In the wake of today's tragedy in Las Vegas, I decided to change direction with the Blog article I had been writing for this week, as it brought up a great deal of reflection that I did not want to pass on processing, yet again.
Such devastating events of magnitude, either of natural disaster or terrorism bring cause for us to remember in our hearts, minds and prayers those who are going through such loss, pain and suffering. We identify with them, and in our own personal ways strive to share love through thought, deed and intention. We remember...
Today's painful and senseless horrors struck me, and remind us all that at any moment of any given day that our lives could end.
For those of us living with cystic fibrosis, along with our family and loved ones, there is an ongoing reminder of this reality of mortality. I have always viewed that as a gift in bringing constant awareness to the preciousness of every moment, and need to truly live life to its fullest.
In the wake of so many who lost their lives today, I remembered...
my brother, also with CF, who was only steps away from the World Trade Center when it was hit on 9/11. I remembered the reality that his life could have ended that day, and to cherish every day he is alive, as well as all the loved ones in my life.
my oldest brother, who would have turned 59 tomorrow, but passed away at the age of 39 from a viral heart infection. I remembered that CF could lead to my early mortality, but so could anything else and to live every day to the fullest with no regrets.
my second oldest brother, who also died from heart failure only 4 years ago, with stress triggering his demise. I remembered that life is too short to let stress dominate our thoughts and emotions.
my friend and colleague, Vicki Thompson who very suddenly and unexpectedly died from CF complications while next in line for a double lung transplant. I remembered that however promising tomorrow may look, it is never guaranteed and like Vicki, we should all strive to be a Free Spirit With A Wild Heart!
the thousands of people who managed to survive and now must rebuild their lives after senseless violence, earthquakes, hurricanes and unforeseen devastation. I remembered that survival is not easy, and often takes a strong will, passion for life, and support of others to make it through.
my father, who after losing a wife and working to raise two sons, allowed love in his life to marry again, raised three more sons later in life with two not expected to live past 10-years of age, lost his eldest son and battled to the end with cancer. I remembered the strength he demonstrated in his life not just once, but time and time again, all the while allowing love in his life.
Moments like today's tragedy along with the recent natural disasters are truly painful both to experience and witness. But they hold great value.
Value in resurfacing the humanity, care and love that transcends all racial, political and religious beliefs.
Value in remembering the good in humanity and community.
Value in reminding us of the preciousness of every day, and not taking a single moment for granted.
Value in reminding us to live life with no regrets and to march to the beat of our own drum that writes our own song and dance.
I would like to close this article in remembrance and celebration of my friend Vicki, whom I have yet to fully grieve the loss of. Vicki passed away nearly a month ago, and yet I still find myself speechless. She was one of the most powerful and brilliantly shining persons I have ever met. I knew this from our first snowboard run together in 2008. I considered myself a highly aggressive snowboarder, and Vicki in her petite stature blew me away!! Wow was she a powerhouse.
Vicki was one of the first CFLF Recreation Grant recipients in 2008. She received a second Recreation Grant a few years later - both were for snowboarding. In 2012, when we began the video project "Living Xtreme: Beyond Cystic Fibrosis", we wanted to feature people with CF who were also living FAR beyond the perceived boundaries of the disease. Vicki was a first round pick! But it wasn't just about her... she asked if her brother, an X-Games and Dew Tour snowboard competitor could also be considered for the film. Of course!
But it didn't stop there. Vicki wanted to DO more. To GIVE more. In 2014, Vicki accepted an invitation to join the CFLF Board of Directors - a challenge she was not sure how to meet, but knew she would give it her all. For the past several years, Vicki was a regular contributor to the CFLF Blog. You can see and read the articles she wrote HERE in a tribute by Program Coordinator, Erin Evans. (My personal favorite was Mermaids, Novelty and the Origin of CF). On top of that Vicki established her own leadership with her artwork throughout the CF community as well as inspiring lives with and without CF through yoga.
It pained me that Vicki's end came in the midst of preparing for Hurricane Irma to make a direct hit on my home in Miami. Despite the several 18 hour days of preparation to hunker down during the storm, and forecasts becoming so severe that evacuation was not just a necessity for safety from the storm, but for purposes of refrigerating more than $40,000 of medicine and having electricity to do therapy ( it became need for surviving with CF) - the loss of a friend, a Cyster, and a colleague I deeply respected dwarfed the imminent storm. On top of the exhaustion of driving 22 hours to North Carolina, it hurt to not be able to feel the pain. But during the long, long, long drive, a song kept coming on that I had not heard in many years but it truly spoke to how I knew and saw Vicki.
Vicki was someone who truly lived life with no regrets. She did what she wanted, regardless of fear. Her energy lit up this world in a way that very few do.
"Sing this song when I go. Sing it loud when I go. Sing it proud when I go..... I know the dog he yearns to fly..."
~ May your wings be soft upon the unfallen snow! ~
Brian Callanan is currently 40-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.
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