I realized at this point in my life that I was developing a tendency of focusing on a "Measuring Stick of Failure", based on what was not happening or being accomplished versus what WAS.  This reflection enabled me to gradually change lenses, and focus more on the gifts, blessings and amazing accomplishments that WERE a part of my life:

• a supportive and loving family and network of friends
• an excellent education
• a religious upbringing that enabled me to understand and have faith especially when it was needed most
• having traveled to see and experience many parts of the world
• having healthcare that was enabling me to live life and not die at the age of 10 like was forecasted at my birth
• the desire and enjoyment of exercising including skiing, hiking and now bicycling
• amazing dogs that I raised and loved reciprocally and unconditionally

This change of perspective is what has truly given me HAPPINESS.  These are what makes my quality of life worth living, and continuing to maximize enjoyment to the fullest.  One of the precious gifts of cystic fibrosis that infects not only patients, but also those around them, is that EVERY MOMENT IS PRECIOUS, BECAUSE IT MAY BE OUR LAST, SO LIVE LIFE TO ITS FULLEST.  

   

 

 

 

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Brian Callanan is currently 38 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. You may email him directly at brian@cflf.org.