When I was in sixth grade my oldest brother, Billy, introduced me to sailing for the first time. He was relocated for work in Miami, and we went out on Biscayne Bay in his 22-foot boat for an afternoon. The warm turquoise blue waters, the heat of the sun, the wind splashing the waves – I was hooked. Little did we know at the time, that the particles of salt I was also inhaling were also doing me good.
Having races with friends, capsizing and having splash fights, figuring out how the wind would blow you in what seemed to be one direction only, were the moments that I found myself most enjoying. But when I look back, I didn’t really know why sailing was the activity I most connected with at the time. Maybe Vicki’s post on our hidden CF connection to Mermaids might explain it some.
In my sophomore year of High School, Billy again brought my enjoyment for sailing to a new level. He and Stephen, my second oldest brother, organized a trip sailing in the Virgin Islands on a 44-foot boat, Charisma, that we would command. The memories of Biscayne Bay were now greatly elaborated into secluded white sand beaches, exploring coves by dinghy, snorkeling shipwrecks, climbing through the massive boulders at the Baths, and visiting the Sand Bar on a tiny island at the Bitter End.
While all this adventuresome fun was a great part of what got me hooked on sailing, it still didn’t explain the connection I felt, and understanding of this passion that would also find me enjoying sailing through a snow storm with icy waves crashing over the bow years later.
When I graduated college in 1994, Billy gave me my first (very used) 20-foot sailboat to bring to Vermont and sail on Lake Champlain. It was quite different than a sunfish, and was not as big as the cabin boat Billy had. With no motor, and not attuned to the squirrelly winds in Burlington Bay, my first attempt with my friend Sarah found us very close to the hull of a passing cruise ship, with lots of people waving. Scary, but fun.
Months later, when Billy passed, I sold that boat, and bought his boat that he had taught us on years earlier in Miami, which I would own for almost the next 20 years. It was on this boat that I would spend many great days and nights with friends sailing, enjoying perfect breezes, getting beat up by gusts and storms, and have many memorable moments. But the understanding of my connection to sailing was much deeper, and came through the many other days and evenings I would sail by myself, enjoying sunsets and solitude at anchor in a bay or just drifting along reflecting on the water and my life.
What I came to realize, was that sailing was my passionate expression of my life with cystic fibrosis. It started by watching the tiny twirls of water come spiraling off the stern and rudder, and just feeling any level of stress, depression or anxiety similarly roll off me.
In those moments, it did not hurt as much to feel as alone as I felt sometimes, or to worry about how my life would play out, if I would ever meet the ‘right’ person and get married and have children, or if my career would be successful in allowing me the lifestyle that provides me such life sustenance.
But even deeper, and more simplistically, it was the actual act of sailing that was what came to define my outlook on my life with CF. This force, the wind, could at times be at my back, and carry me with great ease in the direction I was heading. However, it seemed at least half of the time, the wind would be opposing me and looking to blow me backward, if not even knock me over.
Sailing requires that this opposing force of the wind be harnessed, and utilized as a driving force to propel you with defiance into that opposition. This is making ‘windward headway’.
Cystic fibrosis has become my wind that at least half of the time seems to be a force that makes my life more challenging, and is not necessarily carrying me with ease to my destination. But while I have learned to harness the energy of CF into a force that propels me, I feel as though I have mostly transformed it into a positive aspect of my life that drives and inspires instead of pushing me backward. Taking on this life long challenge can be scary at times, but for the most part has given me more than it has taken from me.
There are times when the wind blows harder, and there must be adjustments to the sails, the heading and even where you are sitting on the boat. For me, one of the hardest things is to give up the helm when I need a rest, especially when the wind is blowing hard, to let somebody else drive. Going in the hospital has never been an easy thing for me, but I do accept that sometimes letting someone else drive does me good.
Being in control is critical to not tipping over and capsizing. But having faith and trust in your crew is also essential with clear and open communication being the foundation. My CF care team, now being new for the third time in my life, requires development of this trust and communication. I am the captain of my body and my CF care, but it does go much better and is much more manageable when I have a solid crew that can operate as a well-oiled machine.
I realize that everyone with CF has a different and unique case with many levels of severity. However, as you can tell from the theme of all my posts, I believe is that your perspective is what can affect the experience of CF the most. For many, CF is what is in control and we are in for a wild and painful and often destructive ride. I only offer for consideration the possibility that how we view ourselves, and our journey is what can turn a horrific and treacherous storm into a bold and courageous adventure.
Brian Callanan is the founder and Executive Director of the CF Lifestyle Foundation. Diagnosed with CF at birth, he also has one of four older brothers who also has CF. Brian grew up in New Jersey, but spent 17 year in Vermont, and recently relocated to Miami Beach to pursue a more hypertonic saline lifestyle by the ocean. He loves adventure, has two dogs Tilley and Scrappy, and always looks forward to family time. He can be reached at brian@cflf.org.
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