Warriors in the battle against cystic fibrosis

Warriors of the past believed they gained immortality when the story of their heroic deeds was told long after they had departed this world.

I ask today: Are the lives of those with cystic fibrosis and those who battle with and for them any less heroic?  I say no.  No.  NO.

The fight against cf may not have the glamor of three-headed monsters, battles at sea, or other movie-worthy imagery, but the quality of the fight and story is the same:

1) It’s a battle of life and death with suffering, pain and agony and blood, or as the doctors like to say, hemoptysis.  The stakes of cf are as high as they come.  Fight every day to live on.

2) The battle continues over time – longer for some, shorter for others. However, living longer does not excuse someone from the brutality and torture of cystic fibrosis.

3) It takes an army to keep the enemy at bay.  If one looks at the fight against cf, success has come from the CF Foundation, an army of volunteers, doctors, patients, spouses of those with cf, and parents who believe cf is an enemy that must be defeated, that cf is as horrific and as evil as they come and must be sent into oblivion never to be seen again.

4) There are moments of glory and doubt.  What’s it like to recover some of your lost FEV1, raise 1 million or 100 dollars to fight cf, create a web site devoted to cf, or launch a new antibiotic that took years of research and red tape to get approved?  On the flip side, doesn’t the hero always have moments of doubt when they fear they cannot go on – that the cost is too great or the pain too much or the enemy too strong? And in that moment, we see him or her rise from their knees to fight another day and we know we can fight on, too.

4) Success does not always come from brute strength.  Odysseus defeated the cyclops through his clever use of language.  William Wallace in Braveheart defeated larger armies through trickery and traps on the battlefield.  Success against cystic fibrosis like many great heroic fights does not always depend on physical brutality, but rather one’s ability to outthink and outwit the opponent.  It’s a constant game of chess and looking for any edge or advantage possible.

5) It’s a story of love.  The story of cystic fibrosis may be a story of heroes, but it is also a story of a love unlike any other.  Odysseus longed to get home to Penelope; William Wallace lost and fought for his first love and gained another in the end.  Maximus in the movie Gladiator longed to see his wife and child again and it drove him in his final battles. The unsung hero of the story is the parent, sibling, spouse, boyfriend or girlfriend who carries on despite the odds.  What kind of bravery does it take to care for a child with cf or marry someone with cf?  Or, to carry on the fight against cf after the loss of a child or loved one?  What level of courage does that take?  It takes a love that even Shakespeare couldn’t put into words.

6) This is a battle for life, not immortality. The big difference today versus days of old is that this battle is about living.  Warriors wanted to die gloriously in battle for their names to be carried on.  The battle of cf is the opposite; it is about preserving life and every breath that comes with it.

7) The battle is not always a public one. Life goes on.  People wake up, they dress and go to school or work, come home eat dinner and go to bed.  The next day comes and the cycle continues. All the while, the battle against cf continues with a committed and crafty army fighting it.

Thank you to everyone who fights on behalf of those with cf.  The war is a long one.  The enemy is retreating and we are gaining ground every day.  But we must continue to run faster and we must strike quicker and we must find a way to save those who fight on day after day.  Dawn is coming and with it the end of cystic fibrosis’ evil reign.

It is at that moment that we will rejoice and go on with our lives as if nothing happened, the scars well hidden but always there and the stories of those lost on the battlefield always in our minds and hearts and on our tongues.

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