Windhorse Sailing

I have received many emails about the website and its association with the Cystic Fibrosis Foundation. Officially, there is none I used the logo without formal consent. I inferred permission from my relationship with my sister Celene. She suffered her whole life from C.F. In October of 1999 Celene died from complications of a double lung transplant at the age of 37. This website is in many ways a reflection of the profound effect her life and therefore her death had on me.

Like most brothers and sisters we had little time for each other growing up. Seven years older than me, Celene had better things to do and I had no interest in her girl’s life. I recall a time when I was five: she was forced to take me “trick or treating” for Halloween. She took me only around the block. My sister Gigi took my brother Tad, one year older than me, far and wide and I was forced to envy his overflowing pillowcase of candy. To make matters worse, a neighbor had given me a nickel for UNICEF. Celene took it from me and actually gave it to UNICEF. We definitely weren’t on the same wavelength then.

All in all it was a normal brother sister relationship in a normal house. My version of normal included swallowing a handful of vitamins before school everyday. My version of normal included bulk bottles of vitamins that filled one shelf of our largest kitchen cabinet. All the other shelves in that cabinet were filled with prescription bottles that somebody was taking. That was normal. Didn’t everybody else’s mom know volumes about vitamins and health in the 1970s? Didn’t every family have an account at the local pharmacy? I guess I knew but I didn’t. As a kid you go about your life not really paying so much attention to these things.

I know now that Mom and Pop did and sacrificed a lot to make sure that things were “normal” and could remain so. I hope never to know how much they worried. Their efforts created a miracle that let Celene pursue tennis in high school and later attend college far from home. When in the beginning there were questions as to how long she could live.

The one thing my parents could not make normal was Celene’s deep congested cough - a hallmark of cystic fibrosis. A CF sufferer does not produce the enzyme the breaks down mucus in the lungs. As a result they are forced always to clear this particularly gluey substance by coughing. Over time this cough creates scar tissue that diminishes the capacity of the lungs. While this cough belied Celene’s physical weakness no one could deny her vibrant life force. She pursued tennis, but she achieved popularity. She was student council president of her high school, but more importantly she won innumerable true friends that would be with her throughout her life, the majority of whom are reading this with you. Many years past her death she is far from forgotten and she is anything but gone.

My true friendship with Celene did not begin until we were both grown adults. Better late than never, I was blessed to have known her at all.

In the winter of 1995, I met with my best friend Justin Gibbons. Cigars and whiskey at a trendy New York lounge, we played aristocrat for the evening. We met regularly to discuss the decisions we were making that would shape the rest of our lives. Like a typical 25 year old, I was completely focused on my career and success. However, Justin, anything but typical, liked to focus on the “bigger picture,” including all aspects of life. He has always been able to consider the whole and asked the questions hardest to answer. On this particular evening, he asked about my family, leading up to the question, “What is the prognosis for Celene?”

The question caught me off guard. I said I heard mumblings of a lung transplant down the line. Selfishly I only said so because I wanted to present my worries as grandly as I projected my future. Truth be told, I had no idea how accurate my embellishment would be. Based on my answer, Justin made a grand suggestion - that I spend more time getting to know Celene or regret one day not having done so. In the days that followed I didn’t stop thinking about his suggestion.

I will forever be thankful for Justin not only for his suggestion, but for helping me act upon it as well.

A long island guy, always critical of New Jersey, one Saturday he offered me the opportunity to show off a bit of New Jersey culture if I would invite Celene. The three of us made a Saturday trip to the Thomas Edison museum in West Orange, NJ. What first seemed like a duty became a great excursion. I enjoyed hearing the two of them laugh. I was especially impressed by Celene’s personality. How had I missed it before? What had changed? Unfortunately, the fun was short lived. Celene tired quickly and my day was cut short. Like a New Yorker, transplanted to the suburbs, I was frustrated and annoyed not to go at my pace. I was selfish - there was a lot I would learn.

Three years later, in 1998 Celene spent nearly three months in St. Vincent’s Hospital in Manhattan, and I would visit her almost every day. I would show up after work with jellybeans, chocolate milk and pretzels, pizza, or grape soda, whatever she thought she could handle. She needed to gain weight. Even though I liked to complain about the rain or the heat as I ran far and wide to find the best of these items there is nothing I wouldn’t have done to get them to her. As selfish as always, her smile was a gift to myself. We would sit each night and watch the new Hollywood Squares (which I never liked) and The Nanny. After which, we would just sit and talk until she fell asleep. I wasn’t there for the TV, I was there to hear her laugh.

Then she and Mom moved to Milwaukee to be near the transplant center. We did not know, but it would be a ten-month wait for the transplant. I visited as many times as I could for what I called, my mom and Celene fix. I missed being with my sister, someone I came to so respect. She inspired me most in those months. The weaker she got, the more strength she seemed to provide. It broke my heart to listen to hear her struggle to breathe in her sleep. Laughing would lead her into a fit of coughing that would sometimes last ten minutes and exhaust her for the day. But yet she met everyday with a smile and often made herself laugh while she tried to make you smile. She would spend her day sending lengthy emails to her friends and working on her art literally until she dropped. I grant that it did not take much, but she never despaired. She was determined to make the most of her everyday. She was what our Pop would have called “fearless”.

So in honor of my sister, Celene, I use the CFF logo to call attention to a cause I hold as dear as her memory. There are many who hope you will find it convenient to your heart to learn more about the cause and if possible convenient to your finances to give a small gift to help. I thank you for asking about it.