“Problems, be they economical, ecological, or whatever, are caused by a failure to see What’s There.  Unpleasant feelings come from illusions:  fear from What Might Be (which hasn’t happened yet), sadness from What Might Have Been (which is not necessarily what would have been), and so on. Piglets, living in fear of What’s Coming Next, What Can Go Wrong, What If I Do Something Foolish, and such, cannot enjoy and make the most of the present moment. Later, they look back and realize they didn’t live it.” (Hoff, B. The Te Of Piglet, 1992, p. 108)

I remember around the age of 8, eating my breakfast bowl of cereal before school and hearing ‘cystic fibrosis’ on the news.  I didn’t really understand what they were talking about, but later learned that they had fully mapped the CF gene, and that such development was thought to greatly increase the likeliness of finding a cure within the next 5 to 10 years.  I vowed to myself then to do everything I possibly could to live long enough to see that cure in my lifetime.

A few years later, during adolescence, I strayed from that vow – my pleasing and caring about others gradually came to be a greater priority than my caring for myself.   I realized later on, that like Piglet looking back on that time, I did not really live it.   I feared and worried subconsciously about CF. I failed to accept What Was There.

In the decades since, I have come to not only fully accept my CF and all that comes with it, but like so many others with CF have come to find beauty and value in it.  I have learned to embrace my CF for all the good and bad that comes with it, and to utilize my condition as a driving force. 

We are all going to die.  Some sooner. Some later.  Some from CF. Some from cancer. Some from drowning.  Some from a car accident.  Some from heart failure.  Others from who knows what?

None of us knows when our time is up, or how or why it will end.  But having cystic fibrosis, and being born at a time when the average life expectancy was less than 10 years old, the reality of mortality has been not only inescapable, but a very present factor. 

But I do not see death as the worst possible outcome of CF.  For me, not living the present – or living in fear, sadness, loneliness and missing all the beauty, wonder and love that is right in front of me is the worst possible outcome. 

The ‘War on Drugs’, the ‘War on Terror’, this virus, that epidemic – our culture trains us to be fearful and live in worry.  I no longer want to fight and be afraid, especially of what I KNOW I have.  I accept CF may kill me one day, or something else may. I’ve accepted that death is not something I need to have control over. But living is!   I know that I can choose to have control over how I think and feel about the world around me, and how I choose to behave. To me, THAT is empowerment. 

The beauty of Pooh is that he does not worry about this or that, and does not even really choose to, or not to.  He just is.  And he just does.  Or doesn’t.  To the over thinker like Owl, the important one like Rabbit, the over doers like Tigger and the worriers like Piglet, Pooh may seem naïve, and missing out.  But the reality is that Pooh is happy, content and simple – in a good way.  He just lives in the moment.

Cystic fibrosis is a disease that affects each person differently.  Physically. Emotionally.  Socially.  But the beauty I have seen in the hundreds of people with CF I have gotten to know virtually is that there are so many who, regardless of their physical condition, are thriving with CF. 

In an earlier post, I wrote about the car going where the eyes go, and the difference my perspective has made for me, with striving to achieve health instead of avoiding illness.  I guess I am expanding upon that in clarifying that ‘thriving with CF’ does not necessarily refer to just the physical experience. 

Some of the simple Pooh-like moments I find myself thriving include: enjoying the miraculous beauty of a sunset or flower; feeling the warmth of the sun on my face; a cool breeze tingling my skin; the tenderness of a simple hug; sitting in silence with a friend that needs no words; the wagging of dogs tails and softness of their ears; hearing a child laugh; being in complete dark and listening to my heart beat.  In all of these moments I feel SO alive – I thrive

 

CF brings my attention to life.  CF gives me a reason to not just survive, but to thrive.