Finding silver linings is something I find myself talented at. Whenever I have suggested to parents asking for support in facing their child's life with CF that there are many reasons that I consider my cystic fibrosis as a gift in my life, I was always met with complete silence and sometimes a look like I have two heads.

But I have learned over the past 12 years with CFLF that I am not alone in this mindset.  While these are my own personal perspectives, it gives me fortification to know that the experience I have had throughout my life with CF is not an outlier, but is more common than I would have ever expected.

The following are five ways in which I have found CF to have added value to my life:

 

1. CF Makes Me Who I Am – Life with CF certainly has its challenges physically, mentally, and yes, socially. For the majority of my 39 years, I have done my best to be who I am, not give up my identity, and take every opportunity possible. In adolescence was probably the most difficult time when I was most subject to caring about what others thought of me. I’m not going to lie – that concern lingers very subtly in the back of my mind. But for the most part, I do what I do because I believe in it. 

I want to help others, especially those I can most closely relate to - and so I started the CFLF. I also like to help friends, family, neighbors and even strangers when possible. I know what it is like to need help, and at times how difficult it can be to ask for it. So I tend to offer help before it is even asked for. 

Everyone is also faced with choices in life, especially when there is a split in the road.  Do I go left or right?  My choice is typically weighed with some thought and analysis, but is typically made with a faith that something greater than me will also guide such choices. Faith in God, or whatever the chosen term for such a universal force that is greater than we will ever know, is something that has always provided me with strength, support, confidence, joy and love.  Sometimes I do not choose the right path, but with those ingredients inside me, I am able to make shifts to do the best I can. 

CF reminds me that I (nor anyone) is perfect, and that flaws, faults, mistakes and in ability to deliver on good intentions is a very real part of humanity.  With forgiveness I am probably most hard on myself, but with acceptance of imperfection, including my CF, I can recognize how and where to continually work on improving myself. 

 

2. Focus on Health – I feel lucky at times that my CF has given me such clear and detailed focus on my health.  Most people with CF are experts on their care, management, symptoms and advocacy as their life literally depends on it. 

Neglect, carelessness, avoidance or just laziness (and I do not confuse this with exhaustion) will lead most people down a path of unhealthiness. For people with CF, it will typically lead down a path of sickness and/or death.

While there are certainly cycles of being more or less physically active in regard to exercising for various reasons, there is never a lapse of attention to my health and micro changes in my body and mind.  Something as small as a slight increase in my sinus clearance will trigger three to five saline sinus-flushes for days until it is clear again.  I know that what bacteria or infection starts in my nose will go to my throat and then my chest.  So I do everything to stop it before it even starts.

This focus takes a lot of energy, time, and mental capacity and can also be a source of fatigue.  But I find that if I neglect this focus on health for even the slightest period, that my anxiety quickly increases and getting back on top of things becomes even more difficult.  I’ve related it to mowing the lawn every week instead of every three weeks – more attention actually makes it easier.

I feel that my CF has drastically highlighted Focus on Health as an added value in my life.

 

3. Every Moment is Precious – In the hundreds of CFLF Recreation Grant applications I have read, one of the most common threads I hear from others with CF is the appreciation for every moment as though it may be the last. OneRepublic's song/video illustrated this exactly, with my girlfriend thinking about me whenever it came on. The overlap was no coincidence, but it being filmed with another Brian with CF was a very cool one.

For me, this realization is a gift of living with CF that I could not imagine life without. It especially gives me an appreciation for the time I get with those most dear to me – I do my best to never take it for granted.

Life is short.  We don’t know how long we will live until we die, and (as far as we know) we only get one shot at it.  My life could end later today for no reason, or it could end another 40+ years from now. But we don’t know how long we have – EVER!

I have known many people with CF whose lives were taken too early because of their disease. Death was always a present possibility for them, not that it ever makes the loss easier.  But losing my two older brothers who did not have CF, the first when he was the age I am now, truly opened my eyes to this reality.

I find myself constantly in awe of breath-taking sunsets, the brilliance and beauty of nature around me, the playfulness of children, the unconditional love of family and my dogs, and possibility that my life could be ended at any moment on any day. I might get attacked by a shark while swimming, hit by a car while biking (or driving), caught in an avalanche while snowboarding or shot by some psychopath on a spree.  I don’t fear these things.  I accept them because death is a part of life (usually the last part), and I strive to make sure that ANY day is a good day to die and that I have lived my life as fully as possible up to this moment.

Whether life is short or long, there is really no excuse in my book to not make the most of it.  CF tends to give the people living with it, and those around them that very important reminder that Every Moment is Precious.

 

4. Go With the Flow – I do not enjoy fighting or confrontation, although I am not afraid of it.  But my limited awareness of Eastern philosophy has always considered the flow of water down a stream with a boulder in the middle of it. 

The nature of water will find its way around, under or over the boulder with very little hindrance or resistance.  In fact, over time, the water will wear the boulder away, reducing it to a pebble. 

As a child I would spend hours floating down the brook that went through our backyard, often walking miles upstream, and winding up miles beyond our house.  The preparation would include a packed lunch, my brook shoes, and maybe sunblock (I can’t remember).

In my adulthood with CF, I have considered the “Fight CF” as part of a cultural mindset we have of fighting against everything. While certain situations might benefit from such forcefulness, I also recognize that a great deal of energy is required and used in such an approach. 

If CF were my boulder in the river, I have accepted that it is there.  While I cannot and do not ignore it, I feel that the energy I could use in trying to fight this boulder to push it out of the way could instead be used on flowing past the obstacle, and not allowing it to block my path or cause me to stop to fight with it. 

Let me emphasize, this does not in any means mean that I ignore it.  In the stream of life, there are many boulders – some large, some small.  For me, CF is also not just one large boulder, but many that often create rapids along with other boulders. 

While navigating these rapids can sometimes be scary, painful and sometimes deadly, I find there can also be a certain level of growth, improvement, excitement and fun.

Living with CF has offered me the opportunity to accept the things I cannot change, the boulders in my river.  And in accepting them, I am then able to prepare for and navigate the rapids for a ride that enjoys Going with the Flow as much as possible.

 

5. You – Without CF, you would not be reading this blog.  Not only because your life would not be effected by CF in any way, but also I would probably not be writing such a blog, and may not even have these perspectives.  But because of CF, here we are.

Because of CF there are thousands, if not millions, of people that have gotten involved in a cause – the CF cause – in one way or another.  This disease has formed a global community that I am fortunate enough to interact with from all over the world. 

I believe that YOU are as much a part of life with CF as anyone else in the community, whether you are a distant acquaintance showing support, a friend, family member, care provider, neighbor, significant other, child of, parent of or any other connection. 

In many online posts, there is the use of #FUCF, which I have openly admitted my dislike for - for all the reasons above. While CF does claim many lives much too young, and create physical an emotional pain inexplicably for patients and anyone whose lives they touch, I am not advocating for a world with CF.

But I AM recognizing that without this disease, I would not be who I am, nor would the hundreds of thousands of others with CF - past, present and future – be who they are or touch the lives as profoundly as they do.  Because of this disease, there are millions who know a greater sense of hope, love, appreciation, dedication and willingness to help (even when there is no personal connection to CF) make life with CF as positive as possible. 

In my opinion, with YOU as a piece of the community, that beautiful and amazing community makes this world a better place – because of CF.
 

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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.