In the past three months, I have lived through one of the most physically painful periods of my life.  I underwent two back surgeries to repair injuries (herniated disc and compression fracture/bone spurs) from a skiing fall almost 20 years ago. 

At the time of the injury, I almost had to take a medical leave from college due to the immense amount of pain and medication required to treat it.  Three other times I have had to visit the Emergency Room for severe exacerbation, mostly stress induced.

Prior to surgery, I shared with someone that this injury and chronic pain has weighed so much more heavily on my life than my cystic fibrosis, and has also made my CF so much more of a challenge to manage.  And while I have always believed that having CF has driven me to live more fully, my back injuries have been the main preventer of being able to do that. 

Ironically, I believe that my life with CF has taught me many lessons that have given me the perspective, strength and patience to deal with the physical and emotional stresses faced in life. 

During the past three weeks of recovery, I have had a significant amount of time to reflect on some of the thoughts and beliefs that have upheld my optimism and drive for living as successfully as possible with my CF (and other issues).

1. With every difficulty in life, we can choose to become Bitter or Better

When my oldest brother, Billy, was on his death-bed in 1998, this was a piece of advice I recall my father saying to us.  I had been so mad that none of my prayers had been answered, and I spent months, if not years in a state of resentment.

A support in my life offered me the book, “When Bad Things Happen to Good People”.  It helped me understand that blame was not at all useful.  The same advisor asked me, “If you could trade all the pain and suffering you are experiencing for having never known your brother, would you?” The answer was obvious.

My perspective and energy was able to transform from blame and resentment to an appreciation of the gift of his guiding and positively impacting my life in so many ways. 

In the hundreds of people with CF I have had the pleasure of reading essays from, it is so incredibly clear that life with CF is often considered to be a gift in giving an appreciation of every moment of life, without taking people, places, things or time for granted.

 

2. You cannot change the wind, but you can adjust your sails

For 25 years or so, I have related the concept of sailing to my life with CF.  In theory, sailing takes an opposing force (the wind) that should blow you backward or even knock you over, and harnesses that opposition with a balance that propels you into it with a driving force.

Sailing requires constant adjustment.  Ropes are constantly trimmed (taken in), or eased (let out) to adjust the sails as the wind increases, decreases or changes direction in order to keep your set heading.  If you do not pay attention, the boat will stop, change direction, and/or possibly capsize.  This can happen very quickly, and the unexpected swing of the boom can even kill you in a split second.

Living with CF also requires constant attention to the slightest changes in cough, congestion, pain, medications, exercise, physical and emotional stresses, quality of rest, and on and on. 

CF is a significant force that will provide a constant source of opposing force, and require ongoing attention that becomes expertise.  Sometimes when the sails are set just right, cruising can almost seem easy.  These moments of almost perfect balance are what I consider to be achieving my optimal health.

But for most of the time, we will need to constantly adjust not only to our lungs, but to all of the factors (work, travel, diet, pain, relationships, money, emotions, etc.) that may compromise our vessel. If we are attentive and constantly adjusting accordingly, especially in the rougher and stormy periods, we will actually experience less fatigue, stress and overall enjoy the journey much more.

 

3. ‘Do. Or do not.  There is no try.’ – Yoda

The word ‘try’ I believe is for lack of commitment. 

Living with cystic fibrosis requires relentless commitment. 

There is no value in ‘trying’ to do my therapy, or ‘trying’ to take my medications.  The only value is in actually doing it.  The real detriment is in not doing it. 

When I was in excruciating pain from surgery over the past two weeks, my lungs did not care.  They still needed therapy to keep mucus from building up.  I told myself that I would ‘try’ to do my Vest.  While it was only for five minutes instead of 40, the fact is, I did it.

I think Yoda’s point here is that the result is all that matters, not the intention.  When you are going to ‘try’ to call someone, at the end of the day, did you call them, or not?

When I was able to go to a gym regularly, as much as I didn't’t really feel like it, I would either go, or not go.  However, if I told myself during the day that I will ‘try’ to go after work, there was a very different result than if I told myself I am ‘going to go’ and making a commitment. 

A friend once told me that he believed that “Anything other than a Yes, is a No.” I found this rather extreme at the time.  But now I consider it more carefully.  If there is a ‘welllll…’ or ‘maybe’, that is not a Yes and incorporates the likeliness of a No. 

When committing to life with CF, I believe that there is no room for anything other than a full dedication.  For me, that includes researching and knowledge of the disease and of all the possible ways that I can help myself not only to survive, but to thrive. 

Vest therapy, aerosolized nebs, insulin shots and oral medications for me are a given.  But supplements, a healthy nutritional diet, exercise, plenty of rest are all extras that can give added benefits.

For every component there is an added need for commitment.  Do it.  Or do not.

 

4. ‘Every little thing, gonna be alright’ – Bob Marley

There are countless times throughout the day, week, month and year that I tell myself this.

I think worry is an inherent and natural part of life and being human. Having a chronic disease can drastically amplify worry as well.  However, it is not productive.  I believe in fact it is detrimental.

Going back to #3, results are what matter.  Worry, for me, is one of the biggest roadblocks to achieving results.  Living in the ‘What if’ is a state that causes us to completely miss the moment right in front of us, as beautiful or important as it may be. 

The term ‘paralysis by analysis’ can encompass countless situations and circumstances. I partly don’t like this term because I know several people that live full and happy lives with some type of physical or developmental paralysis. But I recognize that being restricted emotionally by fear, anxiety and/or worry can be like being in a prison, trapped against your will.  This can also lead to hopelessness in which there is no longer even a desire to lead life as fully as possible.

In some of the darkest most emotionally challenging times of my life, there was always the reality that the sun will still rise and set each day.  Birds will still chirp, snow will still fall, dogs will still bark and play, and life will be as it is supposed to be.

I did not always like or appreciate this reality as I thought my pain and suffering was the most important thing in the world.  But the other, more important reality was that there was also always someone who had it worse than me.

In Bob Marley’s song, it only takes three little birds beside his doorstep singing a sweet song to remind us not to worry.  That things will be okay.

Next time you hear a bird chirping, see if you can remind yourself that ‘Every little thing, gonna be alright.’

 

5. Give more and expect less

The saying ‘You reap what you sow’ gives the impression that if you plant 10 seeds that you will get 10 plants that produce whatever it is that they produce.  But it does not always seem like there is a one-to-one ratio.  Sometimes maybe only 9 or 8 seeds will produce fruit. 

If you are expecting 10 seeds to produce 10 plants, but you only get 8, there is a fair amount of room for disappointment.  But if you are realistic, and want 15 plants, then maybe you should plant 20 seeds?

Living with cystic fibrosis entails as much emotional and mental strength as it does physical strength.  Being set up for success is as important as being set up for failure.  What is it that your body actually needs to respond in the way you want it to?  Whatever that is, maybe give it 10-15% more.

This may seem impossible at times when treatments, meds and being sick comprises the majority of each day.  So it is equally important to focus on how much you ARE doing with a goal to add a little here and there, as opposed to focusing on what is NOT being done, and trying to accomplish it all at once until getting exhausted.

I think the point here is to be realistic, always aspire to be better and allow for a certain amount of forgiveness of both yourself and others. 

 

For most of these proverbs to have any effect on us, I think it is first and foremost to even know they exist, and then choose from there how you do, or do not incorporate them into your own life and perspective.  For me, there have been very conscious choices:  I have chosen to always strive to become better instead of bitter; I have chosen to plot my journey on achieving health and balancing my sails for maximum benefit; I commit to things, and if I can not commit, I accept that instead of intending to do things and not succeeding; I assure myself, and others, that things always work out even when it involves loss - we are better for having loved and lost, than never loved; and I have chosen to be realistic about giving just a little bit more, and allowing forgiveness when there does not seem to be 100% return.

Cystic Fibrosis, although at times seeming like an extremely dark cloud, can have incredibly beautiful silver linings.

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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.