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Volunteer Advocate
cf insights cf insights

Living a Full Life: Alex’s Story

I have been LIVING with Cystic Fibrosis for 46 years and counting. At first glance I may appear fine – but I am not. I am acutely ill. We know looks aren’t always what they seem. By first looking at me you may not realize that my lung function is less than 30% that I have anxiety daily and that my illness is progressive. This is the hand I have been dealt, and the hand I want to Champion. I believe there are many more wonderful possibilities on the horizon. Supporting Cystic Fibrosis Canada offers that hope to so many people.

I was always active, playing competitive sports growing up, investing time in healthy living, and doing whatever my CF team advised. With the help of all those who work tirelessly to find answers, I have enjoyed many wonderful life experiences. For that I am grateful.

I strive daily to come to terms with my declining body, not for how it looks, but for how it works.  By doing everything I can to fight against my illness, and nurturing the things I cannot combat, I show kindness to my mind, body & soul. My truth is that I am both chronically ill, and more than my chronic illness. I am infinitely thankful for all that I have and all that I have experienced. My “life’s wealth” is immeasurable.

We can all read about CF and see what it does. I do not have words to describe the difficulties, pain and angst it causes. It is awful, increasingly difficult daily physically, emotionally and mentally. Look it up – it’s terrible. Let’s count that as understood for this.

My health took a major decline in recently. I developed a pneumothorax (a collapsed lung). There were major issues getting the pneumothorax resolved. This resulted in undergoing surgery and being hospitalized for a month. Due to a series of complications, my recovery was very slow, my weight plummeted, and when my lung function dipped below 30%, transplant discussions started…

A decision was made, after lengthy investigation, that I am eligible for transplant, in fact a very strong candidate. At some point, likely sooner than later, life will become more challenging than perhaps I can begin to comprehend or prepare for. It will get hard… unfathomably… and at some point my name will be added to the transplant list. Following that, I hope to receive a double lung transplant.

There are statistics for this and statistics for that; I try not to focus to them (good or bad). I try only to control the things I can. I offer my best toward what matters. Knowing that good things are possible, I continue nurture my mind, body and soul.

My perspective toward my future is positive. Even though I am scared and I am challenged daily with fear, but I view my future as filled with tremendous opportunity. Being assessed for transplant offered me a glimpse of what is possible and strengthened my already steadfast motivation to properly care for myself always. I try to offer a positive perspective and outlook through various channels by drawing upon my life experiences and health background as an educator, coach and person who lives with a chronic illness.

I taught for twenty years, coached daily and became the department head of physical education. Each day was a privilege. Some days were a challenge for my own health reasons and some were a challenge for everyday teaching reasons. That said; each day had a moment of awe, wonder and complete reverence.

Focusing on my health, wellness, and daily active living have profoundly impacted my life. My self-care is a full time commitment now as I believe deeply in treating my body with respect and kindness. I want to help others as I’ve helped myself, as the notion of giving and offering to others gives me an immeasurable sense of ease, value and worth. Offering kindness is a tool for healing unto itself.

The small things life has to offer, and its infinite possibilities are a constant sense of marvel for me. I certainly do not wish any day away; I love my life! Whether it’s dancing with my wife in our kitchen or so many other simple joys, I take time every day to be present.

Supporting Cystic Fibrosis Canada, to me, means offering people a chance at a longer and more fulfilling life. It offers people the opportunity to experience the grandeur that is out there. In my case though, something as simple as, dancing with my beautiful wife in our kitchen has immeasurable meaning as we hope to grow older together. Offering support to Cystic Fibrosis Canada may help other grow older and dance as well.

For Alex, and everyone else with CF, be the reason for a cure: http://bit.ly/2ADWJym

Credits: Photos by Kate Kostandoff